Tuesday, March 17, 2009

jonah - tuesday, march 17th

This will be another short post. I'm very tired.

I'm feeling sad tonight, overwhelmed by the reality of EB and scared about Jonah's diagnosis. Even if I act strong, I feel weak and inadequate. Jonah ripped both his arm bandages off at different times today, and I had to redress them (with a nurse's help) when he was on no pain medication. Stressful. Painful. Frustrating. Jonah was screaming, inconsolable. It was so hard. I just keep imagining that happening when Matt is at work, and Jonah and I are alone. How do I keep him from hurting himself and prepare all the gauze and bandages and redress his arm by myself? Overwhelmed.

He had to get extra morphine during his bandage change tonight, but settled down after we got done messing with his first arm. The hard part is the OT, not the dressing change... although he hates both. I did the dressings by myself while a nurse held him still.

Someone sent us an obituary today of a man who lived to the age of 59 with the most severe type of EB. Although it was encouraging to see he had lived so long, the obituary article went into detail about his fingers being fused together into mere "stumps", eating a liquid only diet, having to get one of his arms amputated, being shunned by his community, people thinking he had AIDS or Leprosy, and finally, him dying, disillusioned with Church and angry at God "who never gave him a break."

I wonder what the future holds for Jonah and how he will handle it all. I'm so sad for him and feel completely helpless that I can't take it all away. I know Jonah is changing lives and giving people hope, but man, sometimes I get really tired of being an "inspiration," and I just want him to be healthy and pain free and "normal". I want him to be able to wrap his hand around my finger without it hurting and without leaving behind a blood stain. I want him to be able to wear baby clothes and regular diapers.

I wonder if God has brought him into this world just to take him out again. I wonder if my heart could take it. I wonder if my faith really is strong enough to survive it if Jonah leaves. I miss Gabe. I'm broken tonight, praying for renewed hope and new mercies for the morning.

Jonah continues to be strong, and my God continues to be mighty. But I feel like I don't believe enough and don't have faith that's strong enough. I know that in my weakness, He is strong. But He doesn't promise us healing for Jonah or even his survival. He promises to work for the good of those who seek him and to make their paths straight. But what exactly does that mean?

I just wish, as I lie here in bed, that I had an 11 month old sleeping upstairs in our beautiful nursery and a 2 1/2 week old sleeping beside me in his bassinet.

I want Jonah to be healed. I want his pain to go away. I want God to snap his fingers and give me the healthy version of Jonah that I prayed for on my knees for eight months. Is that too much to ask?

I'm not angry. I'm just so sad and confused and broken. Please pray for us.

192 comments:

Tracy said...

I am praying for you right now!!!

www.asthestueweworldturns.blogspot.com

Janna Lynn said...

Aw, Patrice...I'll be continuing to pray for you. I don't know that I could ever be as strong as you sound like you have been and continue to be. Everyone questions and worries and wonders "why" at times. And that's okay. You and Matt are giving Jonah so much love and comfort right now and as you learn and prepare yourselves for the future that you will have with him, all you can do is your best and keep loving him! I know that these are just a few words that you'll probably end up seeing on here a hundred times or so...but just know that I admire you and am thinking of you all and praying and love you! God will get you through it all.

Kristine said...

Saying tons of prayer for you!!

Days like this, I imagine, are inevitable. BUT you also have good days. You're very strong and I have been NOTHING BUT IMPRESSED with your strength and determination.

It's a nightmarish,emotional roller coaster when your baby is sick.

I can't imagine why someone would send you that obituary. I know they meant well and I'm assuming that they wanted you to see how long he lived...but come on...read it first!

Jonah is his own little person. He will not be the same as this man. He will have his own life, his own story and victories! :)

Anonymous said...

I understand. I also know that God is good and He will get you (and I) through this. When I think of the possiblity of AJ (15 months) dying of RDEB I get scared - can I really do this? Remember (I am telling myself and you this) God will give the grace to get through each day - and not just dragging through but with his incredible peace and strength. He holds our children in his hands better than we do. We will teach our boys to trust Him and they will rise above the adversity just as the great men in the Bible did. We can trust God even when it doesn't make sense and even when it hurts. He knows what He is doing, He doesn't make mistakes. I pray that tonight He fills your heart with hope and peace as you rest in Him. Our Redeemer Lives!

Blessings, Barbara and AJ

Amy B said...

I can't give you the answers, and I know you are not asking for them- all I can do is promise to pray. I promise to intercede on your behalf, esp. now when you feel too weak to formulate your thoughts. Thankfully we serve (as you have stated already!) a MIGHTY, MIGHTY God. He already knows all that you have said tonight, and He feels the pain of every tear you have cried.
Again, I promise to keep my faith strong when you feel as though you don't have enough. Just remember, all He asks is for faith the size of a mustard seed. You've shown the world that you and your husband have faith WAY beyond that size!
Blessings & prayers,
Amy in WA

Anonymous said...

You are in my thought aand prayers

avbernat said...

In moments like this, where you are tried and your knees burn with pain kneeling at His mercy, remember that you are blessed to have Jonah and in all his glory and that you were blessed to have Gabe if even for so short of time. I know this is difficult for your, I know that it is so frustrating to battle with the unknown. Although everything around you is not "normal" God chose you to be Gabe and Jonah's mommy, he knew that you would love them and knew that you were strong enough to handle everything that you have gone through. You are a one of a kind mommy, a special chosen mommy, a unique mommy. There will be a day where this life you have right now will be your normalcy and you will prevail. Those dressings will become as easy as breathing, that wrenching twist of you heart when Jonah wails in agony will be comforted by your sweet voice and gentle touch. You WILL get to the point where you can hold him, where you can dress him, and you WILL find a way to prevent him from hurting himself. Hold strong on Him, draw strength from Him, and when you grow weary, you have thousands of us mommies out here reaching out to pull you up.

Sometimes these situations are more stressful when you are exhausted, rest and recuperate, relax and just enjoy your blessings. Tomorrow is a new day. But know that we are all here for you.


We love you all, always here when you need us, and we will continue to love on you, Matt, baby Jonah, and baby Gabe... We are praying for you all. ALWAYS!

fulksfam said...

Oh Patrice... If nothing else tonight, may you find comfort in knowing that your faith and confidence in God getting you through this, regardless of the outcome, is giving hope to the hopeless, strength to the weak, courage to the timid, wisdom to the inexperienced. My Casey will forever hear about Jonah, and his incredible mommy and daddy who taught his mommy and daddy how to love and have hope and faith when it seems worthless. You will never know how much you have taught me about being a completely selfless, Spirit-led mommy. We are praying constantly for God to keep healing Jonah's little body, finger by finger, toe by toe, from his soft blonde hair to the soles of his little beautiful feet. God started knitting him together in your womb; I believe that He just isn't finished with this masterpiece yet! Love you guys, Chris/Jessie/Casey

Tara said...

Aw, you are precious. You are a wonderful mommy to jonah and gabe and a wonderful wife to matt. Thank you for sharing your heart tonight. I know this is such an emotional journey, and wanting "a normal life is normal". I will pray for you now. Your faith is so strong and you are such a woman of God.

Anonymous said...

You don't have to be perfect, you don't have to be strong, you don't have to be an inspiration. You just have to be real. That post was very real, and for this I am grateful. God loves it when we are real and don't sugar-coat our true feelings. Hold onto those good days and they can hopefully help you remember that the bad days don't last forever.

You can add Brazil to the list of places where someone is praying for you. I'm here for a few months with my husband and 7 1/2 month old son. I pray for you and Jonah every time I nurse him, which is at least four times a day. I pray that you will be able to nurse Jonah too.

Amy and Sammy

Doris said...

Dear Patrice
I want to comfort you, but don't know how. God has been teaching me to turn the future, especially the future of my children, over to him, and letting me know that he loves them even more than I do. I will keep lifting you all up in prayer, as thousands of others are doing, and wait with expectancy to see what our God does.

Rachel said...

You have the right to feel discouraged. With all that is going on, it is to be expected that you would feel overwhelmed. I am sorry for that, and your grief and loss, and the fact that things are not as normal as they should be.
I believe there may be answers out there. There has got to be! I had read about a bone marrow transplant giving the best outcome possible, and I imagine the sooner it's done (carries great risks) with success it will heal Jonah.

Anonymous said...

Your posts are so honest and open, I feel as if we are there with you. I know what you mean about sometimes not wanting to be an inspiration, just wanting things to be normal, and is that so much to ask? I've been there myself. I also agree with the comment that fatigue makes us look at things differently, so be SURE to get your rest when you can. But there is still the emotional fatigue, and that takes a real toll, so I'm glad you have many people praying for you, and that you can look at cards sent to you, and maybe focus on other things from time-to-time to give your mind and emotions a rest (as hard as it is to do). Regarding the article, I just want to say that medicine is always finding new things year after year. Had I been born even 5 years before I was, I likely would not have lived, or would have had a MUCH worse life than I do. Babies born with Spina Bifida now have MUCH better odds of living better lives than I have. My point is just that science is improving lives by leaps and bounds--who knows what great things they will find to help Jonah in a year, in five years, in 10 years? It's not the same now as it was for that man 60, 40, even 20 or 10 years ago. Jonah's life can be much, much different/better.
Our family prays for you each night. Hang in there. *HUGS*

--Julie
Searcy, AR

Molly said...

Patrice,
You all are continually in my thoughts and prayers.

I cannot even imagine how hard this is, but your strength is amazing and Jonah will have another great day.

On a brighter note, I know the idea of having to deal with this at home is overwhelming, but I want to tell you that, my niece had EB and my brother and SIL felt she always did MUCH better when she was being taken care of at home. They felt that they were calmer, she was calmer, they took better care of her, her wounds healed faster, when they were all at home.

Not saying the hospital staff isn't amazing, but there is something about the care of a loving mommy and daddy that makes the difference. Because once they got the hang of the dressings, NO ONE did it as well as they did, and I'm sure you will be the same way, it's just so overwhelming right now, but you can do it, and you will be Jonah's BEST care taker.

So hopefully that is a helpful thought and renews your spirit just a tad.

Many blessings.

Anonymous said...

Patrice,
I cannot begin to imagine what you are going through right now. I found your blog through a friend's blog (she tagged yours onto hers or whatever you do on a blog) :) Anyway, I've been praying for little Jonah every day and I'll now be praying for you and Matt more also. Yes, you have touched a lot of lives in the past month, but I don't think any of those people can realistically expect you to be an "inspiration" as you called it. You and Matt are just trying to survive at this point; that much I do understand. It's hard enough being parents, but when you throw in everything you two have been through in the past year, well...my hat's off to you. I know you are tired, and down, and scared...and that's OKAY! God knows your heart. You aren't pretending with Him, so don't worry about everyone else. Just focus on your God and your family right now. I'm praying for a great day for all of you tomorrow!
Debra in TN

Jennifer W. said...

I kind of feel like sometimes people just need to hear this so here it goes... THIS. SUCKS! BIG TIME. It's not fair and I don't get it and I am so so so so sorry. This really BLOWS! You say what you need to say and get through it anyway you can. Praying for you friend.

Brooke said...

Praying for you and with you, mama! Thank you for having the courage to be real with us so that we can have the honor to stand with you in prayer and to know how to pray for you and for Matt. Lean into Him. He will not let you go, and His grace is sufficient.

Anonymous said...

Patrice & Matt,
It is completely natural to grieve - over the loss of 'normal' for you and your child and over all that might have been were he (and you) not burdened with this difficult disorder. We found that we grieved some at the beginning when we were first understanding what Caroline's EB diagnosis meant, but we've also grieved at little moments along the way... some of them heart-rending and known only to us. It's ok to grieve... it's GOOD to grieve, because it can help us move forward.

While we, too, rely on our faith to help us with the challenges EB brings to our family, some days we just aren't interested in being the 'hero' or having to thank God for the cards we've been dealt (even though in our hearts we DO thank God). Sometimes prayer just wasn't enough to help feel better after witnessing our baby's wounds. We felt like we were being ushered into some special parents' association of which we wanted NO part!

The pain of knowing you can't make everything better for your child is very real and very scary.

Eventually we have come to know that every life and every child holds its challenges. Some are physical, some emotional, some cognitive. Some are very visible, as with EB, and some are hidden or insidious. Every life has its gifts to offer, and it's impossible to know what those are yet for Jonah. I've come to think that one of my life's gifts is that I'm capable of dealing with all EB demands and co-parenting a child who sees life as her oyster, and not herself as its victim.

But all this takes TIME. Give yourself time and patience. Our hearts are with you, and we anxiously await Jonah's sub-type diagnosis.

Adrienne & Pete Provost
Palatine, IL

Anonymous said...

Sweet Patrice,
YOU are a mighty princess...and the Chosen daughter of our Almighty God! You are hand picked to be Jonah's mommy...you are perfect for his life. God does want Jonah healed...BELIEVE IT!!! Speak it out!!! Don't give in to the enemy and his snarls that he tries to discourage with. I speak from truth...I speak from experience...claim Jonah's healing...never ever settle for anything less!!! YOU are the perfect mother for Jonah...stand in the gap, and never EVER give up. God wants him healed...HE WANTS JONAH HEALED! Jesus healed every single person that he touched...he never denied one!!! Precious sister...Jesus, I lift Patrice up to you...give her strength...I lift up Jonah and we claim his healing in Jesus name...we ask you to cover little sweet Jonah in your blood and through your healing hands and we thank you for the amazing healing you will bring him. Take away Jonahs pain precious Father...Anything that is not of you we ask you to remove it and we thank you for the new skin that you are building right now in Jesus name...We love you Lord, we praise your Holy precious name. You are good...you are loving and you care. Thank you for Jonah and for your plan for his life. Use him for your kingdom and grow him in You. We stand firm and believe you for a full and wonderful life for Jonah. You know the blue print of his life and the great things planned for him...Thank you Jesus...thank you for hearing our prayers...Amen...
Patrice...I have 5 children...3 with life threatening diseases...God has healed my daughter from a horrible skin disease...God has healed my son completely on the operating table with a cat scan to prove the diagnosis!!! He is healing my daughter from a horrible disease as we speak...I know the suffering...I know the pain...Praise Him with all of your might...!!!! Praise, worship, and believe His truths and don't back down...I stand with you my sister...I stand with you! All my love...Lori

EdwinsonFamily said...

Praying for you. It's natural for you to feel as you do. I'm sure you are hurt, and it IS so confusing. God promises to be your HOPE. He promises to be your PROVIDER. He promises to be your SHELTER. He promises to be your HEALER. He promises that He LOVES you. And, He promises that it won't be too much.
He hasn't forgotten Jonah, and He hasn't forgotten you. He's going to be faithful. Do not fear.
May Jesus be with you and Matt as you learn more about Jonah's diagnosis. And, may Satan be bound while you wait. No matter what... Jesus is bigger than it all. And, He LOVES Jonah so much. He loves you and Matt so much. Cast your cares upon Him. Be honest as you pray... you don't have to (always) be strong. He is strong.
Sending love and prayers from Kansas, Joy

Anonymous said...

Crying with you. Hoping with you. Praying for you. Sending you hugs.
Jesus is there, hang on to him <3

Nikki said...

I clicked to your blog from another one, mostly because your son shares the same name as my oldest. So glad I did, so I can be just one of so many prayer warriors on your behalf. Our hearts are hurting for you, your husband, and your beautiful baby boy. Only our great and sovereign God knows the plans He has for Jonah. Your only job is to love that little one with all your heart... and as far as I can tell, you're doing that better than anyone I have ever witnessed. Please know that God will give you the strength you need to endure whatever comes... and it will come from Him, not from yourself. Praying for you today and always.

RejoicingComet said...

Patrice, I cried for you as I read this post. I have never walked in your shoes, so I won't say that "I understand how you feel", but just reading your very honest words I can feel your heartbreak. And my heart breaks with you. I will be praying for you, and Matt, as well as for Jonah. Each of you is so incredibly precious. May God draw you close and carry you through in His sweet, strong arms of grace.

Brianna @ Heart(h) Management said...

It's OK, Patrice. It's OK to hurt and cry and ask. I'm doing that with you and I'm not little Jonah's mama.

I'm lifting you up, sister. And, I'm hurting with you. When I think of how I don't even know you, Matt or Jonah and how I've come to love and care for you all as my fellow siblings in Christ, I think of how much more our Father's heart must break to see each heart in pain.

He's your Daddy. And He knew your days before one of them came to be. He knows when you sleep and when you rise. He perceives your thoughts from afar. And He's so desperately in love with you.

It's OK with Him. And He WILL hold you all.

God in heaven, I ask you with a broken heart, to be what Patrice, Matt and Jonah need. Show them your character. Remind them that you ARE good. That you are trustworthy. That your love does not fail. Set their feet on a rock, Lord.

Lisa said...

Patrice,

I think about you and your family daily.

I cry for you.

This situation to me is completly unfair.

It makes me sad to see that someone so devoted to her religion has to go through such tragedy.

It makes me angry for you.

How are you NOT supposed to question everything when you are given these overwelming situations to deal with.

I am not a christian by any means. I am an Atheist.

I am happy for you that you have your religion to turn to when you are feeling worn down.

You and your husband seem like wonderful people.

I am sorry that life has dealt you this hand. It sucks.

But you have a beautiful baby right now, today.

Try not to worry about what is going to happen. I know that is easier said than done.

Whatever is going to happen is going to happen.

If you worry it is not going to change one single thing.

You are doing a wonderful job.


Keep your head up and try to stay positive.

You are in my thoughts tonight.

Lisa

embaby81 said...

Sending you prayers!!!!
Em
From Australia

amber said...

Oh Patrice. My heart breaks for you. I wish so badly that you had two healthy babies too. I wish you didn't have to experience this incredible heartache. And yet, if this is any help, know that God will NEVER give you more than you can bear. He promises that. I am praying right now for God to comfort you and give you new hope. I will pray that tomorrow will be a better day, full of hope. I will pray that the diagnosis will be a good one and if it isn't, that God will give you the grace to bear it. You're right, He doesn't promise an easy life. But He does promise to never leave us or forsake us. Cling to that! Thank you for sharing your heart with us all. We're praying for you and Matt and baby Jonah!

amber said...

Oh and I'm so sorry for that obituary someone sent you. What a horrible thing to have to read. I'm sure they meant well, but I'm sorry you had to read that. hugs!

Christy said...

I don't even have the words to say. Please know that so many are praying for Jonah, you, and Matt. I pray that God will hold you in His hands tonight and give you rest. May you face tomorrow with hope in the one who loves Jonah even more than you.

Christy in AZ

Kirsten: said...

I'm praying for the 3 of you. I truly believe you all will get through this...no matter how tough. Keep your head up for you and Jonah!!! XOXO

Kristina said...

Patrice,
I believe in my heart that you are a strong woman. I also believe that God wouldn't have given you something you couldn't handle. You can, and will make it through all of these struggles. God gives us strength to make it through each second, minute, hour and day. Even if it we are on our knees praying and begging.
Keep being the great mom you are. Not everyone could do what you do.

I will take care of those prayers.

Laura Price said...

Dear Williams Family~

You guys are in the prayers of a 5th grade class in South Korea. I haven't shown them your blog, but I do read excerts to them and have shown them pictures of Jonah. We pray for him daily and they often ask for updates. We have prayed over other people and we fully believe that our God is the Great Physician and capable of anything.

I, the teacher, am from NC and spent a little while last year at Brenner's Children's Hospital with my one year old. It was nowhere close to what you are going through, but I remember the emotions and fears that I experienced.

Just remember that you are being prayed for and lifted up. God is in control!

God Bless,

5th Grade Class
Taejon, South Korea

Penny said...

You ARE making it through........ I am so sorry that any of this is happening, so sorry that you have to feel the pain of Jonah hurting. I know that God is carrying you through but I know it doesn't make the pain of the journey any less. Let yourself be human..... be upset, mad, angry. All those emotions are so normal and to be expected.

Just take it one day at a time. sending you lots of cyber hugs and support............ praying and praying......

Melissa said...

First of all, Patrice...and I don't know if someone else has already said this because I haven't had time to read all the comments...but what you are feeling is absolutely normal. You have so many unanswered questions, and so many unsettled feelings. Think about it...it was just over 2 weeks ago that you delivered a baby, which is an event large enough to shake up ANY woman's world. Then, you find out that your precious baby has a potentially life-threatening condition and is very medically needy. It's a lot to take in. Luckily, the God I know understands this. He understands that things like this can shake your soul more than any earthquake on earth could do. And He knows that you are going to go through days where you are strong and days where you are weak. Days where you trust and believe unconditionally in His choices, and days where you are going to question them and want to demand things go your way. Unfortunately, demanding won't get you anywhere...but prayer can and does. I've seen it. That said, does that mean that if we all pray hard enough we can make God do what we want? No. But, I believe that He hears us, and He takes things into consideration. I think it all hinges on what His plan is, and unfortunately, we cannot know that plan. Just try to hang in there and know that He understands what you're going through, and pray that he gives you strength to go through whatever He has planned...and the faith to trust that there is a reason for all of this.

Love & hugs,
Melissa

leigh anna said...

i'm thankful that you could be so honest with us! i am praying for you without ceasing!

Lisa Worthington said...

Dear Lord,
When Patrice is not strong enough to feel that she is an adequate child of God, please help those around her to lift her up. When the words of the many who love her, and who are faithful prayer guardians of her family, do not do enough to lift her up, please wrap your loving arms around her. Help her find signs of you daily, even in her time of suffering. And finally, please heal little Jonah!! We beseech you on hands and knees. Please let the diagnosis today be favorable. We beg of you to take away this child's pain that his mommy and daddy may hold him tightly without repercussion, that they may wrap their fingers around his. Dear Lord, please be with Jonah, and Patrice and Matt always, but especially today. In Jesus' name we pray. Amen.

Anonymous said...

I have no words of comfort to add that others haven't. I don't know why God has chosen this path for your family. I don't know why I'm crying as write this. I don't know you or your family. But I know that God holds you in His powerful and loving hands. Whether God brings Jonah back to His home in a week or in 80 years, God is in control. He loves you and loves Jonah. He created your heart and thus He created the emotions you're feeling. Don't feel bad about the emotions. Please don't. God loves you. Please always know that God loves you. In Jesus name I pray that God's will be done.

From Kentucky....

apettitt said...

Pray so very hard for you, Matt and Jonah. You are all so strong and God will take care of you!!! You are an inspiration to so many people, but more than that you are true children of God and he sees that in you everyday!! I love you and will continue praying for you! Much love and blessings!! April

Chris Hilton said...

Patrice,

As you well know I have four daughters, one daughter-in-law I consider a daughter and 6 grandchildren. We will not address the son and two son-in-laws. Although you and I haven’t been close over the years, that’s over. Since I only have one daughter-in-law and no chance for another I think I will just adopt you. Do you think Gerry will share? I know I will probably have many more grandchildren but what is one more? I will simply adopt Jonah as well. Pam says that I am obsessed anyway with doing everything in my power to help you, Matt and Jonah. I actually feel now like you and Matt, Gabe and Jonah are mine. My greatest fear in life, as with all parents, is something happening to my children or grandchildren. Now I am experiencing that for the second time through you. I don’t think that it could be any more painful if Gabe and Jonah were mine.

That being said please allow me to act like you are my daughter-in-law. I would be there this morning to give you a bear hug but apparently I have whatever Matt had and others are getting and have a fever this morning. It must be coming from the waiting room. Sorry, you can’t have a hug today but I will save one for later. You will simply need to imagine a hug from a distance.

I know that you feel alone dealing with this but look around you. Not only is there an army of people who care for you around the world but there is a small active flesh and blood committed commando group up close of friends and family. Consider your “gate keepers” everyone bringing you meals and moving in and out of that hospital. You can’t even begin to imagine everything going on behind the scene most of which you aren’t even aware of such as monitoring your blog comments and e-mail accounts, E-mails, phone calls, ideas, conversations, research, creating websites and planning for how we all band together to support the three of you. There are so many desiring to be involved from far away that yesterday there was talk of conference calls and video conferencing. I personally had communications yesterday alone from well over five states from house wives to cooperate executives. Your and Matt’s friends are even contacting me to ask what they can do to help. Perfect strangers from far away are offering to come here to help.

I can’t speak for all of them but I can speak for me. I am in this for the long haul as Gerry says the marathon not the sprint. I might be getting old and rusty, but I bet I can help change those dressings when you need help and Matt can’t be there. I also bet I am not the only one. Pay attention we are organizing around you not only to be your shoulder to cry on but we will also be your help when you need it now and down the road.

I know that you have an invisible friend you lean on but you also have very visible and active friends and family you can count on. If He chooses not to provide the miracle you and thousands of others of his followers seek. We will get up off of our knees and provide the help you need. This isn’t going to be easy and it will require much more than prayers alone and your and Matt’s four hands. We get it and YOU ARE NOT ALONE.

Love, Chris

Jackie said...

I am crying as I leave this post because I can't imagine what pain you are going through. We can only walk beside you and pray with you. God is the lifter of our heads...and I guess that reminds us to always just turn our faces to Him. We cry and pray with you daily. Thank you for sharing from your heart.

Chris Hilton said...

For those of you reading these postings and comments there is a second Facebook group (a spin off of the prayer group) to provide physical “off of our knees” support at:

http://www.facebook.com/group.php?gid=54868841663&ref=nf

We are also collecting e-mail addresses so we can have two way communications with everyone at: http://www.chrisdhilton.com/jonah.htm

Matt and Patrice do read your e-mails at: jonahawilliams@gmail.com

I am monitoring that account as well and forwarding time sensitive information to them.

Steve Weeks said...

Patrice, We love all three of you and will be by our side with whatever you need. Steve & Erin

Anonymous said...

Although I don't know you I have been with you since Jonah was born. I understand you would rather have a "normal" baby than all of us loving him and praying for all of you.
Sometimes we are lead down paths we didn't choose or even imagine. This path for your family isn't easy but you will make it. Jonah is depending on you to be strong and you are really amazing.
Don't think about the worst EB can be. Think about the best. There are always people that for some reason run a different course than even the doctors describe.
There are miracles, there is new genetic therepy, and there are new treatments everyday.
You are in my prayers.

Kelly said...

Thank you for being so honest. I think you need to have days like this in order to truly appreciate the good ones like the past few have been. Cling to those and hope for more and you will get them. Jonah obviously has big plans, or he wouldn't receive this much attention! He's going to be a little rock star, you just wait. :)

I pray for peace for you and encouragement in even its smallest form.

Kristie said...

I too am praying for you.

I am so what appaled that someone would send something like that to you. I think that is wrong and sickening.

REMEMBER YOU ARE NEVER ALONE...GOD IS ALWAYS WITH YOU.

Maybe when Jonah does go home u can have a home nurse some in to help you.

Keep your head up and know it all works together for GOD's GLORY!!

Kristie

Marie said...

Patrice, I know these are truly difficult times for you. As a grandmother of an EB child I feel your pain. All I know is that the love I feel for my grandson is so strong that I cry with you.

We don't know why God has chosen Jonah to have this horrible disease but he has. Maybe it is to bring more awareness to the need for research. I know this doesn't help make it any easier for you to handle and it's not meant to lessen your pain. Please know that Jonah, you and Matt have touched many people who love you and pray for you.

Let our strength and prayers help you through these moments when you feel so overwhelmed. If we could, we would all be by your side hugging, crying and praying with you.

Prayers from Texas

j3k said...

On bended knee praying, thats all I know that I can do to truly help.

Hearts, Hugs and many prayers
Marie

and many, many tears for all of you!

Anonymous said...

Patrice, the Buckleys are praying for you and Matt and sweet Jonah. We have never met but Sarah is dear to us. Here is a big loving hug from Knoxville and a promise to keep praying. Think of everyone who has promised to pray for Jonah standing arm in arm in a big circle around your family, with their eyes heavenward praying for God to give you strength.

Tabatha said...

"Ask and it will be given to you: seek and you will find: knock and the door will be opened to you. For everyone who asks receives; he who seek finds; and to him who knocks, the door will be opened.: Matthew 7:7-8
This verse says to me to be persistent in your prayers. Continue to pray for Jonah's healing and start praising God for all the healing you know he will do in the future. I pray this for you also!

Jennifer said...

Hi Patrice and Matt-
This is Elisabeth's sister here. :)
I'm crying with you today. I pray that the Lord's grace will be sufficient for you today and tomorrow. You have been through so much and your family is never far from my thoughts. How much closer, though, are you to the Lord's care. I pray that you'll feel his comfort as he holds you all gently in the palm of his hands. You all are doing a great job of caring for Jonah!
“May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.”- Romans 15:13

Robin and Paul Cummings said...

Patrice:

God sees and hears both you and Jonah. I know that Gabe is in heaven with God saying "WOW" I have a strong mama and I will see her soon because we all know that the times are drawing near when our Lord Jesus Christ will be coming back to this earth and gather all his believers. Do not doubt in yourself, Matt, and especially GOD! He has all things in his hand and he knows the future. Believe for a miracle and the direction that God wants you and Matt to go! God is an awesome God and everything that happens is in his perfect plan! You are in our prayers and thoughts

love

Robin and Paul Cummings

littleleaps said...

Patrice,
The family of believers (as well as many others) all want YOUR baby completely healed too. We want him to be the baby and then the man that God intends him to be. We will continue to pray for him...and you and Matt, and the extended family. You especially get my prayers. We want your mama's heart deepest desires filled.

I am part of an online support group for my daughters diagnosis. Last year during the worse for her, her doctors told me to stop reading it, or have a family member filter what was going on in others lives. I was too tender. Though I don't think that about you, you do have quite a following and though people may have good intentions, we all say things that can be hurtful (even accidentally). Please get a family member to filter your mail, email, and comments for you. That obituary you wrote about makes me madder than a hornet. I pray that person was meaning good. I beg you not to read the trash though, for your own sanity.

With much love in Alabama,
Liz

Sabrina Doan said...

Patrice and Matt,

My heart is broken along with yours. I can't imagine how you both are feeling. I want you to know that you are in my thoughts and prayers, especially today as you find out the type. You are strong (Jonah gets it honest), and do a wonderful job with Jonah! Please let me know if you need anything!

Sabrina

Beth said...

You put into words so much of what I feel as a mother. My son was diagnosed with Chiari malformation 11 months ago and we have undergone brain surgery and are possibly looking at more sugeries down the road. I don't have any answers because I'm still struggling with the "whys" and the "inspiraton". I never asked for any of this, I don't want to be someone else's inspiration. I'm praying for your sweet Jonah and you as you face everything that comes with EB. The only advice I have is to take things as they come, minute by minute. When you start worrying about the future (though it is impossible NOT to worry) that is when things get overwhelming. Minute by minute.

Anonymous said...

I know you have no idea who most of us are, but I so wish we could all just gather around you and sit with you while you cry and pray with you when you need it. My heart breaks for you and your family. I know God is Sovereign, He is in control and His will is perfect, but I also know that sometimes it is STILL very hard. Never doubt your faith. He is the author and perfecter of our faith so even when you feel like it's running low, HE is still there to even give you more of it. I've had to learn that myself during storms in my own life. I am praying for you today and I know God will hear our prayers.
Much love to you,
Daisy (Alabama)

Mel said...

May the Lord give you added strength during this time. I can only imagine what you are going through but I also know that nothing comes to us without going through the Lord's Hand's first. He knows all things; His ways ARE perfect - even though I know we don't understand - we have to remain faithful to the Lord! Upon reading the story of the man who died that someone sent you, I instantly thought of Fanny Crosby...the lady who went blind and yet she ALLOWED herself to be greatly used of the Lord. I know just be readying your post that Jonah is blessed with an exceptional family who has exceptional faith in the Lord. Stay strong...and when you think you can't carry on...the Lord will be there to help carry you through! Praying for Jonah!

Anonymous said...

GIRL!!! You are the strongest woman I know and one of the best Mothers in the world. I am praying for Jonah, you and Matt. Keep strong!!!

Rochel said...

We are praying for you. I think about you all day, and feel like I am constantly saying a prayer for Jonah. Every night as I put my child to bed we pray for you. It is at 7:30 each night, and I think you are changing his dressings at that time. My heart aches for you.
I want you to know that you are an inspiration, not because you are strong (which you ARE) but because you are so REAL in all of this. You aren't afraid to say that you are scared, and tired. You are a real person, going through this, and making it only because God is giving you the strength. It is inspiring to see what GOD is doing through you.
I tell everyone about Jonah's story, and many people are praying for you that don't write.
It is amazing how you can love someone you've never met, and pray so fervently for them.
Praying for you in Tampa.

Gene and Annie said...

Rest in the Lord and remember that it is okay to feel weak! He is our strength!

Melissa said...

It is natural for you to "grieve". You are grieveing for what should have been but isn't. Who knows why you were chosen to be Jonah's mother? God knows. He obviously has plans for the two of you. Plans that you may not understand right now and possibly plans that you don't want to understand right now. You are an amazing woman and Jonah is blessed to have you as a mom.
I don't have the answers but I do have the prayers and I'm sending them your way.

Channe said...

Patrice - I don't know you in person, but I think about you & Jonah daily. I wake up & check my computer each morning to find out Jonah's current condition. Please know that I am praying for you & I'm sure there are thousands out there who are too. May God comfort you like only He can. And Lord Jesus, please take away Jonah's pain.

Lauren said...

praying for you today. it's okay to be sad--it's honest and real and a part of the grieving process. even though you may feel weak and uncertain, your strength shows through in your ability to share these feelings with the world.

Anonymous said...

Patrice,
Here are some Bible verses to look up for some comfort.
Resurrection Hope John 5:28, 29
No more pain Revelation 21:4
Isaiah 65:17
Not God's purpose for Man to suffer - Genesis 2:27 Job 34:10
Sin entered into the world because of Adam and Eve's disobedience. Romans 5:12 Therefore, we are all born imperfect and suffer from the effects of sin.
Reason for hope that all men will be cured of suffering and death. Jesus cured sick while on the Earth (Gospel accounts). He will do the same in the near future when this Earth will be brought back to a paradise as God originally intended it to be when he created the Garden of Eden. This promised future includes perfect health and everlasting life right here on earth for obedient humans (Psalm 37:29)
James 5:6,7.

Rhonda

Laura said...

I would never try to pretend that I know what you are going through. I do know that how you are feeling is completely normal. Even if Jonah didn't have EB, the first month with a new baby is hard. It's all new, over whelming, and not part of your routine. For me, after the first month things started getting easier week by week, month by month. With having the added diagnosis of EB, you may feel week in your emotions, but I think this shows just how strong you really are. You're being a wonderful mom to Jonah, which is hard under normal circumstances and you've got additional battles and you are still doing it. I know life will be a challenge, but I believe the more you care for Jonah, the better you'll get at it, and the more "normal" it will feel. I'm continuing to pray for you all. Hoping tomorrow is a brighter day!

Laura S.

jaime s said...

praying for you especially today!

Anonymous said...

Hi Patrice, I thought you might like this song

The pathway is broken
And The signs are unclear
And I don't know the reason why You brought me here
But just because You love me the way that You do
I'm gonna walk through the valley
If You want me to

Chorus:
Cause I'm not who I was
When I took my first step
And I'm clinging to the promise You're not through with me yet
so if all of these trials bring me closer to you
Then I will walk through the fire
If You want me to

It may not be the way I would have chosen
When you lead me through a world that's not my home
But You never said it would be easy
You only said I'd never go alone

ya oh oh no

So When the whole world turns against me
And I'm all by myself
And I can't hear You answer my cries for help
I'll remember the suffering Your love put You through
And I go through the valley If You want me to

Mimi said...

"Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge Him, and He will make your paths straight."
Proverbs 3:5-6

It's ok to be upset. Trust in the Lord, He will guide you.

Praying for your family every day!

Kami

Anonymous said...

Patrice,
***Helpful Blog***
Please read the blog Ian's World (www.ianthom.blogspot.com)
Ian was born with a rare bone disease and his father has done a lot of research into the origin of birth defects.

Rhonda

Anonymous said...

I join in ALL the prayers and believe in the name of Jesus that Jonah will have healing. God Bless.

kimmie said...

who writes an obituary like that?? and as far as someone sending it to you... i wish well-meaning people would also be a bit less insensitive. technology has changed a lot since that poor man was born with a form of this condition in 1950 and SO MANY medical advances have been made. re-read your posts from the past couple of days and go through all of the pictures of your happy little guy earlier this week and know that among the setbacks, there will be many more "best day ever"s for Jonah and for you!
~Kimberly (Randolph) Waller

Anonymous said...

Please remember medical wonders have come a long way in 59 years.
The pt that you could take from this is that Jonah can live a long life and that it will be a better life because of all the advancement in medical wonders. It is such a blessing that he will have these advancements to help him through. A bigger blessing is a Mother who trust God.

Anonymous said...

I imagine that you will have many more weak/sad/confused days to come. It's so hard to focus on the good when the bad is so scary! We are all praying for Jonah. Don't feel guilty one minute for feeling confused...what good is faith without doubt? One day at a time...tomorrow will have it's own worries.
Love you...
Nicole R.

Kim from San Antonio, Texax said...

Oh how I wish I had humanly comfort for you right now, but I have no words. My heart just aches for you. You are such a wonderful and loving mommy and you will be able to take care of Jonah. As mothers we have it in us to do whatever we have to for our children. That is something very special about mothers and you are a wonderful, beautiful mother. You son is qorgeous, oh so cute! I will leave you with a quote frin another child's website tonight. He has had bone cancer twice and was just told today that now he is facing leukemia, he is 7, his dad wrote:
"And I will lead the blind in a way that they do not know, in paths that they have not known I will guide them. I will turn the darkness before them into light, the rough places into level ground. These are the things I do, and I do not forsake them."
Isaiah 42:16
God Bless You!

nancygrayce said...

I am praying for Jonah and for you and Matt...I come to see you several times a day and pray each time. So many are praying. God has a plan and I would say most of the time, we just don't understand it on this side of Glory. Your sweet heart is so tired, rest when you can. Love to you, Matt and Jonah...

Baby Bird said...

Praying for you all!
Love, Aimee P.

Anonymous said...

I have not commented before, but want you to know you are in my thoughts and prayers daily! We simply have no answers for why these things happen, nor why the Lord allows them to come into our lives. But He does promise to never leave us nor forsake us! As you continue to lean on him, He will sustain you with His grace. Know that there are MANY people praying for you. I shared in our Sunday School class about your situation and we are praying for you. Keep looking UP!! Even though I don't know you personally --- I LOVE YOU --- and CARE!!

Anonymous said...

Praying for you in Nebraska - for Strength, Faith, Courage, Hope & Healing.
- Melissa

michelle in va said...

I am praying for you today and always. Your story has so touched my heart. You and your husband have been through more this past year than most people go through in a lifetime. You have done it with such grace and faithfulness. Your faith in God is amazing. You were hand picked by God to be the amazing mommy you are to sweet Gabe and now sweet baby Jonah. Praying everyday that God heals sweet Jonah and gives you and Matt the strength to go forward each day. Just continue to give your love to Jonah, that is what he needs most. Continuing to pray for you. With love, God is sooo good!!!!

Anonymous said...

" Why are you downcast, O my soul? Why so disturbed within me? Put your hope in God, for I will yet praise Him, my Savior and my God."

Praying for you...
Camila, TX

Karla said...

I continue to pray for you every day. We not only pray for a miracle for Jonah but strength for you and Matt (although your strength and grace amazes me). Jonah is a fighter, that's for certain. I pray that Jonah has a good day today - pain-free and content. I hope today will be better for you all and I'm sending you love and happy thoughts.

Karla

Tory said...

I have been, and will continue to be, praying for you, your husband, and your sweet boy. -hugs-

libby @ ninesandquines said...

Patrice, I am praying for Him to take away your pain and your sadness. It is ok to wonder why and to have the disappointment and sadness...just know you have so many people sending prayers and thoughts your way that will hopefully bring you strength...you will have up and down days but we are all hoping that knowing we are here for you will make those down days a little bit better...

Storybook Woods said...

Thank you for being sooo real, I pray it brings you comfort. I know you feel like you are not handling things, but you are. You are doing such an amazing job. I have felt just like you. I promise there are better days, were you will not feel so desperate. I am praying today goes better. Clarice

teacheroftwos said...

I wanted to remind you that God did promise us healing. When he sent his son to the cross to bare our sins. "By his stripes we are healed" It is already done already paid for! I truely believe that your son will be healed there will be a cure found in Jonah's life time. It may not be in the time frame you want, but it will be in God's time. I also want to leave you with this versus " God has saved us from dangers. And he will continue to do it. We have put our hope in him. He will continue to save us". 2 Corinthians 1:10

Julie said...

Praying for your hurting heart....

Amber said...

Patrice,

I'm sorry. My sister Rachael lost her little girl (still birth) in April of last year and now her son born in his 24th week is fighting for his life.

Sometimes there are no words.

“…the Spirit also helps our weakness; for we do not know how to pray as we should, but the Spirit Himself intercedes for us with groanings too deep for words..." Rom. 8

LisaShaw said...

Patrice,

I'm sorry that person sent that email obituary to you. I'm sure they were trying to help but it probably made you feel worse.

I'm keeping you and your family in prayer. I pray for God to wrap His arms around you and give you strength. I pray for His hand of healing upon Jonah and for a MIRACLE to happen.

All my love to you and your family.

Anonymous said...

Our Sunday School teacher talks a lot about being transparent. Letting others see who you really are, and God in you. I am so impressed with your transparency here. No one expects you (or anyone) to be perfect and joyful all the time. But sometimes it is easier to fake a smile than to show your hurt. You are an amazing woman and child of God. Continue your faithfulness even when you have questions. I know that God has the answers, but it is hard to not know the answers ourselves. You don't always have to be an "inspiration", sometimes you can be the one who gets inspired. I am praying continually for Jonah, you and Matt, and your whole family. I am praying for that miracle that you so long to receive. I believe!!!

Anonymous said...

Mother to mother, my heart mourns for you right now. I pray for the Lord's strength for you right now. I pray He will hear the cries of your heart this day.

In Christ --
Chris

Chris Hilton said...

Patrice, Pam and I have discussed Deac this morning and are in agreement that you need your dog. I talked with Dad and he will make arrangements to bring Deac home a few nights a week and pick him up in the mornings. It's not like he has anything else to do. I told him Deac was like your teddy bear and that you could use one right now. Dad will be in touch with you to make arrangments and he may need a key.

Love, Chris

Jane said...

Dear strong, spiritual and caring Patrice, do not be ashamed to let your feelings go. You have blessed all of us with sharing Jonah's life and you really need to let go and show your feelings. I just wish I could give you a big (hug). You have been an inspiration to everyone. We do not know why these things happen, only God has the answers, but we know Jonah and Gabe were sent to you and Matt for a reason. All we can do is pray, and it blesses me to know so many are praying for Jonah, you and Matt. I am sure today has been on your mind and you have been constantly worrying about the results of Jonah's tests. May God bless all of you and keep you strong. Just take one day at a time and don't worry about tomorrow, just live for and enjoy today, we all should do this. I am sure you will have lots of help and people that love you all around. Praying without ceasing for all of you.

Simba9960 said...

Patrice-

All these thoughts you are having are perfectly normal. It’s sort of a grieving process that we quickly bounce out of and move on w/the mission at hand. We start being even more grateful for the smallest things in our lives...

One thing I can say is we are all a statistic. Leaving our house in the morning, getting into our cars, crossing the streets, eating, showering, playing, being tall, short, fat, skinny, race, etc…we are all some sort of statistic. It is easy for us to ask questions like “how long will my daughter (or son) be with us?”, “how much pain will he/she endure”, “will he/she walk”, “will he/she talk, sing, scream, eat, etc…”. Go ahead and ask them – then move on right to taking care of that gorgeous little man who is looking absolutely fabulous in those pics.

BTW I often found myself asking if I can really do this on my own…anywhere between 3-5 hours of dressing changes everyday. Seeing our little girl in so much pain but continue to repeat in my head this is for her own good. I asked if it was possible for our marriage to survive all of this and for us to continue to spend time w/our loved ones because of all the time it takes to take care of a child w/EB – or any other special condition for that matter. What I can tell you is we did manage to get through it and work things out. We were able to take dressing time down to 30 mins on a non-bath day and 1 hour to bath days. We bathe one day yes and one day no in the winter time and every day during the spring/summer time. We do a sponge bath cleaning on the “off” day. What has come out of all this is that I get to spend so much time w/my child – managed to work out her pain levels w/out medication – and really get to know her on a different level. I’m not saying that all mothers don’t have a connection w/their child but I do believe that because of my daughter having EB I am able to really know what’s going on in her day-to-day life. Since she’s in school now I tend to miss a big chunk of it. So many parents nowadays are so busy running around getting their kids to so many different events – ballet, karate, soccer, music, etc…that I think some are missing those real one-on-one heart-to-heart moments with their kids. I only say this because I’ve seen it w/my own eyes with those around me that have children. Not all of them but some…So there’s a BIG PLUS!

I’ll be thinking of you guys today as you manage to get some results.

As always our motto is “We DON’T have to learn how to live with EB…EB has to learn how to live with US!”

Praying for some comfort to come your way from sunny Miami….
~Sally

two red heads and two brunettes said...

As a mother my heart goes out to you. All of these feelings are very real and any momma would be thinking the same things too. Sometimes I feel guilty that God gave me healthy kids and I don't understand why good people like you, have to go through the challenges that they do. I pray for Jonah, but mostly I think about how you are doing. As a mom I've been scared about my children's health and future and remember how much it hurts to have worry and fear for them. And I'm sure that is only a glimpse of what you are feeling. Know that today, I will be praying for YOU.

Michele

Beth said...

Partice,

Praying that you find peace and acceptance during this difficult time!

Lean on your Lord, lean on those that have gone through this diagnosis before you, lean on Matt, on your family, and on strangers that lift you up in prayer!

Thinking of you!

Hugs!!

Anonymous said...

Your post today, full of such honest emotion, reminded me of Jonah's namesake -- he, too was sent on a journey not of his own choosing. He was given the difficult path to walk, not the easy one.

From inside the fish, in the darkness and hopelesness, Jonah prayed this prayer:

"In my distress I called to the LORD, and he answered me. From the depths of the grave I called for help, and you listened to my cry.
You hurled me into the deep, into the very heart of the seas, and the currents swirled about me; all your waves and breakers swept over me.
I said, 'I have been banished from your sight; yet I will look again towards your holy temple.'
The engulfing waters threatened me, the deep surrounded me; seaweed was wrapped around my head.
To the roots of the mountains I sank down; the earth beneath barred me in for ever. But you brought my life up from the pit, O LORD my God.
When my life was ebbing away, I remembered you, LORD, and my prayer rose to you, to your holy temple.
Those who cling to worthless idols forfeit the grace that could be theirs.
But I, with a song of thanksgiving, will sacrifice to you. What I have vowed I will make good. Salvation comes from the LORD."
I am praying this prayer brings you comfort today.
--jlmcq

Susan Hall said...

I just received an email from a friend about your son. I can't fathom what you are going through as I have not gone through anything remotely like this. I will pray for you and your family each day. God has a reason for each and everything that we go through, we don't know or understand the reason. I say this as I have a 17 year old daughter that was in a very bad wreck on January 23, 2009. She had to be cut out of the car and med-flighted to our local hospital. Everyone I talked to about the wreck said she shouldn't have been here as she was not responding at the accident. She ended up with three broken ribs and a bruised hip. It could have been a lot worse. Everyone said that God was riding with her. I say that God had his arms wrapped tightly around her to protect her. He has a reason she is still here. We will figure that reason out in his due time. I know that you don't understand his reasoning now, but know that he has his arms tightly around your son and your family. He will see you through no matter what.

Susan Hall, Lynchburg, VA

Anonymous said...

Patrice,
Please reach out to other EB parents. They will help you so much during this time. We have all been there. Please talk to some EB parents.

Kristin said...

Praying for you in Dallas, TX as you wait for your diagnosis.  I'm amazed and inspired by your strength, even at your most broken.  Jonah is a little doll!

Our Little Family said...

Hey- Just wanted to let you know that i am praying for you! I can only imagine what you are going through and what you have been through in the last year. I understand that your true faith is being tested and that is hard! I know your scared and sad! Being a Mommy is such a wonderful wonderful thing but it comes with heart aches... especially in the time when you feel "helpless". You are a strong lady and an Awesome Mommy! You and Matt are doing what you are suppose to be doing and that is LOVING Jonah, giving him comfort and praying for him! God knows what you can handle and will never give you more than that! Jonah is a strong boy! Keep your head up. God is working through You, Matt, and of course sweet Jonah! Still praying for you and your sweet family!

Misty Rice-Baniewicz said...

This is the kind of conversation God wants you to have with him. HE is big enough to handle all your hurt, anger and even disappointment....as long as you bring it to HIM as your father.

There is no words to make this all go away, so I wont try.

I will just stop right now and say a prayer for you.

Dear Father.

I see a sister in Christ hurting, tired, frustrated, helpless, discouraged, confused, thankful, worried, sad, happy and so much more....LORD. She is your child, and you know this more than I can tell you here in my own words. I just want to stop and come to you as MY father, praying for MY sister and ask for your gentle love be wrapped all around her and that little boy. Lord, its hurts too much to see a child in so much pain, or the kind of life he could live with all that pain. His mommy just loves him as you love us, Lord. That's all. You know this.

When she feels discouraged, even angry or week to believe any more... pick her up and hold her. Only you can make this better. We believe in you when you heal and give miracles, and we continue to believe in you when things don't go our way. That's when we are truly challenged in our faith.

Lord, I already know you have the pages written, the author and the maker of Jonah's story. We don't know this.... so we come to you and ask that you please bring comfort to this tiny, fragile little boy. He is a little person, and his body hurts and is in pain. It breaks my heart to see it and know he hurts that much. Lord, please help the doctors find a cure that can help comfort him, or even better Lord we pray for complete healing of this boy. Let him live to tell others about YOU healing him.

Please comfort his parents, and help them get the rest they need so they can have the energy to continue with this journey.

Lord, thank you for your love, your mercy and your blessings.

WE BELIEVE....help us with our disbelief!

Amen.

Sarah said...

Patrice,

My heart has been heavy for you since I read last night's post. I have truly been praying for you every few minutes as I think about you. I know your burden is heavy. I have prayed for God to give me some words of encouragement for you and he lead me to Psalms 91. The whole psalm speaks of going to the God Most High in our times of need, but the verse that I was lead to is verse 14. The Lord says,"If someone trusts me, I will save them. I will protect my followers who call to me for help. When my followers call to me, I will answer them. I will be with them when they have trouble. I will rescue them and honor them. I will give my followers a long life and show them my power to save."

I pray that God will show you his power to save today. I pray that he will heal your precious Jonah. I pray that he will comfort you and Matt and give you renewed strength to go through today. I pray for you to have strength to pray to God and to ask him to prove himself true to his words in this passage. I know he will show himself truthful.

Love from West Virginia.

Becky said...

Patrice - I know that no words can heal your hurt, but please know that this stranger is praying for you and for your sweet Jonah.

SS said...

Patrice, you are doing such a great job and you are strong and you will make it through this no matter what the diagnosis. I have cried with you through much of this, I can't imagine the pain you are all feeling. You will do what you have to do for Jonah.

Staci said...

Patrice,
I am praying for you. You don't have to be strong all the time and you certainly don't need to worry about being an inspiration. You are a mommy and you are hurting for your sweet baby here on earth and your baby in heaven. No one faults you for that.

It is all so scary and overwhelming and you may be doubting that you can do this but you can...and even if you don't think you know how...you will find a way, you will learn things about yourself and your abilities that you never imagined before. God will give you that, He will show you how to be the mother that your sweet Jonah needs.

I can see how that obituary you were sent was probably meant to be reassuring. Do not be worried however that Jonah would feel the same way as that man did. There is no telling what kind of family that man grew up in or if God was a part of that family. Take it one day at a time Patrice.

Celebrate all the victories whether big or small, and take the setbacks as they come with the knowledge that you will get through it and you will make it. Remember that you have many many people praying for all 3 of you.

Lisa said...

Patrice - I am new to your blog and to the story of your sweet little boy Jonah. I need to go back and read more, but know that my heart breaks for you. I wish I had some magical wand to wave in the air for you to make Jonah all better, to give you the strength that you need and the peace and comfort that you deserve, but unfortunately I don't. I do have many prayers that I can offer up for you and your sweet little boy and indeed I will keep them going. My heart goes out to you. Keeping you in my thoughts and prayers.

Hugs & Blessings,
Lisa (Journey Through Ifertility)
http://lifewithinfertility-lisa.blogspot.com/

Jill said...

Patrice,

My heart aches for you. And I share your pain and your sadness and confusion. A friend just reminded me that Jesus was a "man of sorrows." and I take comfort in knowing that He feels our pain.
I, as always, appreciate the raw honesty and emotion in your words.

I love you so much.

dg darling said...

Don't question your faith. You DO have enough faith. You are a wonderful mother. I am so sorry that things aren't "normal" for you and Jonah. I pray that his tests will come back showing that he doesn't have the severe EB. Know that we are praying for all of you. Praying that you will be able to find some "normal" with your beautiful boy and that he will receive relief from pain. Prayers that you will receive courage and strength, energy to keep going and that the doctors will continue to receive inspiration on how to treat your boy in the best way possible. These will prayers will continue. Don't be hard on yourself when you have bad days. You're only human and God will love you even on the hard days.

Stephanie said...

I have been following your blog and praying for your family since Jonah was born. I know loss and I know the depths of that pain. Just know that you are loved and covered in prayer. I'm lifting you up right now. God is in the boat with you!

Anonymous said...

I was recently worrying about some things in my own kids and my neighbor reminded me that "fear is present only when faith is absent". Cast away those evil fears! YOU can handle it! There is no such thing as a perfect worry free life. We all have to deal with something, though I must admit yours is a big dose of it. Please know that you can do it! You have proved it hour by hour. Lean on your friends and family. Good luck...

mini and brother said...

I'm praying for you and my heart is hurting with you.

The Barbee Family said...

i have no idea what to say but that I am praying for you.

REverhart22 said...

Patrice & Matt,

I am a friend of Matt's dad from working at Duracell with Gerry for many years. My son, Daniel, and I used to play basketball with Gerry and Matt and other guys from Duracell (a life time ago). I have been able to stay in touch with Gerry over the years and as a result have followed your blog since just after Gabe went to be with Jesus.

I am thankful for your willingness to share your heart, mind and emotions with us and consider it a privilege (and responsibility) to go to the throne of grace on behalf of Jonah, Patrice, Matt, Gerry, Debbie, Kim, and the other family members. I am blessed by our bond in Jesus Christ and my heart breaks for you. I cannot imagine being in your situation and circumstances nor can I imagine seeing my child or grandchild in Jonah's circumstances.

I am not wise enough to find the words nor would I presume to speak for God concerning His specific reasons and purposes for this great affliction that is on Jonah -and as a result on you, Matt and the family. I am learning so much by your witness and testimony. I am humbled by all of this.

BUT know that I am standing with you and praying for God to pour out His grace and mercy on Jonah - especially on Jonah, and on Patrice, on Matt, on Gerry & Debbie and on other family and friends affected by this struggle. A small group of people gather for prayer (Meadowview Presbyterian Church in Lexington, N.C.) on Wednesday nights and we have prayed for you and will pray for you tonight.

I've never praised God for the fact that my skin sticks like it does. I've taken it for granted. I've taken this wonderful blesssing for granted in my children and it causes me to stop and wonder how many other wonderful blessings I take for granted and NEVER even think about them.

May God give you peace, strength, hope and love. May he sustain your faith and increase it as needed. May He fill you with His power and wisdom. Let us continue to hope in him.

Randy

Shasta said...

I am so sorry, I don't even know what else to say. I wish I could help you & Jonah. He has been in my prayers since I first heard his story & will continue to be in my prayers.

Erma J. said...

My heart hurts for you because I know you are going through what my MIL called "living grief"
Erma

Anonymous said...

Patrice, I am praying for your family and have been following your struggles. I have been on awe of your faith and boundless energy. I feel that after the blog 3-17 that you are indeed human. Do not feel that you are less a mother,or less Christian because you finally voiced the questions and unburdened your heart. You are indeed real.
2 Shoes

Alison said...

Sweet Patrice....I wish I could give you a hug. Not that it would make anything better, but I just want to love on you and reassure you that God does have a plan and He will be glorified. I am praying for two things: that you and Matt would feel the Lord's peace and that God would do a miracle. I believe He will and it will bring so much glory and praise to His awesome name.

Blessings in abundance,

Alison

Kristen said...

Jonah will be at home with you and Matt soon. I just know it.

Natalie said...

In your brokenness, God loves you. In your questioning, and sadness and grief... God loves you. In your feelings of incompetence, God loves you. In your frustration with God and the world, God loves you. He is constant. Go ahead and speak those thoughts and feel the deepness of this pain. When you aren't sure you can love God, God loves you. He will be there for you during your times of doubt and sorrow and again on the other side.

God has sent you legions of encouragement. God has sent you parents experienced with EB to come along side you. God has sent you compassionate Drs. and those blessings will continue to flow even during your darkest times. God loves you.

Misty said...

I wonder the same things about my son. He has Cystic Fibrosis, & while the life expectancy for people with CF has risen, I know deep down I will PROBABLY live longer than him. & THAT is the pain that my heart carries everyday.

He is doing well with it. His doctor's are all amazing by his progress. I am too. I can't read any CF information, and stories, anything having to do with the disease bc it is a REMINDER that my beautiful son has a TIMELINE.

I am praying for you.

Zack Troop said...

Hi Patrice,
Your words and feelings were exactly my words and feelings 6 years ago. The only way we have survived has been to only take one day at a time. No more than that. We are now a healthy happy thriving family, and while we have suffered great loss, we have tremendous gratitude. Time will give you the ability to manage all that is on your plate.
KaDee, mom to Zack, 6 rdeb

Krakow talks said...

Your honesty is a gift to us all. All that you feel makes perfect sense, how could you not feel that way some times! Looking to the future is overwhelming. With God's help, take it one day at a time. Little tiny bites are more manageable. The future is not here yet, try not to go there. One day at time, one day at a time.

Holly said...

Patrice, I've been following your blog for a week or so, since my friend Amy told me about it.

I believe in a God of miracles. I am a Stage 3 Ovarian Cancer survivor. I've been doing ongoing chemo for 2 years. I should not have survived this long, and I've been told I'll be doing chemo for the rest of my life. I get treatment at Baptist, and I think of you every time I'm there.

Anonymous said...

Writing with tears after reading this last post... I'll be praying for you all today.

Even when you don't have the strength to keep holding onto Jesus, He will continue to hold you safely in the palm of His hand. You don't have to have huge faith, just faith like a mustard seed in our huge and wonderful God.

praying, praying, praying...

Love,
Katy

Anonymous said...

Dear Patrice and Matt,

I am sad with you. It's a good thing that I can close the door to my office and cry in private.

Today I pray specifically for healing of the hands and feet. I pray with confidence because I have seen God's hand in Jonah's healing process.

Barbara

Jenny said...

Patrice! My family and friends are praying for you daily! I can understand all your questions and concerns, and of course it can be overwhemlming at times sweetie! The hardest part for me was mastering the bandages too and it was very scary to have to do it by myself once my hubby was back to work, but you will master this and become confident within the first week of having him home, it becomes part of the daily routine its unfortunate that these babies have to even go through this in the first place though! With every posting and picture Jonah looks even more handsome than the last and i love his little golden locks, precious! You ARE AN AMAZING MOTHER and doing a wonderful job, Ive said this before and im going to say it again, PLEASE dont hesitate to call or email if you have any questions or just wanna chat with another young mother of an eb baby!! Jennifer Pickell

Victoria said...

Tricey - That last post broke my heart. I am constantly praying for you guys. Don't give up! Your little baby boy is STRONG and he gets that courage from the both of you. God is with you guys, I know it. Don't lose faith. You are a wonderful mother. That one photo of Jonah looking at you says it all.

love you!!
Vicky

Anonymous said...

Dear Patrice,

Many things about tomorrow, I don't seem to understand.
But, I know who holds tomorrow, and I know He holds my hand!

When you pass through the waters, I will be with you; And through the rivers, they will not overflow you. When you walk through the fire, you will not be scorched, Nor will the flame burn you. Isaiah 43:2

"Be strong and courageous, do not be afraid or tremble at them, for the LORD your God is the one who goes with you. He will not fail you or forsake you." Deuteronomy 31:6

Simply Trust for Jonah – Jeremiah 29 : 11 11 For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.
Lots of love

Sofi from India

Sandy Moore said...

My heart breaks for you Patrice. May knowing Jesus bring you peace. We all have questions and "wonders" at times like these. I'm so sorry for your pain.
I'll keep praying, promise.
In Christ,
Sandy Moore

Jennifer Andrus said...

I heard about the blog from the Shephards class @ Pinedale several weeks ago (I'm reletively new to that class)and I have been trying to keep up with your posts. I was not able to read the last few days until today...I scrolled down so that I could read the blogging in sequential order. My heart was soaring at the positive strides you recorded with regards to Jonah's pain and his eating. Then I could tell a cloud had decended as the reality that you would be getting the official diagnosis closed in. Please remember that the diagnosis on wednesday does not change was has been true these last few days and since the begininng of time. God is moving. He will continue to move. I look forward to witnessing it through your blog and hope to one day soon meet you, Matt and Jonah in person at church one sunday.

Erin Edwards said...

I know it is hard being strong--and our situation is a thousand times easier than yours has been and will be. There are going to be times that you question everything.

It just doesn't make sense to me why babies can be put through such suffering. Just from my experience in the ichthyosis community, these trials make for strong parents and even stronger children/young adults/adults. I'm sure they still have moments of weakness too, but they are amazing & extraordinary in ways other than their skin & because of it.

Keep strong & know that there are so many willing to help you with whatever you may need in moments of weakness. :) I can be at Baptist in no time even if you just want a milkshake! (that's what Ethan always wants to make him feel better when his skin is hurting:)

I'm sorry I don't have any words to take the pain of the worries away. I can say that everything I worry about is much less terrible than I imagined. You figure things out; you become adaptable. I think I'm a better person than I would have been if Ethan had been healthy. Honestly, he's the strong one. What he says about his skin keeps my faith:) I hope Jonah can do the same for you!

mommieof2 said...

I found your blog through another blog and just want you to know that Iam praying for your sweet boy. I can't even begin to imagine what your family is going through. I just want you to know that it is ok to not always be strong. You are human! Just know that you have the support of God, your friends and family and your blog family.

Abby Wall said...

I had these verses and I thought they might help. I hope and pray they give you hope.

"I remember my affliction and my wandering, the bitterness and the gall. I well remember them, and my soul is downcast within me. Yet this I call to mind and therefore I have hope: Because of the Lord's great love we are not consumed, for his compassions never fail.

For men are not cast off by the Lord forever. Though he brings grief, he will show compassion, so great is his unfailing love. For he does not willingly bring affliction or grief to the children of men.

You came near when I called you, and you said, "Do not fear." O Lord, you took up my case; you redeemed my life."

Lamentations 3:19-22, 31-33, 57-58

I'm praying for you.

danae said...

oh patrice! i don't have words, just an abundance of tears and love and prayers. i can't imagine loving any child more than i feel love for jonah. and he's not mine! i don't know how God does that, but i know it's through His Son that He bonds us to one another. so, in your mourning, i mourn with you. and in your rejoicing, i rejoice with you. and in all things, prayer. all my love to you all, danae<><

Anonymous said...

i'm so sorry for what you are going through. you are only human and you can only take so much. believe in Him and He will get you through the hard times. God bless you, your husband and your precious little boy. i'm praying for you.

Anonymous said...

I wish I could be with you right now Patrice as you feel helpless to help you realize no matter what you are doing a wonderful job. As I watch you in the hospital with Jonah I often wonder if that were me instead of you could I do what you are doing? I don't know, but I do know you not only are a wonderful mother for Jonah, but the perfect mother for this. God knew that too. He knew you would rise to the challenge and seek him for strength daily and He would supply. You are doing a wonderful job, I just wish I could be there in person to convince you today. I also wish I was there when you receive the diagnosis, but instead I will be praying for you with every thought of you today ( which by the way is a bunch).
Continually praying,
Stacey

Schultz Family said...

As I read your blog, I am deeply moved and committed to pray for Jonah each and every day. As I scrolled through your blog, I realized that your sister in law and I were sorority sisters at Samford together, and your story somehow seems even more real b/c of the connection. Thank you for your transparency and for the testimony of your life... the good and the bad. Praise the Lord that we serve a God of healing and miracles! Joining you in your prayers for Jonah's complete healing!

Amy said...

Praying for you with tears, from Tanzania, East Africa.

Praising God for your transparency and how you are allowing Him to use you to bring Him glory.

Amy

LoveLladro said...

There isn't anything I can say to make these feelings go away but know that I would hug you if I could and we will be praying for you guys daily!

Jennifer McGregor said...

Patrice, you have such a transparent, mother's heart. Continuing to pray for you and the fam.

Stephanie said...

I really don't have words tonight. I wish what you were going through right now could be changed in a heartbeat! I wish Jonah was home with you right now and your precious Gabe was with you also..I struggle with the "why's" all the time. I'm praying for you and sending love your way!!!!

Anonymous said...

Patrice, thank you for keeping it real with us. It's easy to get caught up in the fairy tale that Jonah's going to be cured tomorrow because he's had a couple of great days. Although there are technologies that will make Jonah's quality of life much better than several years ago and may even cure him, as Chris said, it' a marathon, not a sprint. Having run many marathons I can tell you there are moments that you want to give up, there are moments where you will question your faith in God, there are moments that you want to collapse from physical and emotional exhaustion, but you will not. You will persist with God as your loudest cheerleeder. He's cheering for you, Patrice, listen to His word. He's there. Dawn M.

Anonymous said...

Awww, Patrice, you sound so overwhelmed. You and Matt and Jonah have been through so much the past few weeks. So much information you have to sift though and comprehend. Emotions that feel like you are on a roller coaster. And you just gave birth, so your body is adjusting. Please try to focus on the positives...Jonah is eating; Jonah loves being held by you and Matt; Jonah had a PERFECT Sunday; Jonah is just so adorable and beautiful; Jonah is a fighter. I pray that the Lord gives you strength and holds you just a little bit tighter in His arms.

Gail
Annapolis, MD

Feldman Family said...

I'm not even sure if you will even get to my comment here as I think I will be #143 but I felt compelled to write to you anyway. I'm not really sure how I found your blog in the first place but someone had your button on their page and I've since run acrossed it on sereral more occasions. Anyway...that's not important. I just wanted you to know that I have and will continue to pray for you and little Jonah. I won't go into the details of my life this last year, but I can tell you that I know what it's like to have a baby in the hospital who is sick and who God chose to call home, and I have also had to say good-bye to two more of my children. Within this past year I have buried three children...and though you think you can't go on or you can't do it again, God proves to you that you can and He is with you every step of the way. He provides you with the strength you need, when you need it! I can't explain it any other way...I would not be doing as well as I am if it were not for Him. I know it's tough being "used" for God but He will show us the blessings of it someday! We just have to be willing to be used and keep trusting in Him and His will for our lives! Well I'll let you go...this got a little long and I'm sorry for that 'cause I know you have a lot to read and a lot to do for your little sweetie! Just know that there are a lot of people praying for your little one...that He will be completely healed down here on earth! You take care of yourself and if you ever need to talk to someone (I know you have a lot of people already supporting you) I am here. aligator312@yahoo.com

Take care and lots of prayers coming your way!
Ali Feldman
feldmancrew.blogspot.com

brightleigh said...

Hey, I wish I could be there to hug you right now, but the best I can do is this cyber hug ((((HUGS))). Go back and read your post from Sunday, Jonah's Perfect Day. I love you guys.

Much love and continued prayers,
Leigh

Julie said...

praying continually.

Megan said...

I cried right along with you as I read this post. I have been following your story for awhile and I just wanted you to know that I will add your name to our church prayer list. There are NO words that can heal your heart at this time. Only your faith in God will pull you through!

Megan

Heather said...

I'm new to your blog and wanted to let you know that I was praying for you, your family and your precious little boy. I'm a mom of two and my heart just breaks for you, Matt and Jonah- no child should be in pain. I'm also praying for Jonah's drs and nurses that they continue to be such a help.

Nicole said...

I am so sorry that you guys are facing all of this... My heart just broke as I read your latest posting. It isn't fair. Though I don't know you - I can tell much about your heart through what you've written - and I know you love God, your husband and your sons... Just know tons of people are praying for you today. Hugging you in my heart... The Bishop Family in Indianapolis, IN

Anonymous said...

http://www.startribune.com/lifestyle/health/19471139.html
I really don't know if I am doing the right thing ... but I guess sooner or later you are going to see this (probably you already have).

Jennie said...

I know that your strength and faith are being tested, but hang in there. I know you don't want to be, but you and your family are an inspiration. God and His plans are frusturating sometimes, especially when you know He can make it all go away. I can't even imagine what you are going through, but just know you are loved and being prayed for constantly! Praying for a good diagnosis today and a miraculous day!

Jennie Patterson

Aunt Joyce said...

Patrice - my heart breaks. I have tried to think of something that can comfort and give you strength. Hopefully, this will help. I have found that Bible examples are the best. Remember Mary and how she must have felt to find herself pregnant and unmarried in a time when that could have ended in her death. She trusted God because he had given her a very special child who had a very special purpose in life. She had one advantage that you don't and that is that God told Joseph what that purpose would be. You have to continue day by day without knowing exactly what Jonah's purpose is, but you have to continue to trust that God does have a special purpose for him as he does for you and Matt. Right now your purpose is to love Jonah, change his bandages when your heart is breaking, and let him hold your finger even when he leaves blood stained hand prints. Here again you can think of Mary and how she must have felt when her son was hanging on the cross and she saw his blood stained body ripped to shreds from beatings and yet she never abandoned him. I know that no matter what he has to go through, you will never abaondon Jonah. Your love for him is too strong. Your family will continue to hold up your arms as did Moses' family, as you fight this battle and God will give you the victory.

God Bless
I love you to Heaven and back,
Aunt Joyce

Anonymous said...

Just found it on your blog. Sorry for spamming. Keep on keeping on!

brittany said...

Trice, I hope you'll find comfort in knowing that it's not your faith that's getting you through this, it's Christ's strength. When faith is hard to find, his mercies will still come.

My words are so inadequate, but I just wanted you to know that I'm praying for your strength as well as his healing. Love you.

bmills

Sus said...

Dear Almighty Father, we lift up Patrice, Matt and Jonah, Lord. Guide their minds, lift their eyes to gaze upon the heavens and to know, Lord, that you are.

Blessed by the children, Lord.

Sassypants Wifey said...

Praying for Jonah.

Tribulation said...

o honey, my heart is breaking for you now as i read your post. how i wish i could fix it so your heart doesnt have to hurt so much. you may not realize this but you are an inspiration to all of us. i cant say for anyone else but i look to you and jonah and matt when i start to feel like i cant handle things. i read your blog and i realize just how small my problems are. i dont think i could handle things as well as you have.

you are a great mother, and its not because you bought him the latest toy or video game. you are great because you believe with all your being that jonah will get better. you have been leaning on Your Father and Gabe is right there, helping you to stay strong, because while Gabe is no longer with you, Jonah is. and what he needs the most right now is you. i wish i could be there in person and not be just words on a screen, because i know sometimes it helps to just have someone to talk to.

you are all still in my prayers and in my thoughts everyday. i cant look at my kids without thinking of Jonah.

Anonymous said...

That is just one sad case of an adule with EB. I feel bad someone sent that to you. I pray for you to find peace. I so want you son to be healed. i am sorry his hands are not geting better. I am sure when he comes home he will have home health care. A nurse will come to your home to help. You will become a pro soon and feel better about the dressing changes. it is too bad babies are so wiggley and he pulls off his dressings. As he gets older he will learn that it feels better to leave the dressing on. God Bless you.

Anonymous said...

Praying for you in Scotland.

Anonymous said...

Your post was so touching. Know that I pray for you many times throughout the day. Much love and prayers to you and your family from Georgia.

Tabitha in Bliss said...

We are praying and uplifting Jonah in our hearts.

Sonja said...

Every night as we go to bed I read to my husband how little Jonah is doing. Having never heard of EB before, we both think it is such heartwrenching, painful struggle to have to go through with a tiny baby, both for him and for you his parents. We will pray for strength for you each day, for courage to do what you need to do for him, and for a cure to be found.

Shelley said...

I'll be praying too. God hears Every prayer spoken and unspoken and I know that he hears every one that has been said for Jonah and your family. God bless you all.

Merri said...

Patrice, I am so sorry for what you are going through - it really isn't fair. I've been praying for you & Matt to have continued strength, peace, stamina, joy, comfort, courage...the list goes on. I know you must be so sad for Jonah - reading your words brought tears to my eyes.

I'm not sure what God is going to do through Jonah and your experience, but he will no doubt do something amazing. He created Jonah with a purpose - Jeremiah 1:5 - "Before I shaped you in the womb, I knew all about you. Before you saw the light of day, I had holy plans for you: A prophet to the nations— that's what I had in mind for you" (from the Message translation).

I will continue praying for you and Matt and for Jonah's complete healing. I hope tomorrow is better for you all. :)

lesliemarie said...

Today as I was driving (I'm a home health PT) there were 2 times that I really felt the urge to pray for you guys...so I did. (Don't worry...I didn't close my eyes while I was driving!) :) Remember that when you need the prayers the most, God will call us to pray for you. You don't even have to ask! :) Thanks for being real and sharing your heart with us. Praying for you in Chattanooga, TN

Anonymous said...

Patrice,
Even though we are following your story, we do not expect you to be some superhuman. Of course it should be easy, and you should not be famous because of such heartache. It's not fair, I think that is why I am so compelled to pray for your family. You and Matt are so young and have such potential as parents, if you could just bring your baby home and raise him. I'm sorry for the loss of Gabe. I'm sorry there is such a hard outlook for so many children with EB.It WILL get easier. You will have many happy days, many days where you dont even notice the EB. Jonah wont remember the tough times right now.
Your life will go on. Jonah will come home and you and he will learn to live with the difficulties of having EB, because The Lord as shown you how hard life can be ealry on, and how precious it is.
As a parent, we will always ache for things our child goes through. We will always be worried and always need to grow in faith.
I am a stranger, but I know you have enough faith. Thank you for being honest in your blog, it allows us to pray for you more specifically.

Anonymous said...

As a mom to a 13 month old baby who has a severe heart defect I can relate to your questions. First of all you are not crazy for thinking what you are. It does not make you a bad person or Christian for wanting these things. Secondly you as his mother need to think about the pain and suffering your child experiences daily and will continue to for the rest of his life. Only you can decide when enough is enough and trust me the doctors will not draw the line in the sand. You must. My child stayed in the hospital for six long scary months and we let the doctors do what they thought was best. We did it to keep her alive. We did it because we didn't know any better and we were selfish. We wanted her with us. Knowing what we do now would we do it again? I can honestly say no. Heartbreaking but true. I realize this is not a post that your readers will like but it is a side of things that need to be examined, poked at even if it hurts. Having a medically fragile child changes every aspect of your life and until you live it you can't explain how complex it will be. Do your research, talk to other moms with EB (including the moms who lost their children) and pray. Talk to God. Yell at Him and tell Him how much all this sucks. He can handle it. Then surrender it all to Him.

Sarah @ Thrifty Decor Chick said...

No, it's not too much to ask. You have been dealt much more in a short amount of time than some deal with in their lifetimes. I know you are not angry -- but it's OK if you ARE. It really is. I am praying for you and your family. I can feel the ache in your heart and can't imagine all you must be feeling -- joy, hope, pain, pride, sadness, confusion and love all at once.

Alex(andra) said...

I very much wish I had the words that could help console you... All three of you are still in my prayers. Jonah is such a strong little boy!

Marlo said...

My daughter Anna died at the young age of 5. I would often look at other little girls and wonder why God couldn't have given me a healthy girl. It took me a while to get over that and to realize that instead, God had given me an incredible, insightful, and intelligent girl.
God has given you a gift wrapped up in Jonah. I pray that someday you will find out what it is.
"Don't be afraid, for I am with you. Do not be dismayed for I am your God. I will strengthen you. I will help you. I will uphold you with my victorious right hand." (Isaiah 41:10)

Nicole said...

I'm sorry. You don't know me but I wanted to say I'm sorry your heart hurts. I see here that there have been 168 people encouraging you and you need that desperately but sometimes you just need someone to say....I'm sorry. I'm praying for you and so is my family and friends.

Katie said...

I really do not have any words right now. All I can say is that I am keeping you all in my prayers. Your son is so beautiful, precious.

Anonymous said...

My heart breaks with yours. I am praying for you!

- a sister in Christ and fellow mommy

Jude's Mom said...

Your post was so touching and your inspirational "story" breaks my heart. But looking at pictures of Jonah just makes my heart feel so warm. He is precious. I don't see the hurt that you are feeling..I only see a beautiful & very strong little baby boy. I'm thinking and praying for you, Jonah and your entire family.

michelle said...

No words, my sister. Praying for you, Matt, and Jonah right now.

The Lord Family said...

Thank you for being transparent and for sharing your needs. It is an honor to pray for you. My heart aches for you.
Please know that people are crying out on behalf on your sweet family!

Katie said...

I'm proud of you, David. And guess what... I still love you. I miss you and Matt and that sweet little face.

Tracey said...

I am praying for you and your precious baby. My heart breaks for you. I can't imagine. God will take care of you... Just give it to God...

Anonymous said...

May God Be with you tonight. If you get a chance to look and you have not already heard this song, please look up Allen Asbury's song "Somebody's Praying Me through" It is such a sweet song and so fitting for you guys. We are all trying to pray you through this, even though many of us don't know you or your sweet family.

Cristi said...

Gosh I remember feeling like you do now when Avery was so tiny and we were so unsure of our future with her. I found a poem that we could relate to. Maybe you have heard it. I am sorry it is going to make this post really long. So come back to it when you have time.
When you're going to have a baby, it's like planning
a fabulous vacation trip - to Italy. You buy a bunch
of guidebooks and make wonderful plans. The Coliseum,
the Michelangelo David, the gondolas in Venice. You
may even learn some handy phrases in Italian. It's all
very exciting.

After months of eager anticipation, the day finally
arrives. You pack your bags and off you go. Several
hours later, the plane lands. The stewardess comes in
and says, "Welcome to Holland!"

"Holland?!?" you say. "What do you mean Holland? I
signed up for Italy!! I'm suppose to be in Italy! All
my life I have dreamed of going to Italy."

But there's been a change in the flight plan. They've
landed in Holland and there you must stay.

The important thing is that they haven't taken you to a
horrible, disgusting, filthy place full of pestilence,
famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you
must learn a whole new language. And you will meet a
whole new group of people you would never have met.

It's just a different place. It's slower-paced than
Italy, less flashy than Italy, but after you've been
there a while and you catch your breath, you look
around. You begin to notice that Holland has
windmills; Holland has tulips; Holland even has
Rembrandts!

But everyone you know is busy coming and going from
Italy. And they're all bragging about what a wonderful
time they had there. And for the rest of your life,
you will say, "Yes, that's where I was supposed to go.
That's what I had planned."

The pain of that will never, ever, ever, go away
because the loss of that dream is a very significant
loss.

But if you spend your life mourning the fact that you
didn't get to go to Italy, you may never be free to
enjoy the very special, very lovely things about Holland.

I dont know if it speaks to you like it spoke to us or not. Just know you, and sweet Jonah are in our prayers.

Crystal said...

Praying for you and yours in North Carolina!

Michelle said...

You are an inspiration to me. I will continue to pray for all of you. I just want you to know how much you've inspired me. God Bless all of you.

Anonymous said...

Continuing to pray for you and Jonah. Love the new pictures...Jonah looks so sweet. I hope things get easier very soon.

Stacy said...

When you are weak, there are thousands of us who are literally interceding on your behalf....praying our hearts out to heal your precious Jonah.

There is nothing harder in this world than to have a sick baby. My firstborn son was born with a hemangioma under his right eye..it grew very large in a very short amount of time, and and we had to tape it down with steri strips so that it didn't cover his eye. For the first few months, we didn't know forsure if he had the worst type of hemangioma...one that grew deep into his skin. It felt like a nightmare, especially because I spent way too much time googling info., but, I can tell you that I put all of my trust and faith in God. And, He absolutely carried me through the hardest days. Without a doubt.

Even though we will never fully understand suffering and sickness, I do know Jesus will lead the way for you. He will make sure that you will be able to handle every obstacle that crosses your path. He loves you, and Matt, and Jonah more than you could possibly comprehend.

I will be on my knees on your behalf. God bless,
Stacy

Amanda said...

Praying for you and your family.

Blessings,
Amanda

Desha said...

Don't feel like you have to be superwoman. It is okay to want those things, to grieve, to not always be strong or have faith. Please know that I am praying for you, and remember, God's hands are bigger. He can handle it all.

Megan @ Hold it Up to the Light said...

I can't even imagine how you must be feeling, but as hard as it is for you to understand it (and me, too)....God knows just how you feel. And he doesn't blame you for being scared and hurt and angry and grieving....he expects it.

And he's there, to pick you up and carry you. I pray you let him carry you and know that we are praying for you every step of the way.

Connie Mae said...

OH GOD up in HEAVEN, please hear Patrice's cries! We know God that you are the ULTIMATE PHYSICIAN!! We know you are a GOD OF MIRACLES!! We know that you do ALL THINGS ACCORDING TO YOUR PLANS!! I plead with you now on behalf of Patrice, pleaase LORD place a HEALING TOUCH on Jonah right now where he lays! Give him a day with no pain and a day where his mommy and daddy on this earth can hold him and comfort him without fear of hurting him! Please Lord find it in YOUR WILL to completely and wholly restore Jonah's skin! May he have testimony to share with the world what YOU HAVE DONE for him and through him!! Please Lord, hear his parents cries! Thank you LORD in advance for the HEALING you are going to bestow upon JONAH!! Thank you for giving the strength that this family needs! You are OUR GOD, MIRACLE WORKING GOD!! Thank you Lord once again!! AMEN!!!

Vonda said...

Patrice, I can't imagine what you are going through right now. My heart hurts for you...I don't have the words...I just want you to know I am praying for you that our Savior will give you exactly what you need in your time of need. May you rest in the shadow of His wings and may you find a "peace which passes all understanding."

The Nicholsons said...

Praying for you and your family. I hope these times don't leave you feeling lost, but reassured God is in control. He will look out for you and give you hope. My heart goes out to you! You are such a strong person- its truly amazing!!!

Beverly said...

Dear Precious Patrice,

Thank you for your openness and honesty - for saying so when your emotions are raw and you are feeling overwhelmed. It helps those of us whom God has called to pray for you to know more specifically how to pray.

Sometimes there simply are no answers to our "whys". You are walking through the "valley of the shadow of death" as few people ever have to. I am praying that Jehovah Rohi, the Shepherd Who so tenderly cares for you, will lift His rod and chase away the spirit of hopelessness that is nipping at your heels. I am praying that He will use the crook of His staff to reach down into that crevice of fear that is trying to hold you and lift you out and up into His arms. I am praying that His rod and His staff will be to you the comfort he desires them to be in this valley season as you trust both His protection and His provision.

Oh how your Shepherd's heart is hurting with you, Patrice. He loves you with an everlasting love and is bottling every tear you shed as a precious remembrance for Himself. You are His inheritance and I know He is so proud of the way You are trusting Him in this great challenge . . . even in the overwhelming times.

Martin Family said...

Oh Patrice, He hears you. I pray that Jonah will be the Miracle Child of this illness. That your story may inspire for decades, those who have babies born with this. You know the footsteps poem? Well, this is the time when there are only one set of footprints in the sand. Your Father, and Creator, is carrying you through this. He has given us all opportunities to love and pray for you, and to grow from YOUR growth. The Bible says that faith the size of a mustard seed can move mountains!

Millie said...

What you are feeling is normal. I feel the same way sometimes about Colin. Although their lives do inspire, I wish Colin could live pain free also, be a normal child, be free of his wheelchair and the stares. I'll be praying. You are not alone.
Millie and Colin-HLHS