Saturday, April 11, 2009

come sweet sunday

I'm feeling weary tonight - physically and emotionally. I suspect Matt is too, but don't want to speak on his behalf. All of this just feels like two steps forward, three steps back. Every time I feel like we may be in the clear - there's momentary respite - it seems to fall apart.

Four out of twenty-two comments tell me I can't trust doctors who don't know about EB. It's too much. I have no baseline for Jonah's care. I worry all the time. It's hard to sleep. On one side I get reassured that things look good, on the other, I get a ton of heavy, new things to worry about. It's exhausting.

I'm trying to arrange to see the ENT early next week for Jonah to get scoped. I've spoken with Geri at DebRA and am requesting that our ENT to talk to Cincinnati's ENT. Until then, we just pray and hope that things really are okay. I inwardly freak at every weird breath, funky sound, overly red blister, smelly discharge, half-finished bottle... it's too much. I want to trust that God is going to make it okay - that He's going to protect Jonah. I want to hope that God would not have allowed Jonah to survive thus far - to have touched so many lives - just to take him away. I want to think that it's just blisters, nail, hair, and teeth problems. I want what I'm not promised. I want a plan that's not mine.

I think I may take a break from blogging for a few days. I may wake up tomorrow and change my mind completely, but I just want to be sad and confused and frustrated - and I don't feel like I have any more words for now. I hope that you'll continue praying for our family. It's all I know to do. I have control over nothing else. I just pray when I can and trust that you guys are praying when I can't.

I hope you all have a peaceful and meaningful Easter. On a day when we celebrate His saving grace - His overwhelming love - His gift of hope - I pray He will show my sweet baby new mercies of a similar kind. I pray that our Sunday is coming.

Please pray for Jonah.

70 comments:

Anonymous said...

We are praying and we will continue to pray. Take all the time you need. Call all the medical people you need to call until YOU feel better about you and your care of Jonah. Follow your "momma instinct". That's what you CAN trust, and trust in God. He is here and He has a plan. I will check back. It is just a habit at this point. But take care of you and blog when you feel like it.
Jennifer in Southeast, NC

unzen said...

Take a break. We will be praying for you all. It is so hard to be a mom and not have all the answers. Trust your self. What you feel is normal. Peace be with you and your whole family. Thank you for shareing your blog with us. If we do not hear from you we will know things are the same but please if need extra prayers let us know. God Bless you.

melanie said...

You and Matt are Jonah's greatest advocates. Trust yourselves,your family and friends who know and love Jonah. We are with you as you face each challenge. The burden is great, but the prayers continue and God will sustain you. I love you all and look forward to snuggling with Jonah again soon.
"Au-Me"

Raising Olives said...

Thank you for sharing Jonah's journey with us this far. Please know that we will continue to pray even while you take your break from blogging.

Please enjoy this time you have with your precious baby. It goes so quickly, enjoy the sweet smallness of him while he is still small.

Just rest in the Lord, wait patiently for Him and He will give you peace.

My prayers will continue to head your way!

Blessings,
Kimberly

Alisa said...

Oh you sweet, sweet family! We are still praying daily for all of you. I know I keep saying this but when I read your blog sometimes I feel like I'm reading my own thoughts. Although our baby doesn't have EB she does have many medical issues and we have dealt with so many of the emotions you are feeling. However, I still don't know exactly how you feel. But I can pray for peace, comfort and rest for you. And for healing for your sweet baby boy. I've never bought into the the phrase, "The Lord won't give you more than you can handle", because there have been so many times over the last few months that I've felt like I can't handle everything. However, I know that whatever He allows no matter how difficult, HE can take it when we can't.

MrsD said...

Take one day at a time and take all the break you need. We will still be praying...and we pray not just for Jonah but for you and Matt also. It does seem like there's such a steep learning curve to know Jonah and EB...but you're well on the way! I hope that tomorrow will bring refreshing to you.

Tiffany said...

Patrice - I have not posted recently but wanted to be sure you and Matt know that we are still praying for you all and thinking of you constantly. Trust in your instincts and do what you feel is necessary for Jonah's care. I can only imagine the roller coaster of emotions that you must be on. We love you all! Keep the faith and we will keep on praying! Happy Easter! Love, Tiffany

Leanne said...

I hope it brings you comfort to know that we are praying for you, and will keep praying for you. Jonah is & will be covered by prayers from believers around the world.

But take even greater comfort in the fact that "...the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words. And he who searches hearts knows what is the mind of the Spirit, because the Spirit interedes for the saints according to the will of God. And we know that for those who love God all things work together for good, for those who are called according to his purpose."

Praying for Jonah, and for peace and rest for you,

Leanne in GA

Ronda said...

Prayers continuing. Take a break and rest your mind, body and spirit. Trust your feelings about Jonah, your mommy instincts are very strong, and that's great! Thinking about you everyday and praying for peacefulness in your heart.

Also have to add that Jonah's Fuzzi Bunz are so cute!

Happy and tired said...

Praying, praying, praying. Father, protect this family from fear and exhaustion. Give them strength each and every hour.

Praying praying praying for your beautiful baby boy.

Jamie
Nashville

Stacey said...

Take all the time you need. We will all br praying A TON. You guys are Jonah's best advocates and He chose you to be Jonah's parents for a special reason. You are the BEST!!
We'll be lifting you up,
<><

Laura said...

It does seem like things are so confusing. I would be feel weary just like you in the same situation. You want so much to be doing what's right for Jonah, but at the same time it's hard to determine what that is. I'll be praying of course for Jonah's healing, but also wisdom and peace of mind for you and Matt. I still think you are doing a great job!

Laura S.

Erin Edwards said...

I hope you have a wonderful Easter. It's good to take a break sometimes:) It's so scary when you are the expert on your child. It's overwhelmingly scary. If you find an answer, let me know:) Follow your gut and what you know. Your instinct will tell you so much. ::hugs:: Would you like me to drop by dinner one day next week? Would that be helpful? If not, what can I do? Let me do something for you to ease your load, please. You have my email and number.

Vicki said...

I don't think that I have ever commented, but I have definitely been praying. Whether you post or not, I will not forget to pray. You, Matt, and Jonah have become regulars in my prayers each day and sometimes multiple times a day when the Spirit leads me to fall to my knees. Focus your attention to your sweet family!

Amy said...

Tricey,
We haven't talked over the weekend, but know all of you are never from my thoughts and I pray for you. I'm sad that this is so much spiritually, emotionally and physically. Hopefully we'll talk tomorrow. Much love and hoping you're resting peacefully tonight.

j3k said...

I will keep you, Matt and Jonah in my prayers continuously. I can't imagine how frustrating, mind boggling, aggitating, emotionally draining and just down right pissed you must feel right now. I am so sorry for what you are all having to go through. I wish I could take all the pain and hurt away. Your heart will lead you in the right direction. You have done a great job with Jonah since conception and I know you will continue to make all the best decisions possible. No one knows for sure what the future holds for any of you but I will pray for a happy, healthy future for Jonah.

Hearts and Hugs
Marie

Anonymous said...

Patrice.......you take all the time that you need away from blogging. Rest in the knowledge that you and Matt and sweet little Jonah will be lifted up in prayer by hosts of people who love you and cry out to our loving Father on your behalf.

Candis Berge said...

Another "stranger" in the family of God praying for you.
And praying
And praying..

Wendy said...

Praying for you and your family. IF you decide to take a break from blogging we will all be here waiting for when you feel like coming back. Take all the time you need what is most important is you and your family. So breath in and out and take the time you need!!!

Darcy said...

Please take time for you and your sweet little Jonah. We will not quit praying for you and your family.

God is good he will take care of you and guide you to where you are supose to be, (doctors and such) He knows you and knows how strong you are you can do this.

Rena Smith said...

I stumbled across your prayer site on facebook, and now I loyally check on you guys and feel I know you. I feel such a kinship to you because your son is 7 days younger than mine, and was born in the same hospital, please please please take time for yourself, my son had to go to NICU for just 2 days and I know how bad I felt, and how it cause me to start having anxiety attacks. I can see that in some of your writings, let everyone that will help you guys, and just trust that the Lord would never put a plan into motion to hurt you and love your little boy with all your heart! Don't let those bad thoughts bother you and take away and of your joy... We all are praying for you guys :-)
Rena

The Wells family said...

My oldest sons wonderful NICU nurse told my husband and i to grieve for the life we thought we would have with our son set a date then come back fighting. While we grieved for not being able to take him home right away and the disease i prayed hardered than i ever had before. I have also learned find a dr who is willing to learn as much about the disease as they can who goes above and beyond one that you know you can call at 3 am with your concerns. THey dont have to be the top in their field but ones who are willing to listen and help! My Boys and i pray for your little boys every night @ bedtime. He is a beautiful boy! Take time off for yourself and your husband
Praying in Texas

CastingCares said...

Dearest Patrice,

I don't have a child with EB, and I haven't lost any children. But I know that as a mother I often fear losing one of them. I have had to give total control over to the Lord. I don't allow myself to jump up every time I hear a wimper. First I lay in bed and pray that the Lord will give me wisdom and not allow me to be overcome by fear. Most of the time I am able to fall back to sleep quickly. (I'm not saying it is wrong for you to get up).

You are doing an incredible job! I am amazed at how you are handling all the stress. God has given you Jonah and entrusted him into your care, and He will give you the wisdom to know what is best.

I promise you will make some errors, but I believe He will be there guiding you to know what is best for your child.

I know I don't understand EB. But I do understand fear, and I often rest in this verse:

For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind. -2 Timothy 1:7

Don't allow Satan to steal your joy and consume you with fear. You are an great mom and you can place Jonah in our Father's loving arms for Him to cradle.

I am praying for you, Matt & Jonah. I pray that God will surround you with people of great wisdom and doctors who know how to best treat Jonah.

My son has all the same symptoms as Jonah right now, and he just has a cold. If Jonah is still breathing well, it may just take him a few days to get over this. And my kids don't eat well when they have a cold either.

Take all the time you need, and know that there will be others carrying you before the throne of our Lord.

You are loved,

Shannon

PS: I flipped back through the blog with my daughter a few days ago and it is amazing to see how far God has brought precious Jonah. He is amazing and beautiful. Enjoy your little miracle this Easter!

Anonymous said...

This is my first time to write to you. Jonah is so very precious and he has the most amazing parents! I find myself thinking of him often and of course lifting him up to the Lord. I am asking our Father in heaven to heal your baby and it is obvious you will give God the glory for it all. I have been reading your post for awhile and now find myself looking for an update every night before turning in. I am glad you have shown pictures and given such a good idea of what it takes just to keep him bandaged. You are indeed answering a high calling. Be assured that Jonah will be remembered even when you need a break from posting.
Sharon in Corpus Christi, Texas

RLR said...

Oh, Patrice, of course take a break! I've taken two bloggy breaks since December.... I am amazed when I see you post every day - EVERY day! And you are a new mom with a very special little boy who needs you way more than we need your blog posts. Of course, we love to see how Jonah is doing, hear how you are feeling, and know your specific prayer requests. But more than that, I am sure that everyone reading wants you to be sure that you are taking care of your family first. We won't stop praying....

Miss Carey @----'---------- said...

I'll be praying.:)

He Knows My Name -
http://www.youtube.com/watch?v=hXsiWoyjw60

nancygrayce said...

So many are praying! I'm sure I'm not the only one who just doesn't comment often. It's o.k. to be weary! From what you write here, I think you and Matt are fabulous parents. You step right up and do what has to be done for your child!

Jonah is a sweetheart and he's blessed to have the parents he has! Sunday is coming with all the ressurection power to comfort and guide you!

Erin Hingley said...

Patrice-

As much as I love reading your family's blog, a break may be necessary. I view blogging as an outlet to the world. A way to just vent, if you will. If you have no words, or are just frustrated and don't want to type out any words, then you should just be.

Just be with Matt and Sweet Boy.

Just be in prayer with our Father.

Just take a break and rest...we'll all be here when you get back.

As always, you are in my prayers. Enjoy your Easter...HE IS RISEN!!!

Love,
Erin in VA
youmeandwipee.blogspot.com

Angela said...

Life is so hard. I hope you can find some peace. I'm so sorry all of this has happened to you. I know that you know that God is good, and that one day you'll know the reason behind all of this. But that doesn't mean it's not the most difficult thing imaginable. Lots of hugs and prayers from Georgia tonight.

Toni :O) said...

Oh sweet Patrice.....we totally understand if you need a break from blogging. We certainly won't stop praying for you all. I continue to be amazed at all you do...having a newborn is totally overwhelming and then add Jonah's condition on top of it plus keeping your blog updated must just be exhausting. Remember to take care of yourself....keep Matt close and cling to each other for strength. You'll need it. Trust your motherly instincts and trust God....He has his plans and I'm faithful that He knows exactly what He wants you to to do with your attention to Jonah. I hope you find some peace soon in order to rest. Keep the faith, stay strong and I hope you all have a most blessed Easter...it's a joyous time...all because of HIM!

Bethany said...

I'm here praying for you. Take a break for as long as you need. You'll be in my prayers. Hugs to you.

Krista said...

I wish I had the perfect words to lift you up and make your burden light. I couldn't tell you the number of times I'd sneak into our baby's room at night to make sure he was breathing. Mom's just worry A LOT.

In time you will learn the difference between a common cold, and something more serious. Everything is new and different - even normal stuff! Don't be afraid to err on the side of caution and get things checked out - and rechecked as many times as it takes to feel secure.

God is working a mighty work in you and through you.

We'll continue to lift you up in prayer - may you feel His peace today. May He fill you with renewed energy and strength. And may He bring healing and restored health to Jonah.

Anonymous said...

God is with you, He loves you. He wants you to know you are surrounded by His love, comfort and support. I am a mother of 4 myself and I don't know how I stumbled upon your blog, I think from a friends 'praying for Jonah" sign off of another blog. I want you to know I will continue to lift your family up in prayer and that I believe the Lord hears and answers every earnest prayer for Jonah and your family. You know, I love the name Jonah. When I was having complications in my second pregnancy- the Lord told me to read Jonah chapter 2. I read it and read it and it hit home everytime. Cry out to the Lord in your times of trouble, earnestly, and He will answer you and you will be saved! To your family and to Jonah.
My heart is filled with love and compassion for you and your little Jonah. Rest in the Lord, He will care for Jonah.
~Canada~

Danielle @ Living Out Loud said...

Bless your sweet heart! I read back throught the comments from your last post and no wonder you are scared! As a mother, I know I get scared when my kids cough or even sneeze, so I can not imagine your worries... especially after some of those comments. I don't have anything to offer except my prayers that you will be led in the right direction and that in the meantime, Jonah will be safe. I think that you can trust your instincts - they have been very accurate thus far (or so it seems from following your story)!

You are an exceptional mother to your son... reading your post about the bandaging gave new meaning to the word "patience" for me. And I teared up when I saw his skin... especially his sweet little hand. Jonah is so lucky to have you and your husband as his parents.

I will say special prayers tonight for guidance, wisdom, and healing... and rest. God Bless You!

amber said...

We'll be here when you get back...and be praying for you while you're away. I personally feel like I know your family and will miss you while you're away from blogging! Take all the time you need and know that your family is loved and prayed for!

Anonymous said...

I think about you guys often. I hope you feel better soon. I admire you perserverance.
God Bless you guys
LinMarie

Anonymous said...

All the EB mom's are just trying to make your journey through the world of EB a little easier.



"What do we live for if not to make the world less difficult for each other?" ~George Eliot

lisa said...

Our family will continue to pray for your family with or without a blog! You need to do what is best for you and your baby and husband...always remember the love and prayers that surround you all from all over the world!

Happy Easter Williams Family!!!!!!

Anonymous said...

still praying and thinking of you all.
I pray that you will be granted peace, strength and wisdom.

Em
from Australia

Shari said...

Oh Patrice: I have only commented a couple of times, but I pray for Jonah every day. Honey, you just take a break if you need. You have so much to absorb information-wise I can only imagine your feelings of being overwhelmed. I don't know anything of EB, but I am trying to educate myself by reading, etc. so I can try and relate to what you are going through. Oh sweet Jesus, please give them rest, peace, and comfort during these hard days. Protect little Jonah's body and heal him. We know You are the great Physician. Hold them close. In Jesus Name, Amen.

debbie said...

DEAR PATRICE, MATT, AND JONAH,
WISHING YOU A JOYOUS EASTER. I HAVE JONAH'S BLOG BUTTON UP ON MY BLOG AND I PRAY EVERY DAY AND ESPECIALLY OF AN EVENING WHEN HE WAS IN THE HOSPITAL AND YOU WERE DOING DRESSING CHANGES AT THAT TIME.
WITH A NAME LIKE JONAH....GOD HAS BIG PLANS FOR HIM.
MY HEART CRIES FOR YOU BUT WHAT WONDERFUL PARENTS JONAH HAS TO BE SOOOOOOOO VERY DEDICATED IN HIS DRESSING CHANGES AND EXERCISE OF HIS ANKLES.....WHEN A CHILD IS SO ILL, THE PARENTS REALLY COME TO KNOW MORE ABOUT THE DISEASE THAN THE DOCTORS.
WHAT A BEAUTIFUL, STRONG FAMILY YOU ARE.
YOU TAKE ALL THE TIME YOU NEED AND KNOW THAT WHEN YOU ARE TOO WEARY TO PRAY, WE ARE HERE LIFTING YOU UP TO GOD'S THRONE ROOM OF MERCY AND GRACE.
YOU CAN DO IT PATRICE. YOU ARE SUCH A BLESSING AND I THANK YOU FOR GIVING ALL OF US THE OPPORTUNITY TO PRAY FOR JONAH AND YOU.ONE OF MY FAVORITE SCRIPTURES IS IS
BE STILL AND KNOW THAT I AM GOD.
IT IS WONDERFUL TO GET QUIET BEFORE THE LORD.
BLESSINGS
HUGS
debbie

Anonymous said...

Patrice and Matt - Yes, they say the Lord won't give us more than we can handle but sometimes we wish He had a little less faith in us!! I am always amazed to see that you have taken the time to blog every night. Don't worry about us! We'll still be here praying every day! Your responsibility is to you and Jonah. Maybe this blog has served it's purpose. It has led many people to stronger ties with the Lord and has led you to a community of EB moms who have advice to help you. Happy Easter!

Janel Waters said...

Patrice - take all the time that you need. I totally understand how overwhelmed you must feel. Please, please if you need anything email/call me - I am always here to help you any way I can.

We are walking out the door for church right now and I will pray for you through the whole mass!

I will continue to pray for you while you are taking a break - God Bless and I hope you get the answers that you are looking for at the ENT.

JoAnna said...

"Sweet Father, thank You so much for this precious family! Thank You for Jonah and his little life thus far. Thank You that Your leadership is right and Your government is perfect. Help us trust You implicitly! Lord, I ask that You would heal Jonah completely. I ask that You would take care of him in every way. I ask that You would guide Matt & Patrice in every decision. Let them know Your peace that passes all understanding! Lord, be with them today. Let them rest in You -not in good scenarios, but in Your goodness. Give them STRENGTH in their inner man! Lift them up! Let them hear You singing over them today. Let them awake each morning with YOUR song on their lips. Protect little Jonah from infection & complications! Give them creative ideas in Jonah's care and day to day life. Lord, I ask that You would send the little things... the little things that only Matt & Patrice would notice and KNOW were straight from You. Encourage them! I love You, Lord and am so grateful for You."

I have been, and will continue to pray for all of you!

JoAnna said...

Zephaniah 3:17

17 The LORD your God in your midst, The Mighty One, will save;
He will rejoice over you with gladness, He will quiet you with His love, He will rejoice over you with singing.”

Lauren said...

patrice, take all the time that you need. know that we will continue praying for jonah and you guys and that he will not leave our thoughts and prayers.
love you, chica.

Melissa said...

Patrice, Matt, and Jonah...you guys are all three in my prayers constantly. I pray that God will grant you peace, strength, and knowledge, and that He will give you enough moments of joy mixed in to help you get through all of the things that you are going through now and whatever you will go through in the future. Trust your instincts, you know your son better than anyone except God Himself. Look for the little joys that will boost you...a smile from Jonah, a new flower blooming in the yard, a particularly beautiful sunrise or sunset. Each of those things was created by God, and I can't help but think He sends them to boost our spirits. Take a few days to rest, to recharge. We will all still be here, and we'll all still be praying. If you need specific prayers, or anything else, have someone go on the blog and let us know so we can taylor our prayers to your needs. And when you are ready, come back and let us know how things are going. There's the saying, "God only gives us what we can handle"...I used to amend that with "And sometimes I think He over-estimates me"...but now that time has passed, I realize it's more like "Now I know I under-estimated myself". He knows what we can handle, even when we'd argue with Him that we can't handle another thing...it's only in hind-sight that we see He was right and we got through it afterall. I pray that your hind-sight will be the same...that you'll come through this stronger than you ever thought you were, and that you'll read and remember the story of the "Footprints"...it's always proved inspirational for me...

One night a man had a dream. He dreamed he was walking along the beach with the LORD.

Across the sky flashed scenes from his life. For each scene he noticed two sets of footprints in the sand: one belonging to him, and the other to the LORD.

When the last scene of his life flashed before him, he looked back at the footprints in the sand.

He noticed that many times along the path of his life there was only one set of footprints.

He also noticed that it happened at the very lowest and saddest times in his life.

This really bothered him and he
questioned the LORD about it:
"LORD, you said that once I decided to follow you, you'd walk with me all the way. But I have noticed that during the most troublesome times in my life, there is only one set of footprints. I don't understand why when I needed you most you would leave me."

The LORD replied:
"My son, my precious child, I love you and I would never leave you.
During your times of trial and suffering, when you see only one set of footprints, it was then that I carried you."

Samantha said...

Still praying, even if you're taking a break. Its all I can do; the least I can do... Happy First Easter Jonah!!!

The Mind of a Mom said...

Happy Easter, I hope that you get some much needed rest and cry some much needed to cry tears. I will be sure to include Jonah in my prayers. All I can offer is a kind word to hold and trust in God things will get better.

Blessings to you, Matt and Jonah in this glorious day for your little miracle

Crystal in IL said...

As a mother to a medically fragile baby myself, I can tell you GOD DOES GIVE YOU MORE THAN YOU CAN HANDLE so that you learn to lean more into Him. This is such a hard lesson for anyone but I think especially for moms. Although you must watchdog your baby ultimately his life is not in our hands. Thank goodness! I can tell you from personal experience that I learn more truth about my child from other moms than the doctors. At the center of the storm you must trust your instincts and trust Him. Take a break seriously. I know it's hard to do but you must try. It will bring you back to focus. Praying as always.

Jessica mommy to Alex/ RTS said...

I wish I could hug you. I have felt very similiar feelings as you. You can do this, not because you are stronger than parents of "healthy" kids, bot because you are better than other parents, or stronger. You can do this because Jonah needs you too, and so you will for him. Some days you might kick and scream while you do it, and thats ok. You will still do it kicking and screaming, other days will fill you with such happiness, you wouldnt want it any other way.
Much love, Jessica and Alex

DMR said...

Have been reading for a while now, but this is my first comment. Just wanted to let you know that I am praying for you and your family. And if you're ever feeling overwhelmed and need someone to talk to, a Christian psychologist (i.e. ME!) is hear to listen. Sometimes it just helps to vent! Sending you love!

Dr. Dani

Tracy said...

Although my daughters EB is not as severe as Jonah's, I understand the feelings you are having. I too analyze every cough or gag and wonder if something is going on. I think it is probably wise to have your ENT consult with the best of the best. I have heard great things about the EB clinic in Cinncinati. You have to trust yourself and know that you are making the BEST decisions possible for your sweet little man. Each and every EB case is different, so YOU will be the one that knows whats best for him and you should do whatever you need to put your mind at ease. I will continue to pray....

Anonymous said...

Patrice, Your primary concern is your son not your bog readers. So while we want to know what's going on with Jonah, more than anything we want your family to be healthy and rested. If you need to take a rest from blogging in order to see to him by all means do it. We will keep you in our prayers. God is good.

Jenny said...

Have you ever spoken with Mckmama or do you read her blog? You are going through such similar things as far as having very sick babies that no one is too sure how to deal with. You need to trust your instinct- that is God speaking to you. You are your baby's BEST advocate and you are a STRONG christian- God IS with you. I hope that you will contact Jennifer(Mckmama)- you need someone who can truly relate to you. Just in case you don't know her blog- she's at www.mycharmingkids.net Please contact her!! I'm always praying for you here in Kansas!!

Nadine said...

I do not know what it is like to have a baby with EB but know what it is like to have babies with serious health problems and I know this much for myself and hope this helps even just a "little" and gives you comfort...
Fear is not of GOD!
and as wonderful as the world wide web is...it can have it's down sides...
the people who are telling you not to trust the doctors...do they have a child with EB?
DO they know what they are talking about?
Cause I sure don't and could never advise you or direct you in any kind of directions other then straight to our Heavenly Father...
He gave you instinct for something and only you know your little one best!
Without being overly fearful (fear is not of god thing)...trust yourself!!...
Your Jonah`s momma...the one who knows all his little sounds and whimpers...
I hope I do not sound critical of others here...because that is not my intent...but from my experience with sick babies is that there were times where I got ``worried`` not from my fears, but other peoples fears...and then there are times where I dismiss my own concerns over the advise of others...

My point is...trust yourself and God...if you feel your little boys needs something more then what is being offered...trust that and go and find it...
We are praying for your beautiful family and pray that you get the peace in your heart that you know your doing the right things for Jonah...
Take a break...do what you need to do....but remember there are lots of us out there praying for you always!

God Bless you

Nadine in Canada

Our family page said...

I will NOT stop praying for you. I can understand how you need a break! I read the comments and I needed a break! I know each person means well, but that doesn't make it any easier to understand what a Mama should do, listen to other mamas or listen to Drs. I know it is hard. Last night my daughter (5) was up ALL night with a tummy ache. I thought of you all night long. I told you I would be on night duty and I was. I thought of how scary it is when our kids are hurting and all we have is Christ. That is really ALL we have. Drs, moms, we really all mean well, but we don't know what is going on with Jonah, but He does. I felt helpless all night as my daughter cried with a tummy ache, I had no idea, what to do for her. The best thing I could do for her was pray, and that is what we did. Then, I prayed for you, and I prayed for Jonah. I just wanted you to know that I really am praying my big behind off for you and I won't stop. If you post 10 times today or if you don't post anymore at all. You will be covered. I do pray today will be an uplifting and encouraging day for you. It sounds like you have an amazing church family and I pray they wrap their arms around you today and help you feel the love of Jesus today like you have never felt it before! Blessings! Missy

Anonymous said...

I am praying for you and new mercies each morning.

Jane said...

Patrice, you have been so faithful keeping us informed on how things are going. Don't worry about us, we will continue to lift sweet Jonah, you and Matt in prayer. I am sure blogging has been a sense of comfort in some small way, but you have so much to do now since Jonah is home and I am sure it is overwhelming. Just concentrate on Jonah, yourself and Matt. Sometimes advice from others is helpful, but also alarming. I know you feel inadeqate about knowing all about EB, but just trust your instincts being a Mother. I am sure with time, you will be very educated in it. You have never really had time to recover from giving birth, you have had to keep going like the energizer bunny. Wish some of us could give you some of our strength. May God Bless and wishing you and your family a Happy Easter.

Erin said...

I read all the comments yesterday and thought that it would all overwhelm you, I felt so badly, all had good intentions but it is so difficult trying to make the right decisions. I know when a situation comes up in my life and I listen to too many voices I feel like I am losing it and then I waiver back and forth between decisions and lose sleep etc. My prayer for you and your husband is that God's voice will break through and you will know what to do and will have peace in your hearts. So sorry you are weary so totally understandable.

Happy Ressurection Day

Anonymous said...

Praying for peace for your family and good health for sweet Jonah! May God hold you tightly during this time so that you can rest!

Laurie S.
Iowa

Hope said...

Dr Cotton in Cinci is the best upper airway doc in the country. His areodigestive team is awesome. You can trust them! They treat my baby as well. You are really doing an amazing job! ((Hugs))

Carol said...

Prayers for mercy for your sweet baby. Thank you Jesus! Carol

Kris said...

(((Hugs))) We continue to pray for your family.

the*4*of*us said...

Thank you for letting us know that you'll be taking a break. I know I would worry if you didn't post for a few days.
Please know that I am just one more person begging God to give Jonah healing to his little body. And peace and strength to your family.
((hugs))
and Happy Easter!

Anonymous said...

We will continue to pray and check back in. YOu take whatever time you need to sort through the emotions. Ya know, even with a "healthy" baby, there are still so many worries and things that sometimes don't add up and I can only begin to imagine what your Mommy thoughts are like with a baby with this type of condition. I will pray for you specifically as you seek the Lord's comfort. He is near. Be still and KNOW that He is God.
much love dear sister in Christ,
Daisy (alabama)

Anonymous said...

I just wanted to mention to you an amazing formula for sensitive babies (relux etc). It is called "Neocate". Look it up on the internet and read about it. I am sure your pedi can possibly give you a sample of it too. Praying for your family.

natalie said...

Take a break! We're praying for you, that God will sustain you and hold you up.

So glad the Easter Bunny was able to visit Jonah with some Easter treasures.

Sandy said...

Sweet Patrice . . . don't know you, but feel as if I do. My heart aches so much for you as a mother. I cannot begin to imagine what you and Matt are REALLY going through. One thing for sure though, you can count on continued prayers . . . from many many many people. Hope you have a brighter day tomorrow in the name of Jesus our Savior.
Love, Tears and Prayers
Sandy in King, NC

Tribulation said...

hunny, welcome to motherhood. yes you have to be extra careful with Jonah because of EB. yes, you have to be careful about who you trust with his care. BUT, you are first and foremost his mother. he will be looking to you for reassurance and support. check my other comments, i left you a website about a family who has three EB kids. it might help get a better view of what you are dealing with. and they have a list of other EB patients, both adult and children, so you can connect with other people who have been there. regular moms also worry over every little wheeze, bump, blister and bruise too. my husband and i are almost paranoid with every little head bump that our 20 month old gets. * we had a bad fall when he was only a month old that lead to a frctured skull. he's been healed by the grace of God, but that doesnt stop a mother from worrying.* you and matt are doing the best you can. its difficult being a parent in the first place. babies dont come with instructions, but blogging may help keep you from burning out. vent your frustrations out here and then accept the peace that God is willing to give you. believe me , it helps. lots of hugs, prayers, and love to you and yours
Tina
ps. heres my email addy if you want to talk. tribfrce4534@yahoo.com