Sunday, April 26, 2009

prayer request

Please pray for Jonah. He is extremely congested and has dried up boogers way in the back of his nose that I can't safely reach. He's really having to work hard to breathe and can't eat because of it. This is on top of the fact that he's stopped eating as well over the last couple days. I think he's supposed to be taking 17-18 ounces minimum in a 24 hour period, and the last two days, he's only eaten about 14 each day... and this was BEFORE all this crazy congestion stuff (JEB pretty much affects any of his mucous lined surfaces). I've tried a cool mist vaporizer, a hot steamy bathroom and saline drops. I can't suction him because it will cause blisters. I don't know what else to do.

When I try to pray about it, it goes a little something like this, "God you can just snap your fingers and take his congestion away so he can eat. Throw him a freakin' bone for once."

See? So I need help.

I'm feeling very angry and negative these last couple days. Mad for Jonah. Mad for us. Mad that I can't go out to lunch with my friends, mad that I'm probably going to have to give up my job, mad that we can't go to a night movie or out to dinner. But mostly, I'm mad for Jonah - that he'll have to be in pain and struggle his whole life. That people may look at him and think he's gross or contagious or unclean. Mad that I can't make people be friends with him or make girls think he's attractive. So scared he might hate his life.

I know this is entirely negative and directly from Satan, but it's how I currently feel. I'm mad and on the verge of depressed some days.

And now he can't eat. Enough already. That's enough.

165 comments:

j3k said...

Prayers....your feelings are 100% normal and I am sooo sorry you have to go through this. You are doing a GREAT job and Jonah is so lucky to have you and Matt as parents.
Hearts and Hugs
Marie

precious 3 said...

Praying for you and Jonah today. Praying for his congestion, his appetite, praying you will know how to deal with those. Praying for peace.

Your first comment is correct, it's okay to feel rough, depressed, and angry. But don't let it defeat you. You are doing a great job, you obviously love Jonah. And God is right there battling with you.

Rebekah said...

You have every right to be mad. It doesnt make sense. I know that your obsticles are WAY bigger then any that I could think of but it is so natural just as a mom to feel so defeated. You are so strong and Jonah is so blessed to have you as his momma.

Can you put patrolium jelly up his nose at night with a q-tip for moisture? Just a thought.

littleleaps said...

Patrice,
Jonah is blessed to have a sweet mother who feels so deeply for him. I am sorry that it is so hard. The things that you have to give up are worth grieving over. I think all new moms can relate to being frustrated over whether to go back to work, not being able to go out, etc. But in your case there is not much of a choice.
I personally felt like after settling into Lydia's normalcy after going through treatment, was post traumatic stress. The aftermath was shocking to me, even though she was doing so well. I just mention this to remind you that you are not alone in your grief...and then the Son shines!
Jonah is wonderful and beautiful. I am so thankful that you have shared him with our family.

heyLyss09 said...

I'm sorry he's not feeling well. Have faith that he will overcome this problem, just like he has already overcome so much in his short life. He is one tough little pumpkin.

And you are wonder woman, truly. It's totally understandable that you're feeling like you do.

Your family is incredible. I can't tell you how much joy it gives me to see the pictures of the 2 of you smiling with wide-eyed Jonah. Your faith has inspired me to dig a little deeper for my own.

M J said...

Oh, sweet Patrice I will pray for you and Jonah and Matt! Don't worry about being angry. Every new mother struggles with the sudden lack of freedom. My first was born in December, and I remember that Christmas, we had all JUST sat down to Christmas dinner, and she decided it was time to eat. I had to get up and go nurse while everyone else ate, and returned to eat my dinner (which was cold) alone because the rest of the family had already finished. Jonah is SOOOOOOOO lucky to have you as his mother to love him and worry for him. Some kids will probably be mean, just because they are, but I have found in working with disabled children (I used to be a special ed aide) that many of the kids are actually quite loving and nurturing. They will take Jonah under their wing and love him too. You just keep doing what you're doing and he will be great!

my3sons said...

I have been following for a bit; and have never commented. I think you are a brave mommma! I haven't walked in your shoes, but do have three sons. You are doing a great job with a very hard situation. He is a lucky little boy to have such caring parents. God knew that he would need a lot of attention and help and knew just who would be able to do that for him:)
As far as the congestion; can you use saline solution and then suction? I have done that when I can't "reach" the boogers! It softens it enough to suction it. You can buy it at the drugstore all ready to spray in the nose. I'm not sure if you have tried that, but wanted to mention it. Good luck! I pray for your little one! Katie

Erica W said...

I wish I had really great words to bring you immediate comfort and joy in a hard situation. It is so easy to see the big picture when you are not smack dab in the middle of it. I do know how hard it can be when you see the sacrifices you are making today.
All I know to say is to keep holding on to Jesus. He is going to get you through and He will return your (HIS) joy to your heart. It might not be when we want, but one day.
Your feelings of anger and confusion are all normal. And I don't think that in any way it is bad. Just make sure you are in conversation with Jesus about it. And your current method of praying works!!
Just remember your job as Jonah's mommy is to point him to Jesus! You can do it!!
I will be praying for you right now!

Raising Olives said...

Yes Patrice, we will be praying. Lifting up our brothers and sisters in Christ when they are discouraged is one of the privileges and blessings of being a Christian.

Praying for Jonah in north east Tennessee.

Blessings,
Kimberly

The Burgess Family said...

I think that it is just fine for you to have these thoughts!! It is 100% ok for you to go through these range of emotions and you should expect to. Some days your smiles and giggles will be real and other days you will be so overwhelmed with the "stuff" that comes with having a "sick" child. And you already have the best job... Jonah's Mama!! The winds of change will soon blow your way. Praying for Jonah to get well and praying for strength for his parents!

Hope said...

Your feelings are normal. I know it's hard, but you have been doing a wonderful job. ((Hugs)) to you, hon. I'm praying for Jonah and his incredible parents!

Beverly said...

Oh, precious Patrice - I'm so glad you have the freedom to express how you are really feeling. Don't stop. It lets us know how to pray for you.

You are doing a fabulous job in what has to be one of the most difficult circumstances imaginable.

I'm praying for Jonah's congestion and asking God to encourage you in a special way today. I pray that He will put a song in your heart and on your lips.

beach2lady said...

Sending prayers for your precious Jonah to eat, breathe better and heal. Also many prayers for your strength and peace as you care for him.

Anonymous said...

Hi Patrice, I used to put a little breastmilk up bub's nostrils to help clear them. I was told this by a lactation consultant and found it worked wonders. After all its made esp for him. Still praying in Australia.
Cathy M

Anonymous said...

Hang in there. God is with you still and he loves Jonah so very much. Keep praying no matter what it sounds like (God understands) and keep believing. We will continue to pray. It is ok to be angry as sometimes it even makes us better moms afterwards.

jenlar3 said...

You are doing a great job with Jonah. It is common to have to come down to the valley after a mountaintop experience such as you enjoyed on Gabe's birthday. Life will either settle down or you will learn to enjoy the roller-coaster ride. Jonah is adorable!! I loved the bath pics, especially the last one of him. Patrice, you looked so happy and beautiful. I am glad you have times like that. Sorry Jonah is having a tough time at the moment. I will continue to keep him (and you) in my prayers. Thanks for sharing him with us so that we can enjoy loving him also!

Heather said...

Praying right now that his congestion would be relieved. It sounds like you've tried everything. Praying for you too. I know it must not be easy. Praying for God's strength and peace to encompass you and for Jonah to grow up finding great joy in life because he knows the one True Joy.

Linda said...

Patrice,
My heart aches for you right now. I don't think it is Satan that is bringing you those feelings, I think it is God letting you be human-He knows you are angry-none of this is 'fair'. Acknowledge your emotions, but don't let them overwhelm you-know that He will carry you until you are rested and restored.
I will pray for Jonah to get better and be able to eat well, for the lifting of some of the burdens in your heart, for all who meet Jonah to see the sweetness of his soul and not the markings on his skin, that you and Matt will find strength in each other-in your love and the love that surrounds you. And always I pray that the scientists and doctors will make the discovery that will free Jonah of EB. Linda

Cammie & Wayne said...

Praying for Jonah. You don't know me, but I have been reading your blog. Drawn to it because I have a son named Jonah, born 13.5 years ago weighing 2 lbs 3 oz and spending lots of time in the hospital.

Your prayer request will be passed on to many prayer warriors.

The Hawkinson Gang said...

I have been reading your blog but have never posted. I have a little Jonah also....so I feel weirdly connected. You have been in my daily prayers. I'm sorry you are feeling so much anger....but know that it is normal and needed. Let yourself be mad! Then let God's Grace give you comfort. You are AMAZING and I hope that if I am ever in a crisis situation I could be half the women you are! Just keep loving that baby....I will keep praying for you!

Erin Hingley said...

Dear, sweet, Patrice...I have no words. Just know that I am praying ever so hard for your whole family. Jonah will not hate anything, I'm sure, because of the way you and Matt are raising him. He will know that the Lord loves him so unconditionally that he chose Jonah to be an example to others for Him... a tough job, but I think he can handle it. You and Matt are doing a FANTASTIC job! As for friends and future girlfriends, just start praying now that Jonah will be surrounded by peopl who will see his beautiful spirit. The Lord will provide in His perfect timing...


Looooots of love,
Erin in va
youmeandwipee.blogspot.com

Amy said...

Check out the Nosefrieda on Amazon. This is what we use and it's amazing. It doesn't go in their nose and when you read the reviews, you can see that it works great. Shoot some saline up there and suck. You will be amazed with what comes out.

Penny said...

With parents like you and Matt, I can't see Jonah hating his life. He is loved as much, or more so, than the average child. All the beautiful pictures you posted yesterday testify to that!
It is perfectly understandable that you are overwhelmed with the unfairness of it all. I believe through all of this, God is being glorified. Jonah is such a beautiful child and a blessing.

Erica said...

I can't remember if I've ever commented before or not, but I've been reading your blog for a while now.

I just want you to know that I'm praying for you guys and for your sweet Jonah. I don't pretend at all to know how hard it is to be going through what you're going through, but I do know that it is SO DIFFICULT when your child can't/won't eat. My son was a preemie and we've always struggled with feeding. There were days when I was so, so angry with God, because it seemed to me like He was denying my son the most basic of all needs: food. Of course, this wasn't true, but it feels like it some days. I just want you to know that I know how you feel in some small way, and that I'm praying much for you.

Also, something the doctor always told us to encourage us when Eli wouldn't eat is that, to stay hydrated, a baby only needs as many ounces as double his weight in kilograms (For example, Eli weighs 6.75 kg, so he needs 13.5 oz per day to stay hydrated.) That just always helped me when Eli wouldn't eat much, because at least I could know if he was hydrated and safe.

Many prayers!

Kristine said...

I don't know if you can use this, but there is a device called the Nosefrida...yes, weird name. :) Here is the link. http://www.nosefrida.com/

You would still have to touch it to the outside rim of his nostrils, but it doesn't go inside. You basically suck anything thats in their little nose out. It works VERY well.

Praying for Jonah!

Anonymous said...

I am prsying for you evaryday. My child was not born with EB, but she does have Down Syndrome and a serious heart condition that required much care. I know some of those feelings you are having and they are awful and you feel like you can't change anything and that was the hardest part for me. I was wondering if you have thought about getting on an antidepressant even just for six months or so. It did help me I believe. It's the only time I've ever needed something like that, but I believe it did help me cope with my situation. I just wanted to suggest that and I do not mean to offend you, but instead offer what helped for me with a trying situation. Hang in there It will get better.
Blair

mbo said...

you are doing an incredible job. and sweet baby Jonah is a shining star.

Anonymous said...

Prayers for Little Jonah and for a peaceful heart for his momma. Anger and frustration and sad and mad are normal for all parents and especially for ones facing major challenges. Jonah knows he is loved and he will lean on that love no matter what else life throws at him. You are doing a terrific job loving on him and giving your strength. Look at his happy smiles to know his heart is happy!

Katie said...

We use Saline nasal spray with Ella. It doesn't do any damage to their nose. And then the snot just kind of falls out and you don't have to suction it. And we wipe her nose with a baby wipe instead of a kleenex because they are softer and the moisture seems to help not hurt her nose as we wipe. Just a thought.

Katie
Mom to Ella, 22 months, RDEB

Chris Hilton said...

Congratulations on your new JOB as Jonah’s Mom. After five children and six grandchildren I know it is a tough job and the pay is crappy. However, I think many will agree you couldn’t have possibly landed a more rewarding job. Down the road a short distance maybe you can handle two jobs and return to your profession. For now find comfort in the one you have been blessed with. It is a blessing just a little difficult to notice over all of the work, responsibilities and difficulty. Try to consider it a challenge as you would any other new position and strive to do your best no matter what.

I know it wasn’t your goal, but maybe you already have a second job just haven’t realized it yet. It even came with a title “Author” of the William Family Blog. Check out how others, similar to you, have used that opportunity to help support their families. Maybe you can do the same. There are some of us out here willing to help with that!

Oh, on the other things you are mad about (mad is good it makes us think and improve ourselves):

The theaters are open during the day! It’s cheaper as well!

It’s called a sitter, yes you will need to train them for Jonah, but it is possible, make it happen for lunches with friends, movies and dinner out. It’s imperative that you find time for you and Matt. That’s an important part of Jonah’s care and your responsibility.

As to the questions in your mind about how others might view Jonah or how he might feel about himself. All of that will work out with time. Trust me perfect babies do not make perfect adults pay attention to the Craig’s List Killer all over the TV. Ever heard of Job, read your bible! Tribulations build strength and personality. That being the case, Jonah will grow to be an awesome toddler, neighborhood playmate, student and adult. It’s your and Matt’s attitude which will make the difference not the hordes of people looking on. He will emulate YOU.

Turn those angry negatives into positives. Many wonderful positives began with negatives. Everything depends on your perspective. Remember the photo of the little girl with EB sitting on the beach with the ocean washing up on her. I loved the mother’s comment that she discovered that “sand washes out of blisters”. That’s the attitude, find it.

Love, Chris

Ki said...

This is probably going to sound insane, but I was a missionary in Budapest, Hungary- and EVERY family with small children had something called the orrszivo porszivo- which translates to "nose vacuum." http://www.orrszivoporszivo.hu/?lang=eng
I have one and use it on my baby and toddlers whenever they have a cold. It is very gentle and you would barely have to touch Jonah's nostril to pull out the boogers. I realize I know nothing about EB and this may not be helpful- but there is a video on the website above that shows how it works. I don't know why these aren't available in the U.S. but if this is something that might help you- I could very likely get you one from friends in Hungary.

Katie said...

It doesn't matter if other girls think he's attractive (which they will) b/c he's already got a girlfriend (duh). And based on how bad she beats me up in utero, it would be a pure pity to see what she will do to the other girls who try to steal Jonah. It would be criminal, really. The McAnally girls don't play.

Anonymous said...

Praying for Jonah and for strength and peace for Matt and you. God Bless you guys today and always. I will be praying and thinking about your fam. as I head to church this morning. I will continue to ask God and believe in turn that he will carry your family and yes, give Jonah and you guys the break you need and deserve.
You will get through this.
Carlee

Merri said...

I'm so sorry that Jonah is having a hard time and that you are, too. I will continue praying for all of you. That's the great thing about having so many people out here who care about you guys and don't even know you - we will pray for you when you just can't seem to pray at that moment.

It's totally understandable to be feeling such discouragement. When you're not quite sure what's going on and you feel like God has abandoned you, you can be certain that He is working behind the scenes on your behalf.

Praying for Jonah's healing, stamina, peace, wisdom, and joy for you and Matt, and that God will do something absolutely wonderful for you today. Blessings to you guys.

Anonymous said...

I have a feeling that our Lord is going to do a mighty work in your family's life....just hold on girlfriend....JONAH WILL BE LOVED!!!!! xoxoxo to that sweet boy of yours

jennifer said...

there's nothing i have to say the loving comments above haven't already expressed. but man, did i smile when i read your prayer about throwing a bone. it's so good to read of someone else tossing that prayer up.

hang in. another day will bring giggles over things like a couple blisters forming the perfect heart-shape on your son's behind.

Kelsey said...

What you are feeling is so normal! I commend you for actually saying it because I think a lot of people in a similar situation as yours wouldn't. Thanks for keeping us bloggers up to date on your sweet little Jonah. We are thinking of you daily!

Kelly said...

Let it out and let it go. It's so great that you can be so honest about your frustrations and fears. All moms have them to some extent, believe me.

Jonah is beautiful. He will grow to be handsome. He will grow to be strong and he will grow to be wise...all because of and in spite of his diagnosis. What you and Matt put into his life will be what he shows.

I will be praying that you can find a sitter that you can trust to hang out with Jonah while you and Matt spend much needed time together. It's crucial for the two of you to get that every once in a while.

Feel better, Patrice. God is with you....I know you know that but it's always encouraging to me to be reminded. He will never leave you...or Jonah.

Toni :O) said...

Sending you lots of hugs and prayers for strength. I wish I could say or do more but I can at least sympathize with all the work of a newborn...you both are Saints with the added work of Jonah's condition. Hang in there and we pray his nose clears up for him to be able to eat.

Anonymous said...

Hi Patrice. I'm not sure if you've tried this or if it will help. With my son, I use saline drops but, instead of a suction bulb, I twist the end of a Kleenex and gently stick it up his nostril. The saline drops soften things up enough that they stick to the Kleenex and come right out.
I barely know what a blog is, but I came across yours on a friend's Facebook profile and have followed it since Jonah's birth. I think you are an amazingly wonderful mother. Your family touches my heart and I pray for Jonah daily. He is so beautiful and no blisters could ever change that.

Tara said...

We are still praying! Your feelings are so normal!! It is ok to feel that way. I think every parent goes through that and I am sure with what you are going through it would be even more so at times. You are doing a great job and I know Jonah appreciates everything you do for him. He is a very lucky baby to have a mommy and daddy like yall!

Anonymous said...

Oh sweet Patrice,

Your feelings are completely normal and how wonderful that you are able to express them.

This sucks beyond belief. I wish I had a crystal ball to reassure you and help you through this journey. It feels so unfair, so frustrating, and truly maddening.

Your feelings are real and they are things you cannot overlook. As parents all we want to do is make it better. This has been life changing for you and your entire family.

I only wish I had some fabulous advice. All I have is keep talking this out. Get the feedback of others and remember as horrible as this sounds, this is your and Matt's life too (I really sound mean and that is so not my intention, Patrice, not at all).

Try to get out of the house alone. Maybe take a walk, go to a park, or just drive and listen to music. Step back for a little while, clear your head and never ever forget how lucky Jonah is because you are his mom.

Kimberly
WI

Devon said...

oh sweetie....you've been through so much. you are entitled to all those feelings. i am praying for you...

as a mom whose lost a child, i know how hard it is to just work through grief. and then to add a new baby who needs such intensive care, its enough to drive you crazy. hang in there....you are doing an AMAZING job!

Anonymous said...

Jesus may you wrap your loving arms around Jonah and heal him of this congestion and of these blisters. Take away his pain and allow him to be able to eat so that he will stay strong. Lord please comfort his Mom and Dad and give them a peace that surpasses all understanding in this time of need. Fill there house with your love and comfort may they feel your presence all around them! May Satan have NO control in this situation. We know that You are the Mighty Physician and You have the power to heal him!
Praying and Believing!
Kelly

Courtney said...

I'm sorry! I know it must be hard. Just hang in there. It's all we can do.
Blessings,
Courtney

Girly said...

I am so, so sorry. It's okay to be mad - God can handle it, as long as you are willing to let Him in it. He knows your heart. I'd be mad to and I'll be praying for you all.

Renee said...

I don't blame you for being mad. I would be too. You are totally normal with your feelings. Praying for you and Jonah. You both deserve a break.

Jenny said...

What you're feeling is normal. I remember that after my son was born, I felt frustrated and trapped in the house, and guilty because I love him and would do anything for him, so I wondered why did I want to just go somewhere and shop or see my friends. Its probably harder on you because Jonah needs so much extra care.
Does your family live close to you? It would be so wonderful for you if they could come over and watch him, even if it was just for a little while. Just so you could get out of the house. You probably need some "me time" to help clear your mind and calm your heart.
I also wanted to tell you that I'm a third grade teacher in Kernersville, and kids can be very understanding and supportive. I've had some students with various needs, and the other students just accept those kids. I know that school is several years away for Jonah, but if you come to his classes at the beginning of the year and share with the students about his condition and any special requirements that he has, they will do everything they can to make sure that Jonah feels welcome and included.
I'm going to keep praying for you guys.

Mommynurse said...

It's ok to be mad, I think you have a right to. I'm praying that through your feelings you will find peace and strength from the Lord.

I doubt Jonah can have tummy time, but if he can, it's always helped my 3 month old clear out his nasal passages. I'm not sure why, but after tummy time, the congestion just has a way of making it's way out naturally. Just a thought!

Claire said...

Praying for peace and release, for Jonah and all you guys.

Cxx

CHATTY CATHY 1975 said...

I have a housefull of little girls who will be THRILLED to date little Jonah (and their Mommy & Daddy will be THRILLED to have them dating a boy who has SUCH AMAZING PARENTS!!) Seriously - look us up! LOL

Kelli said...

Praying, praying, praying. Hold on to the hope that can only come from God!! Hugs!

Sara said...

Patrice,

Since the day he was born, everytime I pray for Jonah I pray for all those Lucky enough to meet him in person. I pray that they will see Jonah for who is, not simply by the blisters they might see. I pray that their heart be touched by the baby, the little boy, the big boy, the teenager, the man, he is and will be. I pray for his friends, his wife, his community, his workplace.

God knows sweetheart, he knows this life has been made that much harder for Jonah, and for his mommy and daddy, and I'm sure his heart is broken by your pain. But I know he knows that you guys are the perfect parents to raise Mr Jonah up with the strength and security he needs to be proud and safe in his own skin.

I know you are angry, that's okay. I know you are grieving so many things that have been taken away...it's okay. I know you must feel lost, abandoned, and terribly afraid. It's okay.

I don't know how you do it, but I know my God will see you through. And me.

I'm just so very sorry.

Kammy said...

Praying for you and Jonah today! I have no words of my own that can be of comfort, for you do not know me. But I know someone who knows us both, and that is God. So I will use his words, because he is greater at bringing peace.

Jeremiah 29:11-14a "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. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with your all your heart. I will be found by you, decalres the Lord and I will bring you back from captivity."

Shari said...

Patrice, Dear, all your feelings are normal right now. Please be easy on yourself. God knows the reasons behind your anger. I continue to pray for your little, sweet baby daily and for you and your husband. And I will specifically pray for his congestion!

Anonymous said...

I have been praying for your family and that God gives you His peace and strength in this. God is remarkable and if we look to Him, He will strengthen us in Him thru these things. To know God better is a joy.

The Dolezal Family said...

Just had a lesson today on trials. I know you and your family have faced more than your share and we can't prossibly understand everything that needs to be dealed with. But I wanted to share the 4 points that came from a talk of one of our leaders.
1. Learn to Laugh
2. Seek for the Eternal
3. The Principle of Compensation
4. Trust in the Father and His Son

If you would like to read the whole lesson, let me know and I can email it to you.

We love you and Jonah. You are in our prayers.

Anonymous said...

Patrice,
Your feelings are completely normal. Even those of us who have healthy children go through such a hard time giving up our freedom in the beginning. I can't imagine throwing in sickness on top of everything else. I have two boys and havent been to the movies in about 5 years!! I rarely get to watch one on t.v. or DVD. I can't remember the last time we enjoyed a nice "family" meal outside of home in peace and quiet. I can't buy groceries or make a Target run without someone needing to pee, someone throwing up, needing a diaper change, or just crying/screaming in general. It's called being a mom. Hang in there, you are doing a great job. Praying for you in Alabama!

Laura A said...

You're in my prayers, Patrice. Specifically today, I'll pray for Jonah's congestion, and for God to bring you comfort and peace. And that He will also give you time to nap - I find that Satan can really do a number on me when I'm tired!

I so wish I could say the magic words for you, and that Jonah would be healed right now. All I can do is pray that God will heal him, and that He will give you and Matt the strength to take care of him (whatever that involves.)

Please know that we (all your blogger buddies) love you and Matt and sweet Jonah, and we're lifting you up to our Father daily. And if there's ANYTHING I can do for you (even from Texas!) don't hesitate to ask!

Love,
Laura in TX

PS - don't worry about girls finding Jonah attractive - he will win them over instantly with THOSE EYES!! :+)

Laura A said...

PS - LOVE LOVE LOVE the pictures! So glad he enjoyed his bath!

Love,
Laura in TX

Anonymous said...

You are human and feeling human fears and emotions, who can blame you for that? Not any of us who, by the way, are also human and can become impatient with God's plan for those we love with all our hearts. Know that He is with you each step of the way and He loves Jonah so much that He gave Jonah the most wonderful perfect parents for him in the whole entire world.

As Jonah grows he will know how loved he is, and he will never doubt that he is perfect in God's eyes. Plus he is cute as a button, NO ONE can deny that! Try not to worry so much about what the future will bring for him and all the possible negatives of our society. Enjoy your little boy, love him, allow him to know how valuable he is to you each day of his life. They grow so quickly, so enjoy every milestone along the way.

You and Matt are doing a phenomenol job, and Jonah already has a world full of people who love him EXACTLY the way he is(and they love you both too!) Prayers will continue to be lifted for all of you from our little corner of that great big world.

Becky H.
North Carolina

Elizabeth in WS said...

I live in WS, and have a daughter who will be the same grade level as Jonah. Who knows, maybe they'll be in the same school one day? If that is the case, Jonah will ALWAYS have a friend in her!

Donna said...

Dear Patrice (and Matt) I am actually glad that you are able to voice your feelings through your blog. I check in daily but usually do not post. I hope that you know that your feelings are totally normal. The 'norm' that you have with sweet baby Jonah is a hard one and although so difficult you and Matt will be equipped and as time goes on and you learn all of these new things with Jonah I am sure that God will see fit to give you that precious time for each other, yourself and with your friends. I have had to learn through my son (medical issues but different from yours) that your 'norm' is not what everyone elses is - but it is exactly what God has and continues to equip us for. I hope that you will find time - even just a cup of coffee out with friends - a half hour can do wonders in getting out! Prayers for both of you and Jonah continue!

lottfam said...

We were out of town for a few days and I enjoyed seeing all of Jonah's firsts when I checked your blog. I am praying for Jonah's immediate need of improved eating and congestion problems. As always, we will continue to pray for his overall health, strength for your family and for more good days than bad.

Recently, I took time to read your blog from the beginning. Obviously, it included a box of tissues . . . you write beautifully and show so much compassion in your writing especially when it involves your children. I know you would never choose what has happened to you, but you have been a wonderful testimony for the Lord throughout your many trials. I wish I could take your hurt and sadness away, but since I can't I'll pray the Lord chooses to heal Jonah. There can't be anything harder than seeing your child suffer.

Try to focus on the good days, the milestones and the precious pictures you've posted when days get tough. Know you are loved by the family of God and have people praying for you in PA many times a day!

janelle

Analiza Bernat said...

As most of the moms have said here on your blog... you are feeling 100% normal, there are days when all I want to do is tell my husband I'm going to get diapers but keep driving to No Man's Land, so long as I get a break from being mom! LOL! But let's get real, when we get there I'm pretty sure that you'd miss your child. Catch 22 and one of the humbling perks of being "mom."

Listen, this may be unconventional but I've done it when one of my boys have a booger so far up their nose, I begin to believe that another booger is pulling it back into his head. I've put saline solution in their nose but instead of suctioning it (because their noses are so sore or they just fidget too much for suctioning)I have tickled the inside of their nose and made them sneeze. I just sit there with a small towel ready. It's worked for me and boy! the crater of a booger I find sometimes LOL! Good luck and I'll be praying for you. God is just reminding you of how wonderful you are. You think anyone can do this job of "mom?" No! It takes a special person to love this much!

Analiza

Jill said...

Patrice,

Though I haven't commented in a while I read your blog every day.

I don't know if it's satan or our humanness. probably both. and the enemy knows how to get to us.

But what I DO know is that your feelings are so understandable. Thank you always for being honest.

Reading Job in the past couple of months has brought a lot of comfort. I see him as raw and honest before God. But unwavering in his faith. Just like you are.

I love you

jill

teacheroftwos said...

I am not sure if someone else suggested this yet, but there is a product called Boogie Wipes that you can get at your favorite store! They have saline in them and are super soft. I use them on my sons nose when he gets dried up boogies. Worth a try!

Becca Barnhart said...

I found your blog by accident, but I have so enjoyed reading it. I have spent many hours over the last couple of days reading fromt he beginning, and I just moments ago got all the way caought up to this mornings post. I can only imagine the frustration you must be feeling. But do remember God is in all of this. He know what is going on, what is going to happen, and how Jonah's health is going ot progress over the coming weeks, monthes, and hopefully years, and years of his long and full life. God is so good, and He never gives us more than we can handle. He knows your breaking point, and He won't take you there. He also knows Jonah's heart. He will give Jonah the strength and character to withstand any ridicule that he may face. And the people who matter most will always know how beautiful he is. Trust God to handle this. He can and will.

Jenifer Parris said...

Sweet Patrice. I have no idea how things are for you and your situation but I do know how being a mother feels. There are some days that I think, "Did I sign up for this?" It doesn't mean that I don't love being a mommy or that I don't feel blessed. It just means that I'm human and want things to work out like I think they are supposed to...for me...for my babies. God has used you in such a mighty way already. He has such a fabulous plan for Baby Jonah...I can't wait to see it unfold. You are in my prayers as well as Jonah. Praying that his congestion will go away so that it doesn't complicate other things, praying that you would feel God's (and our) arms wrapped around you in love to encourage you, praying for smiles from sweet baby Jonah when you feel like crying, coos from sweet baby Jonah when you feel like screaming, and a warm sweet, freshly bathed and wrapped baby Jonah when you feel like banging your head against the wall. Don't know you in real life but feel like I do. Love you all just the same. Love, Jenifer

Erin Edwards said...

Please don't feel badly about those thoughts. If you are so terrible for them then I am too;) It stinks! It's not fair! It changes everything we do in life. Just wait until you start planning your first beach trip... ::sigh:: But there is so much good to overshadow the bad... try to focus on it & it will get you through the rough spots.

Have you been able to get Cap-C set up? I think that may help... you'll be less worried about costs (they will cover the aquaphor/bandages/etc) and you'll have some help.

If you ever want to talk, please call me or email me. :) I need to get you a copy of our little card that we hand out in public. Do you still have your address posted? If you do I will stick it in the mail:)

natalie said...

Lifting you up right this moment.

natalie said...

Oh...have you read Holding on to Hope?

I know you've got a million e-mails and comments, but if you'll e-mail me, I'll send you a copy. nataliebenson at cox dot net

Jennifer W. said...

I'll be praying for you. You have nothing to feel bad about and these feelings are NOT from the devil. They are totally normal and real and come from love and the desire to protect your child. Nothing wrong with that. You are doing a great job!

CinderellaMommy said...

Patrice, I'll keep you in my prayers. Specifically, that God will allow you to feel His peace as he wraps his arms around you and that He'll take away the scary unknowns from your mind. We mommies have lots of worries for our beautiful kiddos - it's not easy to love our little people so much! But TOTALLY WORTH IT, RIGHT? We'll pray for Jonah, too, that his congestion goes away and that his appetite increases!

Anonymous said...

I have been following your blog for about a month now. You are amazing parents and Jonah is so entirely lucky to have you!!! I understand your anger and amazed that you have not turned that anger onto GOD. The last post made my day, going to target, wearing clothes. It amazed me how you were able to enjoy all of that, as you should!!! you both seem to not take anything for granted with him. how wonderful. I would try not to worry so much about his future. You seem to have a great support system. He will always be very loved. My thoughts and prayers are always with you and Jonah and Gabe too:) You are really amazing parents!!!!!!

Channe said...

We're praying for Jonah's congestion to get better & also that God would make things not quite so overwhelming.

MaryBeth said...

i'll be praying for little Jonah. =) he is such a fighter =) thank you for sharing your stories, experiences, and journey =)every story i read is an inspiration =)

If you haven't already, you could try a few drops of breastmilk in his nose. I always found this worked better than saline drops.

MelH said...

Praying for Jonah to be well, feel good, eat well and be healthy. Praying for your spirits to rise and for God to lift your heart. You have ever right to have moments, Patrice. I dont think you would be human if you didnt. You are a FANTASTIC mother and I am so proud of you and Matt. Yes, I know I dont KNOW you but as a parent myself, I think you are amazing.

Much love and always much prayer,
Mel

the-mommy-person said...

Jonah is a beautiful baby; he's gonna be a hottie. Don't worry mommy. :) We'll start praying for his future wife. A Godly woman who's life wouldn't be complete without Jonah.
Love and prayers. Satan attacks the greatest of God's servants...way to be.

Diane said...

You, Matt & Jonah are in my prayers each and every day. I will especially pray that he will be able to breathe and eat. (wish I had heard some of you commenters' suggestions about noses when my kids were small!).

I understand your frustrations, but you are such a good mom, just take one day at a time and let other people help you. You do need a break occasionally, don't feel guilty about it.

I also understand your worries. My 2 year old granddaughter has scoliosis and has to wear a brace and will probably have surgery eventually. A month or so ago she fell on her face, loosened her top two front teeth and they have turned dark. I thought, "why her", when she has so much else to deal with, she will now have till she loses her baby teeth, and I know not everyone will be kind. Then I looked at her, she was happy, smiling, totally unaware and I thought, that's just a hurdle we'll worry about later.

Thinking of you.

Madison said...

I'd be mad too! Bless you...I'm praying for you, all the time. For Jonah's health, for your peace, for Jonah's doctors, for your's and Matt's relationship, for your sanity:), and for anything else you need that I can't think of! I think of you many times a day and wonder how you and Jonah are doing and I send up a prayer each time. May your mind find peace regarding your fears and may sweet Jonah overcome his latest battle. And if you need it, Effexor is great! I've been on it for depression for awhile and it's really helped. You're such a sweetheart! Hugs from UT...

Katie said...

Praying for Jonah and you too, Patrice. After first reading your story I pray nightly for little Jonah and for the cure of EB. Reading what you wrote really breaks my mommy heart. You are such a wonderful mother. And I just know that some sweet girl will fall in love with those big blue eyes of Jonah's someday! :-)My daughter is three and she looked at Jonah's pictures just now and she didn't take note of any of his blisters. She just said, "That baby has pretty eyes Mama."

Girl Child said...

my friends daughter had really severe rashes all over her body for the 1st year of her life and my friend thought the same thing: What is she's the gross girl? What if ppl make fun of her? She said she would homeschool her to avoid it all.. and here we are a few years later and she is the prettiest lil girl ever! He will be fine sweety.. You can tell he's a mega cutie!! Sorry u feel so blue.. I would too though, I'm sure.. its hard dealing my kids w/o EB, nevermind that added stress. hugs to u both!

Valerie said...

I'll be praying for sweet little Jonah! And he is SOOOO loved by you that there is no way he could hate his life. I also will pray that this frustration for you will pass.

unzen said...

We will pray but take comfort in what you feel is very normal. You are going through so many changes. God knows how thing will play out for you and it will be his will. I pray for you to find peace and for your whole familys health during this very hard time. God Bless.

Stephanie said...

Praying for Jonah and you tonight! Just in case you needed to hear it...Jonah is adorable and perfect in everyway that matters and those that matter will think so too :)

Sandy said...

You know, I admire people like you. People who can be HONEST with their feelings AND who aren't afraid to "let it all out". There have been so many dark moments in my own life regarding my son (who is now 26). And, I have learned that it is OKAY to be ANGRY, SAD, MAD at/with God . . . and I think you have a very healthy way to release your emotions (being able to write it all down). Life can be so hard. I hold your family dear to my hear and will continue to pray for all three of you.
With Sisterly Love from King, NC

lesliesloan said...

Patrice,
You and Matt are doing an amazing job as parents and I would be a complete mess of emotions if I were in your shoes. Own what you are experiencing and give it to God. He put you there and he can handle what you are going through. Sorry if that sounds trite, I hate when people say that kind of crap to me. But I am blown away by what you both have been able to handle so far.

On the congestion front, both of my kids for some reason had about 500 colds their first year of life and I want to echo another poster on the breast milk instead of saline. I used this method a lot-whenever I was desperate. Something about it clears out their nasal passages like nothing else. Just use a little dropper and drop it in there. I also would use a little q-tip once things got soft and wipe gently, I don't know if you can do that due to the EB. But it has to be better than your finger! We are praying for you girl!

Aunt Joyce said...

Patrice - There is very little I can add to what has already been said. You do have every right to be angry.
As someone who is over twice your age, there have been many times in my life that I have just had to put what prayers I could muster into the hands of the Holy Spirit and let him make sense of them and give them to God. I have also found that when I don't know how to pray for anything else if I just start thanking God for all the prayers he has already answered somehow the praying becomes easier. Just stop for a moment to think of all the prayers God has answered in a positive manner on behalf of you, Matt and Jonah since even before Jonah was born.

There are going to be even more times that you will not be able to word the prayers that you feel need to be said. The important thing is that you keep praying, never stop, even if you think your prayers sound hateful to God. Trust me, he understands. Remember, even Jesus prayed for the cup of the crucifixion to be taken away from him. The secret to His prayers was "not my will but thine be done".
Hang in there girl. You have endured more than many of us who are twice your age have had to endur. You have made it this far. You will make it through anything that Satan throws your way. God has a plan for your family and a plan for Jonah individually. Keep looking for it. He will show it to you one day.

Love you to Heaven and back,
Aunt Joyce

Beth said...

Praying for you!

Vent all you want! You are a new mommie, hormones still all over the place, sleep deprived, have a sweet boy with some unique circumstances and now he is sick! I would be saying "enough already" too!

God wants you to share ALL of you with Him...not just the Praise and good stuff!!

Glad you are getting your feelings out and not bottling them up!!

Keep your head up lady!

The Hollimans said...

I am so sorry. I can definitely understand that you are mad. I mean, I'm mad for you and I've never even met you!
You and your husband are doing such a great job with Jonah and being such great witnesses for Christ, it's no wonder Satan is working hard on you. I'm praying for you guys. Keep taking your anger to the Lord.

Our family page said...

After 91 comments, I am sure there is nothing that I can say that the 91 haven't already said. Just know my God gave me a VERY large bottom for a reason! So I could pray it off every night! :o) I am prayin' so hard that you will feel HIM lovin' on all of you! Love from Mexico! Missy

Hope James Wilson said...

You are such a wonderful mommy! I know you are frustrated and rightly so! Praying for you all...Hugs from Georgia :)

Melanie said...

My daughter had her first cold at 4weeks of age and the eating thing was rough. We did all the stuff you're already doing. I ended up putting vicks vapour rub/menthol on my breast (since you can't put it on the little ones) near where her little nose would be and that helped.
Keeping you all in our prayers,
Melanie

Anonymous said...

My sweet Patrice,
I so wish I could take some of your pain away, it is OK to be angry,you are such a good mom to Jonah, and I know with you and Matt as parents he will grow to be a strong man of God, not only beautiful on the outside but inside. I cannot help but think about the video we watched in sunday school last year with David Ring. The world told him no, no you will never be successful, no you will never be a husband, no you will never be a father, actually with the physical disabilities, that he deals with daily. David had a very loving Mom who always told him he could be and do any thing he wonted ,as long as he let God lead the way. Today,David is very successful in the ministry,married, and a father. Jonah is blessed to have you and matt as his parents and most of all to be raised knowing , thru christ ALL things are possible.
it was great seeing that sweet baby boy on Friday I thank you for sharing him with us all!
and as for the comment from uncle Chris, Gee Gee is willing and waiting to be the trained baby sitter.
I LOVE YOU
Praying for a healing
Gina





I LOVE YOU
Praying for a healing

Susan said...

Praying for you tonight, sweet mama! And I must say, Jonah looks so stinking cute in those bath pictures in the previous post! He really looks very happy too. I know he's not happy ALL the time, but I think he knows that you are doing your very best for him. He loves you so much, just like you guys love him! I can tell!
Praying that his nose clears up! Those dry boogers are tough even for a baby without Jonahs medical problems...so I can't imagine what it's like for him/you.

I hope this week brings you happier days. I will be praying for you, Matt, and cutie-patootie!

Much love and prayers,
Susan in Indiana

Storybook Woods said...

I am standing in prayer for you and Jonah Clarice

Byron said...

I can only imagine what you are going through with Jonah right now. Prayers of healing and comfort are coming your way from me!

Anonymous said...

Praying for you and Matt and Jonah.

mom22little1s said...

(((hugs)))
I'm sorry you're so frustrated but glad you are able to share your frustration with us.
(((hugs)))

Rebecca said...

Praying for you right now.

Rose said...

I have no words- just praying for you and Jonah.

Anonymous said...

much love to you. Praying for you guys and I know God's grace is enough but I can't even begin to imagine all your emotions. Hang in there,
daisy (alabama)

anna said...

just wanted to let you know that you are prayed for every night by our family.

Vera said...

Praying for you!! Your feelings are so totally understandable. I loved the bath picture of Jonah - I can't believe how BIG he is already, and too cute! Your post on Gabe's birthday is THE most beautiful blog post I have ever read. Hugs to you.

The Peoples Family said...

PRAYING. You both need to be able to grieve what you had hoped for when Jonah was born. You probably haven't had time to stop and do that yet, the Mommy and Daddy instincts kicked in and everything has been about what Jonah needed to make life as comfortable as possible. You have both been so through so much and every parents wants the very best for their kids so everyone understands that aspect but only you know all those things that run through your head when you have a quiet moment to think. Your feelings are totally understandable and that is the GREAT thing about our Heavenly Father. He meets you where you are and all you have to do is look to Him. He only wants the very best for you as well. His Fatherly love is always there and He knows every feeling you are going through and what you will go through throughout this journey and He will still love you no matter what feelings you are expressing. PRAYING.

lifelaughsandlove said...

Ugh, I'm mad and frustrated on your behalf! I feel like that at times too, like "seriously God, it would be so easy for you to just fix this, could you just speak the word for me???" I will stay in prayer for your sanity, and emotions with all of this, and also for Jonah. That his little body will continue to fight and heal. That he won't be in pain, and will be comfortable. You are doing a great job. Jonah is so lucky to have you for his mommy. Being a mommy is a very difficult job on the best of days, and your love for him is so evident in everything you do for him. Be mad, but don't get discouraged. You are awesome!

Anonymous said...

praying for you all!!!!

Em
from Australia

jen said...

"I sought the Lor, and he answered me; he delivered me from all my fears."- Psalm 34:4

I have been following your little Jonah. Our Riley (5 months old) has EB too (we don't know which type yet, but we think Dominant Dystrophic). I have felt just about every emotion that you described in the anger department, and worry for his future. Hang in there. Just know that your feelings are normal, and it's good to express them to God and everyone else! It's part of the grieving process. Though I don't know you, from reading your posts I am confident that God chose the right parents for Jonah- you will raise him to have joy in his life no matter what. Just remember to take everything moment by moment with all the worries about the future. God will give us and them the strength we all need just as we need it. Your Jonah is gorgeous, and I am praying for him tonight. The psalm above helped me when I was struggling with fear and anger- I hope it gives you some small comfort.

Anonymous said...

There is lots of great encouragements and love poured out on you from all the people who have commented and are praying for you all here. I pray it all has helped to revive your strength and fortitude to go forward in faith in your daily taking care of precious Jonah with the Lord's great leading and caring of you all. You are amazing, because God made you just the perfect fit to be Jonah's mom. I so understand your pain and frustration in all of the things that you are facing, and I even feel pain for you! A mother's heart toward her child is like nothing else in the world!! You will pour all that love into Jonah day after day and he will grow into an amazing man of God who will be full of the joy of the Lord! Yes, he will face trials and tribulations in this life, we all do, but he will rise above them by God's grace and because of the Lord giving him the parents that he has. God will work through the both of you to raise Jonah to love and serve God all his days, and Jonah will be fulfilled. It is going to be okay.
I am so sorry for the terrible congestion and problems eating. I am praying that he will get better and that you will find out a way to help ease his breathing. Hopefully your doctor can help give you suggestions. Our little babies are so helpless and so dependent on us, and it tears our heart out to see them suffer so! I am praying for our loving God to have mercy on all 3 of you and bear you up on His strength.
I have found when I have gone through great times of suffering that reading the Psalms has been the most comforting and strengthening of things that the Lord has blessed me with. So to this day I meditate on them daily. We sing Psalms also and I sing them to my baby grandchildren all the time! I know that the Holy Spirit uses those words of God to bless those little babies. So reading or singing the Psalms to Jonah will be such a blessing! It is God who will grow Jonah into the Christlike man he will become. I sing Psalm 128 and 103 to my one year old grandson and 2 month old twin grandbabies all the time, and they love it! They may not be able to understand the words exactly at this point, but never underestimate what the Lord can do with His Word applied to anyone's heart, no matter how young!!
I am praying, praying, praying for you sweet Patrice and precious Jonah! Let us know how you and he are doing!! We haven't met you but we love you!
Luann in WA

Stars in the sky said...

Praying for you~

I must say your sweet baby is SO CUTE!!! He has the most gorgeous eyes!
Not sure if this is too soon, but have you read the "poem" "Welcome To Holland?" I have a son with special needs and I have read this over the past 9 years.
You sound like an amazing Mom and yes, enough is enough!

K said...

I'm sorry you are having some down times right now. As the queen of boogie sucking, I highly recommend a natural mucus solvent called Alkalol. It was recommended to me by a doctor (Stanford graduate) whose daughter attended my daycare. I ask the phamacist for it at my local pharmacy and they order it. It's VERY inexpensive. At the slightest hint of congestion or uncomfortable throat, use this by quirting it up the nostils, and it rinses the mucus away and keeps it from building up. I get a bottle of cheap regular saline, remove the top, pour it out and fill it with the Alkalol.

I hope this works for Jonah. Oh, and be sure you have an efficient boogie sucker, at least a 3 oz. bulb syringe, hospital-grade mechanical or this one:

http://www.thingamababy.com/baby/2007/02/review_nosefrid.html

Lyn said...

I am praying for Jonah, and for you to have peace.

Jennie said...

I am not a blogger, nor do I usually post comments, but I have followed your story and felt I needed to let you know that as a fellow mother my heart breaks for you right now. Every emotion you feel is normal and God gave all of them to you. Sharing is the best thing you can do because sometimes you just need to let others help you shoulder the enormous burden your heart feels.

Prayers for you and your precious family. Thank you for your honesty and being so real with your emotions. Isolation is Satan's tool and you are not letting him defeat you with it....you are sharing what is on your heart and allowing us to feel the pain with you and know how to better pray for you, Matt, and Jonah. Never be afraid to express what you are truly feeling.

Jonah has already had more than his fair share of struggles and he will face many more as he gets older. I don't know you personally, but I can tell through your blogging that Jonah was placed by God with two warrior parents. Even on the days you feel the weakest, you are still strong in the Lord. Jonah is blessed to have you and Matt for a mommy and daddy, and Gabe for a big brother.

Marie said...

It's not "from Satan" to feel angry, bitter or depressed. You have been through pretty much the two most painful experiences life can offer - the death of a child, and watching a child suffer. You are still grieving for Gabe, and you are grieving for the healthy child you wanted Jonah to be.

You shouldn't feel you have to put on a fake smile and pretend to be fine, just because some people will tell you it's "Satanic" to express emotion (and they do, this week on the CB site of a dead child someone wrote in to tell her grieving mother the devil would get her if she didn't cheer up immediately...unbelievable). So you get mad girl. And if it feels like the darkness is overwhelming you, don't be afraid to reach out for help. From EB friends, family, or professionals if you need it.

Anonymous said...

So many comments...I'm sure I'm not going to say anything that anyone else hasn't said. God loves you and Jonah. He has His hands and eyes on you.

A couple of other things ...

Have you been in contact with the early intervention program? They can follow him to make sure he's developing properly and I think provide respite care.

An acquaintance has a rare skin disorder that makes it appear that she has been burned from head to toe. I think she doesn't have sweat glands. You can probably count the strands of hair on her head. She doesn't have eyebrows or tears. Her parents raised her to believe that she was the most beautiful, confident woman in the world. Her husband and three children think so too.

Anonymous said...

I once read that if you put vicks vapo on a babies feet it is absorbed better. I do that now and it really works! Hope it helps...

courtney said...

Completely understood--and yet I don't understand at all.

Lifting you and your family up in prayer today.

Anonymous said...

Welcome to MOTHERHOOD...the land of worry! ALL mother's worry. You worry about your child fitting in, having friends, being picked on, having a prom date, finding a soul mate, having someone to hang out with, having someone to confide in, driving safe, staying away from alcohol, staying away from drugs, staying away from bad influences, having good manners, finding a good job, getting good grades, their health, not getting enough sleep in college, having people around them that love them. You are just a normal MOM! We WORRY! I've been told that worry is present only when faith is absent, but as a Mom it is hard NOT to worry about your kids. You are doing a great job. Never doubt yourself as you are proving every minute that you are doing great. Do take some time out for just you and your husband (even if it is a 10:00 p.m. movie outing or ice cream run after he's asleep for the night) while a family member watches him.

Anonymous said...

Praying for you and Jonah. Jennifer in Southeast, NC

val said...

{{hugs}}

I am praying for Jonah & your family. You are a great, awesome mother who is dealing w/ alot on her plate right now. It's ok to be angry. God understands. He will guide you through this, I know he will !!

Anonymous said...

You have a right to feel the way you do. Praying for God's help with Jonah's congestion and eating and also for peace for you.
Kathy Stevenson
C.O.L.E. Prayer team
www.colesfoundation.com

EHW said...

Continuing to love on you and your family and continuing to pray for strength, endurance, healing, and patience for all of you!!!

Your honesty is truly AMAZING!!! You are a WONDERFUL Mommy and Jonah (and Gabe) are BLESSED that God chose YOU to be their MOMMY!!!

I have not read through the comments, so this may have already been suggested... but- ask your ENT if you can use some sort of long/skinny tweezers to grab those dried up boogers out of sweet Jonah's nose... maybe when he's asleep??? Not sure if it would cause more irritation to his nostril lining if the booger is pulled off or not???

Much Love and MANY prayers from Elaine in Lubbock, TX

Anonymous said...

praying! we love you
Erica

Jane said...

I am so sorry to hear about Jonah's congestion and not eating well. I pray that improves. I am sure the little boogers don't help, maybe he will sneeze them out. And sweet Patrice, don't worry about Jonah being loved, beauty is only skin deep and God gives children with special needs something extra and they are loved by everyone. Sure he might get teased by younger kids, but kids have a tendancy to be cruel at times and really not know it, even some healthy kids go through the same thing. God has made Jonah a tough little boy so far, and maybe He will make him strong enough to handle anything that is said. But you need to concentrate on the present and the future will take care of itself. You and Matt definitely need some time, try to make a date night to go out even if it is an hour. I am sure your mother or Matt's mom would be glad to watch Jonah. Also you might talk to your doctor about giving you something to help you relax or some anti-depressant meds. You have been on a roller coaster for a long time now. Your feelings are not uncommon. Most new parents go through withdrawals of not being able to do the things they have done in the past. You and Matt have done a super job as being parents and I know you will continue. Jonah is your first priority and all the rest will come later. Hang in there, and just know you all are in my thoughts and prayers so much of the day. (((HUGS)))

Carla Burlando said...

I just found your blog via a button of your adorable little boy. My heart aches for what you are going through. We lost our first son at birth but since then have had 3 more healthy children. Jonah is such a cutie, his owies make my heart hurt for him. It must be hard always having people stare and wonder what is wrong with your kid. When my youngest son was a year old and an infant (before we discovered all his major food allergies) he was covered head to toe with horrible scabby eczema. It was so nasty looking. He was always bleeding on his clothes and he would scratch and scratch. He had what looked like cigarette burns all over the backs of his legs..round oozing scabs. Try explaining that one to horrified stares. He wore long pants for most of his first two summers. I know its nothing like what Jonah has so I hate to even say it. I was so frustrated, we tried everything to help him...I can't imagine what it would be like to take it to the extreme. It must be so extremely frustrating not to be able to help him! My heart goes out to you. You guys are so strong and Jonah is lucky to have such loving and devoted parents !

Michelle in Va said...

I sure hope you are feeling uplifted by all the people who so love you, Matt, and of course sweet Jonah. In church yesterday, our sermon was on compassion for others and how God has such compassion for us all. There are plenty of good people in this world who will see Jonah for who he is, not for his external appearance. We, as mommies, always will worry about our children. I believe that is what makes us good mommies. I have a 19 month old toddler, who has been so bothered by all this pollen in the air, as well as myself. Jonah could just have some allergies from his day out. My son is fighting his second sinus infection in 3 wks and I woke up with no voice. This pollen is something. Jonah could just have the congestion from his day out. I know it is hard not to think all his symptoms are related to his EB, but he could just be choked up from the day out. When these little ones don't feel the best they tend to not eat well either. My son is a ferocious eater, but these last 2 wks has had hardly an appetite. I agree with some of the other commenters, you need to talk with your dr about possibly being on a mild anti-depressant, at least for a little while, your body has been thru two births within a year and you have had so much on your plate. I had to take something for just a few months after my son was born and he was perfectly healthy, I was just totally overwhelmed and I am such an upbeat person, it was hard for me, but with a small dose anti-depressant for a few months, I was a new person. Take time for you and Matt and time for youself, to keep your santity. Go for a lunch date with friends or just go to Target, to cheer yourself up. A change of scenery for a few hours will do you wonders, I promise. Please take care of yourself, so you can continue to be the best mommy to Jonah you can. Continuing to pray.... God is so good!!!

Peggi said...

Praying for your family. Love the pics of Jonah the other day with the funny faces, he is so cute! I was reading Mcmammas http://www.mycharmingkids.net/ site today and someone made a slide show for Stellan. Check it out, the song is beautiful. When I was listening to it, it reminded me of you. The song is He's My Son but Mark Schultz. Take care and hang in there. God loves you, and He most certainly loves Jonah.

Jill said...

Patrice - If you can handle one more piece of information, here goes.

This is a new product I just found,
http://www.sinucleanse.com/product/kidsmist.htm

According to the information, it is safe for newborns. My thought is if it is a mist, it may go up a little further than the drops to try to loosen things up (sorry for all the prepositional phrases there).

Hope you find something that works that you are comfortable with the safety.

I do have to add. I love the belly shots from the tub. It's great to see how he has filled out.

Matic Studio said...

Patrice,
I know you dont know me, but I just read your whole blog to my Mama over the phone in CA and we both wept a prayer for you and your family, for peace and wholeness and normalcy and miraculous healing for your sweet Jonah.
God bless you and know you are being fervently prayed for by us all!
Bless you,
Leah

Alisha said...

Praying for him! I think what you are feeling is normal! Hope you all have a good day soon.

LucieP said...

your post is so real!
I am sorry you are feeling this way.
I hope that the congestion gets better and his appetite grows more.

Praying for you

Martin Family said...

Patrice, any mother would feel the same way if they knew the cruelty of this world...But Jonah is blessed with amazing parents that will do all they can for him. He may have rough times, but he'll get through them with your help. I have so many thoughts running around in my head,and no real way to get them down here for you, so know I am praying. Not for your feelings to go away, but for them to be used for God's glory.

And praying for Jonah's stuffiness. Wish I had a cure-all, but all my suggestions you have already done to the best of your abilities with Jonah's sensitive skin. So, praying hard for you all!

Mommy Attorney said...

You are only human. Of course you're going to feel that way.

Another suggestion for the congestion - elevate the head of his crib (just put something sturdy under the mattress on one end). That seems to help a lot with MP.

Michelle said...

You have EVERY right to feel the way you do. You love your son and don't want to see him suffer. Just know that we're all out here in blogger world praying for your sweet boy!

Lorraine-bo said...

I think it's good that you share when things aren't feeling so great because then we know how to pray for you.

Jonah is a beautiful boy, I adore looking at his pictures and I'm so glad that you take pictures in Target (my favorite store, too!).

May you not hear the enemy, but the Voice of Truth as you grieve the dreams you have for your son that will probably look different now.

With prayer,
Lorraine

Melissa said...

Patrice, hang in there, girl. You have a lot on your plate and your feelings are totally justified. Yes, there can be some satanic element fueling them, so beware of anything that does not match what your Shepherd's voice sounds like. But your emotions are God-given and completely acceptable. He understands and isn't offended by you wanting a freakin' break! Surrender those emotions to God daily, hourly if necessary, and let Him shoulder the burden for you.

I can only imagine how concerned you are for Jonah and his future, especially where people's acceptance or rejection of him are concerned. Pray for God's protection of Jonah's emotions and trust Him that He will protect Jonah. Because, yes, people will say and do hurtful things to him. That is just a given in our society. But, quite honestly, he is such a beautiful boy that anyone with a shred of heart will look past any sores or scars and see the beauty that is physical on the outside and God-given on the inside, as well.

Thank you for your transparency with what you are thinking and feeling, because it certainly helps to give direction on how to pray. And I will continue to. I count it a privilege.

You are so loved and so supported by so many.

Blessings to you today!

Aunt Theresa said...

One day at a time....let the Lord take care of the rest.
You are doing great!

melissa said...

I'm feeling the exact same way right now about my own baby...I'm thankful you were brave enough to put it to words. I feel like I have to hide it and pretend like everything is OK when I'm really just so angry sometimes.

Elizabeth said...

You are an angel. You are a miracle. You will survive. Today is just a bad day. Tomorrow will be better. Hang in there.

Anonymous said...

I don't know you, but i do know that there are people praying for you all over, I for one forwarded your blog around on facebook...
so with that said I am leaving a little note, I think you are entitled to be angry for Jonah...thats a normal feeling of any parent...You deserve a medal...
Keep your head up "where God guides he provides" I saw this bumper sticker ona car this mroning on my way to work...and I feel it fit when I read your story on WRAL, that Jonah was home, and then your blog from 4/26/09...Keep praying anyway you can...he is the God of all miracles...
Christie Bliven
Manteo NC

J said...

I am a mother of 3 boys, possibly number 4 will be a girl and we can bring back arranged marriages? :)
Our second son has a mysterious blood disorder which causes his blood to not clot. I was overwhelmed his first year with constant thoughts of "What if we are in a car wreck? What if he breaks his arm?" etc. etc.
It is okay to be angry. God can handle it. You are in my prayers as is that beautiful baby of yours.

Anonymous said...

Oh, Patrice. Thank you so much for your openness and your honesty. You write so beautifully so many things that I'm only brave enough to write in my journal. You've certainly inspired me to be more real with my faith and the things that make me frustrated and mad!

I am so thankful that this world (and its cruelty) are temporary, and we have the hope of living as God intended forever in heaven without EB (or other health issues)and sin (if we want to get really excited)!

Your worry about Jonah and a girlfriend one day was so sweet...and really touched me. I'm a single 31 year-old who wants to be a wife and a mom so badly, and I am single. In fact, I have been for all of my life (except for about 3 months early in college). While I do go through periods of frustration and have often wondered why (which is usually sparked by friends telling me they don't understand why I'm single either), God has been incredibly faithful in reminding me that His plans are greater than my plans...His ways are higher than my ways. He's used my singleness in SO many ways and has even convicted me (on multiple occasions, which I needed because I'm stubborn) that He's protecting me for something greater. Whether that's marriage at the right time or whether it's other things in life He has planned for me, I don't know, but I'm excited to find out.

Being single can be experienced by anyone - EB or not, beautiful (which Jonah is, by the way) or not, funny or not, smart or not, tall or short, etc. If Jonah is single, God will use that and take him on an amazing adventure with opportunities he couldn't have if he were married or dating someone.

The hardest part for me early on was a receiving a message that "if" I wore more make-up or "if" I wore jewelry or "if" I was a better athlete, the boys would notice or ask me out...now that's a lie if I've ever heard one (I know now!)... I'm confident that Jonah will never hear that "if" message (the boy-appropriate one, of course)...I am confident that he'll hear messages from you about how he is fearfully and wonderfully made and about how many people love him because he's Jonah and about how God is working mightily and powerfully because he's Jonah!

And then when he needs to hear it from someone else, he can go to this blog and read the comments, and he can go to his email and read his messages. He can read all the stories about all the kids who always ask about Jonah and want to check on Jonah and want to give Jonah kisses and soft hugs and who want all his boo boos to heal...He'll know he's loved because of who he is.

Oh, you have one blessed little one!!! God has an adventure planned for Jonah, and I know you and Matt are the perfect parents for him to support him along the way!

May God bless you in that hope! AND may God bless Jonah with a booger-free nose ;)!

Laura

Susan said...

Praying for comfort and relief for you during this difficult time. It's hard to see from the inside, but God has you right where he wants you. He gave you the perfect little boy and gave Jonah the perfect Mom and Dad. I hope your hard days are infinitely outnumbered by the good. Take care!

Susan in NC

Anonymous said...

Matt and Patrice,
I am so sorry that you are being challenged by Jonah's condition. I know God is listening to your cries for help and all of the prayers that are being lifted up on behalf of Jonah. I hope it helps a little to know that your sharing this has heightened the awareness of EB for folks worldwide. Consequently, research will be done and a cure or treatment will be found.
I am volunteering to help any way I can. If it means driving you to the doctor, being a delivery service for meals, holding Jonah and loving him while you two take a few minutes to go out to eat, or holding him in a "safe" room at church so you two can attend and get some spiritual nourishment. If you're good, we'll see about an invitation to Sunday dinner with us. Anyway, please think about it, pray about it, and let me help. There are others who would be glad to help too (see Gina's post above) and we would be willing to take whatever training we would need to do so. Say the word, and we're yours. You have the phone number, you have the email address -- use them.
Know that thoughts and prayers continue to be with you.
Sandy W.

Katherine said...

Patrice, I've been pondering what to say to this post over the last 36 hours. For whatever reason, I just haven't been able to formulate anything that I thought would be of value, anything that would help. Although, interestingly, you only asked for prayer, so I don't know why I feel compelled to offer anything more than that. Perhaps I just LOVE to give unsolicited advice.

Really I just want to Encourage You.

- It's OK to be worried that he's congested and not eating.

- It's OK to admit that you've tried all the standard remedies and they're not working.

- It's OK to talk to God like He's your homeboy, in the North Carolina vernacular, and expect Him to understand and hope he'll comply.

- It's OK to be angry for Jonah, for yourselves.

- It's OK to mourn the loss of The Little Things, the lunches with friends, the dinners out, the movies in the theatres you'll miss, your job. They aren't Little Things ... they're the things that formerly made up the fabric of your life, things it's OK to grieve over. The new fabric of your life is different ... it can't be itchy, have seams or tags, and it's definitely an acquired taste.

- It's OK to hurt for Jonah, to fear for his future. Your fears are real, and they are validated by all the EB Web sites, videos, journal articles. But as I was telling my friend Liz, we can be so thankful that God isn't writing the journal articles. His hand is writing a different story, one that has already told us Jonah is one-of-a-kind. One that has proven that EB is different for every child and for every family. He will give him caring and compassionate friends. He will protect Jonah from ignorant people who might not understand his condition. He will provide the perfect young woman to fall in love with Jonah. JONAH WILL NOT HATE HIS LIFE.

(WOW, THIS IS LONG. I wonder if there's a character limit on Blogger comments.)

I just hate to hear the hurting in your voice. I know that you already know all of these things in your heart of hearts, but that anyone who is sleep-deprived and running on fumes would feel at a loss some of the time. I pray that you will feel a lifting of your spirit, that the Lord will blanket you in His peace today, that He will take this depression away from you and restore you. (I don't know any Bible verses by heart, so insert one you like here.)

LOVE YOU SO MUCH AND ALWAYS,
Katherine

Anonymous said...

Ever tried Vick's Baby Rub? Could you rub some of it around the rim of his nostrils? Just a thought. I used it when my little one was sick. I don't know if it's possible with his skin issue but maybe ask your dr if you can try that.

smith fam said...

I can't imagine Jonah hating his life when he is surrounded by so much love. He has so many things going for him such as a family that loves him beyond compare and refuses to give up or to stop fighting. He also has parents that are already teaching him what our true purpose is here on Earth. Jonah has parents that are teaching him about his Savior who knows and understands perfectly what he is feeling when no one else can. That alone is priceless and will give him comfort that he will need throughout life. On top of everything, thousands of people have fallen in love with sweet Jonah in the short two months he has graced this earth. Imagine the hearts he will steal in years to come! May God strengthen you as you and your family have strengthened us.

Love,

Natalie (Davis) Smith

The Carrolls said...

Sweetie! I know that you are mad and feeling very hurt. He is your baby and no matter what mommy wants to make him all better. I think of you all the time and I will pray that Jonah will receive some relief. It is hard and there is no way that any of us can understand completely what you are thinking and feeling but know that we are all mommies and we all know how it feels to be helpless and not be able to do something for your baby. YOU ARE DOING A GREAT JOB AND YOU ARE A WONDERFUL MOTHER! (((((Hugs)))))

Mandi @ It's Come To This said...

Praying for you & Jonah!!!

jcclifton said...

I will continue to pray for sweet Jonah and his amazing parents. I love your honesty and your williness to share your heart with us - your followers. I have no great advice that many of your readers post - just my prayers. Love and prayers from North Florida.

Karen & Shahin said...

Praying for you and Jonah. I know how frustrating and difficult it can be when a baby has a cold. Please, please take a look at this nasal aspirator http://www.nosefrida.com/. It looks very odd but it is extremely effective and does not go inside the nostril and cause damage of any kind. It is well worth the $15. or so for it plus some extra filters.

Much love,
Karen in Boston

Anonymous said...

I know there are a ton of comments on here already BUT I wanted to share..... My little 5 y/o with JEB-NH just started Kindergarten this year. I has all of the same fears you shared but my beautiful Wesley is greatly admired by ALL of the kids. As he rides down the hallway in his superman wheelchair, all of the kids say "hi", even the older ones. All of the girls in his class are in LOVE with him and think he is best thing since sliced bread, they send pictures home everyday that they colored just for him and fight over who is his girlfriend. All of the adults equally fight for his attention, seeing who can get the most hugs and kisses out of him and who he will pick as favorite everyday. I remember 5 years ago, being where you are now and NEVER even thinking that Wesley would ever be able to go to school, if he would even survive tha long. I do still here lots of negative comments but we try to frequent the same spots so that way people know him and don't ask as many questions. Again, if you would ever like to talk you can e-mail me @ chwstone@comcast.net I am also on ebfriends. It is a LONG HARD road but it is OH SO rewarding especially now that I see that others are able to see what I see in him, not only does he have beautiful heart warming brown eyes but he has the most radiant soul I have ever laid eyes on.

Heathe Stone

Anonymous said...

You know dear one, I missed Saturday's post entirely. I was so hung up on you having so many frustrations and for praying for Jonah I never saw the day of firsts! Those EYES in the tub! You need to print them out and you need to hang them where you can see them. Jonah knows what the good things are in life. He knows you love him. He KNOWS. I am still praying. I am still going to ask God to bless you and to heal your little one. But hang on to the great moments. They will pull you through the rough spots (and you sure are having them!). Jennifer in Southeast, NC

Anonymous said...

Jonah is absolutely precious! Those big blue eyes are gorgeous. Nobody can truly understand how you feel until they have walked in your shoes. My son is nonverbal, cannot walk or sit up, and is in a wheelchair. Many of the feelings you have, I too have felt. It's very normal to have days like that. Jusr remember, Jonah was given to you for a reason and he is lucky to have you and Matt, and you are equally lucky to have him. I will continue to pray for all of you.

Garrett and Carrie Kell said...

Sweet family.....Of course, I am just another blog-follower whom you do not know, but I did want you to know that we are praying for you. I have been reading about sweet Jonah since before you left the hospital. There are no words to change how you feel, but I am so grateful for Truth that ALWAYS defeats our feelings. I am thankful you guys know the TRUTH, and am certain the Lord will continue carrying you through this time. I will be anxiously awaiting to see all the ways God uses Jonah and your family for HIS glory.
"For we know that God causes ALL things to work together for good, to those who love Him and are called according to His purpose." Rom 8:28. I was reading about the "unfair" life of Joseph tonight, and SO reminded of God's Sovereignty over life. Praying for you sweet sister and your gift, Jonah.

valerie said...

Patrice,
I admire you so much. You are a wonderful, loving, caring mom to Jonah. He is blessed to have you for his mommy.
I am praying that Jonah's congestion will clear up very quickly so he can eat again. Bless his heart!
I don't understand why God is allowing all of this to happen. I think it's normal to question though.
I was just reading the other day in Psalms where David was crying and pouring his heart out to God.
I believe God understands and invites us to do that.
He created us....he knows when we hurt.
Although we don't understand His ways, we know He is faithful and He is able to do more than we could ever ask or think. Nothing is too hard for our God.
I'm believing God to give you a very special strength Patrice.
You are amazing!
God bless you,
Valerie in Oklahoma

Patti said...

I'm watching late night HGTV, waiting to nurse my 3 month old once more before I sleep, and thinking about you. I just want you to know that you are not alone in your grief and indignation. There is no justice in Jonah's pain. It simply should not be. And though it has not taken Him by surprise, God weeps over it with you. His eye is on the sparrow, how much more on your boy with his soul made for eternity.

MelH said...

Patrice,
Just sitting here thinking about you tonight. Hoping you are getting rest and Jonah is feeling better today. I think about you all so much and pray just as often. Jonah is loved, girl, more then you know and although his path in life may have began mnuch different then most of us, I know in my heart he will be just as loved IF NOT MORE then most of us during his life.

I am rambling now. Just wanted you to know you are on my mind and in my heart tonight.

Much love
Mel

Radar's Mom said...

Dear Patrice,

You sound pretty darn human to me and very much like any new mom, but to the 10th degree since your darling Jonah faces so many physical challenges. Each of us worries terribly about our child's well being and happiness, and it would be insane for you not to be angry and worry about Jonah and his future. Having known people with various disabilities, I imagine that Jonah's life will be harder in so many ways, and easier in many ways. What I mean is that in so many ways life with disabilities and life when you don't "look" like everybody else is hard... others can be mean, inconsiderate and non-accepting. However, those people who accept, value and love Jonah will do so tenfold. Jonah will have you, his wonderful parents and family who will always make sure he knows how valued and loved he is, in ways that far exceed the support that most people receive from their family. His true friends will love him, accept him, value him, defend him and protect him in ways that exceed the friendships that most people have.

It is normal and right for you to worry about Jonah, but please have faith that there is plenty of goodness and love in this world that will allow Jonah to find his place and that it can be a very happy, fulfilling, loved and normal place, no matter the challenges he faces.

Praying for Jonah and for your hearts!

Andrew and Trisha said...

My heart, my prayers, and my tears go out to your beautiful baby boy. They also go out to you and your whole family. I have no idea what you are going through, but I do know that I consider you to be a personal hero of mine, and I've never even met you. Your conviction and faith are inspiring, and my heart breaks for the pain you are all going through. Jonah's life will be no ordinary one, but it will be blessed in ways we can't even imagine. I pray for your son and for you... with my whole heart, I pray. "May the Peace of God, which surpasses all understanding guard your hearts and minds in Christ Jesus."

Tickled Pink And Green said...

One time I was talking to a guy at our church who is a counselor and I told him how angry at God I can get sometimes (but for silly things, NOTHING like the hell you must be going through) and he reminded me of how many great men in the bible got very angry too (and gave me some verses to prove it which I wish I could remember right now)...Anyway, after he told me that, I felt a WHOLE lot better!

Anonymous said...

You and your family are in my prayers. Kristen Crider is a friend of mine and forward me the link to your site. Jonah is a gorgeous little boy - beautiful eyes, lips, and nose - such a pretty face. He will make friends, he will fit in, and he will find true love. It's never too early to pray for these things - I have already started. He will do great things in his life because he will know God because of the Christian home and love you are providing for him. You are both doing a fabulous job already.
Andrea H.

Preppy Coastee said...

I wish I could hug you!! I know I dont know you but I'm so sorry your going through this. And I want you to know I think Jonah is absolutely precious. Those big blu eys and pouty lips and all that hair! I think he is just precious!!

chinamoon1420 said...

My heart aches for you. My son has medical challenges also. Hemophila A severe. We have been through some pretty rough stuff but nothing compared to what you must endure daily. I would be a basket case aching for my son. I so admire the way you are handling this. You son is so beautiful. I truly mean that. HE IS BEAUTIFUL. I am keeping you in my prayers and it is good that you have an outlet like this. It is no nice to get your feelings out. I just figured out how to get your updates so I am going to fix things so I can keep up with little Jonah. Keep your eyes open for the silver lining. It is there. God makes sure it is there when we have to go through these challenges with our children. (my son is 20 months)