Sunday, February 7, 2010

new exersaucer

Here are some photos from the last couple of days.


I went out right before our latest ice/snow storm (Thursday night) and got Jonah a new exersaucer. He's gotten bored with his no toys, simple one, and even if I put toys on the tray, he picks them up and throws them on the floor on purpose. So instead of being able to get some things done, I end up playing pick-up, and it's not so fun for either of us. I actually wanted to get him a walker, but they only had two and I didn't like either one, so this is not only an exersaucer but sort of a walker too. It has one stationary leg, and the other two have wheels, so once he's ready, he can walk it in a circle. I just have to be careful with this one and keep an eye on him. As long as he plays with it gently it seems the hand blisters he gets are minimal. He has had a few more than usual though. Still worth it for him to get to play. He seems to like it pretty well, but in the nature of Jonah, nothing really keeps his attention (except TV) longer than fifteen minutes.




Hangin' out with Dad. This one is from yesterday. Matt's hair was covered in slobber after this. He was somehow surprised by this even though Jonah was actively eating his hair the whole time he was up there.


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Please be in prayer for Baby Andre's family. He had Junctional Herlitz EB and died today. He wasn't even three months old.

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I'd like to say I'm feeling much better and I'm back to my normal self, but I'd be lying. I just can't seem to snap out of whatever this is. I feel like my energy and strength have been completely zapped. I've run out. I don't know why, after 11 1/2 months, all of this feels so heavy. It's weird because, besides his little boy part issues (still going on) and refusal to eat solids, things aren't really any different than they've ever been.

I keep praying that I'll stop feeling sorry for myself and snap out of it. I know Meg and Courtney and all the SMA moms and about a million other moms to special needs kids have it way harder than I do. In the scheme of things, we are super blessed and things are so much better than they could be. My head knows that. My heart is harder to convince. I get so mad at myself because I know that I have so much more help and support than most people. I'm completely surrounded and could call on about 20 different people at any given time, and they would be here. But somehow I still feel isolated and like nobody really gets it.

It's so frustrating.

On another note, a couple of you asked how I would want someone to ask/approach me about Jonah. I can't speak for any other moms, but I know I LOVE for someone to look at Jonah and smile (either at me or at him). And I like it when they say that he's cute or comment on his eyes because it lets me know that even if they are noticing the blisters (which of course they are), they can see beyond them.

As far as what you should say (should you feel the need to ask), don't ever say, "What's wrong with your baby?" Obviously something is "wrong" but we don't need it put that way. If other special needs moms feel like I do, the last thing we want is for someone to remind us that there is something "wrong" with our kids. We feel isolated enough as it is. I've gotten asked if he got burnt or has the chicken pox. I guess that's fine, but as far as asking a "what's wrong" or "what happened" sort of question, I don't really know what a nice way of bringing it up would be. I'm not really one of those people who would approach a stranger about their child's disability (not saying there is anything wrong with that) so I don't know how I would ask.

Honestly I think I would just rather be left alone most of the time (or maybe that's just because of this funk I'm in.) I think when I get out I just want to get to pretend for ten minutes that everything's okay and "normal". I mean I guess if you were asking for the right reasons God would give you the right words. I certainly haven't been offended every time it's ever come up... I just can't remember right off hand how it was brought up those times. I think compassion and loving concern are always conveyed with a smile and body language even more than what you actually say.

I love the idea of the cards to hand out with our blog address and a little info about EB. It's just not something I have time for right now. I do want to educate. I hope it doesn't seem like I don't. I think awareness is huge. But really, I'm just not in a place right now where I can be some huge advocate to complete strangers when all I want to do is run errands and enjoy being out the one or two times a week I actually get out. All I want is a break from EB. And having people point, stare, and ask uncomfortable questions while we're out (trying to get that break) is sometimes just exhausting. I can't really explain it. I'm sure it will get better with time, but right now I'm just in a "I really, really hate EB, and I think its initials should really be B.S., and all I want is for Jonah to be "normal," and I want Gabe back, and I want what every wife/mom dreams of: healthy kids" sort of mood.

I know God has a plan. I know He won't take me anywhere He can't get me through. I know He is with me. I know (believe me, I know) that Jonah is a huge blessing. I know that God is using Jonah, and that Jonah's story is daily bringing people closer to God and his testimony will bring God glory.

I get it.

But I don't always have to like it.

50 comments:

Beth said...

"But I don't always have to like it."

Very well said, Patrice. I get so tired of people saying, "I just want a healthy child" when they are pregnant. Well, yes, that is what everyone wants but I find myself thinking (and sometimes saying)"what will you do if your child isn't healthy?" So many moms (myself included) have faced that situation. I ADORE my son, but it isn't the life I wanted for him or for our family. I know there is a reason......but I don't have to like it.

Alison said...

So sorry you are still in this 'funk' as you call it.

For what its worth, if I saw you in the shops I would be so excited I would shriek at the top of my lungs "OH MY GOODNESS that is gorgeous baby Jonah!!"

Laura A said...

Hi Patrice-

Thanks again for sharing your heart with us - even the painful parts. I know I can't change any of this for you, or even lift the funk from over you, but I'll continue to offer my prayers and love.

Loneliness is not fun - and strangely, I do understand that it's not about having people around you. My prayer for you is that God will give you peace and encouragement.

Jonah is truly a beautiful boy. My kids (especially Caroline) adore him - Caroline asks me daily if "Mrs. Patrice has any new pictures of Jonah!" She'll love looking at these.

I hope the rest of the weekend is restful for all three of you, and that Jonah will enjoy his first Super Bowl. :)

Love,
Laura

merlin said...

When life hands us a bigger-than-we-can-handle challenge we find ways to cope, we set mileposts for our survival. And we practice gratitude along the way because life has already dealt us hard stuff and we know that despite our situation we are actually blessed.

I think we hope that when we survive and arrive at the next milepost we hope, pray and believe that not only will we arrive there but that our challenge will have been overcome or for goodness sakes become smaller, more manageable. Yet the reality is that we arrive there only to find that nothing has changed, in fact the challenge has seemingly evolved into a bigger one.

Uh, hello God, are You there, are You listening? because I am holding up my end, I am plodding along, surviving and arriving, practicing gratitude, yet You seem to think I am bigger than I am because it never gets smaller or easier, God are You there?

God is there, sometimes we just need to pause a while, rest, catch our breath, reflect and gather strength to carry on.

My teenage son saw Johah's picture when I was reading your blog awhile ago. He asked me what happened to the little boy,but before I even had a chance to answer he said "he looks like a happy guy"

Yes, Jonah does emanate happiness, your love and the love of God shines from him.

Blessings to all.

Stacey said...

Just wanted to send a smile your way. Jonah is so beautiful and so are you. Praying for you today.

My brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience. But let patience have its perfect work, that you may be perfect and complete, lacking nothing. (James 1:2-4)

Wanda Wilkinson said...

Jonah is so precious...i enlarged the pictures of him & that 3rd one (where you can see all 4 bottom teeth) is so sweet..I could kiss that little face until "pigs fly"..he is adorable.

I wish I could take your funk away, but I can only pray for you. I have talked with more people lately that are in a "funk" so not sure what is going on unless it is the cloudy/cold/yucky weather. Lack of sunshine does have a negative influence on us. Hopefully with the sun coming back all of us will get back to being on the up side.

I will keep praying & asking God to shine his glory on you and give you what you need most.

Keep plodding along one day at a time...Give Jonah a hug & kiss for me.

Go Saints for Mr. Tripp....

Sewconsult said...

Jonah looks so cute. I like the idea of the cards. I have to tell you that I have learned so much from your blog. Yes, it pains me to see the blisters on Jonah, not because "how he looks", but I know that it causes him physical pain.

Thank you for sharing with us. It is important that we learn of others' battles.
Beckie in Brentwood, TN

RLR said...

Thinking of you - hoping the funk melts away as quickly as the latest snowfall seems to be!

Layla- Miss CanAm said...

Jonah looks too cute in his exersaucer!! He looks so proud of himself!!

I had a question about EB- I was watching the Little Couple the other night and they can do genetic testing to ensure (through artificial insemination) that their child does not receive a recessive gene from both of them which would essentially lead to death after, and if, the baby was born. Are you and Matt able to do that to ensure that a future child would not be born with EB? Since you have had two children with this is it assumed that any other child you have will have EB?

I was thinking of Leah's mom today and wondering if she should have another child, would that baby be born with EB- I sure hope not- no one should have to go through that twice- as your family has.

I hope you funk ends soon- I know we all get in them and your strength gets me through mine :)

Drama Queens said...

Long time reader even though I hardly ever comment. I have no idea what you are going through right now. I was a nurse for several years in the NICU and saw pain and heartbreak, but haven't experienced long term medical issues with my own children. I DO however have a suggestion for you-take it or leave it--have you thought of getting one of the SAD lights or even going tanning? (i know people, jump all over me for saying the word tanning). I know it sounds crazy and I can only speak from experience, but it sounds like you all are having a rough winter over there and it won't solve any of your problems with EB-but the light may do you some good. I lived in Portland, OR for several years and discovered I had a big problem without the having the intense heat and light (I'm originally from Idaho and although it is cold, the sun shines a lot). I am sure it would be hard to break away-but you could try it if you wanted.
I am praying for you all and wish you only the best. And-I have to tell you I was in a funk a few weeks ago (it was cloudy) and I don't have anything to complain about. It happens, you are blessed-but it's ok not to be happy all the time.
--Sarah

Angela said...

Hmmm...I agree...it's kind of hard to know how to approach a stranger and ask about a disability. I certainly never would have done it before my Benjamin was born, but after he was born, I had a need to reach out to other moms who had babies/children w/Down syndrome. I even stalked a girl in the cardiologist's office once only to lose her, but the park next to her at a DS event two months later!
I went to www.vistaprint.com and had "business" cards printed up with my name, blog, email, etc. on there so I could hand them out. The cards (I think 500) were free, and I only had to pay shipping. I have used them on numerous occasions.
I'm sorry you're still in a funk. But it's okay. Don't beat yourself up that it's been 11 1/2 months, etc., and you're still not "okay" with this. There is no magic timeline. I used to feel like I was a failure as a mom or like I was disappointed in Benjamin if I wasn't always 100% with his diagnosis. But that just left me ever more depressed b/c I came to realize that it's not acceptance of the diagnosis, it's just of Benjamin. And of course I accept him and love him and cannot imagine my world without him. All the rest sucks sometimes, but I just have to try and take it one day at a time.
(((hugs)))

Meg said...

Your little boy is beautiful, I don't ever see his blisters. God has made him so special and perfect. When I see him, I see beauty and cuteness completely. I know I would see this all too if I'd seen him for the first time in person walking through a Target store. Jonah is a radiant little boy, and it's obvious to me God has touched him in a very special way. He beams, shines and is just plain adorable.

Penny said...

I have that same walker, but an older version from 5 years ago. Bought it on clearance for my grandson after the first was in all my cabinets with a regular one. =) After my youngest grandson fell out the door and onto concrete in a regular one (not on my watch) I love the fact that he can't go far in it. (The grip on the stationary leg is getting slick and he is able to drag it a little ways.)
Anyway, I know how rude people can be when a child has a disability, but it's inexcusable to walk up and ask "What's wrong with him?" My youngest suffered with Selective Mutism for 14 years before she was delivered from it. I got asked that question a lot from people that didn't know us. She wouldn't answer their questions and would just look to me to answer. I told one lady (that was being rude), "Nothing's WRONG with her, what's wrong with you?" She was browbeating my child at school to tell her her name and my older child was telling her that Shelbi didn't talk. She would try to force Shelbi to answer for herself. I wanted to punch her. Fortunately, those people were few and far between and I saw more of the goodness and compassion in people (even her little classmates) come through because of her anxiety disorder. The way people reacted to her disability, was like a window into their hearts and most around us had a really good heart. You can read about her victory over this disorder on my blog if you'd like. The posts are listed in my labels under "miracles, faith/Selective Mutism." God bless Patrice. And you do have a gorgeous little boy with the most amazing eyes ever. That probably draws more stares than the blisters. I, being a serious babyholic, would probably be one of the starers. Seriously!

Jill said...

My daughter has spina bifida and we often get the "What's wrong with her?" question as well. And my snippy response is always, "Nothing is wrong with her, what's wrong with YOU?" I'm working on improving that response and trying to educate more, but there are just some days that I don't want to educate.:)
And I'm sorry, but if I ever see Jonah in real life I would HAVE to meet him and you of course! Ha!
Speaking from experience, the funk will stay for awhile, go away, and unfortunately return from time to time. The weight becomes too heavy sometimes. At least that has been my experience. I'll be praying that the funk leaves soon!

Stephanie said...

Hi Patrice...I second the thoughts on SAD. I grew up in FL and moved to NY as an adult. I now have regular, almost predictable "down times" in the winter when everything seems harder, heavier, and just generally more sad. That is not to minimize anything that you deal with on a day to day basis, but things can feel so much worse when you it is yucky and gloomy outside.

On a lighter note, I am loving how Jonah's hair is getting so long and thick! So handsome! All my babies were bald as little onions.

We continue to pray for you, Matt, and sweet baby Jonah. Can't wait to "join" you in celebrating his first birthday very soon.

dragynflies said...

While I don't have any children here with me (I have lost nine pregnancies due to premature labor or miscarriage), I do take care of special needs children. I've found the best response for the question "What's wrong with them?" (which I get a lot if one my little ones has a tantrum or problem behavior in public) and often it's "S/he has autism/cerbral palsy/fetal alcohol syndrome/downs. What's your excuse?"

I am blessed to work with some amazing children. And while I likely will never run into you and Jonah, as we live in totally different areas of the country, if I ever see a little one that looks like they have EB, because of you and Jonah, I will be overjoyed to compliment the parent on their beautiful baby.

Bless you for being such a wonderful mother, and Matt for being such a wonderful father. Jonah is so lucky to you have you for parents. We've never met or spoken, but I was directed to your blog by a friend and I feel so honored that you share your life and your beautiful sons with us.

And in heaven, I hope my kids aren't too much of a bad influence on your little Gabe.


Tasha (Piper_W@hotmail.com)

Dame said...

I don't think I've commented on your blog before but something you said really rang out to me..

"I keep praying that I'll stop feeling sorry for myself and snap out of it. I know Meg and Courtney and all the SMA moms and about a million other moms to special needs kids have it way harder than I do."

I don't know if this will really make sense to you... but don't feel bad for feeling the way you feel. While compared to some situations you may be blessed it doesn't make how you feel any less valid. Try not to beat yourself up for feeling the way you do, those are your feelings and you have every right to feel them! You have every right to feel sad, or isolated or overwhelmed or anything else that goes through your mind. Its okay! I've gone through some rough patches in my life (like anyone.) I spent a lot of time (and had people tell me this) thinking about how there were people who went through worse situations. How can I say that my life is miserable from abuse when there are people, families out there who are hungry or homeless and have it worse. And you know what? That's true, but I still had the right to feel the way that I did because of what was happening to me. I still had a right to pain, to the hopelessness. I know this is so easy to say, but don't let yourself feel bad about... feeling bad. If you want to just be sad for a little while - be sad, its okay to be sad. If reminding yourself of everything you have helps you bring yourself up, then that's fantastic! (Focusing on the positive can be a really productive thing but it can be negative too sort of like you mentioned here.) But don't beat yourself because you can't deal with some things as easily as others seem to manage. They aren't you, and this it how it makes you feel - and you are always entitled to that! If you need more help and encouragement then others - then ya just do!

Maybe having someone you can just let go entirely to would help? (I'd suggest a counselor, particularly a Rogerian one but I'm not sure how easy it'd be to a. find a good one & b. fit the time in there.) Perhaps finding a friend who wouldn't judge you, who could just listen to and offer support without trying to offer you advice or solutions? (Although I realize its a pretty tall order, its easy to "be there" but to really do it with no judgments or advice is a lot harder. Which of course I am saying while... offering advice. Oy.)

Katherine @ Grass Stains said...

Love you so much and can't wait to see you later in the month. Hate that you're still feeling so whooped emotionally and hope that being surrounded by friends and family will make your heart smile again. Love you!

Traci said...

I want to let you know that I am praying for you guys. My 5 year old daugher saw Jonahs pictures last night and asked what happened...how did he get hurt? I told her God gave Jonah special skin that can get blisters very easily. She said,"oh, poor baby...if we meet him mommy I will not touch him because I do not want him to hurt. Can we do anything for him?" I told her we could pray for less blisters and pain...she said ok....he's sooo sweet.
If only some adults were as compassionate. I check in on you daily and if we lived near each other I CAN GAURANTEE we would see each other at Target...it's my favorite.
Praying for your renewed spirit and Jonah's healing.
TRACI

Jill said...

Praying for you today. You have every right to feel the way you do, no matter how long it's been, or how much help you have. Thank you for sharing your heart with us and I hope things turn around soon.

I can't believe he's going to be one soon! Praying the cake/frosting will get him interested in solids!

Milles Family said...

That has to be one of the best pictures of Matt and Jonah to date! That is mantle worthy! :O)

It is so good to see Jonah doing all the things babies should be doing...like playing in his exersaucer and pulling his daddy's hair.

Although, I rarely leave comments know you have one more prayer warrior on your side!!!!

God Bless!!!

CastingCares said...

I have this really cool exercauser that my sister in law gave me. I don't use it anymore and I would be glad to send it to you if you even wanted to try it. They can turn in a circle as well as walk back and forth for about a foot and a half. I'm trying to find a link to show you a picture. My son really loved it and it gave him freedom to move, but it was still stationary. It's just big. I'm sorry you are feeling bad. You still have a lot of grieving to do. Jonah is gorgeous though and you are doing a great job! Don't forget to get your thyroid checked also.

Gotta go,
Shannon

Mommy Attorney said...

I saw your cardboard testimony on Kelly's website. It brought me to tears.

Jonah is so beautiful. I pray that you get out of your funk.

jenlar3 said...

Patrice, can you put cheerios on his exersaucer tray and let him experiment with those? I know they are a good first food because they dissolve in saliva, (and since they have a hole in the middle, even if they get stuck for a brief moment, it doesn't obstruct breathing). I know Jonah can get blisters in his mouth, so don't know what would be okay for him to eat. Maybe frozen peas or little (cooked) carrot cubes. Maybe Jonah just wants to be in control of his own eating? Praying for complete and total defunkification soon.

Krystal said...

I think Jonah looks like you, Patrice!

Praying for your strength, rest, comfort, peace, and wisdom. You're doing a good job!

Hugs!

Courtney Roth said...

Girl you always hit the nail on the head.
It's so hard for anyone else to know how we feel about our little special baby boys.
I love you so much and I have been in that same funk. So please, please call me if you ever get a minute. I'd love to chat again. Just that 15 minutes last time made my day!
Hang in there, you are such an amazing mommy.
And once again.... The cutesy pictures ever!!!
Love, Courtney

Susan said...

I have followed your blog for almost a year.
My daughter had a daughter with a severe cleft lip and palate.
They didnt do surgery until she was almost 5 months old.
People used to stare and whisper.
One day in the store someone was staring and my daughter said to them "my little girl has a cleft lip and palate. Do you have any questions you would like to ask about it?"
The woman was embarassed, but her children asked sensitive, kind questions. Why did it happen, what will they do to fix it..etc.
I know how difficult it is, but maybe you could try her approach.
Praying for you always.

Diana said...

Just so you know, every time I look at a picture of your sweet Jonah, I see his beautiful eyes... he looks like an adorable baby!! I could just scoop him up and give him big giant hugs!!

By the way, I think it is normal for a baby that age to only be interested in something for 15 minutes... mine were that way!

chinamoon1420 said...

Wow! A lot of people had some very valid points to make! I sometimes get into those funks myself. In fact, I too, am in one right now. I have so many things to be grateful and thankful for but sometimes life just jumps up and smacks you right back down....I always say, "God, are you sure you have the right person because I am pretty sure I can't handle this right now!" As I have said before, my son has hemophilia. It is not something anyone would notice but I have had some people ask me what is "wrong" with him when I take him to our local hematology/oncology center. Sometimes I want to say it is none of your business then other times I want to tell them and educate them so the next time they meet someone with that condition they will know that the boy is just a regular boy who happens to have this special blood. I know this sounds weird but since I have no choice I have learned to feel blessed that my son has hemophilia. It has opened so many doors for my whole family and has taught me so many things about compassion and the miracles I have seen! Wow! I have such a crazy love for my son, just like you do yours and sometimes I wonder if people who have "normal" children have this same kind of love. It's just crazy how much I appreciate being chosen to be my son's mom. But......I still get in those funks and it's ok. I will be praying that yours lifts soon. I am sure my husband wishes my would lift soon too. I haven't showered in two days and I don't even care! My to do list for tomorrow is to take a shower! If I can get that done.....I will be a little happier!

Much love to you and prayers to all the EB families and families of children with "special" needs.

Julia said...

I never comment on blogs..ever but thanks for being so honest and real. I read a lot of blogs but I decided the other day that yours is my favorite. I don't really know why. Maybe it's the honesty or the fact that you seem like your a real person. I love your humor and Jonah is so cute. Thanks for sharing your life.

Jill said...

"Forgive me for being blunt, but I couldn't help but wonder what kind of condition your baby has?"

That's not too harsh of a way to put it, is it? I would probably say it along the lines of that. But of course thanks to you and Jonah, we're all aware of EB. :)

Tiffany said...

Awww. I am praying for you this morning. Can't imagine what you are dealing with. You do indeed have a sweet boy. {grin}

Monogram Girl said...

Hey Patrice,
I guess the point I got to with my son is I realized and really accepted that he ISN'T "normal" and he never will be. So when people ask me "what's wrong" or "why is he like that", even though it hurts sometimes, it's an honest question that deserves an honest answer. And the point is that when people KNOW, THEN they move past it and are able to see how cute your little love bug is!

When I read the comments here, so many reader's children have asked "what's wrong" but when they are TOLD what is "wrong", they all have such sweet comments! Trust me, kids need to know, and when they do, they just accept it! Really, I think it's something you will grow into and I pray that you do!

jrogers said...

I love the pictures of Jonah in his new exersaucer. I love his sweet cheeks ... would you mind if I borrowed some of his sugar. What a sweetie he is!

The Pelhams said...

Will be pryaing for you Patrice. I have no idea if you can get your hands on this stuff, but I am originally from a small town in NW Iowa. I have 3 children and found out from a friend of ours who is a doctor that best thing for diaper issues is a product called Plender's Diaper Ointment. It is made local at a plant in Orange City, Iowa. I would say I would get you some and send it to you so you could see if it helps sweet Jonah, but I live 4 hours away now, and won't be going there until Easter time. The company is called Dutch Mill Corporation. The ingredients are: white petrolatum, lanolin, mineral oil, zinc oxide, purified water, white wax, cetyl esters wax and boric acid as preservative. I don't know if Jonah can have any of that stuff but for bad red, bleeding diaper rash, 1-2 treatments and it is cleared up! Maybe you could get in touch with them and they would be willing to send you some! We continue to pray for Jonah!

Meghann Gehring Turnquist said...

Hi Patrice - I know I haven't commented a lot lately but I still check up on you guys daily, think about and pray for you frequently.

I'm sorry for your 'funk'. Being a stay-at-home Mom is so isolating .... and being a Mom to a special needs baby is even more isolating ..... and wintertime is isolating for everyone! So just remember that you have so many more challanges that most people and you're handling everything excellently. If you didn't have your moments of sadness, you wouldn't be human.
So keep on making that little boy smile and his smile is sure to make anyone feel the sunshine.

The Lesters said...

I've been following your story for a while but this is my first time commenting. Jonah is so adorable and seems like such a happy little guy.

Don't ever feel guilty about feeling bad just because you feel someone else has it worse. It is normal to want your baby to be healthy. We are currently in the process of testing our son for autism. I know just what you mean when you say you feel alone even though you are surrounded by friends. No one really gets it unless they have walked in your shoes. Praise God we can go to the Lord with our troubles. He always understands even when the rest of the world doesn't. And I totally get it when you said you know this happened for a reason but right now you just want it all to go away. People have told me the same thing, "this has happened for a reason." But that doesn't take the pain away.

Erica said...

Patrice, I can't say I know exactly how you feel because I don't but I can sympathize a little. My son has a round birthmark under his right eye...we think it is precious and enduring and that he would not be Will without it but you would not believe the people who have asked me "what is wrong with his eye?" or "what happened?" And now that he is five they ask him!! It infuriates me because nothing is wrong with him...we have taught him that God made him special and that he is perfect just the way he is...and he tells people "nothing is wrong with me...its my birthmark and I'm perfect" It makes me smile. You are doing a wonderful job with Jonah from what I can tell...he is very blessed to have you. And for what it is worth, I think Jonah is beautiful and perfect just the way he is....and I think he will be able to tell people that for himself when he is five just like my Will!

God bless

WendyBee said...

I am grateful that you are so expressive. I find it a blessing that you tell us how/what you are feeling. You give us insight into what it is like to be the mother of a beautiful child with a health challenge. What it is like to introduce him to the world, and the world to him. I could listen and listen to you, because you are able to tell it like it is. I wish I could make it all easier for you and for Matt and especially for Jonah (and while I'm at it, for all the others). I will listen, to anything you want to say. And I will pray.
WendyBee

Jessi said...

Praying for you, girl. You're awesome and I look up to you so much.
Love the pictures! He is getting to look like such a big boy! Can't believe he's almost one!!

Pam said...

Have you listened to Steven Curtis Chapman's song "Spring Is Coming"? I'm in a funk of my own. Not anything to do with my child...but a funk none the less. The song lifted my spirits.

Jessica said...

I am sorry that you are in a funk i think every mom goes through those. But i would like to say that Jonah is getting so big and his hair is growning so fast now my son will be 2 on the 1st of March and has hardly any compared to Jonah and the color is beautiful. Keep up the positive thinking.

Sonja said...

I went to the comment section to mention SADS and saw a few already had. It could certainly be a part of your funk; you don't get to go outside much. I'm considering tanning a little, just to get over it myself.

Thanks for sharing. I agree with a previous poster as well--you are one of my favourite places to visit. And I am thankful that I have learned that if I ever see a baby with EB, I will definitely talk to the parents and let them know I see their beautiful child!

thorney said...

No, you certainly do not always have to like it. You don't even have to like it sometime.

You love Jonah with all you have.

Keeping you in my prayers that you can get out of the funk. But don't beat yourself up over being in the funk--you have a lot on your plate and a funk comes around to all of us at one point or another (Personally, I am in my I have cancer funk right now.)

Melissa said...

Hi Patrice,
I've read your blog ever since Jonah was born and I've fallen in love with your sweet baby boys ever since. I've never felt the need to comment until now. Although I can't say I truly know what you're going through, I can say that I feel like I've walked the road with you through your blog. I want you to know that I'm loving, hurting, crying, and laughing along with you on your path. You are such an inpspiration to me. Stay strong and smile through the pain. Lots of people are praying for you, Matt, and Jonah even when you don't know it's happening.
Love and Prayers x's a Million,
Melissa

John and Crystal Pinegar Family said...

The ups and downs are part of life. You've been through a lot this year. I know you have been 24/7 taking care of Jonah and it's been about helping him. The emotional stuff is now catching up to you and you need to take time to figure it out. I'm so glad that you are spending time to heal yourself. I just moved from Michigan to California. I know that February is one of the worst months of the winter, it's the point when I feel like I have had enough of it. I'm sure when spring hits that will help.

Cathy said...

I think that you need to allow yourself to have a pity party. You need to allow yourself to be mad at God. He can take it!! Scream, cry, say why me-let your anger out on him! not on yourself, your role as a wife/mother. Then realize that God created Jonah for much greater things and you too for that matter! Our sermons at Church this month have been about the prophet Jonah and what the preacher said was that the book jonah was a in the bible to teach a lesson that MIRACLES happen!
Also, when I just looked at the pictures the FIRST thing I saw was his beautiful blue eyes and the second thing I noticed was his awesome SMILE!!

McCarty and Company said...

Your Jonah is just an adorable little guy. I am praying for him. Is EB similar to Bullous Pemphigoid? I had BP three years ago, blisters over my entire body, caused from allergic reaction to medication. It has lasted over 3 years, but now only get blisters in my mouth. If the EB that Jonah suffers from, is anything like BP, I so know what he feels like. At the age of 50, it hit hard. I can't imagine being a baby. :( Jonah will be in my continued prayers. Have the Drs ever tried Prednisone? *I just tonight read some of your blog, through Mckmama*. You too are in my prayers, momma, God does care about you, Jonah and your husband. He will give you strength.

Mocha Mama 24 said...

Isn't it just crazy how we as moms make the tough situations we're in seem less important than someone else? I feel like that so much that I shouldn't feel bad about how things are hard because at least its not as bad as...(fill in the blank) But the reality is, it runs your life and you can't help but think about how you wish things could be different or how bad it all is. However, here's me thinking, I shouldn't say I feel days are hard because I don't have it as hard as you, because I don't. The true thing is the things we are hurting and struggling with are no less important to what God sees and thankfully we can have hope through him.

Jennifer, Sunshine, Angel, Miss Thang, My Birdy (formerly Baby) said...

I hate that I don't live close enough to you guys to know you as neighbors. I love you all so much.