Monday, August 1, 2011

Finding the Silver Lining

I don't usually open up about personal stuff on my blog.  It's a home decor blog after all.  But I've gotten to know and love so many of you on a personal level that it would be silly for me not to open up and share.

This is Little Miss Bliss, AKA Amy, my middle child.

I was a middle child and I've shared with you before how my Dad, also a middle child, used to call me his turtle, because "the turtle always wins the race" he would say.  And it's true.  I may have taken longer than most, but in the end, I always came out on top, a winner.

Back in January, right after we came home from the hospital with Baby Bliss and my hormones were raging, Amy looked me straight in the eyes and asked me, "Mommy, is something wrong with me?  I'm different."

I answered her, and then sobbed for about a week.  You see, Amy is different.  She's different from other kids her age who are going into Middle School.  She's still innocent.  And that makes her different.  Sad, isn't it?

She still has a blankie, she still sucks her middle fingers, she still plays with her dolls, she still "believes" in Santa, the Tooth Fairy and the Easter Bunny.  We even sat her down and tried telling her the truth, but she refused to believe us.  She still wants to be Mommy's baby, even though there's another baby in the house.  She still has a child's body with no signs of puberty.   She sees only the good in everybody, and evil doesn't exist in her world.

She still takes her cow backpack with her wherever she goes and sleeps with her little cow every night.

She loves nature and animals, birdwatching and hiking.  And she has the biggest heart of anybody I know.

She's a turtle too.

For the past two years Amy has been suffering.  Diagnosed with ADHD in Kindergarten, we took her to several doctors and specialists and by second grade had her on medication.  That's when the pain started.  At first it was just stomach aches.  After a while it turned into cramps, followed by constipation, diarrhea,  and nausea.  Constantly.  Unrelenting.

Our pediatrician thought it might be lactose intolerance or poor diet.  We thought it was side affects from her medication.  The school nurse just thought she was being a hypochondriac and sent her back to class, day after day after day.

Before long her joints hurt, her muscles ached and the other symptoms got worse.  We had long since taken her off all medication and a couple visits to the ER only perplexed us even more.  They told us to give her Pepcid.

Rich and I knew there was something more serious wrong with her and finally insisted that her doctor send us to a specialist.  Blood tests and a GI scope confirmed that Amy has been suffering with Celiac Disease.  Is it life threatening? No.  Is it the end of the world? No.  Is it life changing? Yes.  Because of this disease, Amy's small intestines are so damaged that her tiny body has been malnourished and not getting the proper nutrients.  It's why she has no signs of puberty and why she is so underweight.

While we are happy to finally have a diagnosis for Amy, we are learning just how difficult it is going to be to find things that Amy likes to eat.  Of course nothing with gluten (wheat, barley and rye), but because of the severity of the damage to this point, she has to be off of lactose and some of her other favorite foods until her intestines heal.  Fortunately, God has provided us with a wonderful neighbor who is also a nurse practitioner and whose own son has Celiac's.  She has been a wealth of information and a great source of comfort.

As with all diseases, knowledge is key.  We've been all over the internet, educating ourselves and finding recipes.  There's a support group nearby that I plan to join too - just to meet other Moms going through this.  Wegmans supermarket is a wonderful source of gluten free food and there are many restaurants that offer gluten free on their menu.  Eventually this will all become second nature and life will go on as usual.  But for now, I'm comforting my sick child and treating her like my "baby".  I'll beat myself up about that later.

As for the silver lining, while at Wegmans I treated myself to this.

A wire cloche with a sweet little birdie on top.

After all, this IS a home decor blog ;)

Thanks for stopping by, and thanks for listening.


The Polka Dot Closet said...

That's tough, we want our children to have a care free healthy life. My husband (Ex) had celiac disease as a child, In the 60's there was no gluten free products available, he talks about bringing his own Birthday cake to parties. Luckily he outgrew it and as an adult does not have to alter his diet at all. How wonderful that you have all of the resources you do and finally answers to your questions. Thank you for sharing with us and bless you on this journey.


Kim @ Savvy Southern Style said...

So sad to hear that she has to deal with that and you have to come up with special things to fix. So glad you have a diagnosis. It just makes me so mad when doctors and nurses just brush kid's symptoms off. So glad you insisted on further testing. I hope she feels better soon.

Boho Farm and Home said...

Your Amy sounds like my Catherine...and I love it! (Not the Celiac part but the different, sweet and innocent part) You are doing a good job! It is hard to keep them down on the farm in this crazy world we live in...
Your Amy sounds like a smart girl with wisdom beyond her years--it's not about growing up but becoming like a child.

Thanks for sharing!


stephanie said...

Thanks for sharing Kim! You never know who you might help by opening up! Hugs and prayers to you and your little girl!!

Sarah Kate said...

I just love Amy! She sounds so very much like my own daughter! Lex is two years younger than Amy, but already notices the differences between herself and other girls her age. She's much smaller and so very much more innocent. I'd like to keep her that way as long as I can. :o) There is nothing wrong with growing up good and slow, just like a turtle. :o)

I'm sorry to hear she has celiac's, but at least now you have a diagnosis, and a way to make her feel better. Once she gets used to the new diet, it won't seen difficult or annoying anymore. Will be thinking about her as she adjusts over the next few months though!!

Kimberly said...

Kim, Thanks for opening up. I think your daughter is beautiful! I am glad the doctors found out what was wrong with her and hopefully you can get more knowledge and she can live a happy, healthy life. That's all we want for our children.

Victoria said...

I was reading a magazine the other day written by a mom whose older daughter was exactly the way you described your daughter and it was also celiac disease but went undiagnosed for many years.

Thank goodness you found out and were able to take her off the ADHD medication! She's a gorgeous little girl and thank you for sharing her story:)

Traci said...

Sending lots of prayers your way. I can't imagine how hard it is to deal with something like a Celiac as a child.

Pat said...

I have tears in my eyes reading this, Kim. I just want you to know I will keep your sweet daughter in my thoughts and prayers. What a beautiful child she is.

I am so glad you pursued this and found answers. Second and third opinions are always a good thing.

Just on a side note. When my oldest granddaughter was about a year and a half old, J bought her a baby doll, with a cloth body. He found it on a bottom shelf at Walmart, clearance marked. She carried that doll everywhere she went from that time until she was a teen, buying clothes at garage sales etc, even when the doll was all the worse for wear. Her well loved Chelsea still sits on her bed. My granddaughter is 21 and a very sweet turtle also.

Crystal @ Ordinary Days said...

Sad to hear about your sweet girl. You are right though, it could be worse. That's what I tell myself. My oldest who is 8 is also VERY naive and innocent. She LOVES her stuffed animals and has the most tender heart. She truly doesn't have a mean bone in her body. She has been seeing an endocrinologist since she was 5 because she has shown signs of puberty well before the age of 5. She now has to take medication to delay puberty. I just tell myself, it could be worse. You sound like you are raising a sweet girl!

Glenda/MidSouth said...

Sorry she is having to deal with this, but in no time she will know automatically what she can and cannot eat. Thank goodness you insisted on further tests. Now she can get her diet adjusted and her body can heal.

Laura said...

It is so frustrating when we have to fight for a diagnosis.
She is precious and perfect.

It will all be OK.

White Spray Paint

OrangeHeroMama said...

awww. the poor girl! (and she reminds me so much of my eldest daughter!)

So glad that you finally were able to find out what was wrong!
Prayers to you!

Country Dreaming said...

This si a toughone but at least you know now what the issue is. It will become second nature trust me.
We have two students imy classroom that are on Gluten Free diest and severin the other two Spec. Ed rooms. We also have a second grade teacher who deals with this.

Good luck and best wishes for an easy transition to this lifstyle.


mississippi artist said...

So glad you fought to get the correct diagnosis. I think if you are paying for a service-re doctor that he should listen to what you have to say! Your daughter sounds very smart and I am sure in the end she will be fine with this. Prayers to you and your family.

Donna~One Simple Country Girl said...

Absolutely nothing wrong with being "different". If we had more "different" people in this world, imagine what a much better and happier world we would be living in! Thank you for your courage in sharing this personal part of your life. As mothers, ALL our babies are precious and I see absolutely no need for you to "beat yourself up later" for giving your child what she needs at this moment. That's what us Moms are built to do! Glad you have a diagnosis for her condition and that you are armed with the knowledge you need to help her with this. Oh, and by the way, I am in LOVE with your birdie cloche!!! And with your decorating blog as well! God bless!

Sue said...

I am so glad you got the answers for your sweet daughter Kim. {and I think she looks just like you!} I don't know anything about celiac disease, but for an adult friend, who has basically outgrown it. {I didn't know you could do that ~ but that's something to pray for!!} It's hard for kids to be different, but with the love and support of family you can deal with anything and be stronger for it.
I will say a prayer for your Amy.

The Decorative Dreamer said...

Glad to hear your persistence has helped to get a diagnosis and now you can begin to find some solutions for your precious daughter. Thank you for sharing this with us and I will keep you all in my prayers as well!

Stacey said...

Oh gosh, that's a lot to deal with. Can I tell you that I teach 4th and 5th graders...several of my kids have ADHD. Luckily there are still some kids who are sweet and innocent but they are few, it seems. I hope she has some good friends. Like you said, the turtle will slowly and steadily win the race. She has good parents and that's so important!

Jemsmom said...

Thank the Lord above she has parents like you and Rich who did not give up on their baby and insisted on more testing. She is one lucky little girl to have you for a mom. One who loves and cherishes her as is completely evident in the words you wrote. Nothing to beat yourself up about at all. You are doing everything right by educating yourself and loving her. You are a good mom and she will win the race!

Shelley said...

That's so sad that she has had to struggle with that!! Hang in there, you sound like you are doing a great job of being supportive and finding out what needs to be done for her. You are a great mommy!

Elaine @ Sunny Simple Life said...

Oh my your poor baby. I love her innocence but not the way the poor thing has had to kind of get there. Why don't doctors listen to mothers? I can tell the second my kids walk out of their rooms if they are well or not just by looking at them. I wish they would have listened to your concerns sooner. You hear of this more and more these days. Think of all who have suffered not knowing they had this. Good luck on your journey to healing with your daughter.

Emily said...

Wow, your darling little Bliss Amy has some problems, but with a little time and the right diet she should start to heal and grow strong. Celiac is hard to diagnose, for a lot of reasons. One being doctors don't listen..........
My cousin had all the pain and suffering your little Amy had, and was not diagnosed until she was in her late thirties. Now she doing great, the only problem she has is keeping to her diet. She gained weight and is pain free. You darling daughter is rare. Children grow up way to soon in my opinion. Your children are precious!! Love the snaps, looks like a great place to have some fun. Love your new cloche and the hutch is fab.......
I'm so happy to meet you......

The French Hutch

Pamela said...

Oh Kim!! Many hugs and prayers being sent your way! I can't even imagine what you are going thru but it does hit home. My sister adopted a little girl abt 5 years ago. She was 9 I think at the time and now is 14. She too is not at the stage she should be. She too believes in no evil and trust anybody and everybody. They have taken her to specialist and have found out that certain nerves in her brain are not functioning properly and more than likely probably never will. She will forever be a 9 yr old little girl. So again my heart goes out to you!
On a lighter note love your colache!

⚜ ↁℯℬℬᴵℰ⚜@ Debbiedoos blogging and blabbing said...

Oh Kim, I am so sorry. So nice you got it off your chest. We all do not live in a perfect world, and when it comes to our children, we just have to talk sometimes. Glad you got to the bottom of her stomach issues too. Your daughter sounds so so sweet. Glad she is different, I hope she never changes, the world can use more sweet kids like her!

Michele Smith said...

Thanks for sharing Kim! You never know who you may help by sharing her story. My prayers are with her and your family.

Love Of Quilts said...

Bless her heart I hope she is doing glad you found the problem and she will get well. Trish

Linda Anne Young said...

Dear Kim, I'm so glad you got a proper diagnosis, and the gluten-free diet should make her feel better pretty quickly. If wrong, the diet won't hurt her, it's healthy right? She's beautiful and looks like a very happy child, I think she will be healthier and stronger soon. She'll catch up with the other girls when she's ready. Most little girls are growing up way too fast! I will pray for her continued healing! It sounds like you are on top of things, you're a good mother!
My youngest daughter's name is Amy!-- it means "beloved"! God bless you and your family!
Love, Linda

Gloria (The Little Red House with the White Porch) said...

Hi, Kim. I read your most recent post and saw you made mention about some problem or something in the previous post (this one) and were thanking everyone, so I said, "Hmmm, what's up?" So here I am to find out. First of all, I am sorry that Amy has this disease, but thank God that you PUSHED for tests so that you have now found out the problem. Although we hate to see our kids go through stuff like this, you MUST look at it that this is a problem that she can live with. You have to thank God that it's nothing worse. As far as her being 'innocent' -- don't even worry about it. She is still just a sweet little girl, and before you know it, she is going to blossom into a blooming teenager! You will WISH she goes back to being innocent! ;)
Once she gets into middle school, she is going to see what the other girls are doing, and she will follow with growing up. Let's hope that she still remains the warm-hearted nice girl that she is, and I am sure she WILL because that is her nature and the way she was brought up. So don't give THAT another thought. AND, she has a beautiful body: I can see that she will blossom into having a beautiful model's figure! Long and thin and she'll be able to wear anything! (Wish I had her figure!!!!) And keep babying her, she needs it. Between not feeling well for so long, then the baby coming, she needs even MORE attention right now. So baby her all she wants. Once school begins, you might have to baby her a little more if she's nervous about middle school, but I would bet that by the time Christmas rolls around, you are going to see a new girl. So give it time, and mark my words, by the Holidays, you will wonder what you ever worried about. :)
Gloria xxoo

Gloria (The Little Red House with the White Porch) said...

P.S. I forgot to say: You said that Amy still wants to be the baby. Well, tell her that she still IS the baby... your baby GIRL! She is the youngest GIRL, so she is your Baby Girl. That has nothing to do with your baby BOY, right??? ;)

eleven-o-one said...

Thanks so much for sharing this story. I love blogland and I really love it when I can get to "know" the author even just a bit. I'm sure things are challenging especially with a little one in the house! But Amy is a lucky girl to have such loving and caring parents.

I'm your newest follower!

fran @ eleven-o-one