Thursday, February 23, 2012

untitled

I said a prayer. . .and for now the answer seems to be...it's going to get harder. 
I hate hearing that answer...it really feels like no answer at all. Especially when it's my children. I've heard that same answer before...for the past 2 and a half years i've heard that answer.
When i thought, hoped for W that the next milestone would bring some relief from the screaming, the unnamed agony and misery he was in. Drs shook their head "Sorry, we don't know why he's screaming like this". Friends leaving, stopping communications because i couldn't bear another screaming day. I couldn't handle it. My child didn't have a disability, or anything that LOOKED wrong with him, but still he screamed. The answer was No...it will not get better.


But Monday I got a phone call. I had butterflies in my stomach, i answered it after one ring. I has been waiting for this call for days. The peppy voice on the other end a Dr I actually trust...and like. An ANSWER. Celiacs. A huge sigh of relief. Tears. Tears of joy for an ANSWER, but tears for a child who will have to spend the rest of his life with people not understanding why he can't have that doughnut. But still..now we know. It won't change his personality, but i hope, i pray for him that it changes how he feels. A 2 year old can't really tell you that his stomach hurts every day..or a host of other symptoms that would have pointed to it. With him i can move forward.


But where to go with a wee one, who can't do anything but scream to communicate. Here it is again. Me the helpless mom holding a writhing, screaming infant. Wondering how i will fix this. Does anyone BELIEVE me? Do they think I'm exaggerating? Will i loose friends again? Will my marriage survive another miserable child? Why are my babies so tortured? HOW AM I GOING TO LIVE THROUGH THIS AGAIN?
Truthfully i scream it all at the ceiling..how can this happen again? I just want to know what it's like to ENJOY the babyhood. To have a cooing, giggling baby that PLAYS with toys next to me as i fold laundry. I desperately want that.
We've tried the hypoallergenic formula, we've tried the soy, we've tried the chicken/rice/veggies diet and still she gets worse. Less sleep each night, more screaming and squirming during the day. Mama growing more tired and burned out every moment.
I want a good attitude. I beg for it. Other mama's have screaming babies and they're still cheerleader perfect peppy. I want to be that. Because i KNOW my life is far from horrible. But my does it wear this girl to watch my babies suffer and i can do nothing.

4 comments:

  1. Hello,

    I saw your comment on Money Saving Mom's post for the gluten free/dairy free waffles and followed your link to your blog.

    I don't normally comment on things, but I feel like I must comment here. I can't believe how your babies describe what we have been through with my daughter over the past year....and you've put into words what I've been feeling for the past 13 months. It is SO tough to be a mommy and watch your child cry endlessly and not be able to fix it. Boy, have I struggled with this so many times over the last year!

    I got a tip from our chiropractor to try a gluten free diet and I've done nothing but research it since. I have an appt to hopefully get a test ordered for Celiac in about a week and a half...I'll say though, that we've seen a huge difference by just cutting back on gluten. Also, have you tried taking your little girl to the chiropractor? I know it seems strange, but I've taken mine a few times and I've been amazed at the difference.

    Anyway, I just wanted to introduce myself and let you know that there is someone else going through the same stuff...and it's not easy. Maybe we could email or something and support one another on this journey...because it shouldn't be travelled alone!

    I pray that now that you have answers your son can get to feeling better and you can get some peace for your daughter as well!

    Blessings,
    Ashley
    millerashleyd (at) gmail (dot) com

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  2. I hope that this new answer brings relief soon for baby boy. How is the test done? I am interested in getting my eldest tested because I have noticed a correlation between her eating high gluten and her stomach getting greatly bloated. She doesn't scream in pain, but I am very curious.

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    Replies
    1. LR-It was quite a process. I've been telling pediatricians I suspect Celiacs since W was 6 months old! When he was that age they did only the basic serum test and it came back negative. Finally after listing all his symptoms to our current pediatrician and straight asking that they include a celiacs panel on his 2 yr blood work, I got a dr that said "sure"! It took a little over a week to get the results back. His test came back positive on the genetic level. They would like for him to do a edoscopy and biopsy his stomach, but at this age i would rather not put him through that. The genetic test is enough for me, coupled with his symptoms. Undiagnosed Celiacs can have a long term negative effect on a person's health, so if you suspect your little M has a gluten issue you can ask your dr, but really just doing the diet is a simple and risk free way of getting an answer. For us replacing pasta with rice is a thrifty dinner option, and using buckwheat flour for pancakes instead of regular flour is simple enough. The longer we are on the diet I will try more complex gluten free recipes with different types of gluten free flour!
      I myself feel i might be sensitive at the very least to gluten-i had tiny amount this week (like some tiny pieces of tortilla chips sprinkled on a dinner) and a mcflurry, and both times i had a horrible headache afterwards!

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  3. Praying for you. I have been there, feeling all of the emotions you describe. People told me then and I didn't understand how it was possible, but now I am beginning to see it. God has a special purpose for these children. My son who had (has?) the most problems, is growing to be a little boy with great compassion for others in pain. On days when you find yourself in a crying heap on the floor (with screaming kids around you), know that you are being prayed for. God will be working in others to be praying for you in your most trying times. He will never leave you, or forsake you. Ever! :)

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