Breathe...Just breathe...

I was reading in this autism hand book they just gave me,how it's normal to feel like a death,when you find out your child has autism;because it's the death of your ideal child and the end of how you thought things would be.

I've felt like that since the beginning with Caitlyn,because of her birth defect and health issues;things were never what I imagined and I always felt guilty for feeling that way.

But now,I can't stuff it. It's a sadness that creeps up on me and makes me feel like I can't breathe. It's grief.

It's a fear of what her life will be like,of how I will teach her,how will I navigate school or homeschool,how will she interact with peers,how will she function in a world that is full of so many things that overwhelm her and that she doesn't understand?

I feel panic that we're still in the military and don't have a choice of what to do and where to live. I'm terrified of what the move next year will do to her,uprooting her from the only life and therapists and doctor's she's ever known. 

I want to run away some days,cause I'm just so overwhelmed and afraid.

I want to live next door to my mom.

I want help.

I want comfort. 

I want reassurance. 

I want to know what's around the corner,but I can't. I can only trust that God does know.

It's one of those nights,my chest is on fire. I can't breathe and I think I just need to curl up and cry. 

Good Night, you unfair world,you.

Hope in Despair!

Thank you to my friends and family who prayed today for Caitlyn. To those who don’t know. We went in and spent the day at The Children’s Hospital to find out if Caitlyn has autism and I got more diasnosis’ than I bargained for.

Today is one of those days, that I’m pretty sure will be seared in my memory forever.

 I was told over and over that absolutely, obviously without question, she has autism. And as I was just trying to swallow that basic knowledge, I had to hear it used in every sentence. “Because she her autism ,since she’s autistic…”

For instance: Because of her autism, I was told she has severe developmental delays, to the point that she’s only functioning around 1 percent for her age group. In some area’s, she functioning as low a 4 month old. So, they decided to also give her a diagnosis called “Global Developmental Delay”

She also got a diagnosis of a sleeping and eating disorder. They kept saying she was “full code”

Then, they wanted her to undergo genetic testing for Chromosome X and fragile X.

And then, they told me that they see what all her therapists are seeing and Caitlyn is having Stare off seizures. So, back to the hospital we go for an EEG.

And while we’re at it, let’s test her for a couple other things in the lab. If you know Caitlyn’s history, she has an almost impossible time getting blood drawn or iv’s and her veins always blow. So, while my head was still spinning from all the information they just gave me that will impact my child’s life for the rest of it, I have to go and pin her down with 2 other nurses and listen to her scream bloody murder, while we got SEVEN tubes of blood from this little person in 3 different spots, cause her veins kept blowing.

Then she almost passed out on the way back to the car, cause she was so weak and dizzy.

And that in the briefest nutshell possible, sums up our day. It all seems a bit like a blur. I don’t know if, as a parent you’ve ever received that much bad news at one time, this isn’t the first time it’s happened to me, sadly. But let me tell you, it’s hard to fathom, until it happens.

My mind was immediately spinning on what programs I need to get her into, what changes in her therapy I need to make, what I need to do more, what I need to do better. I made a list and checked it twice and started making all my phone calls and doing what I need to do to get her the best of everything to help her.

My heart hurts for her and for what an uphill climb she’s had since day one, but I will never stop clinging to Jeremiah 29:11 for my daughter. “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.”

It’s not God’s will for Caitlyn to suffer and I am ending this awful day, bowing my pain at his feet and choosing to speak hope, not despair over my precious Caitlyn no matter how grim things looks some times. We just have a little higher mountain to climb now, but by God’s grace, I’ll keep fighting for her, till my dying breath.

I beg of everyone for your faithful prayers for my baby. God hears you and we need them so much. Pray for wisdom for Matt and I, as we decide how we need to move forward and what she needs. Pray she will grow and learn and be able to talk and surprise everyone.

 I appreciate the kind words I’ve received, as my heart is in need of comfort right now!

I will try to Fix You...

Tomorrow is the day. Where I will or will not hear the words - "Your daughter is autistic"

Yes,people have told me they think she has it,she probably has it,she has all the red flags,she miserably failed the M-Chat;but noone has diagnosed her.

Should I just go in and expect them to tell me something so permanent? I suppose so. Am I fully prepared to accept those words? I don't think so.

 I think it's hard for people who aren't a parent of a special needs child to fully grasp,how each new diagnosis shapes your life and changes you and how you have to filter everything through it,in a sense.

 I am trying to be positive. It will explain a lot. She'll qualify for more therapy and help. I'm trying to trust God and not show my weakness.

But I think it's okay that I'm a little sad. I think it's normal that I'm anxious about how this will change our lives. This isn't a 24 flu people, this will impact her for likely the rest of her life and it's hard to take that lightly,as her mother.

I think it's normal that I'm scared to talk to people, because I don't want any pat answers right now. I'd rather talk to myself than someone else. And here's what I'm telling myself-

1.God knows Caitlyn and I,he knows our hearts,our fears and it's okay to be weak before him.
2.God has never left us through every sickness and bad thing that's happened to her or I,he won't leave us now.
3.God will be the best friend I have through all of this,he'll never say the wrong thing,he's not judging me,I'm not somehow falling short of his expectations of how I should handle this.
4.You're human,Tabitha. You don't want your daughter to hurt or suffer and it's okay to be sad about this and cry sometimes and wish you could make her mind and body be in perfect health.
5.Caitlyn is a gift and no matter how hard it gets,she depends on you and needs you to be strong for her tomorrow and every day after that.
6.This does not have to define her,I will not let it define her. She is still a beautiful,wonderful,sweet,funny,amazing child and her love triumphs over any delays and weaknesses she has. The good will always outweigh the bad. It has to.
7.This is just the beginning. I have her whole life to fight this and fight it,we will.

I think tomorrow,I am going to come home and retreat into my own little world and just grapple with whatever they tell me and try to come to terms with it. Because I'm sure no words will be adequate.

I am just listening to the song "Fix you" by Coldplay and I know that if I could,I would. Caitlyn,Mommy would take away all the bad if only I could.