Heartbroken

I had a bad day.  I visited Waverly's new school and I was not impressed.  I am not sure they understand the severity of her condition.  I feel lost and confused by the system and I wish that I hadn't left the safety of our therapy & school in London.  Matt and I were both incredibly sad tonight.  Waverly is changing before our eyes.  Every day we lose a piece of her - not in a cliche way.  I mean we can actually see things she can no longer do.  She can't answer the "what's your name?" question.  She can't use a spoon anymore.  She can't hold a crayon anymore.  It is heartbreaking.  This whole situation is so incomprehensible.  I cannot fully grasp the fact that both of my kids are dying and I am watching it.

Comments

bome62 said…
My heart is so broken for your family. I feel soooooooo sorry for your little family.
Praying in Missouri
Bonnie
Jawn said…
You're all in my prayers. That's really all I can say as my heart breaks for you.
*Jawn*
Jen said…
I am so sorry!

This is horribly unfair, and it makes me so angry that you all have to go through it. I wish there was anything in the world I could say to make you feel even the tiniest bit better. Instead, I just want you to know that there's a complete stranger in Ohio who cries for you and your kids, and who is SO VERY ANGRY at the unfairness of what you are going through.

Super-angry, but still praying for a miracle.
Mystic Thistle said…
Yes, this brings tears to my eyes as well, though I am a stranger. I only know the tiniest bit of what you might be going through from my own situation. Oh, my heart truly goes out to you.

I remember crying harder than ever after visiting Clay's first school. It was awful. I thought my heart would break. Feeling like no one understands the severity of your child's condition is one of the lonliest feelings in the world.

I know I have already said this, but I think of you and your family every day and I keep praying. Just praying and praying for your beautiful children.
Christine said…
One encounters many sad situations in blogworld, but this is by far the most painful I've seen. What you are being asked to endure is incomprehensible. I am praying for a miracle as well. I am so sorry. I really appreciate your honesty, so that I know how to pray. Perhaps it sounds strange, but I really want to know when you are having ups and downs. I hope at some point you can feel the outpouring of prayer.

I think it is very wise to express how this is affecting you. I've been checking everyday. I will continue to, and will continue the prayer. I'm sure you are furious at God right now, and rightly so. I am praying about your relationship with him as well. Things like this can bring you closer to him, or further away. I will pray that you find comfort in him, despite the pain and confusion about what's happening and why. I do think he can comfort, even in this situation. Again, I am so sorry. I don't know you, but I sure wish I could do something to help.
E said…
Praying for you and your sweet family tonight. Believing that God knows exactly where you are and what you need...praying that He'll provide for those needs as He promises and be right on time. I want to encourage you to keep advocating for your Waverly! Her teachers need to fully understand what is happening, don't give up until they do. And if they don't--keep searching until you find someone who does. You NEED that!
Michelle said…
Oh dear. I'm also a stranger, but I think of you and your family often. I can only hope that you and your husband and Waverly and Oliver find grace in your days, both alone and together. I may not know you, but I'd give you a big hug if I ever met you.
im a stranger praying for you tonight in texarkana texas.

i am so very sorry.

i read your blog everyday.
Svetlana said…
I am very sorry, tha you have to deal with it. I agree with you about schools here, I have daughter, who we just found out that she needs special care in school, we have to fight for her, to be eble to get what she needs. We still don't know what we will be doiing and school starting next week.
We praying for you. We have your blog on our prayer list :-)
DAN BUCK said…
We love you and think and pray for you so very often. We continue to be unbelievably sad about this situation.

I wish we could be near you and help in anyway possible. I wish we could make this entire situation disappear.

Our little church plant has you covered in prayers as well.

Courtney and Dan
pknelson said…
I can't begin to comprehend what you are going through or why it is happening. My heart aches for you and my prayers are lifted for you. There is no place else to turn but to the comfort of our heavenly father's arms.
I am sad for your family. Please know that you are in my prayers. Thinking of you from Ohio.
val said…
matt,

i came across your blog yesterday and since then have been reading up on your story. my heart breaks for you guys. i cannot comprehend what you are going through. just thought i'd let you know there's one more person praying.
Unknown said…
Praying hard for you guys...
Misty said…
I'm so sorry Shannon. We continue to pray for you and the horrible situation you are in. I will pray for peace and strength as you go through this!
alison said…
i found your blog from matt's facebook. i had no idea you guys were going through all this. it's a little overwhelming just reading about it, and i feel such sadness for you both.
Mike and Sarah said…
Shannon... I am so sorry. I am praying.

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