Tuesday, June 15, 2010


This is hard.
There are times it seems impossible.
The hardest part isn't the tube feeding, the therapy, the doctor visits, the surgery, the IEP meetings, the testing, the developmental delay.
I got all that down.
Most days all that is easy.
The hard part is not being able to fully communicate.
Yes, its coming.
He is starting to sign, but we are still both left frustrated most days not understanding one another. He will sign book, but want something else.
Then when you throw in a sickness with the lack of communication, I go numb.
Its impossible.
Things going great and easy can change in a instant over something that would be so simple and small for a typical developing child.
A few days before we left for vacation Alex started acting off, not sick, just different. He would occasionally throw up, but that isn't necessarily odd. The morning we left for vacation I took him in to see the doctor and he tested positive for strep! He couldn't tell me his throat hurt. This is a guessing game, and I feel blind. The week we got back from vacation he spikes a fever and is in some serious pain. All he can do is cry, and all I can do is guess. Today I am taking him to the doctor to help me guess. WHY CANT HE TALK?!?! I hate RTS.
How can I possibly help him when I don't know what to fix.
When I call the doctor the nurse will ask me how he is drinking. My answer is always he doesn't drink, is there another way we can evaluate his needs? I mean really.
There are days I DON'T want this for him or for me.
I want him to talk, I want him to tell me anything.
There are times this seems impossible...... This child has acheieved the impossible before, while showing me how to overcome it.

It is impossible not to love him........

So, here we go. ANother day of the impossible. It is so hard.
I love you Alex. Your daddy loves you. Your brothers love you. Keep showing us what is possible.


The VW's said...

You know that I get ya! This IS so hard! Guessing games have never been a favorite of mine! Hang in there! HUGS!!!

Kristi said...

I just wanted you to know it is SO HARD for me too. I really get it. I hate the guessing game, I play it all day. Even though Noah uses quite a bit of sign sometimes I still can't figure out what is wrong or what he want. He will use the wrong sign for things a lot. I hate it too. I understand the I hate RTS days. I still have them at times. Love you and Alex, kristi.

Alicia said...

I love how you love him, and the rest of your boys.

Praying that you find out what is bothering Alex. Praying for your heart as you continue to deal with the impossibilities of RTS. It sucks.


Carly said...

Jessica, I completely understand. General communication has improved greatly here, but telling us how he feels/what's wrong still doesn't happen and we're left guessing.
And I loved the part about how it's impossible not to love him. So true! I have to say I love looking at your pictures because Alex looks SO much like my Gabe.

Kelly said...

I hate the guessing game! I feel like Max and I are ALWAYS battling over communication. We both get so frustrated. I thought it would get easier as he learns more signs, but the older he gets the more he wants to communicate. However, I think feeding issues top my list with the hardest thing for us then communication. Tough stuff! I hope Alex is feeling better! He looks so handsome with his hair combed to the side in the red and blue shirt. Kelly F

Kerri H said...

I can relate too..it is so difficult..we're not good at the guessing game either...I lose all thet time!! So you're not alone! Hugs to you and cute little Alex..