Saturday, November 28, 2009

Enjoying the quiet


I have been over the last few days trying to literally savor every moment...I can feel the tension as each day slips by...and I know that I've said to Mark over the last 2 days ...please let time slow down. I am not looking forward to Monday, as I have said 100 times I know in my brain that this surgery must be done, that at this point it is our only chance at getting Kyle off the IV TPN and move him forward but in my heart I can't stand this. For 5 years I have felt that failure feeling ( I know my MOD friends are going to jump all over me here) like I should have been able to protect him more...I drive Mark nuts...every time we go inpatient or we meet a new dr we get the same question, "so why was Kyle born premature?" What most don't get is that it's like a knife in the chest...and as hard as I try every time I get that question it makes my heart ache all over again. Kyle was a preemie because my body failed him, I know..I know...but it hurts. While we were meeting with the surgeons in Boston one of them looked at us and said, this is not all prematurity related there is something else wrong. My brain started to scramble and I could feel myself start to panic, while we have always known that Kyle's medical issues are not all prematurity related it was hard to hear that there is more going on here. For years we were told that Kyle would outgrow his prematurity, so many dr's telling us how lucky we were that Kyle was still with us, that with everything he has been through he still is so forgiving...so kind, so sweet.


I was talking to one of Kyle's dr's the other day, we were talking about next steps and treatment plans, I started to cry...and of course instantly apologized. She was of course amazing, and said...."Kate it's ok.....it's been 5 years..."


It has been 5 years, and I can't say I wouldn't change some things...but I do know I would never change who Kyle is and what he's taught me. There are days that this all seems like to much, and then I hear his giggle or see his sweet face, and it's energizing. He is energizing.


xoxo

K

5 comments:

littlewonders said...

You are a wonderful, wonderful mother.......hugs.

S

Unknown said...

First I have to say "Ohhh! Ahhh!!" Pretty new blog! Is this a Miracle Monster Designs production??

Sweetie - No one is going to chastize you for how you feel. We feel how our heart tells us to - our brain (and our friends!) can tell us that it's irrational... but some of those things just still hurt.

Thinking of you, babe. Good luck tomorrow with going back - I will be praying that the surgery is quick and as uneventful as possibe.

Love you,
Kara

Lauren said...

Kate-

Like Kara, I'm sooo not gonna tell you not to feel something I know I've felt a million times.

As I read your blog my eyes kept going back to Kyle's sweet picture. He is such an energizing lil' kiddo and amazingly he is able to exude that energy across wireless internet and oceans. That is one amazing little boy. And it's no wonder. Apples and Trees. He comes from an AMAZING mommy!!

Lauren

Robin said...

Kate,

I wil be thinking of you and Kyle, I hope everything goes smoothly.

You are an amazing Mother, and you have an amazing son!

XOXOXO

Robin

Anonymous said...

Kate

I can relate.

My girls have practically no issues but even simple nebulization that may or may not be related to that cpap brings back tears..

such a major surgery is looming, so you are feeling even more down...
hugs and love to you

With best wishes
S