Friday, June 30, 2006

When Life Gets You Down

People that knew me before Parker was born will attest that I have always been quite laid back. If something upset me I was pretty good to just let it go. Not to say that I have changed very much since Parker was born or since he was diagnosed with this horrific disease, but to be honest it does have its toll on you. Still, I am not one to complain much, and I do my best to not let petty things bother me, but that said, today I felt a little overwhelmed. I guess with each day that passes, as we battle with Parker to fight this disease, it is to be expected.

I can't say that I ever really thought what a parent has to go through on a daily basis before I had Parker. If I take that thought a little further, I can say that I definitely never imagined what it was like to be a parent of a child whose future was undetermined to the extent that my son's is. How could I have? Why would I have? But now, when I watch television shows like "Life's Little Miracles" on the "Life Channel", that shows families going through very similar things that we do, I sympathize with them.

Please don't get me wrong. I am not asking anyone to feel sorry for me or my family. People that know me will understand that that is the furthest thing from my mind. To be honest, almost right after Parker was diagnosed with this disease I decided that I should not sit and wonder why this had happened to us, but instead, why should it not? What makes someone so special that they are spared such a journey. So, with that, I take the cards that I have been dealt and I play them to the best of my ability.

But today, I am tired. I am tired of listening to people who do not know what it is like to go through what we do each day. I am tired of hearing that Parker's chance of survival is small from people who I don't know and who don't know my son. And I am tired of feeling guilty for watching my son as closely as I do.

I am not sure if anyone has heard the term 'institutionalized'? Many families who have spent an extended period of time in the hospital or other institution, take hospital life home with them. They have difficulty removing themselves from what they are used to. So I ask myself, are we institutionalized? Without giving it too much thought, I would have to say yes, but with do course. I plan on monitoring my son very closely and keeping our house as clean as possible until he is as normal as the next child. I would expect that every parent would do the same if they were in our position.

It is definitely going to be a long journey. One with many ups and downs. I know that there will be plenty more days just like today where I have to fight back the tears. It was about half an hour before I started writing this article that I helped put Parker to bed. Yes, I was absolutely exhausted. But as I sat in the glider beside his crib, I held my son in my arms in front of me. I smiled at him, and he smiled back, and with that smile he gave me strength.


Elizabeth said...

Hi Parker Darling!

It's been a while since I posted, but you are always in your thoughts - and mommy and daddy. I keep close in mind how gorgeous you were when I saw you last and can't wait to see you again!

One thing to say today - stay strong little Parker and keep showing Daddy what it is to be strong! You can both do it.

Love Elizabeth

nana said...

Hello our little man:

We can certainly understand that your mommy and daddy would feel down on some occasions. Who in their right mind wouldn't? After all that they have been and continue to go through it seems that it would be more than any body should and can bear.

But then they see how strong willed you are and what a fighter you are, how precious you are and what determination you possess. All will be well and your mom and dad are certainly entitled to do and think whatever it takes to keep you safe. And safe and healthy you shall be.

We love you soooo much our darling grandson. You will pull through this as will mommy and daddy,who will always be there to love and protect you with all their might.Our thoughts and prayers are always, always with you, mom and dad.

All our love to all,
Nana and Granddad xoxoxo

Uncle Mikey said...

Dear Parky,
You are so lucky to have such loving parents who would do absolutely anything for you. Their dedication and your strength will pull you all through this ordeal. You're probably tired of hearing this too, but, stay strong big guy. With the love of your parents, you WILL get through this.
Love you lots and lots.
Auntie Christini and Uncle Mikey

Funny Face said...

Hello Parker!

I understand how your parents feel (somewhat)...I think any new parent understands....even if you child is not sick everyone still has an opinion...bottom line is they are your mommy and daddy and you are their son...whatever they decide for you in your life is their decision. At the end of the day if everyone is together and still smiling then they have done a fantastic job...

Kevin I was watching that same show last night and you guys came to mind...I can not begin to explain how brave I think you and Tracy are. I know you find the strength for your child...know Craig and I give you guys all our strength on the bad days...

Love you guys tons!

Laura, Craig and Elizabeth
(and a snuggle and kiss from Bear)

Soon Parker will be able to saddle up on Bear just as Elizabeth does!

Allyson said...

Wow-Kevin and Tracy-that was certainly a very engaging post-I don't have a lot to say today but you continue to amaze me with the strength and courage you are showing through this extremly difficult time-to find the highs as you do is nothing but amazing! The lows are expected and that is when the support of family/friends will hopefully guide you through! Take care and Parker-keep smiling!