Friday, June 19, 2009

The Band Aid

So, what is your favorite bandaid? I am quite partial to the Garfield ones...I love that cat. ;) My three year old is obesessed with Scooby Doo...though he's never even seen the cartoon. Go figure! We are about to embark on a journey of bandaids...they will look like 4 inch scars on my sons abdomen. The name is called kidney transplant.

Yes, a kidney transplant is just like a Garfield bandaid. It brings a smile to your lips looking at it, covers the wound so you can't see it anymore...but deep down you know it is still there. And sooner or later, really hoping for MUCH later, the bandaid starts to unstick and you need to replace it.

Now bear with me as I do something I don't let myself do very often. I'm going to bitch. Hey - I really don't do it all that much...just in traffic, and at the grocery store and when I'm PMSing...maybe I should just stop typing. Anyway, I'm not meaning this on any one person or even every person I've ever talked to about Matthew...I just have to release it somewhere and don't won't to burden others with my moodiness.

We are on our way to a new life, for our family and for Matthew. I couldn't be more happy or more scared. I've talked about that love/hate relationship with dialysis...but it's our normal. I'm used to it. My family is used to the routine, and with routine we find comfort and normalcy...though it is a normal very few people understand. I've "talked up" the whole transplant process to my family...especially my mother that needs constant reminders that Matthew will be OK after. Yes, he will be OK. He is OK now actually, he just has ground beef looking kidneys. Basically I'm trading one set of problems for another.

These problems are both more and less scary. We've had many scary moments with Matthew thus far and I expect many more to come. Many lab visits with rises in electrolytes and creatinine. Many fevers that I will not know if they are the flu or rejection. Many blows to the stomach from roughhousing with his brother or falling down in the yard chasing after the dog, and I will automatically think he has just bruised his new organ. And then the day when everything comes full circle and they ask me again, "do you know anyone that wishes to donate for him?".

All will NEVER be normal for him, for us. It will be OUR normal. A transplant does not make the past year magically go away...along with all the scars (both physically and emotionally) we have endured as a family. It will never take away that I have been present for every one of Matthew's 14 surgeries...and you have no idea what that does to a mother's heart, unless you too have been through 14 surgeries with your child. It will never take away the fact that the only way I could get my son to gain weight was to put a permanant tube in him and stuff him full every night - never receiving a full night's rest in over year because of alarms and formula changes. We are chronically sleep deprived over here. It will never take away the look on my older son's face as I leave once again with suitcase in hand to yet another long stay over at the hospital. Him asking me why I'm leaving him and he wants to go, pleading me to cuddle in his bed until he goes to sleep that night. Looking through the baby aisle tinged with resentment, passing the 80 different combos of food for babies, only being able to use 6 due to his electrolyte levels.

No, transplant doesn't take all that away, its still there engrained in my memories and carved into my soul. As I have said before, it really has made me a better person - but look at the cost of my lessons. I wouldn't wish a "sick" child on even my worse enemy, though I really don't have any...

I am ever grateful to my support system of family, friends, doctors, nurses, online groups and "virtual" friends. You have been there for me through thick and thin. Crying and praising right along beside me with as both good and bad news had been received. And because of that, I will ask you to please forgive me over the next few months as we start this "new normal". I know I will be moody and cranky and tired and overwhelmed. You say I am strong, but I am no stronger than any of you...I just hide my feelings behind a smile and a laugh. I cry a lot at night when no one is around. I've been on pins and needles since February 18th 2008 with no reprieve and I'm starting to feel the effects getting to me finally. Keep Matthew in your prayers and pray that I am a suitable donor for him. Though even that comes with a bit of selfish reasons...for once I don't want to be the one there for surgery.

I know that sounds AWFUL! And I feel unmotherly even thinking it...just waiting for the proverbial lightening bolt to come get me. ;) I'm tired of being alone in the night holding a hungry, fussy baby that is NPO. I'm tired of being alone in the night after surgery when he is too uncomfortable or too hopped up on meds to sleep, so therefore going through two nights in a row without my head touching a pillow. I'm tired of once Matthew finally gets some rest, the resident or nurse decides now is the time to check him out. I'm sick of parent trays! I want to take away his pain, and if I'm lying in my own bed across the street at Emory...I am in essence doing that. I'm taking away his bad kidney and giving him a good one, one that will hopefully last many many years to come. I will be going through my own pain and discomfort as my body goes through a brief period of toxicity while my remaining kidney tries to compensate for the one that has been donated. I will better understand him as a mother should. I know the fact of not seeing him, holding him as he cries after he is extubated will be torture...but I just don't know if I have it in me to be there again. I will, of course if I'm not cleared...but I really pray God has mercy on me, and let's me be blissfully unaware on the operating table. Just as my baby will be...for the 15th time.


Jenn said...

Karen, I will be praying that you are a perfect match for Matthew. You have all been through so much. Though our Matthews were diagnosed the same, our experiences have been very different. I cannot relate to the many surgeries you have been there for and will go through, just as you may not know the complete feelings of your own child dying. I do know that we both hurt deeply for each of our reasons. You are such a testimony of faith and I am glad to have you as my friend.

Stephanie said...

Karen, this post made me cry, made me sit here and just cry. How can we do that to each other? I know how many times you cried with me in my post before and when I lost Vayden, you called me strong, and I am. But you are too, you are dealing with something that I used to keep myself from jumping. My son is not in pain and I don't have to hurt like you do. It is the worst feeling I know when you can't fix a scrape on the knee. I can't imagine what you are feeling and going through, my biggest medical trail with a living child was ezcema. But it tore me up and broke my heart to have to tie socks around Vashons hands to stop him from scratching so hard he would bleed. I know that pain Karen, and I'm sorry you are feeling that day in and day out. But you are amazing. You really are and you make me laugh so much. Your entire family will be in my prayers and you will get through it all and still be a Hot Sexy Super Mom like you are now. Thank you for being so honest and I don't think you were bitchy at all, you were real.


Julia said...

I understand the need to be strong for your children, yet true to yourself in feeling the pain of your own reality. I've been there, oh so many times.

It is so, so hard to wait when you are close to good kidney function, isn't it?

I'm wishing for quick donor testing, quick approval, and a speedy recovery some day soon!

Santino's family said...

You will definitely be in my prayers. I am just beginning the journey you have been experiencing. Our lil Santino just began dialysis last night and is doing well so far. I can't wait to have him home with us but know it is going to be a tough road ahead. I am very thankful he is here with us but also very sad and guilt ridden what he will have to endure for the next year or so. I will remain in touch.

Elizabeth said...

I'm not as eloquent as some of the other commentors, and I certainly can't hold a candle to you. I'm definitely in the "virtual friends" category, but I hope one day to be in the "close by friends" category - even if I am a Georgia Bulldog. ;-)

I don't understand it all. I don't know it all. And I can't cheapen it to try and put it into words. There is some power source out there that you are plugged into. Somehow you have the power to keep going. It doesn't do you any good when your head hasn't hit the pillow in two nights, as you say. But still you keep going.

Anything else I say would be trite, and flippant. But I'm here. I read you and I pray for you. You know Matthew, and you, and all of you had some very special people praying for you when Dave's boss used to hold Bible Study in the Oval Office. I even bet Dave's old boss still prays for Matthew and for all of you. Not that he, or any of the rest of us, are any nearer to God, but still kind of a neat idea, if you ask me.

I look forward to talking with you again soon. said...

(((mama))) did you get the report back on matches? We don't have any matches for our little guy so he will be getting a cadaver kidney. Next Monday we begin the official wait. I'm both scared and nervous and excited and happy all at the same time! I don't remember if I told you but I have a yahoo group for dialysis mamas of babies. We have 6 moms/babies in there right now. Please leave me a message if you would like an invite. It's not a horribly busy group but it's nice to have a place where people know what you are going through.

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