March 23, 2010 - Two years ago today the opthalmologist saw cherry red spots in Kaleb's eyes and we learned about a horrible disease called Tay-Sach's. Today is not our "official" diagnosis day as the blood test would confirm our fears on March 19th and we would discover another scarey word, Sandhoff's. But this is the day, two years ago, that filled us with fear and we have never been the same since! Since that time, as most of you know, we discovered a wonderful organization, NTSAD, that has connected us with so (too) many families who have been or are going through the same emotions, and fears that we are. This has been invaluable to me - I don't know what I would have done without these people! During this time, we have grown close to the families and their children, and we have suffered through so many losses.
Usually when you are standing in a line you are anxious to get to the front and get - whatever it is - over so that you can move on to the next thing. We have been standing in line with these other families for the past two years and no one wants to get to the front, everytime we lose a child we are reminded that we are getting closer to the front, where no one wants to be. In this month alone we have lost two beautiful girls, one of whom was a "newly diagnosed family" that we met at the conference. I remember sitting in that room with only three other "newly diagnosed" families, 3 beautiful little girls - Ali, Elliott and Dezirae - Dezirae earned her Angel wings only a few short months after the conference, she was barely two years old, and this month Miss Elliott earned her wings at only three years old. Half of the babies who we met as "newly diagnosed" are gone - very sobbering, very freightening.
A couple months after diagnosis we traveled to Duke University hoping to get a cord blood transplant. After a day of developmental and behavioral "testing" we were told that our 19 month old son had the capacity of a one month old baby. That was the first kick in the gut we would receive during that trip! Of course after receiving the results we were then told that Kaleb was not a candidate for the transplant, they told us to take him home and love him as much as we could because we likely had a "year maybe two" - I will never forget hearing that. While we are not at two years yet from hearing that a Duke, we are at two years from learning about this horrible disease, and as I said in my last journal entry - it's only been two years, which has felt like an eternity and the blink of an eye all at the same time.
Our little warrior keeps on fighting, he is having more difficulty with controlling his body temperature, he has been getting fevers pretty frequently, but I don't think he's ready to give up!
RIP Angel's ^Elliott Bensen^ and ^Brooke Urban^ - we love you!
I have spent a better part of the last two years living under the shadow of the darkest rain cloud in the sky, just waiting for the bottom to drop out and drown me in rain. Living with a terminal diagnosis and watching this disease slowly rob your child of all of his abilities is devastating. Knowing what is going to happen but not knowing when causes me to live almost every day in fear. Oh sure, for a little while, when things are going "well" you can almost get complacent, but every time there is even the tiniest bit of a cold, terror wraps its hand around your throat, and you can't help but think, "is this the last time I'll get to hold him in my arms". That very thing just happened to another family, they lost their beautiful daughter to Tay-Sachs. As with all of us, we know our children are dying and, maybe it's just me, but I have it in my head that I'm going to know when it's time, that there will be a sign, he'll be sick, or his body will show signs of shutting down. But, that is just not the case, it doesn't always happen that way, and that is a frightening thought.
People try to understand, they try to sympathize with our struggles, but unless you've been here you simply can't imagine what it's like, nor should you. I stay behind these four walls of our home, our safe haven, germ free, not wanting to leave and people don't really understand my fear for leaving. I have not become agoraphobic, but every time I leave the house, without Kaleb, I fear he'll be gone when I get home. It was best told by another family who lost their daughter shortly before Christmas. She told about a piece from a book called Life After Death which is about a daughter dying of cancer but, "she could not die with her mother around. Her mom wanted so badly to keep her here. The daughter had visited the angels so many times already, but she just could not break her mothers heart by leaving and her mom would never leave her side. Finally when a nurse convinced her to take a break - to go home and shower or something the daughter was able to leave...". I could not have worded it better, that is why I hate leaving him. This is the same reason I have trouble getting to sleep at night, if I close my eyes, the next time I open them, he may be gone.