There is no such thing as normal. I was on the phone the other day when my older brother broke that news to me…”There is no such thing as a normal life, there is just life, Jill”…it’s funny how when you are outside of normal you try to break back in, like it’s an exclusive club that you have been denied access to, but when you are in it, normalcy, you grow restless and you try to break out of it. I can complain because I am tired, but I am happy with the two little kiddos that take all my time, and there is no other place that I would rather be. I can be angry that my son has been inflicted with this disease, but then he has survived, more than survived, he has become a warrior, and for that we are forever grateful…I can cry because I don’t know what tomorrow brings, or be happy in the fact that I still hope that tomorrow is coming…my life may be unpredictable but we have been blessed.
I remember when Gav was first born, when my body could not stay awake any longer, I would drift into sleep and dream that this was all a nightmare and when I woke up it would go away, but then instead of an alarm clock I would wake up to a “ding ding ding” and it was like the start of a boxing match. I kept thinking, then, that it was a battle with God that every day I was in the ring with him fighting for Gavin to stay here with us, I was so mad. It was so surreal, you always say you “just” want a healthy baby, but you never really think that you are going to have an unhealthy baby. Even when I was coming in daily for monitoring with Gavin in the womb I thought, these doctors are probably overreacting, they are probably wrong. It’s like you are in a strange fog when science can’t explain it. This disease has brought me to my knees several times, but I have gotten stronger and less angry and more and more grateful…not for the disease, but for what it has forced me to learn. There are no promises, there are moments, and what we make of life is what it is.
I’m not sure if you saw the news story about the transplant heroes that crashed their plane while flying to Michigan…I just wanted to take a moment and remember them. People who decide to do these jobs: doctors, nurses, surgeons, scientists they are our angels without wings, and some of them now just got their own pair. I have met amazing people in the health care profession, some started our journey with us and are no longer a part of our care, some are still with us and I am sure there are some that we have not met yet, but each and every one of them is why we have our son today…each hold a place in our heart that can never be touched and will never be forgotten. They are brilliant, talented, loving individuals who give a big chunk of their life to make other people’s life better. I listened to a news conference of the family members of those who were lost, and they said if any good can come of this tragedy, may it be to highlight the need of organ donation…May they be blessed and all those who love them!
I hadn’t journaled for a while, I was in a bit of a mental winter. It’s funny – for two years I have been waiting, praying for transplant, and now that we are getting closer and closer, it’s getting scary…just the unexpected, the different cares. I feel like I could do dialysis in my sleep, but this will be a whole new ball game, and the weight of making these kind of decisions keeps you up at night…weighing all the pros and cons of every center so that you never look back and think, we could have done something more…filling out the living will and thinking about what could all happen, it’s a lot to imagine. God forbid, I know that if anything did happen to me there is no doubt that if I had to do it all over again I would do it again and again and again… know that Gav, there is nothing in this world I would not give you or your sister! I can’t even think about losing Gavin, because that is one thing that I don’t ever think I could bare.
Lauren is still amazing with each bat of her lashes. She recently fed the giraffes at the zoo and petted sting rays while riding on miniature ponies and convincing her Grammy that getting a blue moon ice cream would be top notch…I tell you I would like to do a tag team on her life sometimes! Then there was her star debut, her first performance on stage. It’s pretty cute to see 12 little shiny patent leather tap shoes under the curtain skirt and six smiling faces as it opens. Jay and I thought she may be a flight risk, but just the opposite, she almost had to be peeled off the stage. Blowing kisses to the audience and curtsying with the best of them – it was quite adorable. She wakes up every morning and lets me know that she is “all fired up” and does a couple of playful punching jabs in the air like she is ready to fight through this upcoming fun-filled day with all that she’s got! We made a vegetable garden in her old sandbox and I am hoping that something grows out of it (I do not have a green thumb) but we are happy that the seeds are sprouting!
Gav seems to be doing much better, in fact he is turning into quite the little handful! He is up to high 20 lb range and now is off the growth hormone because we think that may be what is causing the allergies…he is a crawling like crazy (his favorite is trying to climb the stairs) and is starting to walk a short distance while I hold his hands up. Every time I see him moving it reminds me of the dancing baby on Ally McBeal. We have a bit of a bad slapping habit that we are working on curbing, but he always has been our little Muhammad Ali! He had a procedure done on Monday (6/11), but we still didn’t get the answers that we needed. The nurses in recovery said that he woke up swinging…he’s one tough cookie, he knows when to laugh and when to fight! They give kids a drug before they go in that makes them forget what happens and makes them a little loopy (they probably should extend the same courtesy to their parents) and he was loving up the nurses and the anesthesiologist before being taken in. Hopping from one to another and giving “zerberts” while completely out of it… no exposed skin is safe from the zerbert attack!
Hope you are enjoying the sun, I know the kids are starting to get tan because from the moment they wake up until we drag them kicking and screaming to bed that is where they want to be! Take Care and may you be blessed!