My dearest sweet baby Gavin,

Believe in miracles. You are everything and more than we could have asked for. I look forward to the day when you read this and think that I was being an over protective mom because this disease no longer dictates your life (“mom’s crazy” – I can hear it now).

May you always know how loved and special you are. May you grow to be a man who gives freely and thinks kindly. May you continue to aspire to greatness and not be discouraged with the stumbling blocks (we all fall, get back up son). May you become a thirsty learner and a leader and a man of your word. May you remember how lucky you are and support those less fortunate. Be bold, ask questions and face your life with courage and honor. May you always love with innocence. May you see in yourself what I already see in you at the tender age of one.

If I could climb every mountain for you, take away any pain or hardship and steer you always into the right direction, I would. Your life is still unwritten and there is beauty in that, you determine who you are and we can only guide you on your journey. I can’t promise you perfection, I can’t promise you much of anything, except that I know that we were kissed by an angel twice in our lives, with you and your sister, and that every second that I breathe I love you more than the last breath! That, I promise you, will never change!

Happy Birthday my beautiful, perfect giggly baby boy! This is your year, Double 0 Seven: Mission Possible: Kidney transplant!

XXOOXXX,

Mom

We are once again sick, this should not seriously surprise anyone, it seems to be a constant theme (slightly dejected sigh insert here). It needs to get warm. Gav is at 100 temp wise and Lulu at 99.8 and I’m not talking vacation spots. Seriously spring: where are you? I long for open windows and a good day at the park. We must be masochists living in Wisconsin. The kids however are living the dream per usual…

Lauren’s prince did come, and his name is daddy. She is all about being with her dad right now. It seems that she enjoys keeping secrets (although she can keep them for a total of three minutes and that’s with hands covering mouth) She is three going on thirteen and I am not sure if she breathes or just has some strong super kid power to talk talk talk! How is it that she has more energy than me even when she has a cold? She truly amazes me. Lauren swears that Gavin told her that he wanted a dog for his birthday. I told her a dog will have to wait until we got a fence and she went downstairs, grabbed a toy hammer and said she and her dad (go figure) could build one. Anyone who knows Jay (bless his heart) knows this is not possible (finance guy, not handy guy), but this just reinforces the daddy love. Her next plan of attack was pet napping the neighbor’s tiny dog. I then informed her stealing dogs is frowned upon and not good for neighborhood relations. Don’t worry; I will check her closets nightly if I hear strange noises.

Gav is doing his own bit of talking, quite a bit (especially right around time for him to go to sleep). Jabber jabber jabber—- giggle giggle giggle.

I looked at the COTA website today at all the other kids waiting for transplant and checked out all their websites. Everyone’s story is different and heartwarming. It’s amazing the power and strength of a child. They just have you wrapped around their little digits!

Gav has quite the cold, and I am now convinced that every time I take him to the grocery store he gets sick. Apparently there must be a special on it in isle 6. We had a blockage from inside the ng tube this week so he has been flying high without the tube the last two nights. This is good for him since it irritates the bejesus out of him and lets him clear up that congestion. Bad for me because he is not being constantly fed, he is constantly waking up looking to be fed. Of course there is that pesky weight issue, down down down instead of up up up!

Researchers at Wake Forest University have found that bladders grown from patients’ own cells have been successfully transplanted and work. This shows that regenerative medicine, cell therapy, and cell research could one day be a solution for people who need transplants, like Gavin. To read more, click here.

It is so amazing to me to think that they could transplant Gavin with his own grown kidney some day, maybe even when he needs his second transplant. That would mean no anti-rejection meds, no worrying about kidney failure or acute rejection. He could live a completely normal life (of course no mother thinks their child is going to live a normal life, let’s say extraordinary!). Support regenerative medicine, cell therapy, and stem cell research! This could be your child some day or someone you know. If they can find a cure for the love of all things, let them find it!

Speaking of, for the love of juice Gav will sacrifice almost anything, even his mommy. He did his first push off of me (like I had baby repellent on) when he saw his sweet juice sippy cup coming. He rubs it lovingly, ode to juice… “I love thee, I love thee with a love that shall not die til the sun grows cold or the stars grow old.” (Shakespeare)

Just a quick Happy 90th Birthday to Jay’s Grandma Rose, we love you! Sorry we missed your party, but we are thinking of you and sending baby kisses via air mail!

Jill

“Of course I’ve changed, I’m coming home from war”. I heard that last night as I was driving back home on the radio and it made me reflect on where I was at in my life. Although I smile from ‘son’ up to ‘son’ down, I often feel like this is still a battleground. I can list on my hands the moments in my life that have defined who I am. There are the usual: graduation, marriage, kids and then there were the two that shook me.

When I first stepped into an inner city classroom of 1st graders, I was amazed that only fifteen minutes from my house six year old kids and their families lived lives of complete poverty. That we still had a long way to go for equality and education. That although kids are kids with the same BIG hearts- life isn’t always so bright or fair. I can remember every child that I taught, and at times it seemed like an uphill battle, but like one teacher told me “when you teach them to read, nobody can take that away from them”. It gave me some comfort that in some way I was doing something to improve their quality of life. It can’t be explained in words, but it changed me, how I viewed life and my purpose here.

The second was being faced with Gavin’s mortality at his birth and thereafter. Although we wake up every day and try to get normalcy, things are not yet normal. You can’t go through this and remain unchanged, of course it has changed me. The comfort that I have is knowing that each night as I lie Lauren and Gavin to sleep that they know how much they are loved. But coming to the realization that you can’t always protect your child from everything is hard to swallow. You would gladly die for your child, but what do you do when that is not enough? Life is fragile. I am still transitioning into the stage where everything is okay, we still are as a family still looking for the balance. Some days are better than others. Such is life and love.

Lauren is having fun per usual and has a new favorite thing, Nerds candy. Nerds reminds me of hanging out and watching basketball games with my family when I was little, so I have to laugh when her little eyes light up at the sight of the mini Nerds box. Candy to kids is better than gold. She is now a little girl and not a toddler, it’s funny how they seem to grow every night. She is down with this ground hog concept and in very interested to see if that silly Phil is going to see his shadow or not (more winter, ugh!) She helped me shovel for like three seconds before deciding that it was freezing outside and was much better off inside with daddy and a hot cup of hot cocoa.

Gav is now becoming a little stunt man! Babies are super flexible, I can’t believe the way this kid can bend, especially if he’s trying to grab at some of Lauren’s toys. He, of course, is attracted to all things little and is getting a huge kick out of “Baby Alive”. It’s pretty cute, it’s like his little baby friend that talks and he can touch her gigantic eyeballs and pull her hair and all she does is laugh (unlike Lauren who does not appreciate a good hair pull). His sense of humor is really starting to kick in and now has some pretty full blown giggle fits. We have seen 16 lbs on the scale (he’s down a bit again), but it sure felt great to see that number on there and know we are moving in the right direction. We should hear more on his machine this week so keep your fingers crossed. Until then, we are blowing bubbles and trying to wait out this snow. I must admit I am constantly dreaming in my head of “chillaxion” on some tropical island. That’s what we are doing after all this, a big family vacation! I’ve learned that being with those that I love is enough, but thinking about being with them in a warm vacation spot is even better! With that thought I am going to try to get some more sleep and dream of palm trees and sun!

Jill