What Mr. Database is Thankful For

Mr. Database (my husband) wrote this recently and after many requests, I am reposting it here.  He may guest write from time to time. 

This year has changed my perspective on life - a LOT. In all the usual ways that having a child changes your perspective on life, but additionally in the ways that having a child born with health issues does as well. In the blink of an eye, my wife and I discovered that the pregnancy we thought up until literally the very last moments was going perfectly, can go very sour and you can be left with a whole new set of worries that you never even considered.
As the past several years have gone by, and my life has become more about how it involves someone else (Sara) than it does just me, I have found my views on life and politics changing gradually. My once selfishly motivated desire to see a world in which I wasn't forced to give anything up without wanting to, became one where I could see firsthand the value in mandatory giving via taxation. (And let's be crystal clear - since 2/3 of the federal budget goes to medicare, social security, and medicaid, that is exactly what taxation is. I still have a problem with the amount that goes to unrighteous wars, but I know that most of my money is doing good, and I am happy for that.)

When Moe came, and we found out about her heart when she was 6 days old, that worldview was shattered in an instant, rather than continuing it's gradual decline. Completely and utterly annihilated by the reality of the situation I found our little family in. Having been lucky enough to live in a state that was rich enough to enact the health care reform that it did, I knew that I would not have to go through the same nightmare that my parents did of having my daughter cut off by her insurer for using too many benefits. For someone facing a life that might include a heart transplant and anti rejection drugs that would cost literally millions of dollars, this was a very, very good feeling to have. It dawned on me that watching this same kind of reform being pushed and tested in the national stage was the single most important issue I could possibly think of in my life. Having met so many parents through the groups that Sara and I joined who were going through even worse situations than we were, I realized that all I wanted was for every parent to have the same feeling of security that we did, knowing that no matter what happened to them, their children were going to get the care they needed and deserved.

I am very happy and thankful today, knowing that the hard fight that was put forth to give parents that security will stand. Regardless of any other issues or any other history that was made in the last 4 years, nothing means more to me than that. Parents who I now care about, parents with three month old babies who received new hearts, parents with babies who have had half a dozen cardiac surgeries before they were a year old, parents that sit wringing their hands watching their childs life hang in the balance of the incredibly talented medical professionals that care for them, they can know that their kids will continue to receive the care they need and deserve. Nobody can cut them off, nobody can tell them that anti rejection drugs cost too much, nobody can tell them that their 6 month lapse in coverage means they are on their own when it comes to their poor little broken hearts. I don't care what cost it comes at - right is right, and this is right. I am thankful for every one of the Americans who believes that this is the right thing to do, and for the incredible gift they have bestowed upon my family and countless others.

I am incredibly thankful for the family I have, the friends I have (old and new) and their support this year. Having parents who have been through the ringer with critically ill children, and knew exactly what to say to me when I was feeling at my lowest.

I am incredibly thankful for the wonderful care team that Moe has at Boston Childrens Hospital, and I feel incredibly lucky to be so close to such a talented and dedicated group of people, who have been supportive, responsive, and compassionate. It is impossible for me to overstate how wonderful it feels knowing that she has and will continue to receive the very best care available on earth. We are lucky beyond belief for that.

I am thankful every time I see one of these new friends post on an email list, message board, or facebook that their child has received the organ they needed, while simultaneously being heartbroken for the family who, in their greatest moment of tragedy, saw fit to bestow the gift of life upon a child they did not know, had never met, and had never considered in their lives before someone asked them "Will you donate your childs organs?" I urge in the strongest possible terms, any of my friends who are parents to take a moment to have this admittedly morbid conversation with your spouse about your feelings on the matter. Most people never take the time to have this conversation, because they never think it will ever come up - time is of the essence in the situation of organ donation, and having just gone over an emotional cliff is not the time to discuss it. I urge you for the sake of every family who is out there praying every night for a match, to have that conversation and be that giver of the greatest gift possible.

In darker thoughts, the inner challenge I faced reconciling the beliefs that were instilled in me growing up has gotten worse. I make no secrets of my thoughts on religion, god, and such spiritual matters. I was raised a Catholic, and I was taught my entire childhood in Church and Catechism classes about a loving and caring father figure who watched out for his children. I found this very hard to reconcile with the reality of the life my sister faced, and even more so now. I slip back and forth on an almost daily basis between being angry at a God who I perceive to either be letting these things happen to the littlest of lambs in his flock, or actively causing them to happen, and being apathetic about whether this proves that he is not real in the first place. I simply cannot find the place in myself to reconcile heaping praise on a deity that allows or causes so much grief to be delivered to so many families. Some people find new strength to their faith in this situation, and I simply cannot be one of them. This I am not thankful for in the least.

This has been a challenging year emotionally for me, but I can say beyond a shadow of a doubt that my heart has grown more sizes than the grinches because of it. To borrow a phrase from one of the parents that I have met on this journey, who in turn borrowed it from a parent they met on this journey, my life has become big and wide because of this. To further it, my mind, my heart, and my love have become big and wide. There is no going back.