The due date of our little one had come and gone. As March 14th passed I thought perhaps it would only be a few days to wait, boy I had no idea. Finally on March 25th, Getty showed up to the party. I remember the day before, I had decided and that I was just going to be pregnant forever. The old adage that women are only pregnant for 9 months could not have possibly come from a woman. I think by the time I was overdue I was counting the days, minutes, and seconds until she came.
So here we are today celebrating our little Getty’s 6 month birthday. Getty must have been ready to get the party started this morning because she woke up earlier than usual… much, much earlier than usual. Where did the time go?
I remember when Getty was born, Mark and I would get a bit stressed out trying to figure out how to swaddle. Now I believe we could swaddle an elephant with the right resources. Is Getty pooping enough and why does the color fluctuate so much? Will she let us know when she is hungry? Is her head going to be permanently flat or is there a way to fix that?
All valid questions for a new couple that have never really spent very much time with an infant. The hows, the whys, and the what if’s were all a bit overwhelming to us.
Since Getty’s diagnosis the what if’s have been taken to a whole new level and then some. Even writing that sentence seems like an understatement.
Mark and I are arming ourselves with as much knowledge as we can. I am learning and accepting that Mark and I are dealing with Getty’s diagnosis in different ways. We are definitely pulling to our strengths. Mark is very logical and clinical and has the strength of diligent research and persistent correspondence with the SMA community and our doctors. I, on the other hand, am the emotional component, which is strange because I would never have thought that in the past. I am also enjoying the assisting in some of the fund-raising events.
We had the opportunity today to meet the Phelps Family. Their little boy, Aaron, is such a great little guy. A real charmer, he even got Getty a few birthday gifts: an alphabet wheel, that we have already played with and she loves, some rings, and more water buddies for the tub. Thank you all for having us over. Your time and support continues to be so appreciated and absolutely needed.
Since the diagnosis, Mark and I are learning very quickly that we have to be Getty’s advocate. We are learning that our doctors, while very capable, may not share our same need to do all we can to help Getty thrive. I am growing frustrated knowing that not only are Mark and I working full-time to make ends meet, but also spending tons of time researching and contacting other families just to make sure we are arming ourselves with all the knowledge we can. It is exhausting and it is frustrating. You would think that if a doctor didn’t have the expertise in SMA, they would just come clean and open lines of communication with doctors that see SMA children all the time, rather than compromise a child’s health. We are learning SMA treatment and research has significantly flourished in the last few years. We did not become Getty’s parents just to watch her die; we became Getty’s parents to help her thrive and to love every second we have with her. We need to find doctors that share that same philosophy.
So after a very long day today, Getty and I do what we do best, nap. After getting home from Fairfield, I swaddled her up and we laid together, like we do every day, and got a nice three hour nap. What a special little girl we have. We continue to learn so much from her. How on earth can such a little being have not only so much control over her parents but have the ability to have so many people rally around her? Oh Getty how we love you so much!