I have thought about writing many of these words and thoughts so many times over the last several months. Sometimes I didn’t know what to say or there was too much to say. Some days emotions were too raw and other days I felt nothing. Some days I was ready to educate the world and then there were days I just didn’t want to talk about it any more and I felt I had nothing to offer.
We started Meatball’s growth hormone injections today. We have been anticipating this day for months and there were points when I was sure it would never come. Today was a really bittersweet day for me. To the outsider this will all sound crazy…how can the day your son finally begins to receive treatment for his disorder be anything other than amazing? To the countless other Moms I have met whose children have this disorder they understand exactly where I am coming from. A child who produces growth hormones on their own grows normally and gradually. You don’t notice or really think about it until one day you put their pants on and they are two inches too short. For kids with GHD it’s not like that. They literally don’t grow. We will take a very active role in making him grow. It is something I think about and deal with everyday. From the fact that he is still in an infant carrier to trying to find shoes to fit him that he can walk in when his feet are the size of a child that doesn’t walk yet to the Mom in the park who upon finding out he is 18 months old makes a big fuss and carries on insensitively about how small he is and that her friend’s 9 month old is bigger than him (as if I wasn’t aware of all of this). The truth is I’m use to him looking this way. And if it weren’t for the fact that there are a lot of other health concerns associated with a lack of growth hormones I honestly wouldn’t care how slow he grew or tall he got. Some days it bothers me and I know as he got older his height would be more of an issues but to me…right now…he is perfect.
He has pretty much been this size since last August. Nine months! Nine months of him being the same size…of not needing to buy new clothes or only buying them because his wore out. And now possibly in a matter of weeks he is going to change before our eyes. He will get taller and thinner, his face will mature. Our baby won’t be our baby anymore (don’t even get me started on that::sniff).
Like I said if you haven’t been there this probably sounds like a woe is me post of a crazy mom. I am truly happy there is a treatment available for him. I am not happy that he will need daily injections through puberty and possibly the rest of his life. That is not an easy road and no one wants that for their child.
Today we started this journey with his first injection. Right now there are a lot of unknowns. Will this change his personality? Will it really help? Will he really get use to the injections? For a while every weird thing that happens (like tonight when he threw up a tiny bit) we will wonder if this is a side effect to the drug. How will this all effect him as a teenager and a young man?
I am hopeful though too. I am hopeful that in a few months he will look like all the other kids his age. I am hopeful that as he grows his legs will turn out like they should for a child his age and he won’t fall so much. I am hopeful that his hypoglycemia episodes will stop (and I am thankful that they aren’t as bad as some kids I know). I am hopeful that through all this he will become a strong and compassionate person. He has shown us already he lets nothing stand in his way and I pray that continues. That even if he has to work a little harder than other kids because of his size that he will preservers and be a role model to other kids who face challenges in their life. I hope this all will teach his brother and sister compassion to others and acceptance of those who are different as well.
This journey is really a rollercoaster of emotions and I know it really is just getting started. I am so thankful for the amazing support system we have to encourage us! I am thankful for the group of Moms I have met on line who “get it” in a way no one else can. I am thankful for modern medicine and that right now as things stand we have coverage for his medication. Most of all I am thankful for this amazing little person who keeps me on my toes daily, gives me frequent heart attacks, has taught me so much about being a Mom when I was pretty cocky and thought I knew what I was doing, has taught me to let go and be more present and has made me love so fiercely it hurts. So here we go on the next phase of this adventure and I just want to say to him, “Grow baby grow!”