Saturday, June 27, 2015

Be proud to be proud





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Going for a walk with big brothers
I recently realized that by not posting when things are going well, I am basically saying that Thomas's story isn't worth telling unless he is hospitalized or struggling through a complication of his diagnosis. This simply can't be allowed to continue because just look at this face....

So in order to rectify this travesty that I have committed, I will attempt to catch you up on this little boy. He is still working hard on his rolling and is getting closer. He can sit unassisted, which makes him so happy to be able to watch his brothers play and just to see all that goes on around him....like his brothers playing. His sitting has helped him use a high chair now when he eats, which he is also a big fan of. Eating has been slow going, he has trouble with chewing and sometimes gags and then loses all the food that he has eaten, so sometimes it feels like two steps forward and one step back, but we keep working on it and any progress is good progress. Luckily he nurses well still and is able to get good nutrition from that.  He is the most laid back and agreeable baby I have ever been around. He loves to be held and is quite the snuggler. He absolutely adores John, his oldest brother, and he tolerates David, the middle brother. He laughs from a deep down belly place when John plays with him and he loves peek-a-boo. He does not handle the heat well, mostly due to his bladder medication, and he turns bright red, but he is always a trooper about it.
I can't believe he is almost 1! I can't believe that it has been over a year that I have been writing about this sweet baby. Even before we met him, he impacted our lives deeper than we knew he could.  I am so so proud of my littlest boy and I know that he is making great progress and he has come remarkably far from where he started, but I have those moments still. Those moments of searching a stranger's face when they ask how old my baby is and I answer...they are wondering why he's not rolling...he's not talking....he's not eating....hes' not interacting more. I immediately feel the need to stand up for him and explain he has spina bifida. He couldn't breath for the first 6 months of his life. You should see all that he has been through. Then I catch myself. Why do I need to qualify his achievements? As he gets older, what kind of precedent does that set for him if I am constantly saying, well he has spina bifida, give him a break. I need to learn to stop comparing and to stop putting any thought towards what others may think, if I am proud of Thomas, then I need to be proud of Thomas, end of story. As I have reminded myself of this over the past few weeks, I have come to see what peace it has brought. When I talk to people about their kids or even just their life, I find myself not asking questions that lead to comparing or assuming. Instead of "oh he must be crawling everywhere now' or 'is he walking', I ask 'what do you enjoy most about this age'.  I have found that it disarms people and they talk a lot more about real moments rather than saying 'well, he's not walking yet, but he is so close' or 'he probably isn't walking because...' and it leads to a real conversation rather than a contest to see who is the better parent or who is happier. This has made me realize that all of us try to qualify achievements or make excuses for something that we fear may not be seen as good enough, not just special needs parents, and it can be exhausting. By helping people erase the need to compete by choosing how we interact with them, whether consciously or not, they open up more and real connection happens. When real connection happens, we feel much less lonely. Sometimes parenting, and life, can feel lonely and exhausting and something as simple as a quick connection can turn a whole day around. Try it for a day, be aware of how you interact, even if it's not about parenting. Ask a real question that you are interested in and lend a real ear to listen, without interjecting a story of your own or comparing their experience to yours. Hopefully you will like what happens as much as I have and if you do then you have this little superhero to thank!