Since the day we found out that Matthew may have Down syndrome, one of the biggest adjustments has been changing our expectations. This has taken some getting used to for us. J.P. and I thought we had this whole baby thing figured out. But then Matthew came along and showed us that we have a thing or two left to learn. My pregnancy was different because I was considered high-risk, my labor was scary, life in the NICU was all new to us, and being home with him has brought on its own set of challenges. Some of the challenges are because of CDH, some are because of Down syndrome, and some are just because Matthew is a baby with his own set of quirks and personality.
My friend Melissa Gamble shared the following poem/essay a few years back, and I remember reading it and gaining a new perspective on what life with a special needs child might be like. The poem was written by Emily Perl Kingsley about life with her son, who was born with Down syndrome in 1974. It is a wonderful metaphor for the journey we find ourselves on with Matthew.
(Disclaimer: I would choose to go to Holland over Italy in my real life, but I didn't write the poem)
J.P. and I have tried to remain positive and optimistic, but I would be lying if I said there aren't times where we wonder how we got here. I have always loved the baby stage, but I find myself wishing for it to go faster so that life will be easier. I know I will look back and regret not soaking up every second of this sweet tiny little baby, but some days it is just really hard.
Matthew is a sweet and relatively easy-going baby in almost every regard except for eating. He has been without his feeding tube for three weeks now, but he still has his fair share of feeding issues. He doesn't seem all that interested in food, so feeding him can be a battle. The doctors in Kansas City have told us how much he is supposed to eat and how much they want him to gain each day. Having these goals hanging over our heads is stressful. I exclusively nursed all our other babies, so worrying about feeding volumes is totally new to me, and I am not a fan. We have a weigh-in every night, and the outcome effects our mood more than I would like to admit. Once we reach the point where we can stop stressing about weight gain, I will be a much happier Momma.
Matthew has started the process of weaning off oxygen. He has been on oxygen since coming home from the hospital. Because his right lung was a little small and under-developed, he needed just a little bit of help keeping his blood oxygen level up. Having him on oxygen isn't the worst thing ever, but it will be so wonderful to have it gone. Imagine having to carry your purse around your house with you everywhere you go. That is what it is like to carry his oxygen tank around. It is a very small tank that we switch out once a day, and we carry it in a bag that has a shoulder strap. It just makes him a little less portable than a a typical baby. He currently is allowed to be off his oxygen while he is awake. He is doing very well with that, so we are hopeful to keep moving towards being oxygen free in the next couple weeks. Once he is off oxygen we will have a totally wireless baby with a naked face!!
Matthew turned two months old. With all our other babies the time flew by. With Matthew, it seems like he has been here for SO much longer. J.P. and I both said "only two months!?" I guess its because our whole lives changed long before he was born. He woke up one morning not too long ago and gave me the biggest smile ever! He is still a little stingy with them, but he has the most precious smile that lights up his whole face. One big smile from him can make all my stress and frustrations melt away.
We go back to Kansas City on August 4th to visit the Down syndrome clinic. We have a four hour appointment in which we will meet with a number of different specialists. There is a long list of health issues that are common in people with Down syndrome, and the people at the clinic know just what needs to be checked. He will also have a chest X-Ray during our visit to check that everything from his surgery is still in good shape. After that appointment, we won't have to go back to KC until he is six months old.
The hardest part is hopefully behind us, but we know there is still a long road ahead. We have been told by so many people that Matthew will figure it all out, just on his own time. I am sure this is a lesson in patience that he will be teaching us for a very long time. While we can't wait to see how Matthew grows and what all he accomplishes, we need to take a deep breath and remind ourselves to enjoy him as he is right now.
