After Simon was discharged from the hospital and we went home, I had to prepare myself for a whole different entrance to the world. With a healthy baby, you are prepared for the smiles of people as they admire the new precious bundle. When you take home a baby with a tube subtly taped to his cheek you are preparing for an entirely different set of smiles. There are the smiles that say, "Oh what a cute baby. I wonder what is wrong with him?" The smiles that don't quite meet peoples eyes. The people that don't meet your eyes after they catch a glimpse of the tube. It was hard to be defined by a baby with a feeding tube.
At the beginning I kept repeating to the nurses that unless you knew he had D.S. Simon didn't look like he had it. It was partially a survival thing for me and partially and aesthetic thing. I didn't want to be ashamed of Simon because of how he looked. I wanted to be proud of my baby boy for overcoming the obstacles of eating and other people's stigmas. At the beginning I wasn't ashamed of him for how he looked. He didn't look different from the other babies in the NICU because he hadn't grown into his features. I desperately clung to the fact that people couldn't tell. I wasn't ashamed, just not ready to answer a million questions, or hear another million stories.
My attitude after we came home changed somewhat. The new survival was to just get through. Our first public outing was to a restaurant with Andrew's sister and brother-in-law, his cousins from Winnipeg and Saskatoon, and five lively little girls under the age of seven. We went to the Old Spaghetti factory. We were kind of tucked away from other people because we were such a large group. At that time Simon had such a small amount to eat, that we only had to use a 30 ml syringe to feed him. It was inconspicuous. He was so little I didn't have to hold it very high to get it to drain properly, and he was asleep which helped a lot. The feeding went off without a hitch. No vomit, no tube being pulled out. What a relief. If people were glancing at our table they were distracted by the beautiful little girls. It was a good wade in to public life.
Just a side note: It is such a blessing now, to be able to pack in the diaper bag a diaper or two, wipes, and a spare set of clothes. No stethescope, no spare tubes and tape, lubricant, formula and milk, no booklet with emergency numbers just in case.
Back to the attitude. As time went on, we went out a little more. Our second stop was at church on Sunday morning. I told myself not to cry. Over and over again I repeated it. It didn't help. When Vanessa announced from the stage that we were there for the first time that morning, I cried. I stood there with Simon in my arms and my chin quivering like crazy. I didn't look up because I knew I would lose it. I cried because we were finally there. I cried because I didn't want to cry. I didn't want people to think that I was sad that Simon had D.S. I wanted to be able to make a little speech to thank people and tell them how proud we were of our beautiful baby boy. I wanted to tell them that I was sad because things were so different than I had expected them to be with a new baby. I cried for the loss of what we had expected, not for what we were given.
Andrew and I had a brief talk the other day about grief. We talked about how we had felt at the beginning, because back then we didn't have time. I ate, slept, fed and pumped. That was all I had energy for. In our talk about grief Andrew couldn't understand why I still felt grief now. Simon is healthy, the major obstacles are over. At least in Andrew's opinion. Maybe I am a pessimist. I am overjoyed that we only have to go back to the cardiologist once a year. I am overjoyed that the tube will hopefully never have to go back up his nose. I am overjoyed that he is doing so well in many things. But in the back of my mind there is always the little thought that he may live with us for the rest of our lives. Not a guarantee, but a possibility. There is the thought that kids may give him a really hard time in school. Again only a possibility. Will he be able to go to our camp? Again a possibility. With Elizabeth there are a lot more guarantees. I hope she will get married. She will move out (or we will kick her out eventually). She will probably go to university or college and get a job. She will get a driver's license and probably buy a car. That is what is expected of people in life. With Simon it is different. Sure we will teach him to drive a car. But he probably won't get a license. There is a grief there. Not a shame, just a loss of the things that are expected of people in life.
Again I digress. Back to the attitude. After the church announcement our pastor came to us and prayed with us and the congregation. He has a nephew with D.S. so he knew more than most people about what we were going through. We really appreciated that. To know that we weren't alone. I hooked up with Sean's sister on the phone and had what was probably a very awkward conversation as I asked what now seem like ridiculous questions. They were important to me at the time, but now I realize how dumb they were. Thanks for being understanding Heidi. Good grief Sara did you really ask if her son's tongue stuck out?
Back again to the attitude. (I will get to my point eventually.) After church people came up to us to see Simon and talk to us. People saw the tube, and ignored the tube. Some bold people even asked politely about the tube. "Is that to help him breathe?" See the thing about being polite, is that you try so hard not to step on toes, that you actually trip over your own feet in the process. I had some very sarcastic responses in my head when people asked about the breathing tube, but to my credit I kept them in my head. Be kind Sara they are learning. The best question for me was from someone a little older than myself. He walked up to us, took a look at Simon and said, "What's with the tube in his nose?" Thank you!!! He asked the question that people were thinking, and I was waiting to answer. "It goes into his stomach to help him eat." That simple! What a relief to have that out in the open. Why can't we all be like that. Oh wait, because we aren't all in that frame of mind to hear such questions all the time. Oh in the ideal world we would be.
To the point this time. My friend Kristina and I took Simon with us when we went to a box store to pick up a few things that we needed. We took Elizabeth with us, and Andrew stayed home. Then my attitude as we walked into the store was one of daring. I dared people to ask about the tube. I dared people to stare I dared people to notice that something was different about Simon. No one did. They commented on his car seat cover, (it is really cute) and they commented on Elizabeth, (she is really cute) or they didn't comment at all. I was arrogant and nobody gave me the satisfaction of being the one to say something about my "intellectually challenged" son. I was a little disappointed. I had all kinds of answers ready for the first person to jump in. No one jumped. It gave me a little bit of grace for the human race. Maybe we aren't all as stupid as I like to sometimes think. The arrogance has faded over that past thirteen months and 26 days. I have stopped challenging people with my body language. I have become more confident with my son in public. There is always a little bit of disappointment when we meet someone who is close to the same age as Simon and they are waving and walking and talking. There will always be disappointment. That is life. I will always have expectations that won't be met. I can't even meet my own expectations of myself , never mind my expectations of others.
I think it is time to go and hug my son. I hear him in the other room with his Daddy. He is using vowel sounds and giving his warrior cry as he gets helped to his feet. He loves to walk with someone to help him. He loves people, and they love him. How can you not love the big goofy grin that breaks over his face when he sees his Mommy. There will always be attitude, there will always be disappointment, but as long as love is greater than those, life continues.
