I am struggling for words today. It has been quite a while since my last post, as life hasn’t given me enough time to sit down and write my thoughts down. Marshall was discharged from the hospital about a week and a half ago, once his breathing stabilized and he was able to feed from a bottle properly. I have been extremely paranoid about getting him sick again, as I have not been able to shake the cough I got from our other germ factory, Quinn, about two weeks ago. Between the germs I’m afraid to bring home from school, and the horror show the TTC streetcar poles must be, I’m lucky to still have a layer of skin on my hands right now.
It has almost felt normal the past ten days. I use that word so hesitantly, as nothing truly feels normal anymore. We sit together at the dinner table, we talk, and the four of us spend the early evening together before Bridget and I divide and conquer during bedtime routines. I have spent a lot of time holding Marshall in my arms in the middle of the night. Thank goodness for the NBA playoffs right now. If not for late-night games, I don’t know how I’d pass the long hours while I rock him to sleep.
He looks so much healthier than his early stints in the hospital. He is pretty hefty, and for his age, he’s quite long. I try and interact with him the same way I did with Quinn, but there is definitely a strain in my heart every night as I worry about whether or not he is going to start showing signs of delay. Or, maybe, he’ll give me some signs that everything is on track and it’s all going to be just fine. I know this language is not right, and not sensitive to his situation. I’m not necessarily implying that any delay equals “bad”. I think what I’m saying is that given the issues that are already evident, I am hoping that there will be a minimum of other hurdles.
Then came the weekend, and we had a nice brunch to attend at the home of good friends. I’m not amazingly comfortable in social situations at the best of times, but my anxiety level was off the charts. I had no reason to be anxious, as our friends already know the situation, and are about as loving and supportive as you could possibly hope for in friends.
It was the other children who were going to be there.
There were four other children there, plus our two little ones. And I love their kids. They are wonderful, and beautiful. And as soon as I saw them, my heart broke for all the wrong reasons. I’m finding it so hard not to compare my beautiful little Marshall to all of the other children I see. Just as I thought, Hey, everything is getting better!, the sight of the other children and the stark difference in appearance to my little boy was a little jolt of reality.
A counselor told Bridget and I recently that as parents, we only have the right to love our children. Expecting them to be a certain way is often a projection of our own insecurities and hangups – guilt that we’ve accumulated from our own lives. People tell me that Marshall will view his physical differences differently than I do, because it will be the only reality he knows. I’m struggling with that idea right now. Although I hope for something different, I am dubious about the idea that our world knows to treat all people with love and kindness. I’m too cynical to hold that thought now. I’m too angry about my inability to let joy into my head anymore. I’m too sad that my little boy has to go through this damned struggle. If one more person tells me that all children have struggles, I’m not sure I’m going to be able to keep myself from tearing my hair out.
I hurt knowing that my fears for him are nothing in comparison to what he may have to endure. I would give everything for him to be spared the pain of the procedures he will have to undergo. I’m angry at the unbelievable odds that this particular rare mutation occurred. I’m angry at feeling constant worry instead of happiness during what should be a time of joy. I’m angry at the ultrasound radiologist, who I will forever believe was too damn lazy and incompetent to do their job properly. I feel angrier now than I did as a teenager listening to the Smashing Pumpkins in my room at 2:00 in the morning wondering why I couldn’t figure out my Physics homework.
I’m so tired of feeling hopeless. I just want to hold him and love him for who he is, and for the man he will become. I know I will get there eventually. Sometimes, I am there, during moments when I let my guard down, when I lean in close as he is falling asleep and I let my worries and tears spill out to him, hoping he can hear my voice.
One day at a time.
One day at a time.