To the outside world, I probably look normal. I still live my life – go to the store, go to the gym, spend time with friends and family when possible. I’ve been told that I “look great” several times by well-meaning people. I am back at work, and it feels in some ways like I never left.
But every moment of my day is consumed with something James related. My thoughts are always with him. He is always there -sometimes at the forefront of my mind, sometimes quietly in the back, but always there.
Parenting a child such as James is immensely stressful. There isn’t a moment that I am not wondering if that cough isn’t the beginning of a cold. If that cold isn’t the beginning of the end. Every time he cries, every time he makes a noise that I haven’t heard before, I wonder if it’s a normal baby thing, or if he’s in pain, if he needs medical attention. I never, ever know when to worry and when to not worry. I am on constant alert for changes in his condition- changes that could be nothing but normal baby behavior or changes that could signify a life-ending illness. It is a weight that is always, always there – a low grade fever of fear that never relents.
Until very recently, trisomy 18 was listed with conditions for which newborns should not be resuscitated. It was actually written down that doctors shouldn’t intervene on behalf of these children. Basically, they were left to die. As a result, there is a dirth of information on trisomy 18. The statistics that do exist are grim. I know parent after parent that is fighting the medical system to get the same care for their children that other children receive. It’s incredibly difficult knowing what therapies that James would benefit from and how to go about getting them. Thankfully, we have a nearby family that has been through this already with their daughter, and they have been guiding us. Our PACT team is also helping immensely with this process.
It’s sometimes exhausting to feel like I have to constantly advocate and stay on top of what James needs. No one else is going to do it for us. I have to become incredibly educated on trisomy 18 so I know what to ask for, what to expect. I have to know what to tell doctors that have little real-life experience with this condition. All the while, I must work, take care of my daughters and house, and still have something left to give to my hard-working husband (and right now, I have very little to give). As an example of the difficulty of juggling all of this, I forgot to pay the mortgage this month and just received a phone call asking where our payment was (I remembered Sunday afternoon and had already sent it).
Getting all of James’ care paid for is another hurdle to cross. Currently, James can receive Medicaid as a secondary insurance to our private. With me back to work, we will lose this benefit. So we are applying for CAP/C (Community Alternatives Program for Children) – a form of Medicaid. Once that’s approved, they will help with James’ therapies. There is also NCHipp – something I was recently introduced to. It encourages people to keep their private insurance by paying premiums, copays, etc. – keeping people off state/federal aid. With all that being said, there’s no predicting how our medical costs will work out. Who is ever prepared for something this massive?
We received our first NICU statement this past weekend, and it floored me. 13 days in the NICU with a relatively stable baby? $81,000! That doesn’t include the c-section and all of the other associated costs of his care. That was basically room, board, and some lab work.
It’s a mire of confusing paperwork, phone calls, and constant research. I talk to other trisomy parents daily in an effort to know what to expect and how to help James.
There is also the weight of trying to be normal. I want to talk about James with friends, but I don’t want to depress them. I don’t want to be someone who can only talk about her sick child. I don’t want people to back slowly away from me because they can’t handle the burden of being friends with someone who is struggling to stay afloat. I don’t want people to be afraid to talk to me about James and thus slowly disappear into the mist of my “life before.” I want to talk to them about how awful this disease is, how 2 more babies have died in the last 24 hours, but I can’t bring myself to be such a downer. I can’t stand seeing pity in their eyes but the relief there too of knowing that at the end of it, they go home to their healthy children and normal lives.
And then there is the worry of the future.
I am going to put this is out there, and it might make me seem like a less likeable person, but so be it. I have never felt entirely comfortable in the presence of severely mentally handicapped people. I know I am not alone in this feeling. Mentally handicapped people make me uncomfortable. They always seemed like less – for lack of a better or nicer word – than non-mentally handicapped people. The physical deformities that often come along with mental handicaps have always made me uncomfortable, as well. They stand out, they aren’t “normal.” They’re sometimes loud and interruptive in public places. No one ever seems to look directly at them.
We live in a culture where beauty is touted as the end all and be all of existence. We’re supposed to be thin, tan, hairless in all the right places (women). Nothing should sag. Everything should be symmetrical. What isn’t perfect should be trimmed, dyed, coated with make-up, hidden under Spanx, or otherwise masked. We should never be ourselves, because we are mostly not beautiful. That thinking has had a deep impact on all of us. Handicapped people aren’t conventionally attractive.
Before James was born, I looked at pictures of trisomy 18 babies, and I recoiled sometimes. I’m not proud to say it, but I am saying it. I didn’t find those babies beautiful. Now, I find them all beautiful – heartrendingly so. Right now, James is an adorable little squishy baby. Everyone loves his pictures. His deformities aren’t severe, but they will be more obvious as he grows. He will likely grow disproportionately. There will be a day where people don’t find him beautiful, where people will think that his life is less valuable because he is handicapped, where people will be uncomfortable to be around him. There will be days that people will avoid eye contact with our family – maybe to avoid seeming intrusive and maybe because they think of handicapped people as lesser or not as important (as I once did). Even I struggle with this false perception of beauty. For instance, there are pictures of James that I love, but I don’t share them because it is obvious in those pictures that something is “wrong” with him.
This weighs heavily on me. It has changed the way that I view the world – the way that I view others. Today, I was going into the DMV to obtain a handicapped permit. I passed a very heavy woman (borderline morbid obesity) that was limping badly. My mind immediately started to make up a story – she doesn’t eat well. She doesn’t take care of herself. She’s white trash. And then I stopped and really looked at the woman, and I realized that I have no idea – absolutely no idea what that woman’s life is or has been. I made a snap judgment based on her outward appearance and presumed to know her life. I felt immensely sad. People will judge James too. People will judge us. People will wonder what I did wrong as a mother to have a trisomy baby. People will think he is less than perfect.
The thing is – we are all less than perfect. Some of us are less than perfect on the outside but beautiful souls on the inside. Some of us are beautiful on the outside and hideous on the inside. Most of us are somewhere in the middle. We would all do a lot better to be kinder, a lot less critical and presumptuous, a little more open to those that are “different” than the “norm.” Whatever the norm is. We could all be better friends, children, spouses, siblings. We should ask more, listen more, love more. We should stare that thing that makes us most uncomfortable in the face and overcome it. Every day now, I strive to be a better person. I send cards to grieving parents, I tell my loved ones that I love them more, I try to be less critical of my husband, I ask how my friends are doing, and I really listen when they answer. I look for small kind deeds to do when I’m out and about. My son has made me a better person.
Let him make you a better person too. That way, when he dies, when he leaves my arms forever, his legacy will live on in a kinder, better world. This will bring me some small measure of comfort when he is gone.