When I decided to have a baby, I had grand fantasies about how perfect it would be. I imagined a charmed life, filled with fun trips to the pumpkin patch, or pictures with Santa and the Easter Bunny. Teaching the baby how to walk and talk. What I got instead, was a terminal diagnosis and the hardest/most rewarding fight of my life.
It never occurred to me that this new life of mine was a possibility. All of our ultrasounds were normal. There was no cause for concern. Who would have thought that I would have to put my newborn on a helicopter and fly her two hours away so she could receive proper medical care? Who would have thought that I would have to fight the local hospital about her right to proper medical care? Who would have thought that I would have to watch my sweet tiny girl go through open heart surgery, physical therapy, occupational therapy and countless other tests and appointments every week?
When Lila was born it was pretty obvious that there was something “different” about her. Instead of the typical congratulations and happy hugs, we were informed that our baby would have to stay in the special care nursery and be subjected to countless tests.
First, we were told there was a heart defect, then we were told that they suspected a genetic problem. Instead of telling us how beautiful she was, they pointed out how her facial features were asymmetric, how her muscle tone was very weak. At a time when you’re hormonal and wanting to be excited about the birth of your first child, those remarks cut you deep.
When Lila was six days old, we got the official Trisomy 18 diagnosis,and the “incompatible with life” speech. I cannot begin to tell you how awful that moment was. It’s like all of the good in my world was sucked out. Almost like I would never feel happy or whole again. It’s so hard to look at your beautiful baby and realize that they will never live the life that you dreamed for them. You wonder what on earth it was that you ever did to deserve this. I began to spiral and feel very sorry for myself. Slowly I began to grieve the loss of the child I thought I would have and slowly start to accept the one I had been given.
As time went on, I got used to my new reality. I even began to enjoy life again, but I still had my dark days. Which brings me back to today.
Today Lila had therapy and we discussed where Lila was at and where she needs to be. Most of the time I try not to focus on the things that she should be doing. It’s too hard, it makes me too sad to focus on her challenges. Instead, I prefer to focus on what she can do. However, occasionally in therapy to make insurance companies happy we have to list what her strengths and challenges are. Seeing it listed on paper in black and white is frustrating and heartbreaking. The reality is that my kid has some really good strengths, but she also has a whole heaping mountain of challenges.
It’s even more frustrating when they keep adding to the list of things I’m supposed to do at home to help her. It makes me feel like I am failing her, but I don’t know how to do any better. Where am I supposed to find the time? I work twelve hour shifts on Fridays, Saturdays and Sundays so I can devote the rest of my week to her many appointments. There are usually between three and five a week. She gets tube feedings every three hours and before we can feed her via the tube we have to offer her a bottle. So I try to coax her into eating orally. She usually only tolerates me doing that for a few minutes before she is in meltdown mode.
Once I calm her down, I have to tube the rest which takes about 20 to 30 minutes on average. I do range of motion exercises with her twice a day, we do infant massage on her neck at every diaper change to try to relax those super tense neck muscles as well as tummy time 5 or 6 times a day. All of this in between all of those appointments and now I’m supposed to add in more stuff. When am I supposed to find time to shower or grocery shop or have a second to myself?
Don’t get me wrong, I love Lila with all of my heart and soul, but I am exhausted. There are times that I am so stressed out that I can’t find the object I am holding on to. There are plenty of people who want to offer their opinions of how I should handle things, but very few who actually want to step up and help.
I feel lonely and isolated on these dark days. I feel sad because people don’t get it. They still like to talk about how Lila will get married and have kids, and, in all honesty, I’m not sure if I will ever be able to teach her how to use a fork or spoon. Not that I doubt Lila’s potential, I just know the realities of the challenges kids like Lila face.
This journey is hard. It’s the hardest thing I have ever done. Hell, some days it makes hard look easy. Some days I have to break down and cry in my care after therapy, but tomorrow I will jump back on that horse and rearrange my schedule to fit in the extra exercises that Lila needs. Tomorrow, I will try to remind myself that even if I feel like I’m not the greatest mother, I am doing the best that I can and I have gotten her this far. It is enough. It is more than enough.
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