I have written this post in my head a dozen times but always stopped short of typing it up. Why? I don’t like being negative. But, I want to be real so here goes.
What is life like, taking care of a child with Tay Sachs? I suppose all of us affected by this disease would answer somewhat differently, somewhat the same. Here’s my response. It is HARD. It is stressful, exhausting, monotonous, heartbreaking and overwhelming. We have good days and bad. Carmen has good days and bad.
It is not so much that Carmen’s care is so hard that we cannot do it. We can take care of Carmen. And I think we do a really good job! But it is constant. If I take a shower after Dave has left for work, I set her up in the bathroom and keep one eye on her to make sure she is breathing and not choking. We pretty much stay on the main floor during the day because that is where we set up Carmen for the day. During the week, I stay at home almost all of the time. My days consist of various medicines and therapies and nurse visits.
For someone who used to go out every single day, this has been a hard adjustment. But, getting Carmen out is not an easy task. To go anywhere, whether that is to the park or a neighborhood walk or to the mall, Carmen needs oxygen tanks, suction machine, feeding pump and bag (if it is time for a feeding), extra clothes, burp clothes, bibs, Chux pads (Carmen’s diarrhea does not wait for an opportune time!), Diastat in case she has a big seizure, and her pediatric Kid Kart stroller. As Carmen gets heavier, carrying her around is more difficult too. She is 33 lbs. but has no muscle tone so that feels more like 50 lbs!
In addition to the daily care, we live with the reality that Carmen is dying. She has given us many scares in the past few months. When you wake up every morning and wonder if today is the day, you start living in a state of constant stress. Perhaps Carmen will remain stable for a long while and this intense stress will ease. We also live with extreme emotions. Part of us wants Carmen to live and live. The thought of Carmen dying is agonizing. But the other part of us hates what this disease has done to her. And Heaven will be so wonderful for her! So, we try to make every decision based on what is most comfortable for Carmen and not worry about how long she will live.
I will be completely honest and say that I have days where I do NOT want to be doing this anymore. I suppose I wouldn’t be human if I didn’t have those days. I know those feelings are selfish. I would love to have my normal life back. But, I have someone who needs me very, very much. Actually two little someones! (OK, three, counting Dave!) I pray every morning for the strength to not only get through the day but to get through it well.
For the past few months, we have dealt with one issue after another. Every couple of months we get Carmen’s seizures under control and then they start up again. By “under control” I mean stopping the grand mal seizures. We have stopped worrying about every other kind because they keep coming despite three different seizure medications. Every other week, Carmen gets a fever and goes back on an antibiotic. She has had chronic diarrhea for 6 weeks now. She is on constant oxygen. If it is not one thing, it is another.
I get a lot of, “I could never do what you are doing.” Well, sure you could. We wouldn’t have said we could have done this either. But you do what you have to do. And you try your best to do it with a good attitude. We are not saints. We are simply parents doing the best we can.
Perhaps the hardest part for me is the reality for Lauren. We’ve started trying to do Family Nights and other fun indoor activities so that Lauren has some fun in her life. I am SO glad she has school, a place to go just for her. I often wonder how Carmen’s illness will affect Lauren in the long run. I hope and pray she develops a compassionate character and not that she is bitter and angry that we spent so much time caring for Carmen.
Last night we decided that something has to change. We have started working on a plan. Two nights per week one of Carmen’s night nurses will be coming from 10:30pm-10:30am so that I can get out of the house in the morning. And, Dave is hoping to spend two afternoons per month working from home so that I can take Lauren out. And, a few friends volunteered to watch Carmen during lunchtime so I can take Lauren out to lunch occasionally. We are super blessed to have friends who are bringing Lauren home from school. This is HUGE. Thank you. Two mornings per week a home health aide comes and sits with Carmen so I can run around and do laundry or clean up or take a shower.
Whew. I just reread all of this and I don’t feel so good about it. But, I am going to post it anyway. I read somewhere that along with the sorrowful moments of this disease comes a surprising amount of joyful moments. (I think Eric, Rachaeli’s dad, said this!) I try to focus more on the joyful moments, particularly in my journal. Well, you are getting a taste of the sorrowful moments today!