My dads been gone almost four years. It hurts no less but the pain gets easier to live with. I remember a time when I couldn’t go a day without crying. It’s different now, there’s no more picking up the phone to ask for a ride, forgetting he’s gone, or constantly adjusting the tense in which I referred to him. I think it that I’ve learned to live without him. Maybe because theres no other choice.
The only thing that has hurt me more than the death of my father is the illness of my daughter. The difference is that with Faith’s illness it seems the pain is consistent and sharp most of the time. I assure you, unless you are a part of my very closest inner circle it’s not something you are aware of. Because its my job to stay positive, and lift my daughters spirit. But at night as I take care of her broken little body I feel as if my heart breaks over and over again.
I also feel like there’s no good way to talk about how hard this is, or how difficult it is just to keep her in a healthy enough state that she can spend her life at home, rather than in a hospital bed. I feel like I should just be thankful that she is here and quiet about the fact that most of the time we are just skimming the surface of the water.
I wonder sometimes if anyone realizes how much I think about what I can do to improve her heath. I wonder if anyone has a clue how often I worry. There are so many decisions to be made, and her disease is so rare, that the thoughts are in my head most of the time.
Faith needs medical intervention a minimum of every three hours. She doesn’t absorb fluid, so she needs bolases of water, she needs sodium, and sugar. She needs tube feeds because she is unable to maintain weight without them. She has a colostomy bag because she can’t go to the bathroom without it. She very often has systematic yeast infections around her tubes and colostomy bag. Even though she has a colostomy bag and all but a few inches of her colon is gone her digestive system still doesn’t work effectively so we have to do irrigation washouts through her apendicosty. The disease she has also makes her very susceptible to enterocolitis which always lands us back in the hospital so we have to do washouts of the lower part of her bowel which isn’t even attached or operational. The most frustrating part of her disease for us is her never ending battle with dehydration. If you’ve ever been dehydrated you know how bad it makes you feel and she becomes dehydrated often and suffers from horrible headaches and aching legs. Most days her belly hurts for some portion of the day, we used to use pain medicines but have found they seem to add to the problems. All of these issues mean a hospital visit for any usual cold or virus, so keeping her healthy is key.
Somedays I don’t know how we do it. I think we try hard not to think about doing it we just do it. Most people I know don’t have a bank account with money saved for when you have to quit your job and care for your sick daughter. You wouldn’t expect that a serious illness could cause you to go bankrupt. You would think you could travel wherever you needed to get the treatment you needed and your insurance would pay for everything. You would think that all medial supplies would be covered by our health care system…you would think when you have so much to worry about keeping your child healthy this would be the last thing you should have to think about. Pretty unfortunate.
Then, I worry about how this is effecting her. We lost a good friend recently. Her family took her to hospice the day she died. a few weeks later Faith asked me to turn the radio down in the car. Will objected, but she said she needed to talk to us about something important.
Mom I need you to make me a promise….
Faith, I don’t make promises unless I know I can keep them….
Well this one you can keep, I want to die at home. So when it’s my time, promise me you won’t let me die in the hospital…
You’re not going anywhere Faith, you’re staying here with us…
I’m serious mom, I worry about this, I can’t die in the hospital, so if something goes wrong with my disease, promise me you will get me home and let me die with my family in my own house. Say it, tell me you pinkie promise…
I went on and on about how she’s going to be okay, and she continued to get more, and more annoyed. Finally I agreed to promise her, she then asked if it was Taco Tuesday, because she really didn’t feel like Tacos, as if we had just been talking about the dinner menu for the week. When we got out of the car Will told me he wished she could just be better so she could talk about normal girls stuff like shoes and shopping.
I walked around for the next few days in a haze, so hard to concentrate on anything when your daughter is worried about her wishes for the end of her life being grated. Just when I began to put it out of my mind we had an exceptionally bad night. She was feeling pretty sick and every time I went to do her treatments she was awake and in pain. She asked me to just lay next to her and talk. As we laid there she asked me if she gets sick of all this she could decide she wants to be done. I said, all of this is what keeps you healthy and out of the hospital…her answer is the reason I feel like I can’t breathe. Mom, when I go with Jesus I will be better without all this stuff…
This is why I live my life constantly trying to help her find joy in her days, I want the pain she feels to be worth it for the life she gets to live. I feel like we are walking on a tightrope everyday, just trying to get to the other side. Along the way there are so many things trying to knock us off, there are so many things you have to worry about. You would think it would get easier. But it does not.
So how we keep going? At the beginning of this journey someone sent me a song by Martina McBride, it’s a song she wrote about breast cancer. Faith doesn’t have cancer but this person knows music so I listened.
I’ve never played the song for Faith but I sing it to her every night after she falls asleep. Sometimes I’m singing though tears, and sometimes I’m half asleep. Sometimes I think its more of a prayer and sometimes I think its just a reminder of a promise I made to Faith the day I learned of her illness. Somedays she may feel like giving up, but I never will, if she lets go, I will hold on and love her through it.
“When you’re weak, I’ll be strong
When you let go, I’ll hold on
When you need to cry, I swear that
I’ll be there to dry your eyes.
When you feel lost and scared to death,
Like you can’t take one more step
Just take my hand and together we can do it
I’m gonna love you through it.” ~Martina McBride