Deliverance

Something good happened to me this morning. I have been bitter about something for years. Well today, that terrible feeling is GONE.

My daughter became sick when she was 10. What really got to me over years of pain and suffering was that she was not receiving the care or help she needed. My daughter was tagged as oppositional and difficult because she couldn’t run or play anymore,  and she was sleeping for most of her days. Only when we moved to Atlantic  Canada was she diagnosed with a variety of disorders – and it isn’t over yet.

Over the years, I have worked in one of Canada’s largest pediatric hospitals. I saw how many children where well cared for, particularly the ones battling cancer. After struggling for years with my daughter’s situation,  I became numb to other children’s illnesses. Not because I got used to seeing them sick but rather because of the fact that they were receiving treatment while my daughter was left to suffer. I became so bitter about the whole thing, that I had no feelings for any child but my own. I know, this must sound very selfish of me…

But today, I had an appointment and to make a long story short, I spoke to someone who has  a child battling leukemia. While this woman was standing over me doing her job (dental hygienist), I realized that it didn’t matter that her child is currently receiving cancer treatments while mine is still waiting for appointments to confirm the worst of her many diagnoses. In fact, as mothers of sick children, we are both broken. At one point during our conversation, she told me she would speak as a mother for one minute. Her eyes watered up and I could hear broken words through her mask as she was struggling to hold back her cries – they weren’t just tears. Again, the pain of having once told her daughter she was not sick because that is what she had been told by doctors. I know that pain all too well – and I told her it was OK because that is what parent’s of sick children do before a diagnosis is confirmed. Then she asked me if I could leave my daughter alone now that she is 16. I told her that I do because I have to get on with my life. Every morning, when I get up, my instinct takes me to her room to see if she is still alive. Every morning I am scared to find her void of life because her skin is blue from low blood pressure. The line is fine. I am afraid her heart will stop beating. But then I told her it was OK and that for now, every little moment my daughter is keeping up with the struggles of her illness is a good moment. I do not have a choice. This is what my life is like for now. To that, I saw in her eyes that she knew exactly what I meant. Only then did I understand that we are very much alike and that we must stand together.

The bitterness or resentment is all gone and this is perhaps the best feeling I have had in a very long time. I pray that her little girl battles the monster and that my own child masters her illness just enough to enjoy the light of life.

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7 thoughts on “Deliverance

  1. I cannot begin to fathom how painful it must be to have a child going through a serious long or chronic illness. I am glad you had a chance to talk to this woman and to feel a sense of connection.

    And speaking as someone who was a mysteriously sick kid, I can say for certain that knowing her mom does believe her and is going to advocate for her goes a long, long way for your daughter. My own mother was a nurse and often seemed irritated when I was sick and seemed more like she wanted to be seen as a colleague by the doctors than as the mother of a sick child. So when I was losing weight from undiagnosed lactose intolerance as a child, she believed the pediatrician over me that the pain and GI upset were “all in my head” and later, when I was passing out from hypoglycemic and hypotensive episodes, she as well as the doctors dismissed my contributions to the discussion of diagnosis – that the episodes seemed food related – and instead tried to convince me I had a seizure disorder, that I should take seizure meds with all their bad side effects, and that I would not drive until I did take them. My mother became just another health care provider I had to tangle with. Your daughter may not realize it explicitly, but that you are first and foremost her mom and that your primary concerns will be for her will serve her well. It allows her to continue to trust that someone is looking out for her and that she’s not going through this alone. That trust is crucial and precious.

  2. I am truly sorry that you had to go through that alone as a child. My daughter is grateful for my actions on a daily basis and we are very close.

    We went through hell because of the system. She had been referred to psychiatry because of social anxiety issues and signs of depression. It didn’t take long for them to conclude that she was oppositional and that the reason for her not being able to attend school was because I was too lenient as a parent and lacked any sense of discipline or control over our life as a family. I was even told she needed “violence” to be corrected. I was also told to use “physical” force. Those were the words they used. They even sent her to foster care…. It is a long and cruel story that had a huge impact. See the post entitled “In a desperate moment”… I started the blog because I have many painful issues to deal with. They are tangled up inside of me and I have to get rid of them. I have put my life on hold for her and I will do whatever it takes for this condition to be recognized. A child that tells her mother she can’t “play” or get up in the morning is not exaggerating or oppositional. Children play, run, and laugh. They don’t worry about getting tired.

    For nearly a year now, I am encouraging my daughter to expose her “needs” in public. If she needs to put her feet up or lie down in a waiting room at a doctor’s office, I encourage her to do so in front of everyone. She needs to know that she doesn’t need to hide and feel crazy anymore. And although this may sound funny, it actually works for her. People are now taking her more seriously and she doesn’t feel as bad as she used too. I can’t wait for the day where she will accept to sit in a wheelchair to go shopping without feeling intimidated. She needs to get used to dealing with her physical state and make the most of her daily life rather that remaining confined between the four walls of her bedroom out of shame. She is getting there – slowly but surely and I am very proud of her. She is also much happier than before.

    Thank for your kind words. They mean a lot.

  3. Pingback: Daily prompt: Define flangiprop « Sheep in a basket

  4. I wanted to comment on some posts that really resonated w/me when I read through your blog the other day. As the sick person, I have felt the exact same resentment you mention here and I brought it up in my post. It’s hard to admit it! I wanted nothing to do w/the cancer crowd for sure, who had all that great support and understanding from the whole world. People would have surgery and get flowers and cards and I had just been forgotten. I felt so marginalized by society that I developed a jealousy complex! You do meet these folks with time and realize you have something in common, as you pointed out, and it helps. I still have difficulty with people who don’t fall into the “chronically ill” category and I’ll admit it.

    I also think how you’re teaching your daughter to accept her abilities and disabilities is very wise. One example rang true for me. I have great difficulty with sitting in chairs (causes massive pain in my upper body), but I always sit if it’s appropriate and just suffer, especially if waiting 2 hrs for a doctor. I deeply rub the muscles in my neck and shoulders and rude people ask me what I’m doing. What’s it to them? Why don’t I just stand, which is my preferred position? Who cares! She will have to deal with people’s stares and rude comments, as well, and best to learn how to deal with it in adolescence I presume. It’s an unfortunate situation and I feel for both of you. Appreciate the honesty in your writing…

    Alisa

    • You know Alisa, I was just thinking the other day that there is no reason why my daughter should have to sit in a chair in a waiting room for hours when she can’t and it’s hell for her. Therefore, I am going to take the steps to have her own doctor write a not to the effect that she has a connective tissue disorder and can’t sit and wait for that long. If this is what medical care is all about, it is simply “cruel”. Once, she missed an appointment because she was too weak to sit.. and the staff told me well, she can just lie down in the waiting room. “Are you kidding me?” I replied, “she’s a 16-year-old girl”….

  5. Good idea! They need to be accommodating, just like they do for those in wheelchairs, etc. I threw a fit with an imaging center, as I needed a copy of an MRI report on my rotator cuff injury due to EDS. They stay open quite late, so I could drive myself to the appointment at night (when I can see to drive), but the “records dept.” closes at 5 pm and it’s broad daylight. Why couldn’t they just leave my report at the front desk? Well, I pushed my way through the office and got them to do it so I could pick up my report at night and get started on repairing my shoulder at PT. Of course, I got the evil stares when I showed up for my report, but too bad! My father always told me, “The squeaky wheel gets the grease.” 🙂

    I’ve also “fired” every doctor that keeps me waiting more than 30 mins, but I’m stuck with my corneal specialist and there’s no way around it. I’m going to try to stand more, but it’s so crowded with people and chairs! Do you ever wonder why you can’t just show up 2-3 hrs later since the doc won’t see you for 2-3 hrs? Back to the ridiculous medical systems!

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