Entry Thirty Five- A Million Tiny Losses

I can’t take credit for the title. Someone in one of the online support groups that I peruse used “a million tiny losses” to describe what grief feels like to a parent of a special needs child. I thought that it was a perfect descriptor.

Grief is the “response to loss”(wikipedia)…”a deep and poignant distress” (merriam-webster). After I learned of Oscar’s diagnosis I would definitely describe what I felt as a deep distress. At that time, I didn’t know that I was grieving. Nobody had died. I had my son. I thought it was extreme anxiety so when I went to see my family doctor I was prepared to finally admit to needing help. On my way there I felt a sense of relief because I knew that she would prescribe me medication and it would take my pain away… it would relieve me from this unbelievable distress.

That is when I heard for the first time that I was “grieving” and that I needed to go through the process of feeling my feelings. I was perhaps even more distressed on the way home because I had finally worked up the courage to ask for help. I had been anticipating the feeling of relief that medication would give me and that been denied. The feeling was awful and I just wanted it to go away.

My family doctor didn’t leave me high and dry, we scheduled some counseling sessions together and later I was offered an opportunity to talk with a social worker. I worked on myself but it wasn’t enough, so when I went back to my doctor a few months later to ask for help again I was nervous because I didn’t want to come across as “drug seeking” (even though I was). She knew that I had been putting in the work and that I was still struggling so at that point she did give me a prescription for anxiety medication.

Oscar’s diagnosis was a big loss. Along with it I lost the luxury of feeling that my kids were safe. I lost the luxury of predictability. I lost the sibling relationship that I had dreamed Olivia would have with her little brother. I couldn’t help but fast forward and think would Oscar ever be able to take care of himself? What will happen to him when we are gone? So many big losses.

But I can relate to the description of a “million tiny losses” because that is where I am at today. I have grieved and coped with the big loss and now I deal with the “tiny losses” daily and sometimes several times a day.

My son is 26 months and doesn’t have a word. Today he said “ma” and I replied “mama” and he looked at me and smiled. I waited… He was looking at me and I was staring at him wondering if today was going to be the day that he would say “mama”. He didn’t. Truly I wasn’t expecting him to, but for a split second I had had hope. After I had eagerly waited, a teeny tiny piece of my heart hurt. One tiny loss.

When a friendly stranger asks, “How old is your son? 11months?” I totally understand that developmentally he is probably about 11months old… but it still hurts. Another tiny loss. “Oh 2 years old is such a fun age… I bet you are busy chasing after him.”… Nope! Another loss.

“When will my brother be able to play with me?” “I want my brother to go to the same daycare that I went to” (an outdoor daycare where the kids hike and ski… totally not appropriate for Oscar) “At what age won’t my brother need his hearing aids?” “Is that the alarm for Oscar’s medications?” So many innocent questions from my 5 year old. I wish he could play with you! I had had him on the waitlist at that daycare and then had to pull him because it wasn’t appropriate but I wish that he had been able to go there. He will probably always need hearing aids… More tiny losses.

These tiny little losses don’t make me cry anymore. Even if I don’t react to them I would be lying if I didn’t admit to feeling a pang in my heart when they happen.

Photo Taken: December 2020

3 thoughts on “Entry Thirty Five- A Million Tiny Losses

  1. I can relate a 100%%%%
    Sooo sooo true!
    If I may ask, which group is it that you heard the term a million tiny losses.?

    Every single time a person says of just wait till she’s this old and does this…and I feel that same exact shooting pain in my heart that I’m not sure if that will happen. Or our life and our journey is different.

    Thanks for sharing your grief.

    Like

  2. My older daughter is also two with 1p36 and I can completely relate to this! Shortly after she was diagnosed I read something from another special needs mom about the grieving process and how it never ends but gets better. And it helped me so much to just feel like I had permission to grieve the daughter and the life I thought I’d have. But the million tiny losses continues and probably always will.

    Like

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