Limping to the next milestone

Source: SXC

Source: SXC

In a few days it will be August, Aidan’s birthday month. As I mentioned when it was Mother’s Day, all major occasions are anxiety provoking, but none more so than Aidan’s birthday.

I remember for his second birthday I went all out, planning his party three months in advance, making sure every detail was absolutely perfect. Yet with each passing year my fortitude has waned. Each year is one step closer to the day I will lose my boy and I find myself willing him just to make it to the next milestone, like a mother cheering her son from the sidelines through the last metres of a marathon. Except now, my throat is hoarse from all the cheering and I can see that he is stumbling at the finish line.

It was this week five years ago that I learnt that Aidan’s life would be a battle. I was 24 weeks pregnant, lying alone in a hospital birthing suite, the cries of women giving birth all around me, when the doctor informed me that there was only a slim chance my baby would survive as there was limited to blood flow to his tiny little body. Anthony and I knew then, even with the doctors best efforts, Aidan would be coming early and would be burdened with all the complications of prematurity. His future was uncertain. We decided to name him before he was born, choosing Aidan because it meant little fiery one, hoping the fire within would give him strength to keep fighting. He has certainly lived up to his name.

As the weeks draw closer to his fifth birthday, I feel myself slowly getting sucked into the black hole of depression. Having suffered from depression for almost 20 years now, I recognise the signs and I fight it now harder than ever. I battle with myself, telling the inner me to be grateful that I have him and pushing myself to get exciting about his birthday but the black hole just keeps reaching up and pulling me down. Now every time I look at him, all I can hear are the words, “he’s going to die soon” and I’m drowning in them. I’m desperately trying to remember all his little features – the way his eyelids flutter when he’s asleep, the sound of his voice calling out my name, the little pout he gets when he doesn’t want to do what he’s told.

“It’s just a day,” I try and tell myself over and over again as I lay awake at night, terrified. Asleep in his room, there is a little boy so excited about his birthday, a little boy who has been practicing blowing out his candles, and all I can think about is myself. I feel immensely guilty and entirely self-indulgent for feeling the way I do. Yet I also know enough to be kind to myself, to know that depression is the bad guy, not me, and that, as with each year, the next 3 weeks will be a major struggle. Perhaps this year, I will break free from my anxiety or maybe I will just learn to accept that this is part of my grieving process – part and parcel of life with a terminally ill child.


2 thoughts on “Limping to the next milestone

  1. You are his mum and he is your son and it would be very hard to be in your situation, even thou all my kids were born early 2 this day i worry about them even though i know they are ok i am forever worrying, however you have much more worries on your mind and 2 a small degree i totally understand, i still have clear in my mind especially with my youngest the doctors saying she may not make it. Being i had lost 2 previously this isnt what i wanted to hear thankfully she was a fighter and so is your boy look at him near 5 what an achievement and he wouldnt have gotten this far is he had not had such supportive and loving parents and extended family and friends.

    You are only feeling what every other mother would be feeling in your situation wishing they didnt have to go through all of this wishing there was a way to fix it and wondering all sorts of other thoughts u dont even want to think about and then feeling bad because you even think them.

    Have the best birthday party you can for him even if it on a low budget, because it is the memories that count the most not how much was spent.

    And please remember you have done a wonderful with your son he is turning 5 what a milestone and your should be so proud of yourself and of him

  2. Aidan has been practicing blowing out his candles? How awesome! Take joy in these moments just as much as you will on the 22nd when he gets to blow them out “for real”. My regret as I look back on Emily’s life is that I have such a poor memory and don’t remember as much as I would like to about the details of Emily’s life and our time together. I wish we would have taken even more videos and pictures; more than that, I wish I would have kept a better journal of my experiences with her.

    I’ve not had depression, so I cannot understand how you are feeling. From my perspective, you are handling life pretty darn well. Be with Aidan and Anthony. Live in each moment. That is all you can do; and that is enough. That is what Aidan needs.

    Aidan’s enthusiasm for life inspires me. Thank you so much for sharing your family’s experiences with us. Hugs your way from our family, and God bless.

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