Why you haven’t heard from me…

Posted on May 10, 2013 | 10 comments

Sometimes life with May is no picnic. This week has been a crashing disaster. I’ve been reticent to write about just how awful it has been because I don’t want the other special needs parents who read my blog to think life is a misery. And I don’t want to rehash it in a flood of phone calls from concerned family and friends (who I love, so thank you anyway).

First of all, we have no clue what is wrong with May. Which is what everyone wants to know. We’d like some insight ourselves. Because if she could tell us, we could fix it – or help or something.

That’s the trouble with May. We never know. When she goes into these marathon sessions of pain and fevers and fits, I don’t even know for certain she will pull out again. Instead, I am literally inches from her while she screams every waking moment – now going on five days – and all the while the dishes pile up, cartons of Chinese food litter the kitchen and my schoolbooks sit in front of me never marked. In between worrying over how I will ever complete anything again because May refuses to let me put her down, I wonder if this day is going to be the day that she never comes back to us.

I miss my May-May so much.

Sometimes, she falls asleep and that is bliss. Because while she is asleep, she isn’t in pain. When she is awake we have to contain her heavy frame while she thrusts and heaves under the agony of whatever is punishing her. She chokes and sputters and finally vomits out the one thing that does help her, some liquid pain relief. And then she screams some more, all the while kicking out and thrashing her body. She has only consumed half her seizure medicine, so her seizures are more frequent as well. My body is bruised, my back is in agony and my arms are strained with lines of burst blood vessels.

So, I’m exhausted and terrified. Not a great combination. When my lovely 15-year old bottom set girls asked me if May was better yesterday morning, I said, “No.” And, then one quietly asked me what an adult never would: “Is she getting worse?” And, I found myself choking back the words, “Yes.” I shuffled out of my classroom before I broke down in front of them.

Is she getting worse? We won’t know until she gets better. If it is her hips – dislocated 50% let’s not forget – causing her pain, then hopefully her surgery in a few weeks will fix that. But, we aren’t certain that’s it. It could be that. It could be a virus. Or, a tummy bug. Or, any number of things.

It is agony for us as well.

And that, my friends and family, is why you haven’t heard from me in awhile.

PHOTO: This was taken accidentally on a trip to a petting farm last weekend. I don’t go out of my way to take photographs of my child in pain, but as long as I had it, I thought it might go some way to explain how May has felt this week. (Don’t reuse it. Copyright: Stacie Lewis, 2013)

10 Comments

  1. I don’t think words can really express how heartbreaking it is to know you’re all going through this terrible time, especially poor May. I only hope her pain stops soon and that you can enjoy her smiles and giggles again. Much love.

  2. My lovely sister as we approach Mother’s Day here in the “states” as you call it. Know that I think the day is about Mother’s like you. Mother’s that try it all to please their kids. Mother’s that try singing, rocking, cuddling to sooth their upset toddlers. Mother’s like you that are trying their best and more to help their child. I wish I was there to give you and Gareth a break, take May for a stroll in the park and give you the biggest hug!. I will be thinking about you and my neice and hoping that the love we are sending her, will help her feel happy again. Because those of us that have heard it, think May has the sweetest sound when she giggles with happiness. All our love Stacie! XOXOXOX-OOOO!!!!

  3. I’m so sorry that May, and you, are going through this painful, frightening time. I hope the pain stops soon, and that the pain and seizure medication can stay down to help make that happen. Better still, I hope someone can help you and May get to the bottom of it all, and fast. Sending you all love…

  4. That is so hard. Our cp baby has a whine that she hits when unwell that can go in for days. It stresses everyone in the house and everything falls away. You are so conflicted as the Guantanamo torture of no space, arms and sleep and your poor small one is clearly in pain. I often wonder if people notice that you are ‘not present’. I find the experience part of that weird twilight half light,half life that carers live. I sincerely hope that May gets better; the op goes well and you get a bit of recovery time. Thank you for your blog – I value it!

    • May’s teeth were coming through that was why

  5. My heart goes out to you and May. My son was like that in his early years. Even a bath caused him great distress and pain. It was such a hard two years, I hardly like to think about it. I hope and pray for you both that she gets better soon. There is nothing worse than seeing your child in pain.

  6. Big hugs to you…my daughter is a similar age to May and has very severe CP. I know too well these weeks of crying and pain. The last time was in Feb and was because of a UTI, her spasms and increased tone caused her terrible reflux on top of the existing issues. She started on Omeprazole for that which was very effective and on Baclofen which immediately broke the cycle of the spasms. You have my empathy, it’s just heart breaking seeing your daughter in such distress xo

  7. So sorry. I hope the fixing of the hip will help. Do the doctors have any ideas? I assume they took blood to see if an infection is brewing. Let us know.

  8. Stacie, Hang in there and I promise things will get better. Be brave like we know you can. I do not know why life has to be such a difficult challenge, but you WILL meet the challenge. Love & hugs to all. Thanks again for the magnificent floral arrangement. Happy Mother’s Day to you too. You are an incredible Mother! Miss you very much!All my love, Ellen (Nana Banana)

  9. That really really sucks. I’m so sorry.

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