The Things I’ll never tell you

As a special needs parent, there are many things I will never say.

I believe most parents like me speak in “code.” I’m pretty sure I’m not alone with this.

I will never tell you that today I cried. I will tell you, “It was a tough day today.”

I will never tell you that today I wished I had somewhere else to be. I will ask you to swing by the house, only if you are passing.

I will never tell you that today I got a phone call to let me know that my son Ethan has showed a decline in his mobility and cognitive abilities. I will tell you, “He is holding his own.”

I will never tell you Ethan has a test coming up, which has me awake most nights. I’m afraid of the newest decline. I will tell you Ethan has a hospital appointment soon. I may even ask if you could watch my other two boys so my husband D and I can both attend.

I will never tell you that the school rang with another behavior issue, which made me feel like a sh***y mother. I will tell you I’m a little cranky today, so bear with me.

I will never tell you the real reason I don’t sleep at night. I will tell you I have a slight case of insomnia, or D was snoring so badly last night, or the baby was up…

I will never tell you I don’t want to hear about how great your child is and how much they are thriving. I will smile and cheer along. I do care, but some days it’s harder to look past everything my child can’t do and won’t ever do.

I will never tell you that today I just needed a friend, a helping hand. I will tell you, “Call up and we’ll have a chat!”

Why do we speak in code? For me, it’s easier. It’s hard to be totally honest with your friends and family. It’s even harder to be honest with those who actually want to help and give you some form of support.

The truth is, parents like me don’t want to be a burden. We don’t want to have to ask for help, and we sure as hell don’t want to be pitied.

Well, what do we want?

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For you to look. When you visit, just look. You’ll see exactly want we need in that moment during that visit.

A simple little thing like a cup of coffee can go a long way.

Get to know our special little ones so that when you do offer to babysit, we are happy to take you up on the offer. Visit us. Bear with us as we try to converse. Please never feel you are in the way.

And do talk about your worries, fears, relationships and wonderful children. This makes me feel just like you —a mom, a friend, a sister, a partner.

10 comments

  1. It must be so difficult to feel like you can’t be honest and open about your life,even with those closest to you. I hope your friends and family read this so they have more of an idea of the best way to be there for you. This post has certainly given me a better understanding of how to be there for those people in a similar situation xx

  2. It must be so hard; I am struggling just now day to day, so I can’t imagine how much more difficult it must be for families going through what yours does.

  3. Well Get, I will tell you how ,I feel if we are being totally honest. We are away at the moment getting a little respite ourselves as the only grandparents who actually give a shit and yet I am not only missing Rupert already, I can’t sleep for thinking of how our daughter is managing without us.

  4. This was so powerful. I’m so sorry to hear you are going through a tough time. I am sending so many hugs right now and hope things get easier and that everyone in your close network reads this and takes from it. You are such an amazing Mum, don’t ever forget that. And your children are wonderful and you really shouldn’t try and compare them to others or any milestones. They are unique and wonderful. <3 xxx

  5. Such a brave post, and brutally honest as always. Please do speak out though, and let your nearest and dearest know how you feel. You’re doing a brilliant job x

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