I wrote this a couple of years back and thought it was worth a re-share. There are always things doing the rounds on Facebook. At that time it was the “seven facts about me” thing
I wrote it on my personal profile and deleted at least 15 facts, because people want fun and frivolity not messy truth and hurt.
So here is my truth, my painful messy truth. My “Seven Facts of a Special Needs Mum”
1) In the last seven years I have not once answered the question “how are you?” honestly!
Because people aren’t asking because they want to know the answer, they are asking to be polite. They don’t want the truth, the truth is messy and makes people feel uncomfortable. “I’m fine thank you” said with a smile is what they want to hear, it makes them feel good about themselves for caring enough to ask and they can move on safe in the knowledge you are “fine”
2) My marriage took a huge battering when we took on the role of SN parents!
Months in hospital, anger, uncertainty, fear, more anger, blame. We had only been married a VERY short time when we became parents, three weeks in fact, we had no time for a honeymoon, nor a honeymoon period. The first six months of our married life were spent in hospital accommodation and by hospital beds in PICU, HDU and Neurology wards. We lost jobs, our home, friends and family. Most of all though we lost us! Thankfully we eventually found a new us, a stronger us, a better us. We learnt to deal with the anger, the hurt, the fear together. It built us rather than breaking us and I am thankful for that daily.
3) Every single time I leave my house I have to take a deep breath and steel myself for what is to come.
The meltdowns, the respiratory arrests. I have to plan for every eventuality, and sometimes I find it hard. Really, really hard! This is made worse by the looks, the comments, the stares and the rudeness from the general public, not all of them but a surprising amount of them. For months I had panic attacks every time I thought of going out, worried I wouldn’t cope, worried I’d join in with the meltdowns
4) Whenever someone says “I don’t know how you do it!” I want to scream, really, really loud, particularly when it is followed with “……..I couldn’t!” And especially when accompanied with a *head tilt*
I have discovered that there are many comments that induce anger, upset and confussion within me “You’re so brave/strong….*insert platitude of choice*” is a good one, along with “You must be very special!”. But “I don’t know how you do it!” Seriously sends me over the edge, and I’m surprised it is said so often. I find it insulting, patronising, thoughtless and downright rude!
5) I’m jealous of you!
Yep, every single one of you. I am jealous of pretty much everything you do and I’m angry that you take those things for granted. I’m not proud of myself for either of those feelings but I am proud of myself for finally, after seven years, being strong enough to admit it and be strong enough to acknowledge that it’s ok for me to feel that way. It’s ok to mourn all of the things I’ve lost and to let myself feel the anger and jealousy that comes with those feelings. They stayed bottled up for so long and they were choking me, drowning me!
6) One month after writing my birth plan for my darling first baby I was writing an End of Life Care Plan for that very same baby!
And if that wasn’t hard enough I have to review it regularly, go over it, read the words within it. I have to carry it with me every where I go. It’s always there.
In my bag.
In my head.
In my heart.
7) I’m surviving!
This past seven years I’ve been to hell and back, I’ve seen things, heard things, dealt with things that I never dreamt I would, things I wouldn’t wish on my worst enemy. Every day I wake thinking “please not today” and every night I thank the universe that I had another day. I’ve lost friends that I had thought would be friends forever, and I miss them every day. But I’ve also gained friends that I now know will be my friends forever
I have lost myself, fallen completely apart but you know what? From the pieces I found a new me, one that I am still working on but one that with every passing day I grow to love more because I have found strength I never knew I had, I have found a person I never knew I could be! I found faith, not in God but within myself! I’m doing it, it’s hard but I’m doing it and I’m surviving and that feels good!!
Being a special needs mum can be so lonely, it is a journey with an unknown destination and that is scary! If you are walking this path and feel alone or scared then please reach out to me on any of my social media platforms and I will offer an ear, a shoulder or anything else you need. Please never feel alone xxx