Seven Facts of a Special Needs Mum

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

19 thoughts on “Seven Facts of a Special Needs Mum”

  1. I totally just cried reading this. I’m sorry you’ve gone through so much struggle and strife with being a SN mom! I think everyone needs to read this, because everyone needs to hear and know what SN moms go through. If people were more educated, they wouldn’t rudely stare. Sometimes, I think people don’t know what else to do (even when my non-SN toddler is throwing a tantrum in the middle of Target), so they stare, because briskly walking away from a disturbance is still considered rude? ugh, I feel your pain through your writing though. I love that you and your husband and found a “new” you together, and have become stronger. ❤

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    1. Aww sorry I made you cry and thank you for such lovely, supportive words it is tough but we have come such a long way in seven years! I would love for everyone to read and have a little insight into our world ❤

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  2. RESPECT. HUGS. LOVE. PRAYERS. You are a strong mommy and a great fighter. So much to learn from you. Take Care. Be Happy!!

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  3. My heart was aching reading this. It’s inspiring to read things so raw, authentic and show someones true vulnerability. I am sorry you have gone through so much. Thank you for sharing so honestly as I think this is something everyone should read to be more educated as well as this being a true testament that you never know what people are dealing with on a daily basis so we need to be kind and understanding.
    Jenny
    http://www.teaganssandbox.com

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  4. This is such a beautiful and difficult read. I know from my own family situation that special needs parenting can be lonely and it can be hard for other people to understand. Sending so much strength and love your way.

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  5. Lots of love and hugs from me. I will pray for you so that you will get a bright future. I am feeling bad that you had to face so much in life. Lots of love and prayers from my side.

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  6. From one special needs mum to another, I feel your pain. In the last five years I haven’t answered the question “how are you” honestly, I’ve neglected my own health to look after that of my children, I tune out when people say “I don’t know how you do it.” Hugs to you xx

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  7. This is such a powerful post! I am so glad that through your journey you have been able to grow and share your deepest thoughts with all of us. I find myself trying so hard not to say “I don’t know how you do it.” It’s supposed to come out as a compliment, but I know it doesn’t actually work that way. It is incredibly infuriating. I’ve been there. In my own life I just want to scream “I do it because I have to! Not doing it is not an option!” and I know you must feel that way, as well. I’m wishing love and positive thoughts to you and yours!

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  8. This is deep! And you know what- you’re right! Some of us do take parenting for granted, not knowing what others actually deal with and how difficult other parents may have it. I couldn’t imagine going through the emotions you have gone through.

    I remember complaining about finances way back when, but not considering that I had just given birth to an almost, perfect child. I overlooked the blessing because I was too concerned about what I didn’t have. When I started working in childcare and dealing with children who had certain learning disabilities was really an eye opener for me and it changed the way I parent. It changed the complaints into hugs, the headaches into kisses, and the frustration into laughter. We never know how good we may actually have it.

    I wish you, your BEST! I can’t generalize it into THE BEST, because it’s different for all of us. I wish you healing and prosperity.

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  9. You are a strong and amazing mama… I have a child with special needs so I absolutely relate to you …. we have been blessed with these amazing kids and the path is not easy but having each other to count on makes all the difference …

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  10. I wish I could write something inspiriting or motivational for you but I am lost for the right words. Life is never as we plan it and at every super tough corner we pretend everything okay and we’re strong enough to deal with it when actually we just want a hug. I wish I could give you one right now. You are not alone, I can promise you that, even when you feel it there is always someone there for you, just reach out and someone also surviving will hear your call

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