I don’t want my life back!!

I don’t want my life back.

“That’s great news, you’ll finally be able to have your life back!”

“That’s great, you can have a life now at long last”

Just a sample of what people can say when they hear that your young adult with special needs is off to residential college. Not maliciously of course. I don’t blame them, they’re on the outside. They don’t know, they just assume.

Just so that you know.

My life was never taken away from me.

I’ve always had a life.

I understand that people from the “outside” can’t get their head around that, but I can tell you with utter clarity that it’s been a PRIVILEGE, yes, a PRIVILEGE, to care for my daughter with special needs for the past 19 years.
I am the person I am mostly thanks to this amazing human being.

And I can tell you with the utmost sincerity, and guilt, that there’s been moments in the past few days since the “great news”, that I wish our advocate, Wendy O’Carroll, hadn’t done such an outstanding job in fighting for and getting her the placement of our choice. I wish I hadn’t worked so hard the past 19 years for her to be able to leave our home just like any other 19-year old. She wants to live as independently as possible. She wants to live her life, she wants to see the world. What have I done!

It feels like my heart is being torn away from my chest, I’m literally gasping for air. I thought I’d prepared myself for that moment but I clearly did a lousy job of it!

Every time my mind wanders to September 3rd 2018, I find myself sobbing inconsolably. 

My brain is under siege from every possible angle while my heart is crushed.

It IS great news, whatever way you look at it. She is going to do what she loves: singing, dancing, drama. All day long. She’ll come back every weekend. Until SHE prefers to come back every month. And then every holiday… Most young people with a learning disability who are lucky enough to experience residential college never want to come back to live with their parents again, and are keen to live in supported living accommodation and get a job. A most natural outcome!

I guess that’s why I feel so distraught. It seems so final to me.

She’s been my life, she’s been the life I never knew I needed. Has it been a challenge? I dare you to find a mainstream parent who can say raising a child hasn’t been a challenge. And every parent will tell you they’ve come out the other end a better person. Even more so when that child has a difference.

Kathleen has taught me so much over the years, much more than I’ve ever been able to teach her.

She’s given so much, much more than was ever given to her.

She is the epitome of CARPE DIEM. Something we could all learn from.

She’s colour-blind and colourful. And kind. She can never get enough hugs and she certainly has a never-ending stock of her own which she distributes magnanimously!

But she thinks everybody is wonderful. Not everybody is wonderful. Who will protect her? Who will look out for her?

Truth is, I know deep down, ultimately, SHE will be fine. More than fine. There will be fantastic and long-lasting ripple effects to anyone who will rub elbows with this extraordinary young woman.

Truth is, I know I will be fine too. Eventually. I just have to learn to breathe again, without her around all the time.

Good luck, Kathleen. And thank you for everything… I LOVE YOU.

Updates:

September 7th, 2018

So, I’m sorry if i’m going to disappoint you all but it wouldn’t be fair if I only shared the good news…

We dropped Kathleen off at her college yesterday afternoon and left her. She was not very happy. Mixed emotions. She can’t wait to be independent but also not wanting to be away from her family. She had lunch there, it was a family BBQ. Then she went to her apartment and realised, oops, I’m all alone… Somebody came in to help her with her dinner. But after that, she called us to pick her up, didn’t want to sleep there. At all. We obliged. In her defence, she does have sleep anxiety and trying hard to get on top of that, also, she didn’t have a computer, the TV was dodgy, and there were no other residents on her floor yet. I know she comes across as very confident, and she is, in many ways, but I mean, to be completely alone, it does take a bit of getting used to, right? she said she promises she will try again on Sunday.

September 10th, 2018

Her last phone call to her dad (always dad first…) last night: “I will do this, I want everybody be proud of me. I don’t want let anybody down. But I miss you…”.

Lumps in our throats the size of Venus, dams in our tear ducts struggling to hold up.

I suppose most parents feel sad and lost at first when their child leaves the nest. Either that or it’s a huge sigh of relief, I suppose!

Not being there and catch them when they trip. Hoping someone else will when they do. Learning to let go. Learning to trust others.

But you can just imagine how magnified those feelings are when that child has a difference…

She did it. She spent her first night away ON HER OWN. 

I did it. I spent my first night knowing my baby was on her own, scared and anxious but determined.

Apparently she fell asleep at around 3am So did I. I could feel her anxiety. (She did press the orange button a few times apparently so she could see and talk to a staff member and be reassured. Thank goodness for that!).

When I left her last night, after an extra tight hug, the tide came in. You know the one. The one of overwhelming love and of total helplessness as to how I could protect her. 

The one I first felt when she was born. 

Except that, as nature would have it, I didn’t know her then.

Except that, as life would have it, I do know who she is now and that tide of love and protection feels even stronger, although I know it couldn’t possibly be.

Right now, it’s just hit me. I feel physically sick. As if I’m missing a limb.

I’ve got all this extra oxygen, and yet I find myself struggling to breathe.

I’ve got all this extra space and peace and quiet, and yet, I just want to hide in a corner and look at her pictures and watch her videos (the ones she takes her herself. Loads of them!).

Her determination is my inspiration.

Her just BEING is my endless supply of endorphins.

Please God, Universe, make sure she’s always ok. Thank you for this journey so far. Forever Grateful… xx

May 22nd, 2020

Well, a lot has happened since the last update. It turns out that residential college was not for Kathleen in the end. She didn’t manage longer than 6 months and her sleep anxiety got the better of her as well as her tummy issues. So she’s been back with her family for over a year now and her sleep anxiety is slowly getting better. We’re still working on her tummy issues. She’s been on a low FODMAP diet for a few months now and it seems to have made a difference, but she stills has flare-ups of whatever it is that bothers her. Once lockdown and isolation are over, we’ll investigate further.

In the meantime, this past year has been one the busiest for her:

We registered for the first quarter of the Thames Path challenge as soon as she dropped out of college in April 2019, and we trained for 4 months walking in the woods and guess what, she smashed it and got her medal: 9 long hours of non-stop walking for 28.5km!

She was also featured in the Elle UK magazine as one of 50 international game changers, modelled for Tommy Hilfiger, modelled for River Island, was featured on BBC South, took part in the London Fashion Week, gave talks to midwives about her life with Down syndrome, and I could carry on but I would bore you.

The truth is, she is where she needs to be in this moment in time: with her family. I’m here to support her in whatever endeavour she chooses, which seems to be modelling.

In between modelling jobs and auditions, she attends a programme where she has a 1:1 support 5 days a week and she goes bowling, volunteers in a charity shop, and goes to exercise classes like yoga and Zumba.

She’s happy, and that’s all that matters to me (and yes, I’m glad she’s back…)

(If you are interested in Kathleen’s progress, you can follow her on Instagram @kathleenhumberstone or Twitter @KathleenHumber4 or Facebook Kathleen Humberstone)

5 thoughts on “I don’t want my life back!!

  1. Oh my gosh this has bought tears to my eyes …. I understand what you are feeling and this is a wonderful opportunity for Kathleen x just remember they will always be our babies x big hugs and kisses to you all x

    Like

  2. I am facing the imminent departure of my 18 year old daughter, off to study musical theatre, her greatest passion, in just under 2 weeks. She will travel to a college far far far away and we will see her for thanksgiving and Christmas – she already has plans for her spring break with the friends she has already made being one of the most sociable people on the planet!
    Your blog is a hot water bottle on my aching body. Every part of me has been completely unprepared for how this would affect me.
    Your daughter sounds wonderful and I have no doubt that whilst she may eventually build a life of her own outside of the family home, her family will be her anchor and her storehouse of love – she will come back to it often – so take comfort in that. I’m jealous of the weekends you will have together and the memories you will still get to make. Yes they may thin out, but your heart will be adjusting to the new normal by then. So hopefully those odd weekends won’t feel quite so acutely lost?
    I hope mine does – for now, I can’t imagine any kind of ‘normal’ without my oldest child in the centre of it (theatre kids are always centre stage however much we try to remind them there are 4 other people in the room!😏) And I know my daughter – she’s an ‘in the moment’ person. She might miss us from time to time, but I know she’ll be making life happen elsewhere and taking that off with her at the end of 4 years to a city she can do auditions in. That won’t be here. So I too can relate to this seeming so final. My heart is breaking and I wasnt prepared for this grief I feel. It just feels good to tell someone.
    So thank you.

    Like

  3. I am so happy for you as parents to make a decision for your loved ones to live a indepent life.I am a parent who has a son with down who is 49 and never been able to let go and look into something for him, I’ve been very selfish as he has been my life, I had two sons one who died five years ago who had a brain injury for 10years and need to hold onto that love that is given from my son Mark. How selfish can I be to hold him back to have a future. Lots of happiness to you all with a very happy future. Thank you for sharing this.xxx

    Liked by 1 person

  4. Our 21 year old Son Charlie passed away unexpectedly in February this year, he was autistic and had cerable palsy, people have said, not maliciously but have said our lives will be easier now, his 16 year old sister Hope has Down Syndrome, but our family was perfect, they taught us how to live, love and enjoy every success no matter how big or small, we cuddled everyday, we told each other I love you to the moon and back, everyday, we tackled each obstacle together and nothing held us back. No Life is not easier for us, we miss him every minute of everyday, but we encourage our Daughter to live her life to the full and that we will be with her every step of the way.

    Like

  5. I felt it was best for my daughter to live somewhere with help as what would happen when I became unable to
    care for her she may have gone somewhere that was completely unsuitable she needs a lot of help.Also she does deserve to have a life independent of me athough with help.Im contactable if need be .

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s