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A dads perspective on special needs Paul and Luke

My story…… so far

My name is Paul and I’m Luke’s stepfather soon to be his adopted father. I met Lowis, Luke’s mum and instantly fell in love with her and with Luke. I’ve learnt so much over the years from them both dealing with the happy and the sad times. Each day with them is never the same.

Luke has Schizencephaly and is 15 years old. He is such a intelligent and loving young man with a lot to give and say.
Becoming a part of their small family has had its challenges for us all, but both of them have supported me through this transition of being a single man to a father and a husband. I remember Lowis saying right at the start of our relationship, that hers and Luke’s life isn’t easy, it’s tiring, boring at times, lots of hospital and school appointments, so many professionals to speak to, and if I wasn’t sure then I should say.

This has been the biggest adjustment to my life that I have ever experienced.
Before Lowis and Luke, I had been working at a children’s hospice for children with life limiting conditions for 14 years. I had been a carer and the last 12 years I was an activity coordinator at the hospice. When I met Lowis I was moving on to another job which involved shift work. You can be told everything you need to know about life as a family with a child with special needs and with my experience I didn’t think it would be a problem. I’ll say this now, you cannot understand a life like Luke’s and Lowis’ until you have lived it yourself.

For me tiredness has been my biggest struggle along with isolation. Friends and family try to understand but after numerous cancelled events with them people stop inviting you and speaking to you as they think you are making excuses or using Luke as an excuse, and after a while the invites stop. If only they knew, hey?

I had 3 jobs within the first 2 years to work around my family but with Luke’s medical aspects of his care started to change, I made a decision along with the support and guidance of Lowis to stop working, to become a full time carer with Lowis for Luke.

Just a normal day. Nothing to see

We drive Luke to school and pick him up everyday which is about 3/4 hours of travelling a day, due to where we live in relation to his school. We have an average 2/3 appointments a week for Luke, emails from professionals every day, and deliveries of medical paraphernalia for Luke each week. Plus medication ordering, preparing his meds each day, and the volume of washing is staggering (and that’s just my clothes). How Lowis managed all of this by herself I’ll never know as I would have been a wreck!

Recently she has been supporting our entire family as I have really struggled with life it’s self. I was diagnosed with depression over a year ago now and I’ll be honest I was useless for lowis and Luke. I have struggled to understand why I have been like this. Lowis has been my absolute rock through this, let’s say blip.

Men can’t deal with their emotions, we compartmentalise and move forward (well I do) without ever dealing with the issue.

There is that old saying that men are the tough guys who keep it together and show no emotion. That’s what I did, but in turn I made myself half the man I was before. I hate that I shut up shop so to speak and I know I have been useless for days, and weeks at a time.

I have struggled with family issues on both sides of our family, and I have not dealt with the situation in a way that was needed. Luke has been worried about me as well, as him and his mum are very good at picking up on feelings. This makes me feel guilt and anger towards myself as I shouldn’t be putting unnecessary pressure on the two of them.

I love them both dearly and want to provide the support that they need and deserve and to be the husband and father that they look to for guidance and love from.

It’s a long road to recovery but I feel I’m making big steps in helping myself and acknowledging my faults and learning from them.

My relationship with Luke has strengthened and we have so much fun together, usually at Lowis’s expense. Lowis reminds me daily how much Luke is like me, from his taste in clothes to music and sense of humour (I’m a 90s man).

She says he looks to me for my approval of songs before he says he likes it. It’s mad to think that’s happened.

Myself and Lowis don’t have much help from family due to Luke’s ever changing care needs. We are together all the time and have gotten to know each other very well. We have good days and bad days like all couples and families but we talk through everything as we can’t keep a grudge or be angry as we live in a small place and we need each to support Luke’s care.

I wouldn’t have it any other way. I love my family and our life and when we have those blips, hospital visits for operations or weeks spent at home due to Luke being unwell we support each other (the 3 of us) we kick butt.

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