Everybody at some point in their lives have dealt with stress and worry. I think from the moment you find out your pregnant the worry starts, it certainly did for me, with Ryan it was the worry of becoming a mum for the first time, is my baby developing ok, would I be a good mum, would I know what to do, the list goes on. When I was pregnant with Noah the main worry for me was would this baby have down syndrome as well. Before I fell pregnant with Noah Kristian & I saw a genetic counsellor to see what the probability of having another baby with down syndrome was. Although the possibility of this happening was very low it was still a worry for me. I had more scans than usual and different blood tests which showed the low risk but for the whole pregnancy I still had at the back of my mind what if it happens again. It wasn’t until I saw Noah for the first time that I believed everything was ok.
I knew if we did have another baby with down syndrome we would cope and we would be more prepared but I desperately wanted to experience having a baby with no additional problems and the more normal path of motherhood the majority of my friends had followed. With Ryan being our first child I felt like I missed out on a normal motherhood experience that it seemed everyone was following.
Having children can put a strain on any relationship but it feels like raising a child with special needs can sometimes make or break you. When Ryan was younger I naively thought as he got older things would get easier and stresses and worries wouldn’t be as bad but it definitely hasn’t turned out that way. Ryan’s needs have changed rapidly as he has got older but the past couple of years have probably been the toughest we have faced so far. The worries and stresses have sometimes been unbearable to the point where it has made a significant impact on Ryan’s life, our lives and also Noah’s. Noah is now at the age where he knows and understands more about Ryan and how Ryan’s needs are different to his. Noah is very protective of Ryan (as is Ryan of Noah) but I don’t want Noah growing up thinking it is his responsibility to look after Ryan, I want them to grow up to be great brothers and friends spending quality happy times with each other.
The stress and worry you go through can have an impact on your mental health, sometimes you get to the point where you feel you just haven’t got anything left in you to give. We are Ryan’s voice, we have to make the decisions for him to the best of our ability, we have to stick up for him and fight for his rights and what he deserves and quite often over the past couple of years I have felt like I have no fight left in me but I can’t give up, Ryan depends on us and Noah does too. On the days where it feels like the whole world is against you and nothing is going right you still have to put one foot in front of the other and keep going because nobody is going to stick up and fight for Ryan like we do.
I do worry about the mental health of both my boys. I worry that Noah takes on some of our worries and stresses when he sees how frustrating and upsetting things with Ryan can be and I worry how Ryan internalises things, what does he think and feel when he is in different situations, it must be very frustrating when he can’t express to us how he feels and we can’t talk to him about his feelings.
I wonder what help is out there for families with special needs children and their siblings when it comes to mental health and wellbeing. Is there a place you can go as a family and get support of different levels. A place where may be there is a therapist to offer support, relaxation treatments, where siblings can go and talk freely about their experiences, a place where you can truly be yourself.
I love Ryan and Noah with all my heart, they are my world and I would do anything for them. I am never going to be able to change the way Ryan is and in some ways I wouldn’t want to but I know one thing for sure I will try my absolute best to never let him down and I will continue to fight for the future and the life that he deserves.
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