I’m not really a worrier. I seem to just have this ability to just put things to the back of my mind and get on with it, but believe me when I say that’s not always a good thing. Ignoring something can be just as bad as worrying about it constantly, either way your emotions are not being dealt with in a healthy way.
Overall, I’m a glass half full kind of woman, it’s just in my nature to be positive. But I really hope that side of my personality doesn’t paint an unrealistic view of what it’s like to have a child with Down syndrome. I really hope that the fact we portray such a positive image of Ds doesn’t make other families feel guilty for not feeling the same way. I don’t claim to be a poster family for Ds and I don’t claim that all families are like ours, I’m just showing our story. I’d hate for people to feel guilty for having bad day or struggles, or even for at times wishing their lives were different. I’d hate for people to think that we don’t have worries to!
At the same time though I don’t want to pretend that things are harder than what they are, because the truth is that right now I honestly don’t think Down syndrome has a massive impact on our day to day lives. I have bad days of course, but mostly it’s just not such a big deal. Saying that, we are extremely lucky that River is healthy, and it could be a very different story if we had harder things to face. A lot of parents are dealing with much tougher things than we are, and I have so much respect for those families. To be honest, my positivity just hasn’t really been challenged that much so far. I’m aware that it could change at any moment though, I’m not naive and am very prepared to deal with whatever comes our way. I’m also very determined to be open and honest with my feelings every step of the way, as I have been since I started sharing our journey. I don’t want anyone to think that I only share the good things, paint a perfect picture or am in denial. It just so happens that our life just isn’t so tough or challenging, although lets touch base this time next year as River has the potential to take me right to the edge as he’s growing up!
The point is that we all have our different ways of dealing with things, and we all cope and react in different ways. Not the right or wrong way, not a better or worse way, just different. There is no right way to feel, we don’t get to choose how we react to things as our emotions make that decision for us. We just must do what we can to stop our fears having negative reactions on our families.
Just because I’m not a worrier by nature, it doesn’t mean I don’t have the same fears as everyone else. I still have tough times. Days, even weeks can go by without me having one negative thought regarding Down syndrome, but then one day all those worries, and problems will hit me all at once. We don’t have any specialist’s educators here, I’m going to have to do that myself – can I do it? Will River be accepted by other children in school, will he have friends? The only option we have is mainstream, will he cope? Will River have any form of independence as an adult? Will he have a career? Will he be confident, will he be happy, will he love his life? Will he face medical issues as he grows up? Will he talk well and be understood? Will he suffer long term from the fact he has no therapies at all? And then there’s the biggy, the biggest fear of all. What happens when I’m no longer here? It goes on and on.
And then three are worries for myself, selfish maybe but still there. I am constantly scouring the internet for educational props, research into especial educational needs and the best way to teach my son. I’ve done online course and read everything I can find. Not because I am super mum, but because I have zero resources here and if I don’t do it then River suffers. If I can’t provide those things for him then he will miss out and I can’t face that guilt. Same goes for therapies, I watch YouTube videos and read everything online because I want River to have the best chance at independence. There’s also the fact that I live overseas and have no friends who have young children with Down syndrome. I don’t even have friends whose children have any type of disability at all. I have no support groups, there are no places I can take River to hang out with children like him and he has nobody his own age to grow up with who also has Down syndrome. And then there’s the days when I just don’t want to have to prove to the world that my son has a right to be here. No other parents have to prove their children’s worth to society, so why should the parents of disabled children? Some days it really hurts that some people in the world don’t think his life has value just because of his diagnosis.
Every parent of a child with Down syndrome has these worries, we just process them and deal with them in different ways and that’s ok. At the end of the day all any of us want for our children is for their lives to be happy and fulfilling. That’s all any parent wants, but for those with disabled children that worry is constant as it’s so much harder to achieve. Our children’s lives will not map out in the way that society deems ‘normal’ and it’s ok to feel sad and angry about that. Whatever you are feeling is ok and you shouldn’t feel guilty about it. Just do what you can to process it and get past those fears, as feeling guilty about it helps nobody. You need to take care of you and allow yourself to feel whatever you are feeling without beating yourself up for it. You are allowed to have bad days! And no matter how many bad moments I personally have, there will never be a day that I don’t think my life is better for having River in it. There will never be a day that I don’t realise how amazing he makes my life and how lucky we are to have him. Having a bad day does not mean I don’t think those things. A bad day does not mean I don’t adore my son. We just have to deal with our emotions and get right back to being the parents that our children deserve, and that doesn’t just mean the sparkly side. You, warts and all, good and bad, are exactly what your child needs.
My aim when starting ‘I am River’ wasn’t to portray myself as some kind of amazing mother or to convince people that I have all my sh*t together. I really don’t! I just want to show people that your life doesn’t have to be perfect in order to be happy. You don’t have to be perfect in order for your children to be happy. You don’t have to be perfect in order to be a good parent and your children don’t have to be perfect in order to be worthy. Our lives are what they are and life moves forward, I just choose to do it with a smile on my face.
Because do you know what? Out of all those worries I have listed, not one of them could ever make me wish that our lives were different. Not one of those worries could ever make me wish that River was different, because I genuinely wouldn’t change him for the world.
That’s the reason why I don’t really worry all that much.