When you are a parent, worrying pretty much comes with the territory. We all do it; it’s just part of the job. I’ve always envisioned our first-born Skyler getting a good education, making friends, getting a job, traveling, getting married and having a family. Of course nothing is set in stone and it’s not guaranteed, but I think this is what many parents envision for our children. Will this also be possible for our son River, who has Down syndrome? Yes, absolutely, and I will always encourage and support him to do whatever he wants in life. Unless that involves him wanting to ride a motorbike. Not going to happen! Anything else though, he will have my full support and belief in him to achieve it. But I understand it might not be an easy road.
What I don’t do is let worries about his future overwhelm me, and I certainly don’t let them affect our lives. They’re there in the back of my mind, yes, but for the majority of the time, that’s where they stay. I’ve always been a positive person, and I’d also like to think I am a strong person. We can let our fears consume us or we can move them aside and get on with living a good life. And we do have a good life — great in fact.
The hardest thing for me is not these worries; the worries are the easy part for me, personally. I guess I’m just kind of good at getting on with things. The hardest part for me is the assumptions. Assumptions from people I have never even met. Assumptions about my son, his brother, me, my husband and us as a family. Assumptions about everything. Assumptions, assumptions, assumptions!
Assumption: My life as a mum is hard. — No it’s not. It’s genuinely, hand on heart just not hard. It has difficult moments, yes, although touch wood not many of those yet, and I’m sure more difficult moments to come. But do I class my life as hard? Not even slightly. In fact we have a great life. We have a nice home, our business is doing well, we travel, we smile, we laugh, we love and we go to bed happy. Not everyone can say that. Your pity is misplaced if you are aiming it in our direction. We are very, very lucky. I am of course talking about our own personal situation. I hate it when people assume I have a tough life, so I would never assume that another family has it easy. We all have different circumstances, and our children all have different needs. We just shouldn’t assume one way or another what a person’s life is like.
Assumption: Skyler has a hard life. — Skyler is gentle and kind and seems to me to enjoy life hugely. He also adores his brother; they have a beautiful bond. He also has the patience of a saint with his mischievous and feisty little brother. He is his biggest supporter and celebrates every achievement with an awesome enthusiasm. Both of my boys are showered in attention, love and time. I worry about the future, yes. I worry that Skyler might face more responsibilities for his brother, especially when my husband and I are no longer around. It’s something I think about often, but all we can do is work our butts off to ensure that they are both financially secure and hope that their beautiful bond continues. I do hope that Skyler will always help us in regards to his brother’s care, along with any future children we may have. But I don’t expect it, and I certainly wouldn’t pressure him into it. Skyler is River’s brother, his friend and his protector, and my heart aches with pride for him.
Assumption: River has a hard life. — River seems to me like a happy little boy. He has a wicked sense of humor and is very, very determined — a character trait that will serve him well in a struggle for acceptance in this world. Of course he may face hardships; life can be tough when you are different. It’s my job to prepare him for whatever comes his way and teach him how to overcome obstacles, and most of all teach him how to overcome the attitudes of others. I intend to succeed in teaching him how to prove others wrong with his head held high, a smile on his face and twinkle in his eye. I’ve been doing that myself for years; of course I’m going to teach my sons to be exactly the same! Nobody tells us Balozis what we can and can’t do, believe me.
There are so many other assumptions we have to deal with, such as Rivers not being healthy, or that he’s always happy, or that he will never have a job or travel — none of these are true. Another assumption is that our life would be better if he didn’t have Down syndrome — definitely not true.
What I tell myself to remember is that people’s misconceptions about my son and our life can only hurt us if we give them power. I’m not saying that people’s opinions have a huge negative impact on us, as actually they really don’t. But it is really frustrating that people who have no experience with Down syndrome at all can decide what our life is like. People I have probably never even met!
Nobody has the right to decide that I have a hard life without even knowing me. Even more so, nobody has a right to decide that River doesn’t have a good quality of life without even knowing him. When River was born, he was everything I never knew we needed. In such a short space of time, he has helped me see the world through new eyes and has become my biggest teacher. Actually both of my sons have taught me more since their births then I ever knew before them. I will be forever grateful to them for that gift. River is a blessing to our family, and whatever we face in our future we will face together. There is nothing that could ever change the fact that I wouldn’t change him for the world.
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