My name is Shannon Strogal. I am a strength and conditioning fitness coach at OPEX Fitness in Regina, a wife and a mother to four children, 2 boys and 2 girls ranging in ages from 22, 13, 10 and 8. My passion in women’s health, both mentally and physically, comes from my own personal experiences. I am recently new to blogging and I hope my stories can inspire and resinate with fellow mothers. I truly believe that behind every successful woman is a tribe of other successful women who have her back.
Being a parent is hard, there is no doubt about it. Being a parent of a special needs child is even harder. We love our children just as much as those who are parents to typically developing children, but the struggles we face are so much more challenging than the average parent.
From the moment our fourth child was born she was diagnosed with Mosaic Ring 18. A rare genetic condition in which one of the ends of the 18th chromosome joins together to form a ring. The condition affects all areas of her development, so at her current age of 8 she can not stand, sit, crawl, speak, feed herself, toilet, etc. She is completely dependent on us for everything from bathing her, dressing her, even holding her up to be sick when she has the stomach flu.
At first, you don’t want to acknowledge a diagnosis. I was in total denial and prior to the blood work confirming it I was sure my doctor was wrong. Then you don’t want to believe it. And once you get over that hurdle, you need knowledge. I poured myself into the computer and read everything I could about her condition. Then you need to vent. You need a friend. You need people to understand but you feel alone.
I recently saw a video on social media where a mom talks about her child who was severely autistic and she spoke about feelings and thoughts that no one else would understand other then special needs parents.
She cried as she spoke, and I cried for her, a complete stranger because I knew exactly how she felt.
There are rough days, and when I say rough, I mean really rough. Last weekend was one of those moments in our lives. Our daughter lives at home with us where she is safe, and healthy. You think after this many years it would be easier, we would be able to handle it. As I stand on the other side of her bedroom door listening to her cry and scream I take a video to share on social media about what life is like with a special needs child. I talk about how she has moments likes these quite often and all we can do sometimes is let her cry to exhaustion. I tell the camera that she has eaten, she has been given a drink, I have changed her, checked for signs of illness, I’ve given her her favourite toys, moved her around the house, basically tried everything I can to calm her. And then I delete the video. I delete it because all I can here in my head is the judgements and comments. Why am I videoing this when I should be holding her. Why am I not spending every moment making her feel better. I’m not going to lie, I probably should be holding her and there are times that we do, but there are days when I can’t take it anymore, when the crying and screaming won’t stop and I have to lay her in her bed and shut the door and walk away because I am mentally exhausted.
I feel the guilt and the shame but it’s so hard some days. It’s hard when we can’t do certain activities with our other children because all facilities or activities are not wheelchair friendly. It’s hard when I have to miss your other children’s extra curricular events because your special needs child is sick or having a bad day once again. It’s hard to watch other children ride their bikes and run and say I love you to their parents when you know you will probably never get to see or hear those things.
We think about her future, and our future. We think about her quality of life and how we will be able to take care of her as we get older. She will never be able to live on her own. Who will take care of her when we are gone?
I know that her general health and happiness should be enough and that we should be grateful, and believe me we are, we absolutely love her to bits. We live for her smiles and can’t get enough of the giggles when we are lucky enough to get them. Watching her move herself around on the floor and get onto her elbows is amazing and when we are at her rehab appointments and she is standing with assistance or sitting on a specialized bicycle it has brought happy tears to my eyes. We are blessed to have her in our lives as she has taught us many lessons. I’ve heard the “I don’t know how you do it”, and I know people mean well but it’s not like I/we have a choice. You just live with the hand your dealt with and you keep on living each day.
My advise to all special needs parents.
On your darkest days, I want you to know that you are not alone. What you feel is completely normal. I want to tell you that you will make it through this journey.
Go easy on yourself. Feel every feeling. Be upset. Be sad. This life is hard. And then learn to laugh because that’s the only damn thing that will get you through. I promise you with every ounce of my heart that you are going to survive this.
At the end of that video I mentioned earlier the woman smiled, wiped her tears and wished everyone a good day as she went off to work. That’s what we do… we put on the happy face and we carry on.