Does anybody have life balanced out perfectly? I certainly don’t. And it got even more challenging after Oscar was born. I often wonder if days would seem less crazy with two typical kids? I will never know! But for me, everyday is a constant balancing act.
As I mentioned in a previous post “Entry Three- Olivia” (see it here) I am especially sensitive when it comes to balancing time between my two kids. I think this is something that any parent can relate to. When Oscar was newly diagnosed and I was still in denial I was researching stem cell treatments and several in-patient rehabilitation centers thinking that there was a “cure” out there. I was doing physiotherapy at home 3 times/day and going to probably 5 appointments/week. In addition to all of that, Oscar had difficulty feeding and a lot of time was focussed there as well. It was during this time when my husband reminded me that “we have two kids”. I don’t think that he knows how much that comment has stuck with me. It has. The balance was way off.
A typical day in my house includes taking Oscar to any appointments he may have and that we carry out his home program for all of his therapies. I need to make sure that my daughter feels important and that she is challenged. I also need to make time to do “typical family things” as well as make some time for myself. I have learned that I need to make myself a priority. I need to be apart of the balance. Because while my husband is at work, I am taking care of things at home and I wouldn’t be able to do that if I wasn’t together myself.
I have been told many times that raising a special needs child is a marathon not a sprint. I was definitely sprinting at the beginning but in doing that I fell apart. It has taken months to put myself back together, although I do think I was put back together a bit differently. I think it would be nearly impossible to remain the same person before and after a traumatic event (I will touch on this in a later post). A big part of that is allowing myself “me time”.
Initially I was so overwhelmed with Oscar’s appointments (he currently has 17 different people on his care team) and making sure that Olivia was okay and I felt like I didn’t have any spare time. I was sprinting and couldn’t slow down for myself. In May 2019 I broke down at our Pediatrician’s office and when he asked me about myself and how I was doing, I didn’t want to waste his time and I said “Oh never mind, it isn’t about me, let’s keep chatting about Oscar”, he said, “no, but it is about you too”. His response surprised me, but also validated my feelings and 5 days later I had my first appointment with my social worker.
This was the best thing for me but also for my family. In my blog I will touch a lot on the things that my social worker and I have chatted about. She definitely encouraged that I take time for myself. My “me time” is usually exercise based because that is what makes me feel best. But I think it is so so important for any mom but particularly a mom of a special needs child to put yourself on the priority list somewhere and CREATE the time for you. I don’t do “me time” everyday, but I try to do it 3-4 days/week.
I have learned that family time can incorporate Oscar’s therapies which can include activities like going to the park and swinging on the swing or going down a slide, sitting out in the backyard blowing bubbles, going for a walk or bike ride. My goal used to be that all of Oscar’s waking hours be structured therapy, to make every moment count. I have realized that Oscar needs to grow up to feel as “typical” as possible and this involves him not being stuck doing therapy all day but also experiencing the world around him. This is good for him and our family. I understand that this may seem obvious to other people, but it wasn’t to me. It did hurt a bit when my husband said “we have two kids”, but I am grateful that he reminded me to make time for both of my kids individually, the family and also myself.
The picture below was taken while Olivia and I were out on a hike, just the two of us. I hope that when she is older she will know how much I cherish the moments when it is just her and I.