I’m a firm believer in “everything happens for a reason.” There are however, those times when we’re all left questioning why-
“What did we do to deserve this?”
For the most part, I try to look for the positives even in the most trying moments of those “whys.” In fact, this couldn’t have been more clear in respect to recent events. I want to share these recent events with you as they’re taking me in an unknown direction with ‘live it ALL IN’ and are helping me shape and support a healthier family as a whole.
I’ve said before that parenting is hard and there is no manual. Talking about how hard parenting is often helps. Asking for advice or a friend’s opinion also often helps. Sometimes we just need to see that initial facial expression of a friend and it helps us make a decision. What do we do though, when we feel no one gets it? What do we do when we feel we’re doing the right thing but that no one is there to support you along the way? This has been my life for the past few months of waiting for a special appointment for Breanna. I didn’t shut down and consider my instincts silly. Surprisingly certain blog posts would pop up on my facebook feed or other special needs mamas would share certain posts that I felt spoke directly to me at this point in my life. So, I went with my gut and the encouragement of a PT that met Breanna at the Glenrose back in October. The most amazing thing happened. It was one of the most satisfying, liberating, and terrifying appointments that I’ve ever had as a mother. Breanna got to try something that up until about a year ago, I never pictured she’d ever need, nor wanted her to ever need- she got to test out a wheelchair. Now, I want to back up a bit and give a little background as to how we got to this point because I think that’s an important piece to the message I want to get across. I’ve been afraid to share it because I basically stopped talking about the issue due to weirdness all around. Here it goes…
During a regular check in appointment with Breanna’s medical team at the Glenrose in the fall, we had the pleasure of meeting a wonderful PT (in addition to all of the wonderful PTs we’ve had the pleasure of working with already) who asked me questions and truly listened to my concerns. I had been asking different people on Breanna’s team what their opinion was on mobility aids for her, never receiving a straight answer. This PT finally had answers for me…well more so recommendations…but they were what I had been asking for for months! She recommended that we bring a vendor in and have Breanna try out a wheelchair. No commitment necessary. That easy! Her reason for choosing a wheelchair as a mobility aid for Breanna is for her to gain independence. Yes, we can push her around in a stroller or a super cool pedal car, but that’s not teaching her how to handle her mobility and struggles on her own. It’s not teaching her how to adapt, modify, and improvise. As much as I want to keep her close, I don’t want to have to be the reason that she’s always yelling, “wait for me!”, “why can’t I?!”, or “I can’t because I’m too tired and sore.” One of the most important things that I want to teach her is how to be an independent young woman. This would be a step in that direction.
Symptoms continue to get worse for Breanna and she no longer likes to be worn in a carrier (fairly so at this age). During the summer, her and her brother get to cruise in an awesome pedal car that their dad built for them; however, this lasts for a few months out of the year and isn’t something that I can easily throw in and out of a vehicle to take to the zoo for example. I had questioned for a walker, cane, anything!!! to assist Breanna get to where she needs to go when travelling long distances on her legs. When she’s required to walk for long periods of time, either she does it with a look on her face that only a few people can tell is pain or she ends up needing to be carried because she’s accepted defeat (which we are so very fortunate she is able to and does communicate to us). She is so determined to do what everyone else is doing and keeping up, that she will stomp along until her legs just can’t keep up.
This is where I think people have trouble with the idea of a wheelchair. It’s seen as unnecessary to most or a step in the wrong direction. They see her running at the park, they see her playing at indoor play places for over an hour, and they see us at the farmer’s market making our way through. What they don’t see is that look on her face, her knees buckling, her toe tripping, or that pain hours later that lasts for days because her legs are so tight. To most people, Breanna looks completely normal. Most people also make a point of letting us know it as well.
The big day arrived and I kept quiet about it and off we went! As luck would have it, there was a wheelchair there waiting for someone else that was a super lightweight model. Breanna was able to take it for a rip and then later compare it to the one that the vendor was bringing for her to try (we were warned it would not be as cool the light one haha). Take it for a rip she did! Off she went and no one had to teach her how to go, stop, or turn. She wanted to go everywhere like that and there was this look of relief on Breanna’s face that I’ve never seen before. The way I’ve been describing it is that it was as if she was reborn. Visions of her playing basketball in that chair circulated in my head. It sounds so silly, but no joke, all I could see was where a wheelchair was going to take her. Not how it was going to hold her back- how she was going to soar. At that moment, there were no judgy tones or weird remarks that could take that feeling of joy away from me. I’m still on a high from it. When you are put in a position where you worry and wonder every second of every day about the future of your child and family, and you get to experience a moment like I did with her in that chair, it brings you to your knees and restores your hope and joy in that future.
I could barely get her out of that chair to go home. When I asked her about what she liked about the chair and why she wanted to use it, she said, “because then I don’t have to stand on my legs that are wobbly. I don’t like wobbly legs.” Can’t argue with that!
This brings me back full circle to this unknown direction for ‘live it ALL IN’ and choosing a happier and healthier family as a whole- thinking about ALL of us, myself included. I’ve been trying to do it all and I just can’t do it anymore. If I’m not healthy, how can this family run as a well-oiled machine with everyone’s needs accounted for? Home therapy, one on one quality time with BOTH children, being truly present, less social media, and recognizing that I was drowning as a woman, a mom, and a wife, has become far more of a priority to me as of late than making sure I’ve posted on instagram enough times that day in fear of losing my social media “game” (if I ever had any to begin with haha!). I can’t be everything for everyone and I need to be the right person for the right people. More important realities were knocking at the door like,
“how do I create a routine with home therapy with two children?”
“what if we never get answers?”
“is there funding for that?”
“what if I don’t ever go back to work?”
“what if…what if…what if…”
Where did this need to change speeds stem from? Many places as of late, but the most affirmative place was that wheelchair trial appointment when I was finally able to see my daughter past the pain and the unknowns to see visions of her succeeding and loving life with mobility. Mobility that isn’t conventional for her level of CP or as a person in general, however, it is necessary and I don’t care what anyone else has to say. I understand that many people can’t see past the “normalcy” in which we live with B’s disability and I don’t fault them for that.
I am going to continue to advocate for special needs and Cerebral Palsy in particular. I believe that we need to continue to fight for inclusive advertising and raise awareness to the issue (thank you to Portage & Main for giving us this amazing opportunity). I also believe that each and everyone’s story is important. I have learned so much from following other special needs families and families with CP on social media that the world has become much less lonely and unrealistic. I want to continue to share our story and what works for us with CP, all the while respecting B and her/our life. I just need to figure out how to do so. So there will be less preschool and sensory activity posts with ‘live it ALL IN’. There are so many amazing accounts out there to follow for ideas and inspiration.
If you would like to continue this journey with us, continue to follow along! If not, no hard feelings! Parenting is hard and life is an unknown journey- We need to declutter. Out with the irrelevant and continue to keep the positively influential accents in our lives!
With so much love,