Anyone that has spent time on social media knows that you often only see the happy and good things in a person’s day. If you’ve found this blog then you may follow Conner on instagram, so you know a little bit about what our day to day is like. I try to show some of the harder parts of our day, but do my best to keep it positive and encouraging because generally that is the vibe of our day and often what gets us through. The reason I started an instagram to document Conner’s life is because I searched for resources, glimpses of hope, etc. into what my future would be like with an ex 24 week micro preemie with cerebral palsy, cortical visual impairment, epilepsy, major feeding challenges, and a fighting spirit to boot. So, I want people to see the good in Conner, the hope you should have for your child’s future and the encouragement to keep going.
I also want to keep it real in that being a mom in HARD work. I will selfishly say that I think being a special needs mom is harder, but it is harder in different ways. I have to worry about different things than a mom with a typically developing child. I don’t have to worry about my child climbing on things, eating too many sweets or running away from me in a store (although I would hand over every cent to my name if these were worries of mine). What I worry about every minute of every day is therapy, therapy, more therapy and seizures. Specifically, when will I get Conner in his stander and his corner chair and when will I have time to work on oral feeding with him, when will I do MEDEK and will that be a time that he is less likely to puke? What appointments does he have today (rarely a day goes by without at least one)? Will he keep his medications down tonight or will I have to worry that he threw them up 29 minutes after I administered them. The doctor says redo medications if its been less than 30 minutes, but did I look at the clock right when I gave them? Has it been 29 minutes or 31 minutes?
On top of all of this, when will I have time to do laundry, clean the house, do dishes, shower, pick up Conner’s medications, take our dog for a walk, go to the grocery store, blend Conner’s food, make reservations and travel plans for his next therapy trip and have a minute to myself? These things typically get neglected…sometimes REALLY neglected (except Conner’s medications, blends and our dog, of course). Sometimes I wonder if I would actually find the time and energy to shower if we didn't have therapists coming to our house almost every day of the week.
I say all of this because there are days where I don’t do everything I should do for Conner. I don’t always get every therapy in for the day. Sometimes I just want to do “normal” activities, like go to the park or aquarium or go to Trader Joe’s and browse for an hour checking out all of their new products. Sometimes I just want Conner to have time with his cousins, so he can be around kids his age instead of therapists and doctors every day of his life. Each day that I rebel and fail to check every therapy box on his list, I get the mom guilt. However, it is not just any mom guilt, it is special needs mom guilt. I think about how I am taking away from Conner’s chances at sitting on his own, standing, walking, eating by mouth and overall having a more independent life.
Where do I begin with what our day looks like? Do you want to know what our day SHOULD look like based on the homework we have from Conner’s 7 therapists? Or do you want to know how it typically looks on a good day?
Conner’s checklist for each day:
90 minutes in his stander
30 minutes in his corner chair
2 MEDEK sessions lasting about 30-45 minutes each
12 80ml feedings (about 8 during the day and 4 at night when he is asleep)
3 sessions of oral eating/exercises (lasting about 30 minutes each)
1-2 hour nap for Conner (If I am lucky)
7-10 therapy appointments each week
Various doctors appointments every month (Conner has 10 specialists…I think, I’ve lost count)
30 minute walk with our dog (mostly for me and the dog, but Conner enjoys it too)
Time in his gait trainer or other equipment we are trialing on any given week
2 10-minute sessions in his lite gait
Communication - I am not really sure what that work looks like at this point, but I try.
Often I feel like I am racing the clock and I generally struggle with not being able to do it all everyday. I know Conner can make the biggest strides at this age. I know that I need to be giving him my all because he gives his all and has since day 1. I also know that fitting all of that in every single day is not always possible and that is okay (even if it doesn’t feel okay at the time). Conner needs fun, normalcy and time to be a kid and frankly, I need time to be his mom and not his therapist 24/7. This is obviously easier to say than it is to actually believe in it and feel less guilt, but it is a work in progress. But I think being a mom and a human is a work in progress. There is always tomorrow to do more or do something better than the day before.