My 10 year old is chasing down 22q and cerebral palsy running a 5k here is what I learned.
Over the past 10 years, Bella has taught me so much about the world, life and even about myself through her eyes.
Bella turned 10 this year, in fact, she just had her double-digit birthday April 27 and that is a huge milestone to achieve in any kid’s life.
As you know Bella is in Girlsontherun a program right here in Sw Michigan in Kalamazoo
Bella was lucky to be able to participate she loves the top, water bottle and the shoes they give as part of the deal when you sign up. There is cost but they have scholarships as well. I encourage Bella to sign up for things she is interested in to help develop her social skills one of the issues she has with having 22q deletion syndrome.
Most 10-year-old kids are reaching goals and milestones and developing their skills in things they like and dislike such as hobbies, self-expression through fashion and developing a self of self-worth and self-esteem. Bella most favorite past time is starting to strive for independence and driving her mom that's me crazy! while she is starting to enter puberty and learn how to cope and handle living with two different disorders she seems to think she the boss because it is the one thing she can control in a world she has to deal with so much she can not control.
One major issue we deal with daily is 22q11.2 deletion syndrome which I also have and I can have inside first-hand experience to pass on to my daughter. The other disorder Bella has is a mild form of cerebral palsy which I am just learning what it " looks like" I have friends who have children with cerebral palsy but they use a cane or a wheelchair I only know one other person who has a teenage daughter who has mild cp and she does not look like there is anything different just like Bella looks like there is nothing different about her. I am learning all I can about cerebral palsy with the help of doctors but mostly from people we met. I know our challenge is we are learning how to deal with peers her age who pick up on there is something different about Bella but they can't figure out what usually the sweet ones ask me about Bella and are patient with her and want to be her friend and include her which makes me so grateful that Bella has a small group of friends. Bella struggles with the day to day task of staying focused due to ADHD and issues with things such as homework has been much easier to handle. We do face challenges together hand in hand or side by side I may not always blog or post about every single piece we deal with because this is our journey and have learned that not everyone wants to read about the sad stuff all the time. That's why I am writing about our joys more often than our sorrows because I want to remember the good stuff. I do journal the hard stuff but we have had easier days over the years with fewer doctors visits now that Bella is older we don't see doctors as often as we used to for her. This past year Bella has grown so much we have both been on the verge of tears out of joy, fear and yes even anger with one another as we challenge each other to do our best to overcome our own struggles.
I can’t say that I don’t pity my poor husband as we discover this journey together and he left scratching his head most days trying to find his footing in our girly midst of sometimes it seems daily power struggles of trying to tell Bella I’m not her friend I’m her parent. Oh, the joys of pre-puberty and now entering puberty at a speeding rate I can’t seem to keep up with the daily challenges all on my own. I seek help and ask my husband to step in but not sure where we find time after for one another as we struggle to connect from an exhausting day of trying too hard to be the best parents we can be. If you saw my Facebook post you would see that he starts a new full-time job in Grand Rapids, Mi. Which means less time for romantic dates and more time for the have to and the daily routines of the day in and day out the lifestyle of parenting.
In the mix of all that goes on around here, Bella needed an outlet a place where she could run and burn off her pint up energy and she found it in girls on the run a program for girls who train together to run a 5k. You read that correctly Bella is training to run a 5k if you are on any social media accounts I have you would have seen the weekly status updates of how many laps Bella did today while this week we are nearing the end we did the first practice 5k. Bella is a fast runner and kept up with the older girls while I lagged behind and helped the kids cross the street I had an idea to write this blog post because I wanted to share a part of our journey and the amazing thing my daughter is doing at 10-year-old with all she has overcome and has to manage she has shown me yet again that there is nothing we can’t achieve. I haven’t run in years but I did attempt to I made it down one street and was huffing and puffing and realizing how out of shape I truly am but she is inspiring me to get healthier. As Bella grows learns and develops into the wonderful women she is becoming I am seeing challenges we face in a different light.
The one thing I signed Bella up for to help with some of this is girls on the run the doctors suggested to keep Bella's legs stretched out is to have her stay active be it by riding her bike or with the use of running or jogging. Bella has ADHD as another hurdle she manages and all that energy she has no idea what to do with is different it is the focus and centered when she is running. When Bella runs, she says she feels light and free like there isn’t anything she cannot achieve. When she runs the fears, I have for the future slip away and all the doctors’ visits, sleepless nights and struggles we have overcome are all worth it.
Sometimes It does get Better after all.
many people don’t know what someone with “mild” cerebral palsy looks like. What do they look like? If it weren’t for medical devices, would anyone be able to tell?
Did you know cerebral palsy is the most common motor disability in children? It affects approximately three live births out of every 1,000 in the United States. Bella also having a rare genetic that is not as common as cp a different disorder called 22q11.2 deletion syndrome is another disorder on top of cp that seems to amplify the mild form of spastic cerebral palsy that Bella has. Both are total body disorders to learn more about 22q please check out the what is 22q on my website.
Do you have a person who inspires you in your life to keep pressing on when times are hard? I sure do that’s Bella
If you want to see video of Bella running click on the youtube video and don't forget to subscribe to this website (purple subscribe button on top right page) and you can also subscribe to our youtube channel. Bella plans on making more videos and wants me to record her running in her 5k race.
Will you be there to help cheer Bella on ? Let me know in the comments below.
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Bella has 22q11.2 deletion syndrome and mild form of cerebral palsy and a few other symptoms that combine with 22q .
for more info on what is mild cerebral palsy please visit. http://yourcpf.org/
for more information on 22q11.2 deletion please visit http://www.22q.org/
Thank you for reading and helping spread awareness about these two disorders.
If you would like more info just leave a message in on the contact me page.