MANIC MONDAY
October 9, 2017

Generally I don’t have anything against Mondays. I view Monday as the beginning of the week and I tend to like beginnings, as opposed to endings. The start of things, days, events, have an optimism and hope that aren’t as certain to be carried through to the ending.manic-monday

This morning the boy struggled to wake and was grumpy. Granted, I’m not keen on our 5:30 wake-up time either and I find as he matures into his teens, it’s harder and harder for him. Don’t get me wrong he’ll never be the sleep until noon kind of teen, sleeping in to him is more like 6:30am or, gasp, 7:00am! I think he’s just a point where his preference is not be awakened, but to wake naturally, even it were to be at 5:30am, which is what happens often on weekends, when he can actually sleep in! Then, he wakes happily, wanting nothing more than to lounge in bed, watching something mindless, or snuggling.

This morning though, he was a bit of a bear. My solution? Loud music and crazy dancing. First laying next to him, helping to move his arms and waving my hands and legs in the air like an upturned beetle, then me dancing around the room while he shook off his morning blues and eventually laughed, and laughed. On occasion, I can be hilarious! It worked though and to my mind, a quick bit of dancing is a nice way to get the day started.

With that in mind, I haven’t shared the songs that make up my post titles for quite a while because I’ve been so terrible about posting so I thought I’d use this post to do so. Since the last time I shared, here are the songs and artists of recent blog titles:

Manic Monday (The Bangles)
Don’t Stop Believing (Journey)
Swimming Lesson (The Eels)
Sixteen Forever (The Dictators)
Just Like Starting Over (John Lennon)
Changes (David Bowie)
Lean on Me (Bill Withers)
Sharp Dressed Man (ZZ Top)
Summeritme Blues (Eddie Cochran)
Sound of Your Voice (Bare Naked Ladies)
Speechless (Michael Jackson)
Making Plans for Nigel (XTC)

Looking forward to a cheerier Tuesday…

 

 

 

DON’T STOP BELIEVING
October 6, 2017

Today is World CP Day.

I like that there are agencies and organizations that strive to educate and inform the public about cerebral palsy. It affects millions of families and individuals, some more obviously than others, and from my experience is often misunderstood in terms of the perception most people have about CP.

For my family, everyday is CP Day.

Cole came into this world not breathing. Not breathing for twelve minutes. The lack of oxygen to his brain caused injury. In his case, his physical abilities are largely compromised. He is non-ambulatory, non-verbal, g-tube fed, and has fine and gross motor skill compromise. His cognitive function is fully in tact. He is bright, witty, compassionate, loving and kind. He has delays both socially and educationally, largely due to the effects of the physical disabilities, but he has friends and loves school.

 

From birth, doctors prepared us for everything he wouldn’t, couldn’t or shouldn’t do or be. Their collective portrait was not particularly optimistic. We believed otherwise. We poured ourselves into doing everything we could to make sure he had every opportunity to lead a full, happy life.

There’s no handbook for raising a child like mine. There are doctors, friends, teachers, peers, who you can look to for advice, experience and support, and there are more and more non-profit opportunities for social activities, sports, and fun for kids with special needs. There are endless sources on the Internet now and on line and off line parent support groups that give strength, support, and experience too.

There are also countless therapies, treatments and interventions that can help a lot, or more often nominally, and it’s an easy source of parental angst for me, and others I know, how to know whether you’re putting your child through hours and hours of effort that may not go anywhere, for yourself or for the good of you child, and whether or not there is more value in finding some sort of balance between therapies and interventions, and providing your child with a semblance of a normal childhood, spent with friends having fun and enjoying life. It’s a catch-22 situation because you’re always left with that nagging, what if we had tried “XX”? Or maybe we should be doing “YY”.

I grapple with those nagging what if’s but I also do believe that we’ve managed to raise a boy who is exceeding expectations of what his life would be like, and who gracefully handles the lot he’s been handed. It’s not all sunshine and there have been dark periods in both his life, and in our family life, but overall, he’s leading a life that is not wholly unlike that of his typical peers, and for that I am grateful.  I will never stop believing in the power of Cole.  He challenges me to think beyond myself and inspires me to dream.

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SWIMMING LESSON
September 26, 2017

We’re back to our usual routine after what felt like endless birthday celebrations! September is a busy month for us! The celebrating fun as it is, is also exhausting. I’m looking forward to a few weeks of whatever normal life might be considered.

The big fun right now is that we have a giant hole in our backyard, and heaps of dirt, that will eventually become a swimming pool and lovely outdoor kitchen. The project started a few weeks ago and is now hostage to some permitting that requires both DWP and the city to approve, so your guess is as good as mine as to how long that will take.

After years and years of wishing and contemplating the idea of putting a pool in our backyard, my father in law kind of got the ball rolling for us. Cole has always loved water and swimming, and thrives doing aquatic therapy, so it will be amazing for him to have a pool of his own.

It’s also a great social activity for him. He’s at an age where social things have become harder to come by and fewer between. Teenagers don’t really want an adult infiltrating their outings activities, nor are they necessarily mature enough to be asked to be responsible for Cole on a solo outing. It’s hard. But inviting friends to swim and hang out is an easy, fun social activity that they all enjoy and that will hopefully keep his social calendar filled.

We’ve been blessed to have many friends over the years, who have generously shared their pools and backyards with us, so our hope is to pay it forward by having a sort of open invitation to all of our friends to come spend time lounging and swimming. We tend to be home quite a lot and plan to make great use of the new backyard in terms of swimming, hanging out and cooking, and we love to have company for all of those things!

I am already envisioning next spring and summer being filled with afternoons of swimming and goofing around with friends that turn in to casual dinners and night swims. I’m fantasizing about putting a moveable screen outside so we can do impromptu movie nights viewed drifting on floats in the pool or snuggled up on a cozy lounge chair. I imagine my husband and myself doing all kinds of aquatic workouts, including swimming laps, but also enjoying the resistance of water for other aquatic exercise.

I see Cole coming home from school and taking a daily afternoon swim. It will be a fabulous chance for him to stretch out his body and to move a bit after a day in his wheelchair. I can’t imagine how good that will feel to him. The freedom he has in the water is unlike anywhere else. He has more control over himself and more strength in water. And it’s definitely his happy place!

I’m beyond excited about the seemingly endless benefits our backyard transformation will provide! Even looking at the giant hole and mounds of dirt, I can picture the family frolicking in the cool water on sunny days…

I hope you’ll join us!  (maybe not until next spring!)