Sometimes you win, and sometimes you lose, right?! Right. My “conventional marriage”, was finalized in divorce, at some point in Early 2004. We brought another child into our marriage in July of 2001 … my only full-term baby (that’s right, in 2010, I had another premature child, 6 1/2 weeks early), and even she wanted to be born six weeks early, but doctors were able to stop my contractions .. with a little bed rest, I was able to hold her in until 39 weeks … July 2, 2001, it’s a girl … 6 pounds, 6 ounces, at 6 am … Hmmm … you said a girl, right?! Not the devil?! (Again, I joke … sorta)
My ex-husband started cheating on me in November of 2000 … That’s right … You do the math! Yet, I still fought for what I thought was mine … I lost, but eventually, when I realized he got another person pregnant, I won. I won my freedom from him, back … I no longer had feels for him the way a wife should have for her husband … Soooo …
In January, 2003, I moved my children and I to Hickory, NC. I was no longer a wife. I had a new title: Single mom … with nowhere to go. My mom, and my brother lived there, so it made sense. We spent about 6 years there. I have nothing, but wonderful memories, and few close friends that will be cherished forever. I do believe it was when my older two kids were happiest in life, if I’m being 1,000% honest with myself. It’s also where, for four years, twice a year, my son was injected with botox injections, in both legs, and then casted (to stretch the tendons in his calves and ankles) for 6 weeks, each time. Even though his cerebral palsy only affects the right side of his body, the doctors felt that doing it to both legs, at his age, would give him an “even” feeling. Along with the botox, came extensive, intensive, physical and occupational therapies, 2 – 3 times per week, during these four years, and beyond. I could sit here and list the numerous procedures and therapies my son has had to endure, but I can’t remember them all. There have literally been hundreds, and if anything, I’m under-estimating!
Single mom, 2 kids … my world … not such a bad title to hold.
I seem to have forgotten to mention what exactly caused my son to develop cerebral palsy (CP) … At birth, he suffered a Grade III, out of IV, bleed, on the left side of his brain, affecting the right side of his body. In other words, he had a stroke. Given too much oxygen at birth? Maybe. However, for all the things that SHOULD be wrong with him, he is truly blessed, and a FUCKING MIRACLE!! Through the years, I have seen many kids born at 26, 27, 32 weeks. I have also seen many born at full term, with cerebral palsy, requiring a wheelchair, having no speech or any motor skills … I KNOW HOW LUCKY WE ARE!!! It’s trying to teach a kid with a severe disability, just HOW LUCKY HE IS!! Even though I have ingrained, in my son’s brain, that CAN’T isn’t in his vocabulary, I still struggle with showing him that he fucking CAN!!
He can do anything he wants in life … He may have to work a little harder, but he FUCKING CAN! (He’s almost 19, so I don’t feel bad swearing at this point).
In 2008, I decided that my ex-husband needed to be in our kids lives more. So what does every sane, normal person do?! Oh … I upped, and moved back home to New Jersey, in August. This whole section of life, is a whole other blog! wink wink!
August 2009 … Children’s Hospital Of Philadelphia (aka CHOP) …
My son had some testing done at CHOP, to decipher exactly what could be done, surgically, to help aid him in his growing years. You see, it was these tests that clued us in that his right hip was growing in, instead of straight, causing his right leg to be extra tight, shorter than his left leg, and caused him to tippy toe his right foot for many years, walking with an EXTREME limp. What brought me to this point, as his mother?
Mean people! Cruel fucking humans.
Earlier that year, in the Spring, my son wanted to play baseball … a great little athlete, he was (is) … even with his “gimpy limp”. He had (has) an arm on him, like you wouldn’t believe. It’s a damn shame that some people have to be complete, fucking assholes their whole life, and a mother, at that. Being that we were new in town … No one knew that I was his mom. I was so proud of my kid for joining a team, where he hardly knew anyone. The kids were pretty accepting of him … 3rd graders are still sweet! The first time my son was up to bat, he hit the ball … AWESOME! … and as he ran to first base … Cheering him on, I overheard another mom question who my son was … (in my best snotty voice) “Whoooo is that kid?! Isn’t he considered a liability?!”.
NOW, in my best Mama Bear voice, “I’m sorry … WHAT?! BITCH! … THAT is MY kid … He is NOT a liability … he is a fucking miracle, with a heart of gold, and a smile that would melt your cold ass heart! He has cerebral palsy, and has EVERY right to be here, just as much as your perfect little liability, er … son does!”. ((GTFOH!!))
Can you believe the audacity of some people?!
September 21, 2009 … Morristown Memorial Hospital … Surgery Day!
Look at that sweet, sweet face! How could you not fall in love with this kid?! His big brown eyes, super long eyelashes, and a smile that just makes everything okay in the world! Side note: I love his smile so much!!
THIS … was the scariest day of my life. My baby boy was about to endure EIGHT procedures, in EIGHT hours, and while my memory fails me to know the exact terms of each procedure, I can give you the synopsis … Basically, the doctors had to break his hip, rotate it out, put a temporary plate in (which was removed a year later, during another surgery), while it fuses back together, along with lengthening his groin muscle, heel-cord surgery, stunting the growth in his left leg, so his right leg can play catch-up (those tools were called 8 plates, and they too, were also removed, in a separate procedure, once his left leg caught up, about 2 years later) … that’s five … the other three things were minimal. He was supposed to come out of surgery in a body cast, for 6 weeks. It was a last-minute decision, by the orthopedic doctor, to NOT cast his body … Because he knew my son, and he knew it would only hinder his recovery … and he was CORRECT!!
Again … Look at that face … all drugged up, and still has a smile for his mama! GOD, I LOVE THIS KID! So, now that we have gotten through the surgical aspect, now starts the long road to recovery … A full year recovery, and then some. He had to learn how to walk again. “It’ll be a good 12 weeks, before he’s ready to start to walk,” Dr. Rieger said, “However, I decided to not body cast him, in hopes that he may walk sooner.”
And that he did! He walked 6 weeks before he was even supposed to start trying! “YOU ARE FREAKING AMAZING!”, I would tell him time and time again. “There isn’t anything, YOU CAN’T DO!”, would roll off my tongue, over and over. We went through a full year of physical therapy, and unless you knew he had CP, you would never know it. Mission accomplished!
Fast forward to sixth grade … Ahhhhh Middle School!! Difficult transitions to get used to. You’re expected to do more for yourself in school, change classes, etc. When Sean started middle school, we lived in a neighboring town, to where we live now. After the first marking period, his teachers were all telling me that he needed extra help, or maybe he was a resource kid … a kid who needed help in every aspect of school.
WHAT are you people telling me?! I have NEVER had a problem with his schooling, except in 4th grade, but that’s when he had his big surgery, and got a little behind. He was totally fine in 5th grade, when his lowest grade was ONE C, the whole year?! I literally left there in TEARS!! Who the hell wants to hear that their kid is resource material?! NO ONE, but here we were! Because of his cerebral palsy, he was always being tested, and was always “over testing”. They could never find any learning disabilities … EVER!
Other circumstances in my life, caused us to move from that town, to the one I live in now, allowing my son to change schools in the middle of 6th grade. He did okay that year. Seventh grade, we struggled with some bullying and grades … Of course, I thought it was the bullying that was causing his struggle with academics. WRONG! In 8th grade, yes EIGHTH grade … it was his Math teacher, who finally “heard” what he was trying to say. Long story, short, it was found that he had a terrible processing speed. So things that should normally take you a few seconds to answer, would take him a minute or two … or longer … therefore resulting in a documented learning disability. The poor kid was struggling for years, but didn’t manifest, until he had to do things for himself … such as MIDDLE SCHOOL!! I felt like the worst parent ever … for pushing him so hard to do better. His step-father and I really didn’t accept anything, but his best!! To our credit, every teacher, and counselor has told us that if it weren’t for our “push”, he wouldn’t be where he was at that point.
The very first day of 8th grade, he had broken his “bad” leg, in two places, from a little spill on his dirt bike … Here we go again … Getting behind in school, and MONTHS of physical therapy. I remember when Erica, his therapist, asked me what my goal was for him … without hesitation, I said, “I would like to see him run … properly.”
It’s the little things in life, that people without any type of disability take for granted. I had never seen my son run with both arms at his side, pumping back and forth. Instead, the left side worked “properly”, while his right side flailed in the wind. Although cute, he was about to enter the next four years of his life, in high school …
It’s the little things, that make a huge difference, and the day came …
December 18, 2013 … Drayer Physical Therapy, Sparta, NJ
I saw my son run, like a person without CP, for the first time in his life … LIKE A BOSS!
Tears roll down my face, and I’m reminded, we’ve already come so far.
JuSteph4All 