Cerebral Palsy: We Fear What We Don’t Know

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Two days after my son Tommy was born we learned he had a serious congenital heart defect. Prior to his diagnosis he had what a young British intern described to my husband as “a bit of a fit.” It was his first seizure and what could have been called a stroke in an adult.

We believe that was his traumatic brain injury that caused his cerebral palsy.

Did you know that cerebral palsy is NOT a disease? You can’t catch it.

What is cerebral palsy (CP)? Cerebral palsy, also referred to as CP, is a term used to describe a group of chronic conditions affecting body movement and muscle coordination. It is caused by damage to one or more specific areas of the brain, usually occurring during fetal development; before, during, or shortly after birth; or during infancy. Thus, these disorders are not caused by problems in the muscles or nerves. Instead, faulty development or damage to motor areas in the brain disrupt the brain’s ability to adequately control movement and posture.

“Cerebral” refers to the brain and “palsy” to muscle weakness/poor control. Cerebral palsy itself is not progressive (i.e. brain damage does not get worse); however, secondary conditions, such as muscle spasticity, can develop which may get better over time, get worse, or remain the same. Cerebral palsy is not communicable. It is not a disease and should not be referred to as such. Although cerebral palsy is not “curable” in the accepted sense, training and therapy can help improve function.

Tommy didn’t progress physically like other kids but since he was my first child and had such a rough beginning we just thought he was delayed. When he was 14 months old, even after we brought him back to Philadelphia for his one year follow-up at CHOP and his heart got a “looking good” by his cardiologist, he had a massive seizure. Once he was stabilized he was brought to Buffalo Women’s and Children’s Hospital he was diagnosed with a seizure disorder and spastic diplegia.

Did I know spastic diplegia was a form of cerebral palsy? Nope, I did not. Did I know what CP was? Apparently nope, I did not know about that, either. We told our parents and tried hard to explain it to them, too. When it was time to tell my grandmother my mother suggested I actually use the term spastic diplegia rather than CP because she would be afraid of the term CP.

Can cerebral palsy be treated? “Management” is a better word than “treatment.” Management consists of helping the child achieve maximum potential in growth and development. This should be started as early as possible with identification of the very young child who may have a developmental brain disorder. A management program can then be started promptly wherein programs, physicians, therapists, educators, nurses, social workers, and other professionals assist the family as well as the child. Certain medications, surgery, and braces may be used to improve nerve and muscle coordination and prevent or minimize dysfunction.

As individuals mature, they may require support services such as personal assistance services, continuing therapy, educational and vocational training, independent living services, counseling, transportation, recreation/leisure programs, and employment opportunities, all essential to the developing adult. People with cerebral palsy can go to school, have jobs, get married, raise families, and live in homes of their own. Most of all people with cerebral palsy need the opportunity for independence and full inclusion in our society.

We are often afraid of what we don’t know.

Tonight I am attending Niagara Cerebral Palsy‘s Annual Awards Gala. Since Tommy’s death my husband and I sponsor an award given to someone at Niagara Children ETC who lives the mission and shares it with all the students. it is my annual opportunity to thank them for the profound impact the school had on our family and on all of those they serve.

NCP is just another example of why my glass is half full!

Have a yummy and inspired day!

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Zoom Zoom…Time Flies!

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Today’s musings are not about being a foodie but just about being Jude. It’s about that sobering realization that we raise our children to leave us.

20120803-083444.jpgThis picture of my son wearing an FAO Schwartz beanie hat was taken about 15 years ago, in a 5th Avenue subway station. I’d say it was a simpler time but I think we reframe and reprint memories. I was likely just as frantic then as I am today…yet all I remember is the sweet exuberance of a bright child trying to learn everything he could and pack it into a day with an 8:30 pm bedtime.

20120803-084122.jpgI’ll bet when my mom sees this picture she won’t remember how stressful her life was at the time this picture was taken. Her husband was working 80+ hours a week, striking out on his own when I was born, opening a used car lot with my uncle while she was trying to take care of two children (my sister did not come along for another 2 1/2 years). It’s funny how we understand our parents so much more as we get older ourselves.

I said something to her the other day and we both had a big belly crunching tear evoking laugh. I said “Oh my God, Ma, Anthony is actually moving away from home!” She looked at me with the same smirk she used to ask me to wipe off my face and said “Imagine that! A child moving away from home. I’ll bet that’s never been done before!” Yeah. Ok. Point taken.

20120803-090953.jpgHe turned 21 last year. Zoom zoom. He was just six. Yesterday he signed a lease on an apartment in NYC.

20120803-091953.jpgI guess the bottom line is, we raise our children to leave us.

Feel free to share your thoughts and experiences on letting go…Have a yummy weekend20120803-092249.jpgJudeTheFoodie.com

Lessons from Motherhood

The softer you speak, the louder the lesson. Nothing gets attention more quickly than a <seemingly> calm parent.

There is always room in the house for “homemade” anything. I still have a pin shaped like a heart and covered with red granulated sugar that I am going to wear to Mother’s Day Mass given to me when my son was in early elementary school.

It’s easier to bust them for things you did when you were a kid. Growing up I shared a room with my sister. We kept the light on in our closet overnight as an unofficial night light. Because we frequently moved the furniture, I always tried to get the one nearest the closet because I would open the door a little more to get enough light to read. I would be so tired the next day that my mother would think I was sick. Years later I remember accusing Anthony of reading after bedtime. Imagine, chiding your child because they were up late reading. Not every moment is a mother-of-the-year moment.

PlayDoh colors can mix and the end of the world does not come. I think about how many minutes of my life were spent trying to pick-up the wonderful molding toy and it makes me crazy just thinking about it.

All we have is time. And, all we don’t have is time. While I regret only having little Tommy for nearly four years I have never regretted the time we simply just spent together. Fast forward to Anthony and I made life and career choices I am proud of and still reap the benefit of.

The best way to land your helicopter is to never let it take off. Maybe it’s because I watch parents every day at work but I wanted to be sure I wasn’t that parent we all talk about. I am happy we taught our son how to manage money as a young teen, helping him get a checking account when he was 14. I only went toe to toe with one teacher, backing up the rest even when I was less than certain I agreed with their lesson. Watching him navigate his life, making decisions and doing it on his own is way more fun than flying a helicopter.

Even in death, all things are not lost. Over twenty years ago, after Tommy died I planted daffodil bulbs behind our property in a wooded area. I could see them every year and as they multiplied I was reminded of new life. Last year, without notice, the village clear cut forty feet of brush and trees to help with a drainage problem and I was never able to dig up those bulbs for planting in another area. I cried like a baby. I wept because it brought the loss back to the tip of my eyes and the front of my consciousness. About ten days ago, around the remaining brush, this is what I saw:

 one daffodil survived reminding me to hang in there. All is not lost.

Happy Mother’s Day to all of the mothers in my life.

Life is good!

Jude

Twitter: MidMajorMom

Twitter: JudeCaserta

Taillights Disappear: Another Passage

It was still dark when he left this morning so our traditional blinking of the headlights (him) and front porch light (me) quietly symbolized our wave goodbye.  Another college Christmas vacation in the record books.

He reminded his father on one of their many walks during break that he was graduating from college next year.  Wow!

He reminded me that he was turning 21 THIS year.  Wow, again!

He will likely not be home again until the end of the semester, after finals have been written and the car packed once again.  He has so much to look forward to these next few months including a training trip to Hawaii on Thursday.  He will be back in Buffalo in February for the MAAC Swimming and Diving Championships but that trip is not a visit home, just another part of his swim schedule.

Roommates and friends are packing up into cars and driving down to Florida for spring break, hoping they have the need for a side trip to see their Men’s Basketball team play somewhere in the NCAA First Round.  Easter break will be down at the condo and although it is a second home, I think by then he will be pining for his northern one.

Our regular visits end this month as the season is finally drawing to a close.  This is the semester when I miss him…the house is so quiet…

When he returns in May it will not be for the traditional 3 ½ month break.  He will only spend two weeks at home before we move him to NYC for a 10 week summer internship at PWC.

Today I’ll remember our light flashing goodbye as I pray he has a safe trip and misses me just a little, too!

Life is good!

Jude

Twitter: MidMajorMom

Twitter: JudeCaserta

AthleticBudgetCoach.com

We Survived the Teen Years!

My baby is 20 years old today.  We made it!  The teen years are now in the rearview mirror…where did they go?

It was just 2003 when he was in 8th grade at St. Peter’s School in Lewiston.  They were fundraising for their class trip to Splash Mountain in Erie, PA.  There were only 16 kids in his class at that point and they seemed to have passed that petty junior high nonsense. 

Age 14, as a freshman at Canisius High School, he endured one of the biggest disappointments of his life: getting cut from the swim team.  It was a hugely humbling experience which he ultimately turned around by working out, eating better and swimming more with his club.  By senior year he was voted a captain and contributed to another championship.

Age 15 was frustrating for him because his high school friends were largely located 45 minutes from home with the reliance of parents to get them together.  This was the year where all he did was wish away time…I wish I could drive…I wish I could just go out with my friends without it being a huge production…I wish I were older…I wish…I wish…I wish…

Age 16 – oh, how I remember this day!  Anthony, being Anthony, had done all the research and knew what pieces of ID we needed to get his learners permit.  He probably lined them all up in a folder, clearly marked.  I had the folder with me when I dropped him off at school with the understanding I would pick him up immediately following school and bring him to the DMV.  I picked him up but realized when were nearly on the Grand Island bridge that I forgot the neat folder of ID in my office.  We had to go back, delaying us about 35 minutes.  We got to the DMV at 3:55pm and the woman at the window would not process the paperwork and let him take the test.  You see, there was a clearly marked sign explaining that right next to the window…in four languages so it would be understood by all parents and guardians from all walks of life and continents.  Needless to say, he was not a happy camper.  Bad mother.  I did bring him to the Power Vista parking lot near Niagara University and let him drive around there.  If I was busted, I didn’t care.  Arrest me for letting my “undocumented minor” drive around a parking lot!

Age 17 – college applications were nearly done and waiting for guidance to complete the process.  Little did I know, that was when the true teen angst (his and mine) would begin.  My angst: him driving at night.  His angst: where to go to college.

Age 18 and 19 – freshman and sophomore year at Fairfield University, accounting major and swim team…

We had dinner with him on Friday, saw him swim at UConn Saturday and took him to breakfast this morning.  Zoom zoom…he’s 20!

The older I get, the faster time goes!

Life is good!

Jude

Twitter: MidMajorMom

Twitter: JudeCaserta

AthleticBudgetCoach.com

Please Don’t Come to My Swim Meets – You’ll Embarrass Me!

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From June 2008 until October 2008 there was a not so silent argument going on in our house.  Our son decided to attend Fairfield University and “walk-on” to the varsity swim team.  His coach explained that if you go to practice and work hard you will be in the line-up.  You may be swimming “off events” but you will be in the line-up.  What an incredible opportunity for a kid who earned full tuition – a chance to be on a team!  But, no, he did not want us there.  He didn’t know what to expect and did not want the extra pressure of having us in the stands in case he did not actually get to swim.

For those of you who are not familiar with a competitive swim team please see my next blog “My Child is Enrollment Management?”  As I describe, mid-major swim teams traditionally are used more as enrollment management, with few scholarship dollars, than responsible for generating revenue in ticket sales.

If you know me, you know my husband and I try to attend most of our son’s swim meets.  Last year we only missed one and it was one that was rescheduled due to an equipment malfunction.  Remember, every meet is an away meet when your child goes to school seven hours from home.  So, how did we get to this point when two years ago he didn’t even want us in the humid cavern known as a natatorium?

The first meet was at Holy Cross, another wonderful Jesuit institution of higher learning in Worcester, MA.  My husband and I insisted we would attend his first NCAA Division I sporting event – you would have needed an act of Congress to keep us away.  We would respect his wishes the rest of the season, but the first meet? Of course we were going to be there!

Sure enough, when he climbed on the block, pushing his goggles on his eyes with the palms of his hand like I had seen him do 100’s of times before, I could see the smile on his face when they introduced him.  In lane one, swimming for Fairfield University, Anthony Caserta!  I could see my husband’s chest expand – nothing can describe the feeling of having your child compete in intercollegiate athletics – absolutely nothing.  I can safely say it is right up there with marriage and birthing babies – seriously, it is!  It is the validation that all of their time and effort in training and academics was worth it.  It is also validation that all of your parental sacrifice of time and treasure helped them achieve a dream.

So, how did I end up here, at a Courtyard Marriott in Worcester, MA following his second meet, two years later, at Holy Cross?  Turns out, he glanced up to the stands while he climbed up on the block and saw his blubbering parents standing there cheering him on.  As a freshman, he still did not know any other parents so, if we were not there, who would cheer for him?  He came up to the stands later to thank us.

The next meet was the following Friday against MAAC rival St. Peter’s College at their home pool on campus.  My husband and I must have gotten ten texts a piece from him telling us about his swims and complaining that no one knows him and is not cheering for him.  I am sure that is not true as we cheer for all of the kids but to a lonely freshman it was his reality.  It was those texts that made us change our plans and decide to travel to as many meets as possible and we haven’t looked back.

To this day, I still do not remember how he did his first race.  How could I see it through my tears of pride?

Life is good!

Jude

Twitter: @JudeTheFoodie

Facebook: JudeTheFoodie.com