To The New Parent Whose Child Has Cerebral Palsy

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Dear Parent Who Just Learned Your Child Has Cerebral Palsy:

Hi there, I’ve been where you are…The feeling of shock set in yet?  Just breathe.  I know this was not the way you had it planned in your head.  Your child was suppose to be healthy.  This new reality can be terrifying, but it won’t feel like that forever.  You are just taking a new journey with a different path.  How you travel down that path depends on you. Over the next little while, a lot information will be thrown at you, so you need to be in the present.  You need to understand what is said to you, and what you don’t understand, question it.  So much information….I found it so overwhelming at first, but it gets easier.  Take it a day at a time.

There will be a lot of medical professionals you will meet.  They will become your child’s rehabilitation team. Cerebral Palsy is not curable, however with the right team in place, together you can help your child reach their full potential.  You can be reassured, your child’s CP, will never get worse.  You will meet a pediatrician assigned to your child (if you haven’t already), a pediatric neurologist will oversee her development for the next number of years, then she will receive services from physiotherapists, occupational therapists, speech and language augmentative therapists if needed.  You will be assigned a social worker, if this service is not offered, fight to receive it.  Your social worker can assist in councilling  your family, providing information on your child’s diagnosis, assist in obtaining funding for equipment, respite services, and other valuable pertinent information. You may also be introduced to a surgical team that consists of an orthopedic surgeon, who can help treat any hypertonic tone (tight muscles) or hypotonic  (floppy or loose tone), a gastrointestinal specialist and surgeon, who will help treat any digestive issues your child has.  This can range from minor to severe acid reflux or GERD to swallowing problems that hinder your child’s ability to eat.  Your child will also have their eye sight and hearing tested.  If there are any issues that arise, your child will then be monitored and treated by the corresponding  specialists. 

With this new journey, you will face some challenging times.  You may be going through a grieving process.  Yes, I said grieving….whether or not you can admit it or understand it, you are emotionally mourning the “loss” of the “plan” you had.  You had planned to have a healthy child.  You need to talk about and face these very real emotions. This is where you will feel very grateful for having a social worker amongst your child’s team.   They offer wonderful councillng services.  It won’t be easy….you may feel guilty for having these feelings.  I’m hear to tell you not to be.  I myself went through this, it helps to acknowledge what’s happening so that you can accept your new journey. 

Advocate, advocate, advocate!  You are your child’s voice in a society where she needs to be heard.  This may look like making sure she  will have an Educational Assistant, someone who will give her support in learning when she starts school.  You may also need to advocate for specialized equipment to help improve your child’s quality of life.  For example, a wheelchair or walker. My point is, you are her biggest supporter and can’t be afraid to speak up when needed.  If you don’t advocate for her, who will?

Give your child every opportunity!  No one has the ability to predict what the future will hold.  Doctors are eager to provide you with lots of possibilities or what I call, the “doom” and “gloom” of what your child’s future will be.  My advice, take that with a grain of salt.  You will also want to throw the entire idea of “milestones” out the window. Your child will achieve her accomplishments at her own pace.  Be present in the here and now, because when these accomplishments happen, there is no better way to describe them, other than miracles!

You will feel moments of pure joy and will experience the beauties and wonders of life, like no one else.  You will begin to slow down and appreciate these gifts through the eyes of your child.  You will have rough, difficult moments, but hold onto the miracles, they will provide you with the hope to surpass these challenging times.

Well Parent, your journey has begun.  You have been blessed with a beautiful gift.  Take your journey one step, one day at a time.  Your life will forever be changed for the better.

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Mom Guilt

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Mom guilt.  It’s sewn into our mental fibres, the moment our little bundles are placed into our arms. In that moment we make the promise to do our best by this beautiful tiny gift, that will become the purpose of our existence.

I first experienced “mom guilt” when my son was born.  I was the first time Mommy, who read every book on parenting, when baby arrives, the how to’s  of nursing,  the ten principles on how to make your baby sleep through the night, and any other how to book that I could get my hands on.  I thought I had this Mommy thing in the bag!  I was prepared and ready.  You can imagine my surprise, when my son arrived and I immediately tried to breastfeed,  and nothing happened.  I mean, literally he wouldn’t latch and if he did latch, he didn’t properly latch. I tried everything…from positioning him differently, to hooking myself to a mechanical breastfeeding pump…I looked like a freaking dairy cow!  By this point I was exhausted, depressed and my nipples looked like they had been run through a cheese grater.  I had hit rock bottom.  Now I know some of you experienced Breastfeeding Moms will read this and begin disecting the details  and want to make recommendations on “things I should have tried”, please don’t. Not only am I way beyond this point in my life, but I am also ok with my decision. Now getting back to where I left off.  It got to a point when I knew this breastfeeding thing wasn’t going to happen and then an immense rush of guilt fell over me like a blanket.  I felt like a complete failure!  Every book, every piece of literature I had read up to that point stated this was the best nutrition for my baby’s development, prompted higher IQ scores, boosted their immune systems, and made them less likely to develop frequent ear infections, amongst other wonderful things; and now, here I was this mother who couldn’t give her baby, what should come naturally, the best form of nutrition possible.  I had to except the horrifying fact (at least that’s the implications I felt ) my baby would be bottle fed…da da da (insert gloomy sound affect here). 

I would talk to other mothers and listen to their stories of how “nursing came so easy” and would be secretly loathing their existence. In my mind I’d be like, “if you only knew”.  Then that blanket of guilt would reappear and I would be beating myself up, saying in my mind, “you didn’t try hard enough”, when looking back, I honestly couldn’t have tried harder. 

I never thought I would get over that feeling of guilt, but it helped when I had a conversation with a very wise woman….my husband’s grandmother. I loved this woman, but even more once these words left her mouth. She said to me, “you are his mother and know what is best.  Relax, because if you are stressed, he can sense it, besides, I fed all my kids Carnation canned milk and look how good they all turned out.”  Honestly THE BEST advice I ever received and to this day, it not only makes me smile, remembering those words, but when the “mom guilt” peers it’s little dark eyes, I replay that conversation in my head. I remember to not sweat it, I am their mother and doing my best IS enough and the same goes for all you mothers that beat yourselves up.  You are doing great jobs!  You ARE doing enough because simply by questioning if it’s enough, you are loving your children and wanting only the best for them.

For the record, my son is now 10 and he is a very intelligent, happy, and healthy young man, who makes me proud each day…even if he was a bottle fed baby!

Happiness Can Be Found in a Pumpkin Patch

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Today we took our three kids pumpkin picking.  This is has been a tradition of ours every year, before Thanksgiving.  The kids love putting on their rubber boots, knowing at some point, they will be knee high in sticky mud picking the best pumpkin in the patch.

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Early on in Olivia’s life, my husband and I made a choice.  A choice that no matter what we did as a family, Olivia would never miss out and we would do our absolute best to make sure she got to participate in everything our other two always do.

Sometimes we face some challenging circumstances. Take today for instance, when we ventured through a very rough and bumpy pumpkin patch with an adapted wheelchair stroller.  Good thing Olivia is a bit of a thrill seeker because we were basically four wheeling that bad ass piece of equipment through that patch!

Olivia didn’t mind.  In fact she loved it!  Every bump she could feel was like an entirely new experience for her.  You could see it in her eyes and in the way she smiled the hugest smile that her little face could produce.  Sure she was happy to be picking out a pumpkin, but nothing could surpass the feeling of the wind in her face and the jiggly, bumpy ground that was shaking her body into tickles.

What an experience it is to see the enjoyment of life through her beautiful  expressions. She somehow helps to bring out the happy in those around her, without ever saying a word; yet communicates it beautifully to their soul.

I am so thankful to be the Momma to my three beautiful, adventurous, silly, equally unique, sometimes impish, little munchkins.  There are days that can be challenging and test me beyond my limits, but then there are days that make me happy, like a bumpy, jiggly, tickle my body kinda bad ass four wheeling  ride through a pumpkin patch!

Brother is spelled: L-O-V-E

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This blog is inspired by my son Nicholas….

Today, while visiting my kids school, I walked down the hall by Nicholas’ s classroom.  I noticed on the wall, outside of his room was a beautiful Thanksgiving Day display.  Each student was asked to write about, “A Time I Was Thankful”.  As I read through the many entries, some were thankful for their families,  some for their pets, and others for their friends and many other wonderful things.

I came across Nicholas’s entry and it took my breath away.  He begins by saying he is thankful for his Mom and Dad and our dog, Jake.  Then he goes on to say how much he loves his two sisters and how thankful he is for being a big brother, but the sentences that warmed my heart and took my breath away were, “I am thankful when my sister, Olivia was able to walk with a specialized walker and go to school.  I was very happy to be a big brother.  I told my teacher and my teacher told the class.”

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Reading those sentences brought me back to the moment Nicholas first met his sister, Olivia. Nicholas was six when Olivia was born.  He remembers vividly the days spent in the NICU, when he would have to slip on this special cover over his clothes, before he could approach Olivia’s incubator.  I remember how he couldn’t quite reach her, so we would push a little stool to the side of the incubator and he would then climb up and reach in to hold her hand.  Nicholas would stand over her saying he was her big brother and how much he loved her. He never left her side.

Now four years later, he is still standing beside her, only this time, he isn’t just holding her hand, he is also holding her heart.

Nicholas is a soul wise beyond his years.  And maybe that comes from having a younger sister with special needs, he has been forced to look at life through different lenses.   Olivia has taught him to see the value in everyday life and to appreciate the special gifts it has to offer.  However, Nicholas has taught her a few things too… the strength that comes from the love between a brother and sister, and the  devoted loyalty that lies in their bond. Through every hurdle she faced, he was there to show his support through love and encouragement and he continues to be in her corner, cheering her on every step of the way!

Sometimes being a brother is even better than being a superhero~Marc Brown

Getting The Message

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Recently I was fortunate to have the opportunity to speak at my childrens’ school about Cerebral Palsy and why days like World CP Day are important.

From the day of Olivia’s diagnosis,  I knew we needed to spread awareness about this condition.  I’ll admit, until Olivia was diagnosed, I had not known a single piece of information regarding Cerebral Palsy. After her diagnosis I did research online, raided my local library for books on CP, and asked every possible question I could think to her pediatric rehabilitation team.  There were no parent support groups available in my area,  had there been, I would have frequented them…believe me, I was craving to know every aspect of what Cerebral Palsy meant.

So now, almost four years later, you can imagine what a surreal, yet honorable experience it was to educate these young little minds on my daughter’s disability. I explained to them how CP can be caused by lack of blood and oxygen to the brain, causing brain damage and that this damage leads to limited muscle control and function. It is not a disease, and to this date, there is no cure.

I appreciated their attentiveness and their wanting to learn more about their friend, Olivia.  I spoke to them how CP is a large part of her life, however it does not define her as an individual.

I explained that Olivia is very much like all of them.  She has the want and need for acceptance, the desire to be respected, and the promise to be seen for her ability!

This is why days like World CP Day are important.  They challenge us to look for opportunity to continue the message, to spread the word.  It is evident the impact on awareness, how it leads to change and development, whether it be interest in medical research to discover a cure for CP or to invent new and improved devices for individuals affected by Cerebral Palsy. Awareness promotes progress!

When we educate the young people of today, we are breathing hope for success into tomorrow.

Big Sister = Bestfriend♡

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“In the cookies of life, sisters are the chocolate chips” ~ author unknown

The bond between my two girls is nothing short of awesome.  They are more than sisters, they are best friends.
When Olivia was born, Kameron was thrilled to be a big sister.  She wanted to kiss Olivia and hold her hand all the time.  She never left her side. I would hear Kameron in the morning, sneaking into Olivia’s room to talk to her sister through the bars of the crib. Her little whispers to her baby sister were soft and loving.  It was a conversation between budding best friends.

The bond between my two girls continued to grow.  Kameron never “seen” or really cared that her sister was different.   If Olivia had trouble holding a doll during their “playing house” game, Kameron would instinctively help support Olivia’s arm so she could cuddle the doll.  It was at that moment I understood,  Kameron would always be there to support her sister through anything, good or bad.

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The first time Kameron came home upset, another child had said Olivia was too big to be still drinking from a bottle and that when you are a big kid, you aren’t suppose to drink from baby bottles; I sat her down.   I told her, sometimes there will be moments in life, when people will only look at Olivia’s differences and they will say rude and hurtful things about it. I told her, in those moments we need to be Olivia voice.  We need to remind them that being different is beautiful.  Being different is what makes us all unique and special in our own ways.  It is only then, that people will be capable to see beyond the disability, and see her true ability.

Kameron in her “grown up” six year old mind, has turned into an awesome advocate for her sister!  She welcomes questions concerning Olivia, living with Cerebral Palsy and answers them with “matter of fact” responses.  I am so proud of her and I know her sister looks up to her everyday!

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