Silent Sunday
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Silent Sunday
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Silent Sunday
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Silent Sunday
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Rolling with the rest of us
Today is World Cerebral Palsy Day.
World Cerebral Palsy Day is a social movement, of, by and for the CP community. The vision of World CP Day is to ensure that everyone with CP has the same rights, access and opportunities as anyone else. Through World CP Day, we will join together to combine our resources, energy and knowledge. We will share our stories and best ideas. We will tell the world … I AM HERE!
I know it has been a year since posting. I really feel bad about not keeping up with this page. Life has been busy to say the least. This year for World Cerebral Palsy Day, I wanted to share with you some thoughts on access and opportunities for kids with CP, mainly my kid.
Last year Mattie’s school had a Fun Run as part of their fundraising program. Having a “Fun Run” school fundraiser with a kid that can’t walk, let alone run is… a challenge. It’s always difficult to figure out how to make sure Mattie is included; this however might have topped the list. What else can you do but embrace it, come up with a game plan and make it happen. I could not be more proud of Mattie for walking her lap. (Side Note: I am thankful that Mattie’s school has opted for a Walk – A – Thon this year).
I am here, walking my lap
There was a time when I dreaded having to go to the grocery store with Mattie. Mattie had gotten too big to fit in the grocery cart. A trip to Publix consisted of having to push a cart and her in the wheelchair at the same time. This is not an easy task to accomplish. I finally decided to ask our local Publix if they would be willing to provide a Carolyn Cart (special needs grocery cart) for the store. The general manger was more than happy to put in the request. Several months later, Mattie and I head into to Publix and as we are walking in, I am greeted with a shiny new Carolyn Cart. I almost cried. It’s the little things.
I am here, using my special grocery cart
I have always believed that we would figure out a way to make things happen for Mattie. I never want her to be excluded from anything just because she is in a wheelchair. Sometimes we have to get creative…
I am here, heading to the beach
I am here, jumping in muddy puddles
I am here, finding Easter eggs
I am here, swinging on a swing
I am here, riding on the subway
Even if it means carrying her on my back in a baby carrier to get down to the beach, holding her up so she can jump up and down in “muddy puddles”, walking her around so she can find Easter eggs like her brother and cousins, researching what parks have special needs swings since she is too big to fit in a baby swing these days or carrying her on the subway when it is too crowded to sit or have a stroller out. With some planning, creativity and determination we have succeeded most of the time.
Recently, Mattie has decided she wants roller skates for Christmas and wants to go ice skating. When she said this to me I couldn’t decide if I wanted laugh or to cry. I told her what great ideas those were as my heart broke a little. I love that she thinks she can do things other kids can do, but the reality is… there are going to be things Mattie can’t do because of her CP. I am not entirely sure how we can make either of these things happen, but I do know that we will try our hardest.
Throughout the first few years of Mattie’s life, everything seemed so difficult. There was so much worry about how best to help her, what therapies she needed, which surgeries were necessary, how would we find the time and how would we pay for all of it. Then things got a bit easier as we settled into a routine, formed a team of doctor’s we were comfortable with, and began accepting our new life with a special needs child. But now things are starting to get difficult again. Mattie is getting bigger and with that comes new physical challenges. Her wheelchair is bigger now, making it difficult to lift into the car. Some of her caregivers are starting to have difficulty picking her up, leaving a shrinking list of people capable of caring for her. As Mattie gets bigger, we as her parents are getting older, making it more and more difficult for us to physically support her as well. Knowing this trend will continue brings new uncertainties. We have held off buying a house or getting a new car because we aren’t sure what we will need. Do we need a handicap accessible house? A car with a wheelchair ramp? We’ve been saying let’s just wait and see. But the time has come to really start looking into making her life more accessible and in turn, maybe ours a little bit easier.
Cerebral palsy (CP) is the most common physical disability in childhood and is also one of the least understood. Cerebral palsy affects each child differently – no child is the same. As such, Mattie rolls to her own beat. It is not always fast, it is not always smooth, but one thing’s for sure, we will continue working to ensure she is able to continue to roll with the rest of us.
Want to help me build a global movement to change the world for people with cerebral palsy?
Here are a few ideas:
-Come join us as we host the 5th Annual Hope for Mattie Charity Golf Tournament on October 28th. We still have spots open for players, sponsors and volunteers. For more information click HERE.
-Help fund the desperate need for research for treatment and prevention. Some US based organizations that are funding research and leading national advocacy efforts for the CP community are:
CP Now, LetsCureCP, Reaching for the Stars. A Cerebral Palsy Foundation, Cerebral Palsy International Research Foundation
-Make a direct impact on Mattie’s life and help fund her next round of therapies by making a donation HERE.
-To learn more about Cerebral Palsy, check out this Slideshow. To learn more about Mattie watch her video HERE.
Help us celebrate World Cerebral Palsy Day and take action for the 17 million people across the world that are here, living with cerebral palsy. Thank you!
Thank you!
We just wanted to say THANK YOU to everyone who came out, sponsored and volunteered last Saturday for the Hope for Mattie Charity Golf Tournament. We had an amazing day! We raised enough money to get the much needed shower and toileting equipment Mattie needs and her therapy will be covered for the next 3 months! You guys rock!
What is even more amazing is the fact Mattie was able to walk into the room, using her walker and welcomed and thanked everyone for coming to “her golf tournament”. The progress Mattie is making is because of you. I get tears just thinking about all the support she/we have received over the years. We are so blessed. Thank you from the bottom of hearts 
Check out Mattie’s new video showing her progress!
I am Here
Today is World Cerebral Palsy Day.
World Cerebral Palsy Day is a social movement, of, by and for the CP community. The vision of World CP Day is to ensure that everyone with CP has the same rights, access and opportunities as anyone else.
Cerebral palsy (CP) is the most common physical disability in childhood and is also one of the least understood. Doctors are reluctant to make a diagnosis, too many people receive ineffective therapies, too many individuals and their families lack access to basic information and support, too little money is being spent on research, and far too many societies keep people with CP out of sight, out of mind and out of options.
It is time to close the gap between the everyday circumstance and the real potential of people living with CP. Through World CP Day, we will join together to combine our resources, energy and knowledge. We will share our stories and best ideas. We will tell the world … I AM HERE!
I am here, at a Ray’s game with Mommy
I am here, catching beads at Gasparilla.
I am here, working hard at school
I am here, striving to maximize my potential.
I am here, surrounded by my family
I am here, living a life very much like yours. I may have a few more hurdles than most, but I am here . Hello my name is Mattie Spinner. I am 5 years old and I have cerebral palsy.
Want to help me build a global movement to change the world for people with cerebral palsy?
Here are a few ideas:
-Tonight, join me, my friends and family at Piquant Epicure & Cuisine in South Tampa (October 5, 2016 from 6-9pm) for a special evening benefiting United Cerebral Palsy of Tampa Bay. Come enjoy appetizers and learn more about cerebral palsy and how we can all be a catalyst for social change. One free cocktail with a cash donation of any size.
Although not required, all donations received will benefit United Cerebral Palsy of Tampa Bay, a non-profit organization dedicated to guiding and assisting families and individuals with any disability or other barriers to achieve their full potential, resulting in community inclusion and independence. If you are unable to make it and would still like to donate, please click HERE.
-Come join us as we host the 4th Annual Hope for Mattie Charity Golf Tournament on October 29th. We still have spots open for players, sponsors and volunteers. For more information click HERE.
-Help fund the desperate need for research for treatment and prevention. Some US based organizations that are funding research and leading national advocacy efforts for the CP community are:
CP Now, LetsCureCP, Reaching for the Stars. A Cerebral Palsy Foundation, Cerebral Palsy International Research Foundation
-Make a direct impact on Mattie’s life and help fund her next round of therapies by making a donation HERE.
-To learn more about Cerebral Palsy, check out this Slideshow. To learn more about Mattie watch her video HERE.
Help us celebrate World Cerebral Palsy Day and take action for the 17 million people across the world that are here, living with cerebral palsy. Please and Thank you!
Something Special
Mattie has started Kindergarten! Not just any Kindergarten class but a regular class at the same school as her brother and cousins! Jim and I have worked hard to make this dream a reality. It has been extremely important to us that Mattie have the same opportunities as her brother. We have spent countless hours researching, studying, making calls and advocating for her, and with the help of her school therapists, pre-school teacher, and the other 10 ladies that made up our IEP team… we did it. I am not going to lie… it was stressful to say the least, but the end result is Mattie is right where she should be. We are so grateful for everyone that has been involved in the process and helped to make this transition as smooth as possible.
It is not often that I cry but today the tears poured on my way to work. As I was walking Joba and Mattie to class this morning, at least 8 kids stopped to tell Mattie “hi”. I was slightly surprised by this as Mattie is in a new school and doesn’t know any of the kids. It turns out the letter we sent out to Mattie’s Kindergarten class was spread throughout the school. The letter was written “by Mattie” and explains how cerebral palsy affects her. At the end of the letter she says she wants to be your friend and asks that you say hi. I want to thank all of the amazing parents that took our letter to heart and taught their children not to shy away from a person with a disability. It means a lot to us and to Mattie.
With Mattie starting school full time it is coming with many new adjustments. The biggest one being no naps! A full day of school followed by hours of therapy makes for one tired girl. I am struggling a little bit with this. It is important for Mattie to continue to get the therapy she needs but at the same time, is it too much? I just don’t know…
Our most recent trip to New York this summer was very eventful! We were able to see Mattie’s leg doctor and have her fitted for new leg braces (thank you to everyone that made this happen through Run for Hope 5K and Lindsey and Russ’ Boston Marathon Fundraiser). What was the most surprising aspect of the visit to Dr. Jordan was he had nothing bad to say. It was the first time EVER that a doctor has told us he was happy with Mattie’s progress and felt that Mattie’s most recent surgery on her legs was very successful! What a relief! He also thought Mattie was close to being able to stand on her own! Jim and I got in the car after the appointment, looked at each other and laughed. It felt great for once, to leave on a good note. We continued on to NYC to see Mattie’s ABM therapist. Mattie had 7 ABM sessions while we were there. After coming home, Mattie has continued to hold her back upright and is able to sit more easily in different positions. She has really retained what she learned from those lessons! We will continue to go to Gainesville once a month for ABM therapy sessions and are hoping to make it back to NYC for more ABM lessons in November.
It is never easy juggling life, especially a life that involves a special needs kid. Some days are harder than others but at the end of the day when Mattie is giving us hugs, kisses, and noses, I know that every second of the hard work is worth it. Together we are helping this little girl grow into something special. God has blessed us with such an inspirational daughter. I could not be more proud of her.
Mattie’s next fundraising event, The 4th Annual Hope for Mattie Charity Golf Tournament is taking place on October 29th 2016. We are looking for players, sponsors, and donations for the silent auction. All proceeds from this event will help fund Mattie’s ABM therapies and a special needs toileting system that she so desperately needs. For more details on the The 4th Annual Hope for Mattie Charity Golf Tournament and how you can help, click HERE
How far we have come
Yesterday at the Doctors Office
9 Year old boy: Why is she in a wheelchair?
Me: She was born with cerebral palsy. Her brain has a hard time telling her legs what to do
9 Year old boy: So she can’t run or jump or climb?
Me: Not exactly, she needs help to do all those things
9 Year old boy: Will she walk when she is older?
Me: She is working on it.
Mother: Brandon!
Me to Mother: Its ok, I don’t mind answering questions, most of the time kids are more curious than mean
Brandon: That makes me sad.
Me: Why?
Brandon: Because she can’t walk
Me: Don’t be sad. She is not sad. She doesn’t know that she is different. She actually thinks she is a princess with really cool light up wheels
Brandon: Is she really a princess?
Me: (I wink at him) Yes, she is!
Brandon: Well she is pretty like a princess
Brandon to Mattie: You are pretty
Mattie: (continues to ignore conversation because she is watching a princess movie on my phone)
Nurse: Mattie Spinner
Brandon: Thanks for talking with me
Me: Thanks for talking with me (smile to myself and think about just how far I have come)
This morning:
Mattie : Mommy – I want to hear the princess songs
Mattie: Mommyyyyyyyyyy – Belle first then Rapunzel (giggle) then Tianna
Mattie: Mommyyyyyyyyyyyy – Did you hear me? I want to hear the princess songs
Me: Ok Mattie, give me a second to get to a red light
Mattie: Mommy – Put it on!
Me: Mattie, Is that the polite way to ask for something?
Mattie: Pleaseeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee can I hear my songs?
Me: (music is turned on in order: Belle, Rapunzel, and Tianna)
Mattie: (giggles) I love the princesses. Mommy – Did you know I am a princess? My name is Mattie the Mermaid and I am the most beautiful princess mermaid ever.
Me: Yes you are babe!
Mattie: (starts singing along with Belle)
Me: (smile to myself and think about just how far she has come)
3 years ago if you would have asked me if Mattie would be walking by 5, I would have said absolutely! I know I am a positive person, but I really did believe it. Now here we are, making birthday plans for her 5th birthday (ok I know it’s still 2 months away but I am a planner!) and Mattie is still not walking. It’s definitely not from lack of trying, surgeries or the countless hours at therapy. There was a period in my life that I felt stuck. Mattie was not really moving forward and not really going backward. I was struggling with my feelings about the progress Mattie was making physically. I was struggling with accepting a different path, a path that included her not walking by 5.
There were days I wanted to punch a wall out of frustration and days I wish I could call out sick and pull the covers over my head and cry all day. I never did these things although for my sanity (and Jim’s) I probably should have. I kept my head up and continued to push both myself and her forward. Somewhere along the way I finally accepted that Mattie would do things at her own pace and no one else’s. I finally accepted that Mattie would not be walking at 5. It has taken me a long time to come to terms with it. It just is what it is and just that. Mattie is almost 5 and can’t walk on her own AND I can finally say… I am OK with this.
I think part of the reason I am moving on is the fact that Mattie has continued to develop in so many other ways. Her vocabulary is right on target. She has memorized complex songs and can sing them the entire way through. She is actually very witty and loves to say and do things to make us laugh. She can maneuver around an iPad better than me. She is super loving and will come give me a kiss and tell me she loves me when I least expect it. She loves when I hold her and dance. She thinks she is a princess and I never correct her.
Although I have accepted Mattie will not be walking by 5, I haven’t given up hope that Mattie will walk one day. She is closer than she has ever been. The surgery this past December has really helped her loosen up. She bends her knees like she should and she is starting to realize that she has 2 legs that can do separate things. She has been able to pedal a bike all by herself. Mattie continues to rock her crazy therapy schedule of speech, horse therapy, PT, OT, and ABM all with a smile on her face. So we all push on, in hopes that Mattie, the mermaid princess, will someday be able to walk, while winning each day at life.
Embrace it
This year has gone by in a blur. Starting with an eye surgery this past January, countless therapy sessions (162 just this year alone), meeting a life coach and now ending with another surgery in December. This is our life. Welcome.
Mattie had a surgery called SPML almost 2 years ago. Only 2 doctors in the US perform this type of surgery. SPML is where the doctor goes in and pokes tiny holes in the fascia of the muscles. This helps to expand the muscle so it’s not so tight without having to actually cut into the muscle itself. Mattie originally had it done on her hamstrings and behind her knees and ankles. This link will explain it in a little more depth.
After surgery, we kept having issues with Mattie’s knees. She would hold them straight and not want to bend them. We spoke with her surgeon and her orthopedic doctor numerous times and everyone agreed to “wait and see” hoping she would work it out. After seeing Mattie’s ABM therapist in NYC this summer & with a push from Mattie’s PT, we decided it was finally time to do something about it. A week later, I had another phone call with the surgeon. We decided to move forward with a second surgery. He is going to release the rectus muscle and put an alcohol block in that nerve with the hope that Mattie will not be so tight. Although I try not to have regrets, I wish we would have done this sooner. As much as it sucks to have to put her through another surgery, I have faith that we are making the right decision and hope that this surgery is one more step toward our ultimate goal of Mattie walking.
***
This morning I told Mattie that we were going to Texas in December to see her Doctor who was going to fix her legs. Mattie replied with “My legs are sick”. I smiled at her and said he would help her to walk one day. She replied with “I have a walker that helps me walk”***. Ahhh to be so innocent and so unaware. Why can’t we all be like that? I am afraid the innocence that we see in her will start to go away in the next few years. She will realize that she is different. She will realize that she can’t do some of the things other kids can do. We are trying to teach her that hard work and perseverance pay off, and are determined to make sure she is confident, strong and resilient.
As we make our way through this special needs journey, I hope that we can teach those that are scared of disability that it’s ok. Disability happens, even when you least expect it. It is a part of life. We have learned to embrace it. We will continue to hold our head up, smile, and appreciate what we have. We will continue to set an example for our children, family, friends and complete strangers that no matter what life throws at you, approach it with love and kindness because at the end of the day, isn’t that what it is really all about? God gave us a miracle and every day I thank him for blessing us with this beautiful, spunky, witty, little girl who gives the best hugs and melts my heart with her I love you’s.
Today is World CP Day. For more information about this day click HERE. For more information about Cerebral Palsy click HERE
*** Before everyone goes crazy with the walker picture, I just wanted to disclose that Mattie needs max help when using a walker. Usually someone has to stand behind her when she is using it. This picture was taken at a moment where she was able to balance herself and walk a few steps on her own. Progress!
Hope For Mattie 