Just What is Cerebral Palsy?

I'm writing this post because I think a lot of my family and friends have no idea what to say or how to act around Hailey. I think a lot of you are unsure just what Cerebral Palsy is, and that makes you nervous or hesitant to ask about her. You don't know what to say so instead you say nothing or you are afraid you may ask something that you shouldn't ask. Maybe some of you are afraid to share with us your child's accomplishments in fear that we would feel bad that Hailey has not reached the expected milestones. Don't be afraid. We have totally accepted Hailey's disability and we are also very proud of her and her accomplishments. Cerebral Palsy is a result of an episode that causes lack of oxygen to the brain. In short it means that the brain doesn't send the right message to the muscles. There are four different kinds of C.P. Spastic, Athetoid, Ataxic and Mixed. Hailey has Athetoid C.P (Involuntary and uncontrolled movement). C.P. is also not curable and also not contagious. Some children with C.P. may not be able to walk, talk, eat or play the same way that other children do. But, in so many ways Hailey is just like other little girls her age. Hailey likes to eat cookies and ice-cream, she likes to swing on the swings in the park and she loves to go down the slide (all by herself I might add) with someone at the top to lie her down and someone at the bottom to catch her of course. She loves watching The Mickey Mouse Club House and doing the hot dog dance. She loves to be read to and she loves to learn. She loves music and swimming, she understands exactly what you are saying to her, even if she can not respond with words. She is learning sign language and other ways to communicate with us. She has feelings just like any other able bodied child. Talk to her the same way that you would talk to them, treat her the same way that you would treat them, and most of all, love her the same way that you would love them. I guarantee she will bring joy and love to your heart the same way that they do, the same way that she has filled our hearts with joy and love.

Hailey Crawled Yay!

It's a beautiful day in the neighborhood, a beautiful day in the neighborhood....Oh I'm sorry, was I singing? You bet I am so happy today, unlike yesterday when I was about to take Hailey for swimming and found out that it was closed because of Evacuation Day. I was very disappointed because swimming is a very important therapy for her and I really hate to miss it. Anyway, later that night Natalie informed me that Hailey had crawled on her hands in knees all the way from the living room into kitchen!!! Yeah Hailey! My only regret is that I wasn't there to see it. That's o.k I know that if she did it once, she will do it again especially if this means that she can crawl into the pantry and get her own cookie.
Soon after I got the news about Hailey my bossed called me, of course I was still beaming with excitement. I told him the good news and he said "that's because I was wearing the green ribbon" Obviously that is not the reason why Hailey had crawled but there is something to be said about the love and support that people can give to someone like Hailey, If we are all standing by her side cheering her on and encouraging her every step of the way (or in this case, crawl behind her....whatever it takes) what a tremendous force that would be. So I would like to thank all of my co-workers, family and friends who are sporting their green ribbons in support of Hailey and other children with Cerebral Palsy and remind everyone that Saturday is Cerebral Palsy Awareness Day. If everyone tells just one person that they know Hailey and she is someone with C.P but she is "NOT INVISIBLE SHE IS BEAUTIFUL" I would really, really appreciate that.

Conductive Education

As many of my friends already know, my family and I have been seriously looking into an alternative therapy for Hailey. Unfortunately we have decided to wait until next summer. Although I believe we should begin this therapy as soon as possible. Hailey just has too much going on this year. She will begin school in June (a tremendous transition for her from her current Early Intervention Program) and we are now beginning to train on a communication device for Hailey (A blog for another week) Conductive education is an intensive, multi-disciplinary approach to education, training and development for individuals with cerebral palsy. It is generally a five week program and it is not covered by insurance. We have enough savings for the first session but eventually we may need to look into having some kind of fund raiser for repeated therapies as it usually takes more than one session. Because there isn't a facility in Boston we had to look out of state for this and we have looked into three different locations. (For my fellow blogger parents of children with CP and spina bifida) I believe that this therapy may be one of the determining factors of whether or not Hailey walks. If she doesn't walk that's o.k. but we as a family have to know that we have exhausted all avenues. The first facility that we looked into was located in Winter Park Florida. I thought this would not be bad, I actually have a home in Florida and the kids would have somewhere to stay for 5 weeks, great that would save some money on expenses. After researching the next two facilities the one in Florida began to look a bit inferier. So we looked into one in Pincton Ontario. Although this was the most expensive of the three, somewhere in the ballpark of $9000.00 for the five week program that they recommended. I actually liked this one alot and you can actually live there in the facility for 5 weeks. Not too bad. This one to me looked pretty darn good. Then we looked at the one in Grand Rapids Michigan, this was half the price and seemed to have a program equivilant to the one in Canada. If you go to their facility you can also stay at the Ronald Macdonald House and a shuttle will bring you back and forth to the CE facility. In our opinion This is the one that looked to be the best program for Hailey. We now have a year to continue to explore and raise money before we make a definitive decision. In The mean time we will start to take our cue from Conductive Education Therapy and attempt to make some of the furniture that they use in their programs. If any one has any information on CE please post a comment. Also, March is Cerebral Palsy Awareness Month and I hope that all of my family and friends will be wearing green ribbons to show your support and love for Hailey and other children with her same disability. If you need to know where to get one I hope to be putting a list of locations up on my blog as well as on facebook in the next few days. if anyone who knows of a business that would let me put a jar of ribbons on their counter please let me know. Thanks, looking forward to hearing from you all soon. :o)

Another shot of The South End

8x8 oil on canvas board
$50.00

My weekend "recap" with Hailey

I spent a very satisfying weekend with Hailey. Giving Tommy and Natalie a short time alone is always my gain. However fitting everyone in my bed is a bit challenging. Usually when I go up to bed it is just me and Benny (my very spoiled yellow lab). Most nights Benny jumps up and lies on the bottom of the bed until he hears my husband coming up the stairs, then he quickly grabs his spot in the bed along side of me, head on his pillow and pretends to be asleep. My husband gets in bed and says "oh no you don't" and Benny grumbles hmmmmXO!%! and reluctantly goes back to the bottom of the bed, he knows that Tom will kick him off the bed if he doesn't, Tom can't stand it, he only puts up with it for me. Saturday night Tom comes up to get in his bed and between me on my side, Haily stretched out in the middle and Benny kind of at the bottom but inching his way up a bit, poor Tom only has bits and pieces of the bed to fit himself in, it was like a jigsaw puzzle. I pretend to be asleep because I don't want to give up what little space I had. Finally with much strategy Tom manages to fit himself in the bed and I hear him grumble "you have to be a contortionist to sleep in this house" I silently laugh to myself and think, thank God I have such a good husband.

Sunday morning I decide I am going to go food shopping and really take my time and make this an educational but fun trip for Hailey. We get to the supermarket and while going through the fruit aisle I hand Hailey a bunch of bananas, I say "mmm YELLOW bananas". She holds them as best she can, turns and drops them in the back of the carriage. I say "good job" She looks up at me and signs the sign for cookie. I say "I know honey we'll get a cookie later" and I keep strolling and I hand Hailey a pepper and I say, "mmm GREEN pepper". Hailey drops them in the back of the carriage. She looks up at me and gives me the sign for cookies, I reassure her that she will have one later. We get to the cookie aisle, of course Hailey spots the blue package that she is sooo familiar with... oreos. As I try and trick her and sneak quickly past them, her arm extended in their direction I say "Oh do you want cookies" and she smiles at me as if to say yes. I hand her the cookies and say "mmm Blue cookies" she holds them on her lap until I convince her to put them in the back of the carriage. She drops them in back and we continue to shop this same pattern repeated the entire time. (Thank God I didn't need eggs)! The whole time we are shopping i'm wondering how much Hailey is actually learning, is she understanding and retaining anything i'm saying? Then I thought, she is asking me for a cookie every five minutes, she must be wondering the very same thing... Is Grammie understanding anything that I am saying? When we finally get to the check out I start taking the items out of the back of the carriage and placing them on the conveyor belt, I can't help but laugh as I take out the crushed cookies, squished bread and a Mickey Mouse balloon. It is always a fun and educational adventure with Hailey.

Later that day Tommy and Natalie come to pick her up, It is dinner time and I suggest we go to Friday's for dinner, We are trying to get Hailey to interact with other people and also know that she can advocate for herself when she wants something. What she has learned for sign language is rather limited right now, we really need to start learning more words and begin to put sentences together, but since Hailey's signing repertoire mainly consists of the important things in life such as cookies, ice-cream and crackers we will let Hailey order what she wants for dessert. After dinner we tell her she needs to tell the nice man what she wants and she looks him directly in the eye and with her left hand she clenches her fist and gives the sign for ice-cream, of course we have to translate for him, it's easy to miss her subtle signs if you don't know what you are looking for. We clap for Hailey and praise her for her accomplishment. Hailey anxiously waits for the waiter to come back with her ice cream. He keeps walking by with plates of food, but he walks right by her. Each time she is looking and looking, not fully understanding why he is not bringing her ice cream right out. Every time he walks by, Hailey is giving him the sign for ice cream only he doesn't hear her, but we hear her loud and clear. We can't stop laughing. We knew exactly what she was saying. She was saying "hey, get over hear with my ice cream. To us Hailey speaks louder than words.

A Cerebral Palsy Thing

Today we started our day by bringing Hailey to a Doctor's appointment at Waltham Children's Hospital. This appointment was not because Hailey was sick, she was not getting a shot, she was not getting poked and probed, she was simply having a doctor look at her to see if her Bodysuit (what she wears to help her core strength) needed to be adjusted or if she would benefit from a new suit. However Hailey still screams bloody murder by the mere site of the doctor. I often wondered if she will ever get over this fear of the doctors, but the more I read about Cerebral Palsy the more I learn that it is in fact a Cerebral Palsy thing. What I mean by that is that Hailey is very uncomfortable with anyone outside of her immediate family. She has a very difficult time with strangers, with playmates and even at family outings or holidays when a lot of family get together. From joining networks like The Cerebral Palsy Awareness Group, and Exceptional Family T.V. I was able to learn that this is not uncommon for children that share her disability.
I thought that I would try and get Hailey used to being with people, after all she is starting school this summer and I think that this is going to be a very big adjustment for her, even traumatic initially. So off we went to story time at the Blue Bunny, I thought this would be a piece of cake, Hailey loves to read books. How bad could it be. Hailey watched all of the happy children skipping in the door and finding their bright colored floor mats, crowding all around her as they plunked themselves down on the floor. Hailey screamed and pointed to the front door. I wasn't about to let her get her way, I distanced myself from the group and tried to change her focus by showing her toys and trying to read her a book on the far side of the room. I must get a new bag of tricks, I had no choice but to leave, it was too disruptive and unfair to the other children.
How is Hailey ever going to transition into the classroom? I worry about this everyday. She is learning sign language but it is her own personal sign language. Because her motor skills are affected, unless you are around Hailey everyday you are going to miss the couple of signs that she has learned... I know that Hailey does not speak but her beautiful smile says more to me than words could ever say.

To Tommy and Natalie with Love...

To Tommy and Natalie with Love...

She has a voice, but doesn't talk
She has two legs, but can not walk.
Her eyes however, she can see,
the love that's filled inside of me.

God chose you to lead the way,
and help her through the toughest days.
The strength and courage still remain.
Our lives will never be the same.
Just be patient and be true,
this precious child depends on you.

Love Always,
Mom/Grammie copyright by Janet Harrold

"Hailey"

oil on canvas board
11x14
one of my favorites

The South End

8"x8"
original oil on panel
$75.00 sold Thank you!

Two Oranges

Original 8" x 8" oil on canvas panel, $50 (+ $12 shipping)

Five Pears

Original 8" x 8" oil on canvas panel, Five Pears $75 (+ $12 shipping)

This will be the first of many paintings posted that will benefit Hailey's therapies. Subscribe via email or check back often to see different works. Commissions also welcome!!!

I wondered when the next time that I would write in my blog would be, after having Hailey here for a sleepover last night it would have to be now. A typical day for me usually starts at about 5:30a.m. This time of year it is pitch black and freezing outside. Most of my friends say that I am a creature of habit, that I work too much, and I barely know how to relax. This morning was totally different. As I lie beside Hailey patiently waiting for her to wake up. I can't help but pause... savor the moment, I really miss her since the kids moved out a few months ago. She looks so peaceful (they say that kids with Cerebral Palsy are only still while they are completely at rest) as the morning sun shines on her beautiful face, I can't believe that I am still. Hailey certainly has a way of making me slow down. I wonder if she will wake up in a good mood or if she will be crabby when she finds she is not at her new home. A little bit of time goes by and she begins rubbing her eyes. As they slowly begin to open, I look at her and say "good morning sunshine" and though Hailey is considered non verbal at this point, she looks at me, and in a very soft tired voice she says the one word she can say clearly... "Hi". I say "Can Grammy please have some Monday morning kisses?" I lean over to give her a little kiss and instead, she puts her hands together and signs exactly what she always signs when she sees me. Hailey wants me to read her a book. I tell her " No honey, we can't read a book right now, we have to go eat, Hailey has an 11:00 appointment with one of her therapist. I'll never have enough time to read, cook, feed her and get us both dressed and be on time for her appointment if I start reading. I need to be firm. I shouldn't give in. Again... Hailey gives me the sign to read a book. How can I say no when it is so difficult for her to communicate. I can't.

That was this mornings news, did you hear Thursday nights news? If most of you are on facebook you've heard, but for those who are not let me set the scene. It was Thursday night, the kids just got home put Hailey down on the floor and went to get their pajamas on, when they came out of their room a minute later, Hailey was up on her knees!!! That's right, she rolled over curled her body and lifted herself up on her knees for the first time. This was such exciting news! Though I said I will not cry for Hailey anymore, I couldn't help but shed a silent tear when they told me. It's little things like this that we take for granted everyday. But for Hailey this is huge, My family is filled with hope.

For those of you who know Hailey personally, you know that she is a fighter. She fought to come in this world, she then fought to stay in this world. It's because of her will and determination that I will never, ever underestimate what Hailey can accomplish. I am so proud of you Hailey! xoxo

Painting for Hailey

For those of you who know me well, know that I am not so computer literate. This is my first attempt at a blog (thought that I would practice for my soon to be website).

There is an online art magazine that I follow that is always looking for stories about artists and how and what inspires them to be creative. I recently contacted them about what inspires me. As you all know I have been dabbling in art for many years now, but lately I have been driven by my beautiful granddaughter Hailey. Hailey has always loved to be read to. Her love for reading has inspired me to write a children's book for her "ABC's Flowers and Trees A Walk in The Public Garden's" What a lot of you who have read my book don't know is that there are a lot of hidden things in the book that are specific to my family, for example: The A is for Artist page is supposed to be me painting en plein air. On the page M is for Magnolia page, there is a man sitting on the park bench reading "The Boston Globe" where my husband is a pressman and has been for many years, and on the V is for Violin page, the wandering minstrels are in reference to my son (Hailey's dad) being a music industry major at Northeastern University. Not only was this a book written for Hailey to grow with but a book that has specific meaning to our family as a whole.
Anyway, after telling red easel about what inspired me to write my book and how from this day on any money raised from selling the book to doing author events, any paintings that I sell, anything at all to do with selling my artwork, all of the money raised will go directly to Hailey's many therapies that are not covered by insurance. Red easel asked me to write a story for them, and they will publish some of my work in their gallery and also set up a donation button for Hailey's cause. How exciting! Another thing that I have begun doing in 2010 is putting a discretely placed green Cerebral Palsy Awareness ribbon in all of my newly completed works. So if any of you have received or purchased a painting from me recently or in the future, look for that ribbon and feel great about contributing to a good cause.
Bottom line here is that I am doing something I love to do while trying to help someone that I love very much, and for that I am totally inspired, driven and committed.