Wheelchair Acceptance

Well, yesterday was an extremely emotional day for our family. Though some of us handled the news better than others. It wasn’t a total surprise when Natalie called me to let me know the news. Hailey’s PT recommended that Natalie contact children’s hospital about getting her a wheelchair. There has been talk about this in the past, so I don’t know why it hit me so hard, but it did. Like a ton of bricks. I was at work and I just couldn’t wrap my head around it, I couldn’t get myself together and I felt awful when my waves of emotion took the place of getting my job done, but I couldn’t concentrate, I just wanted to go home and go to bed, put the covers over my head and wake up in the morning and discover it was all a bad dream. I felt compelled to drive over to Natalie (because I know she was feeling it even more than me) and hug her and let her know that everything was going to be o.k. Little did I know that she was already headed over to my house with Hailey. She said she was in the neighborhood, but I think that subliminally, she wanted to be with people who love Hailey. She knows that she can always count on us for support. We have all been through so much together as a family. I guess I kind of secretly hoped that Hailey would get to a point where she would be able to walk with assistance, and that one day the only thing that she would need would be help from a canine assistant. So to here from a professional that this is not the case, it just knocked the wind out of me. Now that I have digested and regurgitated the news, i’m o.k. with it. Why wouldn’t I be? As my husband says “Hailey is still the same beautiful girl today, as she was yesterday and will be the same beautiful girl tomorrow” I know this is true. So, as I usually do when I hear new developments about Hailey. I get on the internet and I talk to my blogger friends, the people who understand first hand about what is going on in our lives, because it is also going on in theirs.(special thanks to Cary from about the small stuff) I have to constantly remind myself to stay focused on the positive and not let these barriers swallow me up, and to remember that wheelchairs are just a good way of getting around if a person has trouble walking. I also know that there are others out there who do not have the mobility to use a wheelchair and I should be grateful that Hailey is a candidate for one. Just because Hailey will be using a wheelchair does not mean that we are giving up hope, that one day Hailey will walk. We will continue to challenge her to reach her own personal potential, whatever that may be.

There are just so many unanswered questions: I wonder if Hailey will use a manual wheelchair, or if she would be better suited with a power wheelchair? Will her motor limitations allow her to maneuver the controls like a joystick, or will she have the strength to push herself along. She will have to get used to it in school, at home, travelling etc. It will be quite different. I wonder about how the wheelchair will transport? If we need some kind of conversion van, or lift. I wonder if we will eventually need a wheelchair ramp? I wonder how Hailey will adapt to using this new mode of transportation? My sense and my hope is that she will adapt fairly well. Her strength, determination and perseverance will be tested once again. As I have said so many times before, I believe in Hailey, she has led the way for our family on this uncertain path this far and she will continue to lead us down this bumpy road, only this time she will be doing it on wheels!

The House That Love Built

“The House that Love Built”

The Ronald McDonald House of Western Michigan
Their mission is to provide a “home away from home” for families of children and youth
seeking medical treatment.

As I write this post I am sitting on the front porch of The Ronald McDonald House. It’s a beautiful warm summer night in Michigan, I am feeling extremely relaxed and blessed that I am able to spend the last week of Hailey’s Conductive Education session with her. Thank you to everyone who helped to make this trip a reality. We are very proud of Hailey for all of the hard work that she is doing, and the progress she is making.

This is the house where families meet
to continue their lives, to eat and sleep.
to find their strengths and dry their tears,
to look forward with hope to better years.

Bricks and mortar seldom reflect the true nature of a house. For that transforms a house and makes it a true home, it is not the structure itself, but the love and resilience of the family who finds comfort within. The staff and volunteers here are some of the kindest people I have ever met. Their compassion is genuine and they are happy to help in any way they can. Donated goods, services and volunteer assistance help keep expenses down. The house is extremely organized. It sits on 5 beautiful acres with a walking path, picnic tables, children’s playhouses. It has 17 bedrooms, a kitchen that has four kitchenettes, it has a recreation room, laundry room, dining room indoor play room and great room. I’m sure I have missed a few things. While we were there the house had many different donations of food. The Olive Garden brought food in one night, Starbucks contributes regularly as well as random outside contributions. They offer a shuttle service that can take you to Drs. appointments, to the Conductive Learning Center etc. One of my favorite things is when they bring in therapy dogs!
Occasionally we have thought about a therapy dog for Hailey, but only time will tell if she will benefit from one. In the mean time we can still appreciate and enjoy them. When you stay at the RMDH you get free passes to some of the local Museums, fitness centers and even a zoo.
The suggested contribution is $25 dollars a night , but no one in need is ever turned away because of an inability to pay. If you are considering sending your child to the Conductive Learning Center or if you have to travel a long distance to take care of your child’s illness, I would highly recommend staying at a Ronald McDonald House, currently there are 297 houses in 30 Countries and Regions.

"Good Intentions"

At this time of year reflection on the past and resolutions for the future tend to occupy our minds. Resolutions are hard to keep for everyone. In families with special needs children it is even more difficult. It was my intention to do a post on New Years Resolutions then I decided that I hate making resolutions, to me they feel like added pressure and commitments and who needs more of those? So Instead I decided to post a list of “Good Intentions” I have derived a list of 10 good intentions or things that I will keep in mind in the upcoming year. Then I will post it on my refrigerator as a subtle reminder. Please add your suggestions to the comment section below.

1) Be patient with others who don’t understand and sometimes say thoughtless or hurtful words. Instead of being bitter, channel your energy into educating them.
2) Promote independence by involving your child in everyday activities. Even if it gets done faster by doing it yourself.
3) Ask yourself what small thing you can do in your community to help raise awareness for people who have disabilities.Then make those things happen.
4) Hug your child even more than you do all ready if that is possible.
5) Laugh...If you lost it somewhere along the road, try and find your laughter. It is in fact the best medicine (and you don’t even have to fight your insurance company for it).
6) Get involved in your child’s school. Volunteer to read books, or serve snacks etc. Meeting the parents of your child’s classmates can be a lesson learned.
7) Enjoy the moment. Don’t let the everyday hustle and bustle of life overshadow your precious moments. Savor the moments and enjoy them while they are happening. After all, there is no rewind button on life.
8) Celebrate the smallest of accomplishments. Praise and encouragement are two very important things to do for your child’s development.
9) Share what you have learned in your journey with other parents who have similar struggles, you will teach them and you will also learn from them.
10) Get off the Internet! Make sure that you are prioritizing your time with constructive play and quality time with your child. This is therapy for both of you without feeling like a traditional therapy and so rewarding too. Save the internet for when your child is asleep.

LOVE IS...

LOVE IS...
When you care about someone and want the best for them even if it means putting your own needs last. Love is selfless. Love is when you see the best in a person even if others don’t care enough to take a good look. It is understanding their every word, even though they haven’t verbally said a thing. It is believing in them, when others think things are out of reach. It is appreciating them for who they are and not wanting them to be someone they are not.
These are just a few of the things that define love to me, what is the meaning of love to you?

Different Points of View

Different Points of View --Cards written for the differently abled in mind and in heart.
These cards are never intended to offend anyone.
Last May while I was looking for a birthday card for Hailey, I realized that what the Hallmark cards had to offer for 3 year old girls were popular and current cartoon characters such as Dora the Explorer, Mickey Mouse or generic cards that displayed a prima ballerina in all her grace and elegance, high on her toes in her beautiful pink pointe shoes. That is when I realized that they didn’t have a card that was a bit more specific to Hailey’s grace. I didn’t see a ballerina in A.F.O’s or a little girl celebrating her accomplishments as she walked through a field of daisy’s in her new walker. So I began to write a line of cards so that when I wanted to give my granddaughter a card for her birthday or a card for encouragement, I could chose a card that was a bit more relational to her.
I began to write text and I am happy with the text that I have written. My drawings however have me a bit concerned. I wanted to paint them in soft demure colors and keep them simple and child friendly. After emailing them to a co-worker I am starting to second guess myself here. I would really appreciate everyone’s honest opinion here before I spend more time, effort and money on this particular project. Above are some images and below is the email correspondence of myself and a co-worker. An example of one of my favorite cards will read as follows.

“When it feels like the whole world is staring at you...just smile”

His Response to my images:
Janet i never want to offend or discourage ..but i expect honest responses when i ask for your reaction so....my first reaction is to be disturbed (obviously the subject manner is sad) 2nd they look juvenile like a kid painted them..however that may be the look you wanted to achieve so there is an innocence to them that's sweet i think you wanted the paintings to say i am handicapped but i am somebody and i can achieve to be what ever i want to be and i am ok and just like you....its ok to look at a person with a handicap on this card or in this world but i guess the reality of it is a bit hard to take...this is my perspective maybe someone with a handicap would be reassured or reaffirmed by an image of someone like themselves...i know these are preliminary drawings and dont necessarily represent your end goal but that was my first reaction i guess the girl and the dog is a bit softer and more gentle to look at...and if she had a smile that was ear to ear i would find it a more pleasing image let me know if my response seems fair.
My response:
Hi,
You never offend or discourage me. I asked for your first impression and you gave it to me. i wanted them too be soft and simple....so they didn't look to harsh. I realize it is hard too see but for a lot of people this is the reality of their lives, even if others chose to look the other way. Your reaction just makes me more aware that these kind of cards need to be in as many stores as poss. If people got used to seeing them more it would help to raise awareness and hopefully blend into the Norm (whatever that is) I appreciate your honesty.

I realize that I am putting my self in a very vulnerable position on this but, i've got to know before I keep investing in this. The question goes out to my "special needs" friends and my "Not So Special" friends (just kidding) Is this something you would like to see more of, or should I throw in the towel?