It has been so interesting to me how my perspective on life in general has changed since Grace's CP diagnosis. Our life is not as we imagined. It seems now that I view places and occasions based on accessibility...can Grace do that...can we get her there...how will it work??
Abe and I are currently in Belize celebrating our 10 year anniversary...our first trip together since the birth of our triplets. We are staying on a beautiful island and have seen many families with their children. My thoughts of bringing our triplets, specifically Grace, here actually started as we boardeded a very small plane from the main land to the island. How would we get Grace's wheelchair on this plane? Then as we landed, how would Grace do with her walker on the very sandy and bumpy streets?
Yesterday we went on our first scuba dive in Belize. I thought of how much Mack would love seeing all the sea creatures he loves to read about about, up close and personal. Then as we donned our scuba gear, I realized that Grace will probably never be able to scuba dive. Will she ever be able to pat a sea turtle?
This morning over coffee, I watched a family with 3 kids and listened as they talked about the activities of their day. Will she ever snorkel or kayak? Will Grace ever be able to see Mayan ruins? Will she ever be able to cave tube?
Dear God, I prayed, how do I as her mother make sure she get to live to the fullest? Please don't let me fail.
7 comments:
Sometimes these thoughts catch you when you least expect it! However, I have no doubt that us special parents figure out how to live life to the fullest - even if it doesn't look the same as everyone else!
Life for Gracie is different, but it is LIFE. And she will live it as fully as you encourage her to live it. I love you all
Yes, Yes, Yes, Grace CAN scuba dive, go to Belize etc. There is at least one program I know of that helps people with disabilities learn to scuba (including all types of CP, higher level quadriplegics etc.) As far as the wheelchair transport goes, I understand your worry but Grace's chair is a small manual, and people successfuly travel on airplanes with powerchairs on regular basis. You'll learn to use creativity to make things happen for her, and she will take that lesson with her to adulthood!
I'm 20 and I have spastic quad CP. It would not be possible for me to live alone, go to university by myself etc. etc. without my powerchair. I used a walker to get around when I was little, but the chair opened up another world to me. Grace's chair will do the same.
Sorry for being so long winded but it's REALLY important to me to let parents of young kids w/disabilities know that a person's quality of life is largely not contigent upon their physical abilities. What truly matters is whether or not Grace learns to walk, but that she grows up with the attitude that there is no reason her bodily limitations should stop from doing what shets her mind to.
Part of that is of course, her learning that she has a right to acessibility, and needs to stand up for that right. Part of it is thinking outside the box of what constitutes a "normal" and "fullfulling" existence.
For instance, if it does in fact prove physically impossible for Grace to get to the Mayan ruins it doesn't mean that her life isn't full. Her experiences will be different from siblings in some cases, but not necessarily less enriching. Everybody has niche in life.
I'm going to shut up soon I promise. I hope you don't feel attacked and criticized by me. I just want challenge people to think about life with wheelchairs differently. They are not instruments of confinement. They free people from immobility, in the same way the airplanes free people from flightlessness. It's only because we have been taught to think of the inability to walk as rare and tragic that wheelchairs create sadness.
I love your blog, and your kids have incredible spirit. Keep being so honest :)
Danielle
I know that my girls won't face the challenges that sweet Grace does. Turns out I have a special needs daughter of my own but it will look a lot different for sure. Still, so often your words resonate with me. Just like you were thinking of Mack and Sophie right along with Grace, our kids are always on our minds aren't they? It is easy to fret about what they will or won't experience, (special needs or not,) and how we can somehow change it. I am not trying to discount what you are going through because I have no way of knowing. I am just trying to say that so much of what you say speaks to me as a mother, and as a child of God. So rarely do things turn out the way we expect! And it is so hard to surrender it sometimes. Hope you enjoy your vacation.
I think Grace will do LOTS of amazing things and I don't knwo what specifically but I agree with Danielle--she doesn't have to see the Mayan ruins to live an enriching life. Besides, who says she won't? Have you seen that guy Zack who's in a wheelchair and trying ot get his own travel show? I think he'll open our eyes up a lot to what is realy possible.
Hi, Jacolyn. Could you please share if Grace did have the PERCS procedure with Dr. Yngve? I am considering that for my 6 year old dtr with spastic quad CP. Thanks,
Alma at alanajoyd@gmail.com
Coopsnpeps.blogspot.com this family has a son with CP, they recently went to Vietnam and then to Thailand, with a wheelchair, and have a trip planned to Cambodia. They are good friends of ours and rock. They have definitely showed me what's possible. Anything! I have lived many places before my son was born and now I must view all of them differently. Assessibility is an issue but I think more things are possible than we initially imagine.
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