Dick & Rick Hoyt

Great Article!

http://www.sheknows.com/parenting/articles/1004097/when-families-fail-parents-of-children-with-special-needs

Communication

Today is going to be an exciting day. Jace's bike should be shipping soon, although we are still awaiting for confirmation of shipping dates and expected arrival dates. Patience is difficult to grasp after all the effort into getting the funds raised so quickly. 

This is the summer of equipment and the summer of making it happen. I am currently ordering a new bath chair, a potty chair, working towards a pacer (see pic below), and at last, a very fancy piece of technology to assist Jace with communication by way of two switch step scanning. It's been a year process to work towards this goal and he is ready!

I think one of the most common misconceptions about understanding what a person with physical disabilities is capable of understanding and achieving is that just because their body interferes with their ability to participate in everything without the use of, “adaptive creativity”, if you will, does not decrease in any way what their mind is able to understand. We only limit ourselves by giving up or failing to attempt something new. For a child with an underdeveloped cerebellum, like Jace, his body function is all over the place. He can follow directions. Answer questions. Knows his ABC’s, can count to 10. He knows what he wants and tries to communicate. I'm so thankful for assistive technology to meet his communication needs. This will certainly expand his world, his choices, and hopefully give him more of his own voice.

Bike Update

Wow. Jace is going to have his own bike so soon. We are officially $90 away from making it happen. I can not even believe it. Amazing! If you haven't checked out Jace's new facebook page,  it is called Jace's Journey but can be found at: https://www.facebook.com/just4jace.

Here is the link for Jace's bike fundraiser:

http://www.active.com/donate/amtryke/jacesjourney

Thanks so much for all of the support! Looking forward to getting Jace on his new bike!

I wish someone had given me this information 7 years ago...

I read this a while ago and repeatedly see it posted throughout groups that I "like" on facebook. It is powerful and worth the read.

What I Would Tell You

I sensed someone watching me as I comforted my daughter after a particularly traumatizing dentist appointment at the Children’s Hospital. I looked up and saw you staring at us from across the waiting lounge. I didn’t pay much attention, as I have grown accustomed to the curious eyes of onlookers. Our daughter was born 7 ½ years ago and after an abrupt lack of oxygen at birth, she changed the course of our lives forever. Perhaps, our lives unfolded exactly as they were meant to — they just didn’t unfold in the way we had imagined or planned.

I talked to my daughter, kissed her and hugged her. I was giving her a brief break before putting her through the next traumatic experience of the day ~ the car ride home. Having cerebral palsy is the least of her worries but this condition can turn a car seat into a torture chamber.

I stood up to gather our things, my daughter in my arms, and it was then that I noticed you were holding an infant. It was difficult to know for certain how old she was. I knew immediately, though, that you were one of us. I knew that only recently your life had changed drastically and you sat here in this Children’s Hospital wondering, “How did we get here?” I should have recognized that shocked stare because I once had it, too. And I assume that the man sitting next to you, looking equally tired and shocked, was your husband.

I made my way toward the doors and as I passed you, our eyes met and I smiled at you. You smiled back and for a moment I knew that you knew that I understood.

If I could, I would tell you although you might not believe it right now, you will be okay. I would tell you to dig deep within yourself because you will find the strength and resilience somehow and it will surprise you. I would tell you to honour your feelings and let the tears flow when they need to. You will need the energy for more important things than holding in emotions.

I would tell you that the man sitting next to you might cope differently and he might even want to run the other way. But I would tell you to hang on because he is scared and he really doesn’t want to leave you. I would tell you to look after yourself so that you can care for your daughter. Don’t underestimate the power of good nutrition, exercise, sleep, supplements and an empathetic therapist.

I would tell you that grief will come and it will confuse you because how can something that brings such joy also bring such sadness? I would tell you to let people into your lives to help you. Our children really do require a village to raise them. Access all of the services and resources available. Find someone who can learn how to care for your child so that you can have breaks and so you and your partner can go on dates… even little ones like a twenty minute stroll outside holding hands, sharing wine on the deck or even catching a movie.

I would tell you that you know your child best of all and no matter what you are told by the doctors and other professionals who will be a part of your life, YOU know the answers. You will teach them about your child. At times you will question the validity of your intuition but after a while you will become profoundly aware of how accurate your gut feelings are when it comes to your child.

I would tell you not to be a martyr. Caring for your child will require tremendous focus and unimaginable energy and it can burn you out and make you sick when you least expect it. I would tell you to let your guard down along the way so that you can stay healthy in your mind and spirit.

I would tell you to seek out other mothers like yourself. This is, indeed, the road less travelled and you will feel very alone along the way especially in the company of healthy children and their parents. Yes, you will feel very isolated but know that we are here. Sometimes you have to look a little harder but we are here. You can find us online, in support groups and wandering the halls of the Children’s Hospital.

I would tell you that you will know far too much about the human anatomy, neurology, gastro-enterology, feeding tubes, pharmaceuticals, and so on, than a mother should ever have to know. I would also tell you to do some research to inform yourself but be very careful not to be overwhelmed by the internet and all of the information available to you. Having some trust in what your child’s specialists tell you can be very grounding. Other mothers and fathers of children like ours can be a wealth of information.

I would tell you that this isn’t an easy life. It is tough: there is no doubt about it but you are very capable and the rewards are great. You may never see your child graduate from university, walk down the aisle or give birth to your grandchildren but you will feel pure joy when your child laughs for the first time at the age of 3 years and 8 months. You will celebrate the moment when you connect with your non-verbal child. You will call your spouse at work to tell him that she has gained 4oz. because weight gain is always a struggle with our children.

I would tell you that you will have to witness procedures and surgeries and suffering well beyond what any parent should ever have to bear. But, I would tell you that you will be courageous and comforting because your child will be experiencing far more suffering than any child should ever have to endure.

I would tell you that your life will not resemble the life you had planned. It will be as though you landed in Holland instead of Italy but after some time, you will adjust the dreams you had and this reality will be normal to you. You will dream new dreams.

I would tell you that you might find yourself staring death in the face during close calls. You will be asked to fill out DNR (Do Not Resuscitate) forms and although you might make decisions to not resuscitate in the event of a cardiac arrest, when the moment arises, you will panic to think that it could all come to an end. And I would tell you to not feel guilty in the darkest moments when you pray to God to take your child if it would mean the suffering would end. This might horrify you but know that your love for your child is so great that at times you will believe that death would be a blessing.

I would tell you that others will not get it. They can’t. This is a very unique and complex journey on all levels. We cannot expect anyone to get it. And I would tell you that people — the cashier at the grocery store or your insurance broker or even your hair stylist — will say stupid things like, “God only gives these special kids to special mothers” and “God will only give you what you can handle.” You will nod and smile but eventually you will look them right in the face and tell them that those simple maxims are a bunch of bullshit.

I would tell you that imagining your future will be bittersweet and may involve a Plan A and a Plan B. Plan A will be what you will do if your child outlives the predicted life expectancy set forth by the experts and Plan B will come into play if they do not. You will catch yourself casually discussing your future with the code phrases of Plan A and Plan B.

I would tell you that grief will creep up on you after years have passed and you least expect it like at a wedding when the father and bride have their first dance or when you hear a birth announcement. It will also creep up on you when you see yourself in a new mother who is just beginning this journey.

I would tell you that you will recognize her because she is you from 7 ½ years ago. And you will want to run to her and hug her and tell her that everything will be okay. You will want to save her from the pain and the hardship and the unknown.

But I would tell you that when you find yourself sitting at the Children’s Hospital and you see a new mom and dad who are just starting this journey, you smile at them and walk by as they have their own path to travel and it will be different than yours. It may be longer or shorter. It may be more or less complicated.

I would tell you that her searching eyes are looking for some sign that she will survive this. And you, smiling as you pass, with your child arching all over your shoulder, will let her know that yes, she will survive this and may even thrive.

Julie Keon

June 29th 2011

Jace's Journey

Great News! Jace has a fundraising page set up for his bike. Check it out:

http://www.active.com/donate/amtryke/jacesjourney

In addition, Jace has a facebook page up and running. Jace's Journey:

https://www.facebook.com/just4jace

Finally: Jace is participating in his first WalkRollRun through UCP! I've created a team page under Jace's Journey as well.

http://www.walkrollnrun.org/

Catching up!

So much to catch up on as I've been hoping to get Jace's Journey up and running but haven't quite perfected the page yet. Jace has become, "toothless Jace", losing his two front teeth on the same day. One before school, one after school. The tooth fairy was very good to him.

 We've begun to experiment with counting money and even sent him to school and told him how many books he could buy at the Spring book fair, he came home with 4 books and seems to be quite thrilled with his choices. He loves to be read to and I quite enjoy reading a book and flipping through the pages rather than letting an electronic device do it for me. Feels more personal, more memorable.

A huge goal that has been in progress over the past year is getting Jace a more advanced piece of equipment to help him communicate. His team has really been hard at work brainstorming for the right piece that meets his needs. We are trialing a piece of equipment called a Nova Chat 5 over the next two weeks. Jace works on his communicating and switch scanning abilities during the school year and during private therapy, it will be nice and less frustrating for him to eventually be able to communicate with his family whether he wants something or someone or to do something, it will give him a voice.

Someone has been sleeping a ton these days. Cute pic of Jace napping, he's likely on another growth spurt, giving him that appearance of being tall and at the same time, awkwardly skinny as his body lengthens, all that work on weight gain doesn't seem to catch up. It's possible it runs in the family as I noted that a few cousins are also appearing to be all leg this summer. Not as much time for play when he goes to bed at 9 pm and wakes up at 10:30 am. 

Finally, we've been working on obtaining a bike for Jace. It's something that insurance doesn't deem medically necessary but his little face is beyond lit up when he is on one. I may have finally put one together that will meet all his needs, give him a sense of freedom, work those legs, give him more skills toward  patterning and get him outside more. Hopefully, by tomorrow he will be on the wish list for it and I can begin my fundraising efforts to get him his own bike. In addition, Jace will also be participating in his first walk, roll and run event for UCP this year, under Jace's Journey. Looks like it will be an exciting summer for Jacers!