Up until this year, I have never really participated in charity walks...I did the education walk in my school district, but it just required a one time donation, not asking or begging the people I work with or friends and family for donations...my kind of fundraising. I'm lucky that my husband runs a sports card and memorabilia show, so in the past when we walked for a friend who has MS, he was able to put together a charity table to raise money for our walk. I have never been good about asking others for money. I think in high school, I just paid the $50 for the two boxes of chocolates I was suppose to sell in Keystone Club ( I wonder if my mom ever found the leftover boxes when they moved). Well, earlier this year when my good friend's son passed away from Neuroblastoma, she mentioned she was getting a team together for a walk to benefit the hospital, and sure enough, I was asking for money...thankfully, with technology it's very easy to ask and post the link on Facebook.
Since Little Man's diagnosis of CAS, I looked around for a charity that supports children with CAS and their families. I was so grateful to find CASANA and learn that they have walks all over North America. Surprisingly, they do not have a walk in Boston - the nearest walk is in Portsmouth, NH or Connecticut. I contacted about a walk in Boston, and I was asked if I wanted to plan it...well, I have too much on my plate right now with going back to work, figuring out schedules and keeping a house - I really couldn't say yes. So we'll drive up to NH for the day to join up with other families who have children like Little Man and walk to honor them. My main goal in doing this is to meet people face to face who are going through the same issues that we are and to celebrate these precious children.
I have been blown away by the generosity of our friends and family and some people who have never met our little guy in person, have graciously donated money in his name to help support CASANA. It brings happy tears to my eyes to know that people care to support this important organization.
I have to say, this is not the only way to support the children who have Childhood Apraxia of Speech and their families - or other developmental disabilities that families are dealing with. Recently, just spending a night out with another mom and old friend, who has gone through different but similar processes of EI and transitioning to public school was amazing help and support to me. Talking, shedding a few tears, and knowing that we're not alone in this process was very therapeutic for me. Lending an ear and being an outside supporter can be amazing help. Recently a friend I hadn't spoken to in a long time wrote me to tell me what a great job we were doing and reminding me to make sure I take time for myself was very good for me to hear. Of course I hear it from the people around me - but hearing it from someone I haven't really seen in over 6 years was so uplifting. Finding caregivers who can be patient and willing to be able to care for a child with any developmental disability can be extremely tough. We often lean on grandparents for that support, but it can be just as tiring and difficult for them. Thankfully, Bee-bee's old at home daycare provider was able to provide time for me this summer to get things done at home and at work. She has all the care and patience in the world to work with our two kiddos - although I sometimes wonder if the older one was more of a challenge. ;) Knowing that people are praying for us is also very comforting. In high school, I was very active in many Catholic and Christian communities, and thanks to Facebook, I have been able to reconnect with many of them. Getting little comments or emails of hope or encouragement helps when things aren't going so well, and hearing the praise and congratulations when things are going well keeps the positive energy going.
I have to say, having a child with CAS is not a terrible, horrible, bad thing - even though sometimes it may feel or seem that way. Yes, it is not something you want your child to have - but looking at the other disabilities and illnesses out there - we are blessed. Knowing the other people who are in "Holland" with us, sometimes I feel like I did make it to Italy. I feel fortunate to have the help and support of my husband, my family and friends. We're lucky that I'm in the education field and in this day and age with computers and technology, we can do research, connect with others and find applications and programs to help our Little Guy. We are fortunate to have jobs that provide us with insurance and means to pay for additional therapies to help him. I know I feel lucky to have such a creative child who works so hard to show us what he wants to say and he has a big sister who is a great role model of communication. Our family has a wonderful teacher in this little 2 1/2 year old body, who teaches us that there are other ways of communicating your needs, wants and love instead of saying it. :)
Today I'm taking that advice from my long lost friend...pedi and back to haircut for mom, (all alone) is on today's agenda! :)