Every year my husband and I raise money for The Friendship Circle, an organization that is very close to our hearts. Each year my husband writes a heartfelt letter about what it means to be the parent of a special needs child and how The Friendship Circle has helped us and so I thought I would use my blog as a way to share his beautiful words this year. It is a little long but as usual his letter truly encapsulates our feelings. He is a wonderful writer so enjoy:
As you probably already know ( if you dont that just means you probably sent me an email at some point this year sorry:-) if you are receiving this email every year I try to share with you a glimpse of the life of families blessed with the gift of raising a child with special needs. Every year brings with it new experiences as we continue our journey through the valleys and peaks of raising our special children. This year I would like to focus your attention on the parents of these children and their journey. I guess on our journey. And as always I apologize in advance for the length. I have learned that special needs requires a bit of patience.I would like to share with you a personal experience but first a little bit of context. My family has been incredibly blessed by our communities warmth to my son Yonatan. Our experience has generally been positive and I assumed that this was the case for other families of children with special needs . However after a particularly negative experience I began to talk to other families and sadly learned that my generally positive experiences seemed to be almost exclusively mine. I decided I would try to change that and so I met with different community leaders in an effort to impress upon them the plight of these families.So what is the plight of a family with a child with special needs ? I will try to explain. You will not be able to really understand but hopefully you will get a glimpse.It begins with the four words that are constantly on our mind - Is it worth it ? That sounds terrible doesnt it ? Well its not what you think. We dont ask whether our children are worth it. The answer to that is a resounding ABSOLUTELY! Just as you likely will never understand the depth of the challenge you equally will never understand the depth of the reward. They are most certainly worth it. The question actually is far more practical. It goes something like this -It is worth it to make him wear his pants the right way ? ( I guess he doesnt know that Kris Kross hasnt been cool for a long time but its still better than no pants at all! )Is it worth it to have or go to a birthday party ?Is it worth it to go to the grocery store ? ( By now even our fridge is hungry but if I open the door and a mail truck happens to be in front I will be on a 4 hour excursion chasing Ming - he's the mail man)Is it worth it to have a friend over ?It is worth it to go to Baskin Robbins? ( If I dont come with a janitorial staff I will either have to wash the floors or I will be asked not to come back)Is it worth it to allow his siblings to have play dates at home ?Is it worth it to make him change his shirt ( because he has been wearing the same one for the last three days with so many stains of bodily fluid and half eaten food you could probably live off it in the wilderness for 6 months) ?Is it worth it to go to synagogue ?Is it worth it to accept an invitation ( and if I am brave enough to accept do I tell them about my son and his strong tendency to rummage through the fridge and pantry and take what he pleases and thats after he has gone through all the drawers in the house to find their mail so that he can do the same ) ?The list goes on and on. The minutiae of every part of our daily routine begins with - Is it worth it ?Most people go about their day without giving much thought to most of decisions they make. They instinctively make choices like normal people do. Families like mine dont have the luxury of normal. Every decision even the most mundane of activities is weighed against the pending disaster of making the wrong decision. The melt down that may last five hours or the tantrum the ends with me dragging my child to his room and blockading the door with my body. Maybe it is throw up all over the couch and carpet ( in someone else's living room ) or an entire grocery aisle filled with what moments before was on the shelf. Maybe its my child's hands and face deep into the toppings at the ice cream store or maybe its his "accident" while sitting there impatiently waiting. Maybe its my "accident" because I am afraid to leave him by himself even for a moment. The list goes on and on.And of course let us not forget about the best part . All the evil disapproving stares encountered, as though we and our child delight in this messy life of disruption, while we so desperately try to maintain control over what is obviously an uncontrollable situation.But none of this is the hard part. This is simply what we call life. The hard part comes after all of that. Eventually after enough such experiences we all realize that most often it simply is not worth it. And here begins the hard part. There are few outings, no birthday parties, no invitations, no play dates , no synagogue or other community events. Instead there is an incredibly rewarding but lonely experience. Rewarding because you are privileged to see things in our world that others never will. And lonely because that which you are privileged to see you watch alone.This is an experience every parent raising a child with special needs has felt in some way. And so I wanted to help find places that would embrace these children and their families. I began meeting with different community leaders to try and express to them the plight of these families. I tried to explain to them that what makes our journey so unique is that unlike most other difficult journeys this one is not temporary and it does not wane. It is 24/7 and intensifies with time. Below is an email I sent to one of the community leaders after we met.Dear .............,Thanks for meeting with me yesterday. As you know this issue is important to me and personal. Unfortunately these families and their children will have no other advocates other than those of us who have been touched by this issue and although my experiences have generally been positive I know that it has not been the case for many (........................................).
As we discussed what made Abraham different (than Noah) is that he truly loved G-d so much that he could not help but try to share that love with everyone around him. We all actively pursue what we love and if we are to be honest that is exactly why often these families and their children are forgotten. It is very difficult to love someone or something we ourselves would never want. After all no one sees disability and wishes for it nor should they.
But for those of us who have been touched by this we have learned and seen that beneath the surface of challenge, difficulty, and disruption there is a treasure trove like no other of incredibly inspiring and beautiful humanity. There is a purity of soul that sees the world as it should be and each one of us as we should see each other. They see past human flaw and focus only on human goodness. Thats why those who have gotten close enough, literally just to notice it, are changed forever.
On the surface there is nothing exciting about a project like this but it is right and more importantly just as these people forever change those around them they can also forever change our community.
While I hope that I have been able to make some strides there is still only one place where we are not alone and where IT IS ALWAYS WORTH IT! There is one place where different is truly celebrated and special.That place is Friendship Circle.When there are no play dates there are "Friend's at Home"When there are no birthday parties there are "Birthday Bashes"When there are no outings there are "Holiday Celebrations", "Basketball Club", "Karate Club" , "Summer Camp" , "Winter Camp", "Sunday Circle" and so much more.Friendship Circle is a place where disapproving stares are replaced with warm accepting smiles and where uncontrollable disasters are met with loving embraces. It is a place where we are reminded that we have all had an "accident" and we have all dreamed of burying our face in yummy toppings. And most importantly its a place where if that happens its OK.On Sunday, September 14th, we plan on joining Friendship Circle in the fifth annual "Walk for Friendship" to benefit their great work. Any way that you can participate will greatly support us, Yonatan, and this amazing cause. Miriam and I would like to begin this wonderful campaign with a contribution of $1,250.You can participate in honor of Yonatan by clicking the link below to view our special page on the Friendship Walk website. Simply follow the directions from there, and you will ensure that every family and every child has at least one place where it is worth it!We thank you all for your endless support of Yonatan and our family and for so many other families.THANK YOU FOR YOUR SUPPORT!PS – Contributions to The Friendship Walk are tax-deductible TX ID # 20-3270890. Any amount will help. Please know how grateful we are for you belief in the work of FCLA!