Dear loving, kind and thoughtful readers,
I have been completely overwhelmed by the outpouring of love, support, kindness and sharing of personal stories in my email, on my facebook page, here on the blog and in private messages. I have been telling friends that in a way it's kind of funny. I've been trying to tell the world since Gavin was an infant how special he is - I mean really special. Not special needs. So part of me feels like yelling "I've been trying to tell you, world!!" I'm glad you all get it now. There's just something about Gavin.
I know what it takes to write to someone you've never met. It takes a certain kind of bravery. I want you to know that I recognize that and it means so much to me that you would take time out of your lives to compose anything at all to me. Your messages have been so kind and comforting. Thank you.
I also know the desperation of being a special needs Mom - or the friend of a special needs Mom - or a therapist or teacher of special needs children. You want things that can be hard to get - answers, advice, equipment, etc. I have been in your shoes and I often had very little shame when it came to asking for things, for help, for guidance when it came to getting things for Gavin. I have been you.
With that said, I just have one very small - and very humble - request. I am not looking to embarrass or shame anyone. And I would ask that no one make any comments to that effect after reading this - because I understand where people are coming from. I just ask that you please not write to me asking if you can have Gavin's walker... or his wheelchair... or his clothes... or his anything. It's just not the right time for this. (The only thing we'd happily entertain is selling our Hyperbaric Oxygen Chamber which we've had on the market for a year. We could really use the profit from that sale now!)
People may tell you (at least I hope they would!) that I go out of my way to help other parents all the time to share what I've learned over the years with Gavin. I loved (and will love again) reaching out to parents who are holding a new baby - or just getting a diagnosis - and feel completely overwhelmed and afraid. I loved to offer them hope - and the promise that they will get through this. I always wanted to plant a seed in their minds and hearts that they would come out on the other end changed for the better - even if it seemed impossible to believe in that moment.
But... right now, it's too painful. My identity was very wrapped up in all things Gavin. That job for me is over - like getting fired without notice. It sucks. I'm feeling lost. And as much as I want to help all of you that are writing to me asking questions about diagnoses and puree recipes and therapies and more... I can't. I mean I could - but I just don't want to right now.
Sometimes you have to tell people what you need. That's all I'm doing here. I'm not upset (by any means) at anyone who has already reached out to me. Not one bit. But as Ed and I always say to each other - you can't hold anyone accountable for things they don't know. You wouldn't have known I was feeling this way - so that's why I'm telling you. I just know my limits and I wouldn't want to silently harbor a resentment if it kept going on. That wouldn't help anyone.
Again, please don't make any judgmental comments about people reaching out to me or asking me things "too soon." I know how hard it is to want answers or things for your children. And if everyone just gives me some time... maybe a month or two... I'll be back.