There are so many phases of understanding and knowledge to "disability enlightenment" and we've been through them all. That's a whole other subject for another day, but we're at a good place now. What I'd tell new parents' of children starting to accept that their child will live their life with a disability is not to be too worried, it will all work out and IT WILL BE OKAY.
However crazy and unimaginable it might seem in the "early years" it is absolutely true that your child has everything they need in their lives to live a meaningful life and so do you!
You might need to change your attitude about some things and you will have to drop your tendencies toward perfectionism-if you have any. I was a classic "perfectionist" and very judgmental about a lot of things-which is also a topic for another time that I don't want to wade into right now, but wow if the Universe has a cure for a whole bunch of people who think they're pretty smart and self sufficient and want to control everything I think that would be to make them parents of children with disabilities. That was just me, being judgmental I guess- I should not make blanket statements about all parents of CWD. (Children with Disabilities)
Because there was no help to be had in those days for us, we stumbled along and went through our grief and worried and prayed and sometimes received some comfort. What would I have done without all the grandmas and grandpas well as friends and neighbors and some amazing teachers along the way?
The most important and life changing thing that happened for me though, was a dream.
We had to wake early one Saturday to drive to Idaho for a favorite Aunts Funeral. We were driving when I recalled and related the dream I'd had that night to my husband, Kari. In the telling of it, I was again aware of the beauty of it and when I spoke about it there was something about it that made me want to cry.
I dreamt that the four of us were in a boat. My husband, my son and myself as well as our little daughter, who, we were now very aware that there were some issues about her language and learning abilities and wondering what to do and where to go. I think this was when we were very concerned about what school and what kind of education would be available for her needs...and thinking we had to figure this out on our own.
We were in a boat on a very beautiful, but "other worldly" kind of lake. The setting of the lake was extremely bright and colorful and sort of reminded me of a Disney Movie. The water was clear and deep and there were Huge towering mountains and waterfalls and lush vegetation all around us. The sun was out and the sky was blue and we were the only ones there on our boat on that lake. It was a beautiful day and yet we were a little scared because we had never been there before or seen anything so big or beautiful-we were all quite in awe of where we had found ourselves. We were enjoying the views and the ride and our little daughter Raini, when suddenly she wants to go fishing! We are very nervous about it and worried about how she's going to do this! After all, we're still not entirely sure where we are! I'm wondering if there are even any fish in this lake and what kind of fish there are to be had. But she seems to know that there are, in fact, fishing equipment and " tools" for fishing right there on the boat and she goes to them! She gets them out as we look on in amazement-we certainly didn't think of fishing and why didn't we know about those tools? She gets them out and lays them on the back of the boat and I then see that they are unusual and strange and some of them are.invisible! Amazingly however, she knows how they "fit" together. I am watching her do this while Kari meanwhile is driving the boat and guiding us slowly along and he's taking care of how close we are to the mountains and concerned more with that than what Raini is up to-for that moment anyway...and I'm thinking that maybe we should do something! But before I can think of anything Raini has her fishing "tool" in the water and has caught a fish! She pulls it out with it attached to her "pole"
that I can't see.... to see that it is a big beautifully colored sparkling fish! His beauty is surprising and delightful and he even seems delighted to have been caught! Kari sees the fish and we are all so happy and surprised at this amazing luck! There is the feeling there that she has just caught the very BEST kind of fish! Raini is so happy and we are all so proud...there is this feeling that we are just so happy we can't believe how she did this and we got to be there with her!
By the end of the telling of it we were both weeping. It is hard for me to try to describe how spirit-filled this was for me...it was real comfort in a deep way for us then even if we didn't imagine all the implications then . It's been 18 (?) or so years since that dream and I appreciate it more and more and have realized more and more over the years what it means for our family and for all of our children. I have written about it and told in a few small settings and felt like writing about it this morning. It feels the same every time I think of it-like it was meant as a reassurance for some uncharted and wavy waters. I am so thankful for calmer seas and more peace as far as how I see the world we have to live in.
I am more and more convinced the older I get that My daughter and all children already have all the "tools"or abilities they need in their lives for their own journeys in this world. They arrive here purposefully and decidedly "complete". They might have unusual or different tools or equipment that I don't see or know how to access-but they know how and use them to the utter amazement of those around them. Some of these tools are actually more like gifts or magic.
It might be hard for certain parents who have been fully indoctrinated to the ways of this material world to believe in the beginning, but with practice and patience you can get there and even find that the best prizes are for Us and our children! I think we are the lucky ones. I have seen some of those prizes. Some are too deep to write about publicly but I have felt them and let me assure you that they are really sweet.
I'm quite happy now after all these years with exactly who my children are and who I am with them. I am really happy to say that a lot of my besties are kids with invisible fishing poles.
