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June 9, 2012

For a long time it had seemed to me that life was about to begin – real life. But there was always some obstacle in the way. Something to be got through first, some unfinished business, time still to be served, a debt to be paid. Then life would begin. At last it dawned on me that these obstacles were my life. ~ Father Alfred D’Souza

We’ve been talking about moving almost since we bought this house six and a half years ago.

Three years ago, I was pregnant.

Two years ago, we were dealing with an autism diagnosis for my oldest son, and the realization that our new baby girl was deaf.

Last year, we thought we were in the midst of saying goodbye to that same baby.

During that same time, we were being dealt two new autism diagnoses for each of our daughters.

I feel like a part of our life has been in a holding pattern.

Waiting… Waiting on a diagnosis… Waiting to find out how long we get to keep our precious baby girl…. Waiting for another regression…. Waiting for a bigger house so we can fit all our toys… Waiting to buy the house before we make any other large purchases, like a vacation…..

Suddenly, I realize that each of these obstacles has been a gift. Time. Time we were never promised. Time to plan for a future that has never been guaranteed.

We booked our trip to Disney World. I know I keep talking about it, but a part of me has been very afraid to plan more than a month out for our little family, things change so fast here. And right now it looks like Mary is physically doing quite well, aside from her most recent issue of intense fatigue, which of course is being followed very closely by her doctors. Tests are being ordered. Same old excitement and waiting game.

We had Mary’s first transition meeting with the school district today. I have looked at multiple preschools for her. We were asked to transition out of the oral- deaf education school (which focuses on speech instead of sign language). We looked at an autism school that specializes in education for neurologically impaired children. We looked at a reverse inclusion classroom, where “typical” children are mixed in with special needs children. And we looked at the School for the Deaf, which I wrote about here. I was prepared for a battle with the school district. I thought it would be a fight to convince them to spend the extra money sending Mary here instead of their head start reverse inclusion classroom. It wasn’t. They absolutely agreed with us, and the paperwork is being drawn up. Most mothers might complain about this four month long process of getting their child through a bureaucracy so they can go to preschool. To be honest, I am so grateful for the opportunity to be planning for her future.

Troy has his birthday party on Sunday. I often find myself looking at him and thinking of just how far he has come, especially in these last three years since a doctor first mentioned the possibility of autism to me. He has friends. He has a measure of control over his own behaviors. He has changed. Dramatically. He amazes me.

I look at Joyce and what we are now going through with her. In so many ways, we are still at the beginning of her journey, but then I see her at an indoor playground at the mall, playing with a group of girls. Playing beautifully. She still has so many struggles with her sensory issues, so much work to do to manage it. But she has learned so much after less than one year of therapy.

And Mary. She went on a hike with us yesterday, and she did much of it on her own two feet. So much progress through so much hard work.

I realize, looking at my children, that all those “delays” we have been waiting through – all the time taken up by therapy, all the worry and waiting – it has all shaped us. All the obstacles have been the experiences that have shaped our lives and helped us to view it through a distinctly different lens. This might not have been the path we thought we would walk when we started down the aisle, years ago, but this path has strengthened us and taught us an appreciation of seemingly small miracles, like a little girl walking down a path in the woods, or the joy of just being able to plan for a few months from now.

And we’ll get to that house. Soon. But for now, we are just enjoying the ride.


10 Comments leave one →
  1. Life and Ink permalink
    June 9, 2012 9:31 pm

    A very lovely post about some very important life lessons. How wonderful you can recognize the beauty that surrounds you. Soak it in and let it be there to nourish you during those times when the beauty is harder to see. Love the image of the kids. You captured them in the moment.

    • June 9, 2012 10:52 pm

      Thanks. It’s been a roller coaster ride these last few years, but it feels like we are finally slowing down a little, which is really, really nice. I laugh at this picture. It is just about impossible to get a picture of all three looking at the camera, so I just turn into mamarazzi and get what I get- like this one. 🙂 thanks for stopping by.

      • Life and Ink permalink
        June 9, 2012 11:06 pm

        And that is precisely why it is such a good image – it captures how they are, not how they posed. And I like that word, mamarazzi. Glad to meet you and thanks for dropping by “my place” as well.

  2. June 10, 2012 5:15 am

    Fantastic post….. I’ve often felt that my life has been in a holding pattern….. Autism has a tendency to stop us from doing and instead forces us to wait and abide by the time tables of others….. It’s only when we decide to move ahead, come what may, that we truly gain a sense of momentum.

    • June 10, 2012 11:41 am

      Thanks! It has taken some time, but we are starting to understand how to take our cues from our kids instead of us imposing our own timetables onto them. It has made life a lot more fun and much more peaceful.

  3. June 19, 2012 11:40 pm

    I’ve just nominated you for a blog award for your amazing posts. If you would like to accept just click on this link and copy the award to your blog.
    Cheers 7


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