A little piece of heaven

Some people were asking about how we made the incline plane. I took some photos that I hope show it pretty clearly:

We got Nathan’s special needs bumbo! I love it! He sits really well in it. I am thrilled.

For you non-special needs parents / readers, finding equipment that helps us do little things like sit him and hold him is pretty hard. So it’s especially thrilling when you find something that works. To find one thing that works you usually have to go through 5 that don’t. So we are thrilled, we found our gem!

Look how great the he sits in it! It supports his head and body pretty well, he doesn’t have to work to stay up. And it’s so easy to put him in it, just sit him and wham you’re done. Sooo…we are thrilled.

We also lost our dining room. The room in the 2nd picture below, with the blue mat and Nathan sitting in the bumbo, used to be our dining room. But since we rarely use it, and Nathan needs space for therapy, we decided to ditch the dining room and convert it into a therapy room. Then we took his old therapy room and converted it into an equipment room. You can see it in the picture with the light gait, igallop, computer desk, and inclined plane. It’s a much better layout for us.

So every week, every month brings little things that make our lives easier. This has been a great one! Enough talking, enjoy the pictures. By the way, sorry he’s all messy, daddy was spoiling him with chocolate, and he’s as messy an eater as they come.

Awake butterfly. It’s late.
We’ve miles to go before we sleep. And miles to go before we sleep.

Is it possible that a child can call you to him even 10 years before his birth? Today I understand.

I’ve journeyed to Oz and back. I’ve got everything I need in my own backyard. But today I find that my own backyard is this lush tropical jungle full of beauty and inspiration, ripe with lessons to be learned, love to be experienced. It is the jungle of acceptance. It is the gift you discover when you stop fighting and accept. When you stop trying to control and accept that everything is as it should be. A jungle the size of the Amazon in your own backyard, sleeping inside your child’s crib, within his little body.

Is the jungle of acceptance the jungle of complacency? Does accepting mean that we stop trying? Is the moon made of cheese?

Accepting Nathan simply means that I give up control. It is like realizing that I cannot stop a tidal wave with my bare hands. It is the realization that things are as they should be, and we can only do what we can without expecting results. It is like the back breaking labor of sowing seeds in a field without expecting a crop. You water it and tend to it, without needing the rewards.

So have I stopped caring if Nathan learns, progresses, develops? Yes and no.

Nathan is perfect. He is perfect to me, in every possible way, shape and form. He is more than perfect. The love he has brought me is beyond perfection itself. But does this mean that we should stop his therapies and stop caring if he develops or not?

This is a question I really had to think about. If Nathan is perfect, then why does he have to do therapy? Why not just cuddle and love him and let him watch TV all day? Why not just make his life a banquet of enjoyment? If it doesn’t matter if he acquires skills like moving, feeding himself, etc, why all the hard work? Would you lave a diamond encased in coal?

The answer came to me in Nathan’s own sense of pride and achievement when he held his spoon and worked really hard to bring it to his mouth. Because he is a human being. Because as humans we have an innate desire to improve ourselves. Despite all his complaints when we ask him to work hard in therapy, I know every little achievement gives him a sense of joy and pride.

And of course, all of the therapy keeps his body healthy. If we let him just enjoy himself, the enjoyment would soon end in the agony of a deteriorating body. His hips would dislocate, his back would easily curve, he would need many surgeries to correct the havoc of spastic tightness and inactivity. So not only am I giving him opportunities, I am also helping him preserve his health.

Do I want Nathan to learn to walk and talk?

Today, I can honestly say, it’s not important to me. Will I deprive him of the opportunity? Absolutely not. I will give him every opportunity that is within and beyond my power to give him. Why? Because I believe that is my job as a mother. Will I suffer if these opportunities do not bring with them an abundant harvest? Absolutely not. I will drink from the fountain of certainty that I did everything I could to give him opportunities to improve himself. If he doesn’t develop any skills, does that mean he failed himself? Absolutely not. To me, success is in the effort. He tried, I tried, we both benefit.

So what did my journey to oz teach me? That even though I have everything I need in my own backyard, I shouldn’t stop travelling. I should continue to explore and enter the secret garden that is the unconditional love and acceptance of a child.