The Wish List of a Special Needs Mom

1) To see my son take a step, even if it’s assisted in a gait trainer.

2) To hear the word “Mama” even if it’s not directed at me.

3) To be able to pack cute Bento lunches for him because he still hasn’t figured out chewing.

4) To have him develop separation anxiety because sometimes it feels like he doesn’t know I’m Mama.

5) The only needles my son will endure are vaccines.

6) To be able to use a restaurant high chair, because he still cannot sit unsupported.

7) To not have tears at the scariness of the unknown future.

I know that Wish 7 could be applied to all children, however my fears are founded.  Parents fear their children being bullied in school, marrying the wrong person, getting caught up in the wrong crowd.  I fear my child never being able to attend school because of his cognitive skills, I fear him never having a friend much less a spouse. 

I’m having a rough go today.  It’s a hard journey to trek when test results are up in the air.  95% of the time, I’m okay.  4% of the time it ekes into my thoughts, and I push it out.  And then 1% of the time I bawl my eyes out.  I have a good soul-cleansing cry and still doesn’t help the future seem less scary.

Am I enough?  Do I have the skills to advocate for my child?  I am strong enough to push him to his limits?  Am I organized enough to coordinate all the therapy, doctors visits and other things that go along with it?  Do we have the financial resources to supply Bear with all the equipment assistance he will need?  What about if he can never be independent?  Do we have the finances and patience to care for him forever?

Today is a day that tests my faith.  It’s a day when I have to do extra devotions, read more bible passages (including a bunch of upbeat Psalms) to keep chanting “God will provide”.  He gave us this situation and he will gives us the map to this journey.  It’s just really hard not having a legend or a compass to help navigate this map.

Sometimes it seems so peaceful, passing beside still water and green pastures, and then comes the valley of the shadow of death.  His word is a light unto our path, but sometimes that light is only a firefly and it’s difficult to keep track of, flashing on and off.

It’s like when you’re power goes out and you’re patiently awaiting the lights to return.  Sitting by candlelight makes you realize how much you appreciated the light.  You cannot simply picture reading my the flicker of a candle or cooking dinner this way.  And when the light comes back you are overjoyed and gracious.  I know the light will come back.  I know we will find our way through this, but sometimes I swear I pass the same tree over and over again and feel like I’m going in circles.