Inside Out

If you are the parent of a special needs child, and you’re at the beginning of your journey, I have a piece of advice for you.

Learn to ask for and accept help.

This has been a hard lesson for me, and I think it only gets harder. When you have to care for someone who requires constant supervision, it is not only taxing on your body, but on your whole self. I’m always tense, always on alert, waiting for the next crisis or even just the next mess. I can’t take a hot bath or a nap. I can’t become engrossed too deeply in a book or a movie. I can’t  relax, because the crises are going to come. Yes, I handle them all with patience and seeming ease, but inside the stress of it all is beginning to take a toll.

My philosophy is that things can be replaced, but I can’t undo damage I might cause by reacting in anger or frustration. Somehow, I manage to keep my cool when I need to. Gabe spilled an entire jug of orange juice on the table today, and it didn’t make me mad. This isn’t because I’m a patient person. Actually, I’m very easy to annoy–I always have been. And yet I’ve actually been accused of being “too patient” with my children. Perhaps my friend is right when she says that God chose me and my husband for Gabe because we were the right people to handle it. Or perhaps we became the right people when God gave us  the right child. I don’t actually know the answer to that. But I know that there’s nothing more precious to me than my children. No piece of furniture, no newly painted wall, no car, no precious breakable memory from my childhood.

Last night Gabe wet the bed for the first time in his life. The people across the street were having a very loud party, and he was too afraid to leave his bed to go to the restroom. When he calls for me at night, I run. Phill tries to tell me to walk calmly, but I can’t help it. I just run. When I reached him last night he told me that there was something outside his room waiting to get him.  I sat down on his bed, and  I assumed he had spilled his water. I asked him what it was, and he said, “It’s pee. But it’s okay.”

I wasn’t mad at all, not even for a split second. I understood what he was saying. My little boy, who was so scared that he couldn’t get out of bed when he desperately needed to, was giving me permission to go back to bed and leave him in the mess. He could see that I was tired, and he cared about that. I was so overwhelmed with love for him that I wanted to curl up on his floor and bawl like a baby. I came to his room expecting to comfort him, but he turned the situation inside out!  I have never been God’s gift to him. I’m not special. I’m just another mom who loves her children enough to do what needs to be done. When he draws on my walls I see art, not destruction.  When he spills a drink I see him trying to do things for himself. I can’t be angry with him.

So where does that leave me? I still have to clean up the messes, even when he doesn’t expect it of me, and it’s almost always me who has to do it. I don’t get to stop doing everything else, either. I have to homeschool Noah, pay the bills, do the shopping, clean the house, cook the meals… Add to that a photography business and my writing, and I am a very tired little woman. I rarely get to vent, because my life leaves little room for friendships, and I know I’m not the only mother who has these issues. This is where accepting help can save me. And I have trouble doing it, even knowing how necessary it really is. Eventually I will crumble under the pressure if I don’t learn to say “help!”

And if you are in my situation, so will you. I’ve had to swallow my pride and admit that I can’t do it all. I’ve had to walk away from parts of my life that others expect me to keep. I’ve had to say no to people I love.  I’ve had to change my very nature. And I’m sure it’s only the beginning.

There have been days when I’ve felt the need to run as far away as I can from anyone around me and just scream until I’ve emptied it all out:  the fear, the frustration, the exhaustion, the pain, and yes, the anger. And then something happens to remind me of how very blessed I really am. My child shows me patience and understanding, and I know that he learned it somewhere.

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~ by Rachel McMahon on October 24, 2010.

11 Responses to “Inside Out”

  1. I have been reading your posts, and I think you sell yourself short. You are, without a doubt, a great gift to your son. What greater gift can you hope to offer him than the ones you already give: to accept and love him for who he is, to do what needs doing with strength and courage and hope, and to be the constant rock in a wold which must seem to him to be a constant storm on his senses?

  2. Thank you, Stacey. I guess I’m always just trying to do more. It never feels like enough, probably because I can’t really change things. I know I’m not failing, because my kids are so wonderful. I just hope I can live up to them.

  3. You’re an amazing person. I wish I could know you better in everyday life.

  4. Thank you, Katheryn. That means a lot to me.

  5. You are wrong… You are special. I do agree that you aren’t failing. Your children are proof of that. You really are an amazing person.

    I have met several people who became so emotionally or physically exhausted from caring for their families that they actually had to be hospitalized. A parent in the hospital is in no position to care for anyone. Your advice to ask for help is right on target. No one can function at that level year after year without an occasional break. A little stress relief can work wonders.

  6. Thanks for that perspective, Dave. I haven’t known of anyone who actually did crumble, so I guess I didn’t realize that I was any different. I may crumble yet if I’m not careful, I know. I’m learning to accept help. It’s so hard!

  7. I had the opportunity to meet those people because I was in a similar situation. I had also been hospitalized. All of them were wonderful people who had simply gone past their limits. Most of them were totally shocked to find themselves in the hospital. One day they were fine and then the next… There are never any guaranties in life, but I think you’ll be OK. You are intelligent and self-aware. Just knowing that you could crumble and realizing that you need help should be enough to prevent you from reaching your breaking point. I hope that’s true, Rachel.

    What you wrote about Gabe giving you permission to leave him in his mess was really touching. I have to confess that my vision suddenly became a little blurry for some reason.

  8. Wow, thanks for sharing that, Dave. I think that I have a really good support group, and I feel okay about admitting when I’m having a hard time. That really helps. I have a very patient and helpful husband, too, and if I didn’t, I already would have fallen apart.

  9. This one made me bawl and squall! God bless you and your family!

  10. You’re so funny, Sondra!

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