Day #22 of this series is not a neat and tidy subject to write about; in fact it is more fun to write about light and fluffy things; but that is not real life, is it?
As I have mentioned before I struggle with doing vs. being. I feel like I have value when I meet or exceed expectations and produce; when I do tasks. So how does this translate into how I relate to my brother and others with special needs?
Well, I can’t say that I learned this the easy way. When my brother was coming down to our place (one weekend a month for Camp B) I would get frustrated easily when he was slow to respond, or when he didn’t put the internal shower curtain inside the shower, or when he rearranged our DVD collection (that was carefully placed in alphabetical order). I wasn’t very nice. I got frustrated. I had high expectations for him and it was hard to know when he was being obstinate vs. when I was asking something of him that he wasn’t capable of doing.
I realize now that Brian needs gentle, consistent reminders, and patient training with numerous tasks. And yes, sometimes he is being stubborn; but aren’t I stubborn and obstinate on some things too? I realize that some of these quirks and hangups are his way of controlling some things in his life, when much of it is out of his control.
Looking back I also think I was frustrated externally because I was suppressing what I was feeling internally. I have often wondered what it would be like to have a “normal” brother. It is something I will never know (except for my four brother-in-laws who tease me like any brother would). I told my husband recently that I had never really grieved my brother’s disability, but felt I needed to. He didn’t get this, he said “Should I grieve that I never had a sibling with a disability?” Hubby is a good man, he usually takes what God gives and rests in God’s control of things. As mentioned before, I squirm when I can’t control things.
But, God helped me grieve the loss (and don’t get me wrong there has been GREAT gain in having a sibling with special needs). I got honest before Him; I needed to get some of my buried emotions out. I felt really weird confessing this to a few people, it felt almost wrong to be grieving because I love my brother so much. But, it is something I needed to do.
We are in the process of adoption (see Adoption Story tab if you are not up to speed on that), and I was really fighting being totally open to God possibly bringing us a baby with Down’s Syndrome. Not because I don’t love my brother, but because I knew firsthand some of the real challenges and heartaches that accompany raising a child with special needs. I was afraid it would strain our marriage, that people would treat us strangely, that we’d never be empty-nesters, etc. But as I wrestled through this God began to heal me in some deep places.
I am realizing that if God calls us to adopt a baby with Down Syndrome that:
My mom read an essay once called, Welcome to Holland, by Emily Perl Kingsley. She describes that having a child with special needs is like arriving in Holland when you were planning on traveling to Italy. She says, “If you spend your life mourning the fact that you didn’t get to
Italy, you may never be free to enjoy the very special, the very lovely
things … about Holland.“
Having a child with special needs is not better or worse; it is different. There are things I will never do with my brother that I might have done with a “normal” brother…but, there are worlds that have opened to me that never would have if Brian wasn’t my brother. I would not trade my brother for anything. God has used him to enrich my life, to help me be less selfish (still a long ways to go here), and has blessed my socks off through him. Writing this series is helping me remember all the wonderful things about my brother- they FAR outweigh the frustrations.
|Learning to trust the One who is truly in control
|Landing in “Holland” in one piece; His peace.
Deep Breaths: Do you struggle with control? Have you truly handed over your life and your “right to control” to the Lord? Will you trust Him if and when he takes you to Holland? Holland could represented a child with special needs, or it could be many other things (like not getting married, struggling with inferility, losing a job, a dream unfulfilled, sickness, the death of a loved one). These are really hard things, but, He is here…..He is faithful……and He is trustworthy.
I dare you to dig into His Word (see Digging Into His Word tab) and find out who He really is.