I spoke with my friend, Mary, for about 45 min., easily, the other night. There was something in what she wrote on her blog that made my radar go up. (You might recall that Mary and I co-authored a series of blog posts on her blog, Passionate Perseverance, about communicating lovingly and well with families who have children with special needs: What NOT to Say.)
There was a tone in the writing, a sensation I felt as I read her installment, that made me make a mental note: "Next free moment, call Mary!"
I'm glad I did. What she had to say is what I feel often. I don't typically share it out loud with people other than Mary and a couple of close friends. But, Mary has a gift -- she is a spirited writer, and I asked her to express that voice for both of us. She did it with vigor in a piece called, On the Edge of Nowhere.
I will now make my own attempt to build on her perceptions:
OUR LIFE IS HARD! The reality of the day to day grind is much different than your typical Routon-driving family of 4 with a dual income and vacations to Aruba.
Diapering a 16 year old -- personal hygiene of all sorts: shaving, bathing, combing hair, brushing teeth -- none of these are independent skills.
Figuring out his needs -- Non-verbal children have a language all their own, and only we know it. So, when he comes up with a new desire, we have to play charades for hours to figure out what it is we have to do for him, or what on earth he wants.
Sleep -- we get very little. My husband is super human. He manages to be a phenomenal boss, produces excellent work, will be there for his family and his employees as a shoulder to lean on, and sleeps on average less than 5 hrs every night because Eddie needs his help to reposition or relax.
Expenses -- Kids with special needs are expensive, well all kids are expensive, but the special needs market place is 20X more expensive than the average world. For instance, take buying your child a bike. I could run to K-Mart right now and get a 20" bicycle for about $60. An adapted bike for a child with special needs averages around $1500. Now, factor in medical expenses, and a vacation on the beach is not a yearly event, it's a luxury -- and sometimes, because of the needs of the child, it's a relative impossibility.
I could go on and on...
Why do we do it, then?
Why do we stand on the edge of that precipice that Mary alludes to?
Let me try to answer those questions; I can only speak for my own circumstances, but I certainly empathize with Mary -- sometimes, the struggles tug a little too hard on the heart strings. You know that life is so fragile and that you have been given an enormous gift because God trusts YOU to love and care for the weakest and the most vulnerable. But, the carefree lives of others can be particularly piercing, especially when our life goes into crisis mode.
I can't drive a carpool without having to make special arrangements and pay someone to take my 16 yr old son off of a school bus. And, I can't just have a teenage girl come to sit with him. What if he should need his diaper changed? I need an adult. Or, I could take my son, after a very long day of school, and stick him in my car to drive around for the afternoon, every afternoon -- but, that's not good for his back after the rods and pins were placed from his spinal surgery.
Logistics is a nightmare -- it requires the sacrifice of all the family, not just the child with special needs. There are certain things we just cannot do. I recall years ago when I was asked to go apple picking with some of my friends, how difficult it was to have Eddie in his chair in an orchard...not the least bit handicap accessible. We managed it, but it was next to impossible to push his wheelchair through the field. (We've since been able to afford an all-terrain jog stroller -- cost: $1200 -- but, we can at least hike now, until our backs can no longer push his weight and the weight of the stroller.)
This is a taste of our reality -- and, I wouldn't choose another path if given the opportunity. I have been so blessed by this experience of love. I have grown so much in my trust of God and reliance on His grace through the Blessed Mother.
Why do we accept this gift; why didn't we just make it go away, as so many choose to do on a daily basis, so that we could also enjoy putting up jams or digging our toes into the warm, moist sandy beaches, or complaining about the price increase at our local manicurist?
LOVE! and sometimes, love is hard. My mom always reminds me that the things children do in their lives profoundly impact a mother's heart. "You are always my children. I will always love you. I may not understand you, but I'll always love you. And, what you do remains with me. Your joy is my joy, your pain is my pain." I am feeling this first hand now as a parent. Mom is wise, and she is right. And, the older the children get, the more intense those feelings become.
I can't deny the pain in my heart, the weakness of my body, the spinning of my brain, when they told me that Eddie was probably not going to live very long; that his condition was critical. I had already lost two children to miscarriage, and would go on to lose two more before our family rounded out at 6. I knew pain and heartache, but I didn't understand the implications of raising a child with special needs. I'm glad that knowledge was overruled by love and a mother's intuition. He was our baby -- he deserved the best we could give him because God deemed that he should live and have life abundantly. (Cf. Jn 10:10)
And, though we might moan and complain about how hard this is every now and again -- these are my expensive manicurist moments in the world of special needs -- it's worth every last effort on my part, on my husband's part, on my family's part, to raise this beautiful boy and our entire family.
Like, Mary, I have no idea where God is leading us at the moment -- me, in particular. I stand and wait; I pray and hope that I don't miss the inspiration, the subtle whisper or the obvious situation because I am distracted by a moment of weakness or self-indulgence.
For my part, these hours of trial create a bridge from where I am now in my spiritual life to a new spiritual path emerging on the other side. They are painful, they are sometimes demoralizing, until I let God do what He must to make me who I am meant to be.
I want to thank Mary for her post and for giving me a reason to share this with you. I don't expect or want pity, but I do hope to enlighten others to the fact that Love is powerful, but we are not always the best receivers of His grace. Sometimes we just need a boost and that comes from making people aware of the reality of loving and caring for a child with special needs. We make it look easy, perhaps because we do it each and every minute of our lives. But, doesn't a high wire walker make his job look easy, too? That's why Faith on the High Wire is such a perfect name for this blog. Each step is one taken in faith, with the knowledge that it's a long fall to the bottom, but God is my safety net. This is how I balance hope and reality on a daily basis -- I just have to keep praying, keep trusting and thanking Him for the life He has seen fit to provide me.