This was my first Mother’s Day without Lisa. I greeted it without the daughter who grew from my heart. There is no name for a childless mother, only the hole in my heart that reminds me I am one. With all of her special needs that required extraordinary problem solving, ever-new adaptations, daily hands-on help, she filled my life in ways no one else could. It made me a mother in a special circle of mothers who are still riding the ups and downs of everything it means to be a mother of a child with special needs. A roller coaster ride is one way to describe it. A road trip without a map. A thousand days without the sun. But if I had known, if any of us had known how rigorous, how demanding, how incompetent we would feel, would it have made any difference? I dedicate the rest of this piece to the thousands of mothers who still ask the haunting questions about their strength and capability. For the rest of my life, I will be your cheerleader as you have so often been mine.
If I had known . . .
how every loss Lisa experienced would be an arrow to my heart to uncover my utter helplessness to make a difference . . .
the time it would take to pre-organize, pre-think, pre-pare anything and everything to maintain some sense of balance in a life that would have little. .
that people couldn’t understand the needs they could not see in Lisa and would judge me over-protective more than once . . .
If I had known
that there would be no dates, no college, no wedding, no grandchildren . . .
how much the specialists did not know about what would work either medically or academically, how many best practices would not be best for Lisa . . .
that vacations would never give me time to rest as I became full-time caregiver helping Lisa cope with out-of-schedule and away-from-familiar routines . . .
how many times my heart would break because there was nothing I could do to make Lisa feel more accepted or more able to reach one of her sometimes unrealistic dreams . . .
If I had known
how incompetent, unprepared, mothering a child with special needs would leave me feeling on most days . . .
how little I could add to normal mother circles about their children’s days of too many activities, how out-of-the circle I felt even if I shared a bit of my complications . . .
the hours I would spend in doctor’s offices, surgery waiting rooms, hospital cots and two-chair beds . . .
If I had known
that loss and its faithful shadow of grief would paste itself to me with superglue and I would never “get over” it because I would always be in the throes of some new loss . . .
that every dream I had about motherhood would be ripped away to be exchanged for what I thought I could not handle on so many days . . .
If I had known he whole of it
and the hole it left when it was over
would it have made any difference?
No, a thousand times no! Not in my submission to God’s plan, not in my determination to make a difference, not in the depth of love God grew in me, not in my whole-hearted immersion in what it meant to be Lisa’s mother.
Because her losses were my losses, her victories were mine as well. I celebrated the first time Lisa read a book to me even though it was never grade-appropriate. I was ready to call a national holiday when she was able to get ready in the morning with minimal help. And when her dream of independent life came true and she moved into her first apartment, I was ready to stage a ticker tape parade.
Nothing in my life has shaped me more than being Lisa’s mother. Because it was so different and demanding, I could not depend on my own resources or dreams to get me through. I was utterly, helplessly and thankfully dependent on God’s wisdom. Forfeiting “mother knows best” to become “only God knows!” became my salvation, not my un-doing.
And so I say to all of you who mother children challenged by special needs, while your life is different and complicated; it is worth it. One smile, one victory, one hug, one word, one simple pleasure shared and your mother’s heart soars higher than anyone else’s. And grows in that moment I think. Grows bigger and deeper and more flexible. Grows to be more available and more vulnerable. Grows more capable even when you don’t feel it. Grows wiser when you feel less than wise. Grows to make you more than you would have been.
I recognize what you have given up to be the mother of your very special child. May you see some new budding from your faithful work. May you know that God knows what you have suffered and lost to mother his gift and that He will never leave you to grieve alone. You have earned a thousand times over what it means to be a mother. I celebrate you and invite everyone who reads this to do the same.
Would you do me a favor? Send this with an encouragement message to the mother you know is raising a child or children with special needs.