See, the thing is, I figured we had already punched that card.
We had a kid with special needs.
Card punched.
But there came a day when 7 of 8’s little wounded army soldier crawl had still not changed. And Mike looked at me. And I looked at Mike.
And I headed for the computer. And started to research.
By the time I took 7 of 8 in to the pediatrician, I had a pretty good idea of what we could be facing. I knew that the weakness on her left side could likely be from a stroke. And I also knew that there were far more alarming things that could be going on.
Her pediatrician confirmed my research and scheduled us for an MRI. The night before the MRI, as 7 of 8 was nursing herself to sleep, I broke. For a minute. I wept.
And then I tucked her in. And we went to the appointment the next day.
I stalked the pediatrician’s office by phone that afternoon. I was seasoned now and was fully aware that 7 of 8’s MRI results would be available online. I knew that there was no reason for us to have to wait out the holiday weekend.
Parenting 4 of 8 had taught me to be pleasant. And persistent.
Late that afternoon, the pediatrician called me back and confirmed what I thought. 7 of 8 had experienced an ischemic stroke sometime close to her birth, resulting in left side weakness, crimping her left arm and hand and sickling her left foot. The pediatrician was factual. I was pragmatic. We wished each other a happy holiday weekend.
And we hung up.
And I inhaled deeply.
It wasn’t any of the scary things it could have been. I had blessings to count.
Yet, it was news that changed things. Changed the schedule of our weeks as we would now add physical and occupational therapy to our days. Changed again my expectations of developmental milestones.
Changed things.
My coping mechanism is information. I threw myself into all manner of research. I blogged about her diagnosis. I learned the verbiage.
I ate.
I ached.
Because we had already walked a similar road with 4 of 8, the wash of emotions wasn’t unfamiliar. Just a familiar taste of acid on the tongue, a tang of bitterness in the overwhelming sweetness of loving this child. The palate of the soul can be tuned to pick up on any flavor, turning it over and over, savoring the sour.
Or choosing the sweet.
I choose the sweet.
Not in a Pollyanna way, you understand. Not in a self-righteous way. Not at all.
I can throw an amazing self-pity party when I want to.
But it is my primary goal for these children to know that I love and accept them exactly as they are created. And I believe they were created in the manner they were for a reason. A Divine reason.
And Mike and I were selected to parent them. They were entrusted to us.
If 4 of 8 never develops further in her speech, we adore her. If 7 of 8 refuses to use her left hand, we treasure her. Our affection is never predicated on their progress.
But I have never before known the kind of sweetness that comes in hearing a child who couldn’t communicate tell you that she loves you. There is nothing to compare in watching a child who has struggled through a stroke stand and take her first step, looking back to make sure you’re watching. There’s nothing like it.
Victories on a field that has been softened with tears. Milestones made from the crushed walls of pride and plans.
Mike will tell you, the hardest tears I have cried along this path have been over the amazing families I see in the waiting rooms and therapy clinics I have frequented with the girls. The children who have far more significant challenges than my children. The parents who love them and treasure them with a ferocity that glows with the most incredible hue.
And I have cried over those families I have sat alongside who are exhausted financially and emotionally, who are hardened and hurt, impatient and frustrated. I see through their prickly crust and see the lava of loneliness that churns in their hearts.
The waiting rooms. Those are the toughest places on this path.
And it has been in the crucible of those waiting rooms that the Lord used to ignite a flame in my heart. And He has brought resources to see it brought to fruition. I’ll be blogging about it more as things develop, but through some precious friends and God’s provision, we’re going to do something for these families, something that will bring rest and hope, dance and dreams.
I wouldn’t have known had it not been for these two little girls of mine. I wouldn’t have known that God can use waiting rooms to launch a vision. I wouldn’t have known.
But now I do.
I choose the sweet.
Steph says
((HUGS)) to you!
I needed this post. Thank you for writing it. Our Princess was born fine and dandy, but as she grew we knew something wasnt right. She has Asperger's. Then, our big boy was born at 35 weeks and we struggled with low tone and left sided weakness. Our 3rd was born and he is doing great and I figured we'd punched that card as well. Then Teeny was born…. and he started having cyanotic spells at 2 weeks, by 4 1/2 weeks we were back in Children's. We still dont know exactly what is wrong with him and are waiting on genetic results.
Like you, we have had the opportunity to see others in the hospital going through similar or way worse things with their children. And like you, we feel God has let us see that for a reason and we are trying to do something for those families.
Thank you for being willing to touch others even as you travel what is a very hard road. Thank you for being willing to be open about the bittersweet journey that is parenting a child with special needs!
Praying for you and your family!
100 Percent Cottam says
hi julie – it's natalie down the street…blog stalker extraordinaire! just had to tell you how inspirational you are! not to mention…i just ADORE your writing style. thanks for your thoughts…
Janet says
Yes, thanks for your thoughts. I needed this post too. Sometimes it's hard to find the silver linings- generally it just takes another mom to say something that clicks. Waiting rooms really are hard places- and we wait there 3 days a week for two different kids too. š It's reassuring in a way to know that other moms face similar hurdles. I wouldn't change my kids if I could. They are who they are because of the lives they've lived. Some days I sure wish I could wave a magic wand and make it all easier for them, though. Oh, yes I do.