The Courage to be Broken (Part 2)

Today, I am continuing our story as told to a wonderful group of Mothers of Preschoolers last week (MOPS). You can read part one of our story here.  Will you join me as I remember?

At nine months, only one of my three could sit up. By 12 months, only one could crawl. By 15 months, only one could walk – my daughter. By two years, the doctors had diagnosed both boys with Cerebral Palsy.

I have to tell you that I had days where my faith was as strong as always. Days where I imagined the testimony we would have when my boys caught up to their sister developmentally. Oh, I knew it would happen.

But doubt was creeping in, my faith was taking a beating, and I had days where being courageous was not even a goal.

I knew we had reached a turning point in our life. Immediately statistics were hurled at us. Statistics regarding whether or not they would walk, talk, be able to feed themselves. Statistics about their life-span, the effect the diagnosis would have on our marriage. Horrible scary, no-room-for-courage statistics.

My best girlfriend was supporting me long-distance. She called after discussing the prayer request with her pastor because he told her I “must be incredibly strong for God to give me two special children.”

I wanted to hug her for trying to encourage me and yet, I was relieved she lived so far away. Relieved because the distance meant she could not see my weakness – could not see how absolutely wrong her pastor was, because I did not feel strong at all. And I certainly did not feel incredibly strong.

I would gain victory for a time. I mean look at these adorable children! My days were filled with the sweetest smiles, the cutest little heads that popped up when I walked into the room and very little time to think of anything else – or even shower. 

Denial is a strong force and I camped out there for a while. Doctors said that if the boys could sit independently for a minute by the time they were two years old, they would walk. I worked every single day to “teach” them to sit independently. I would get Benjamin in just the right position and count as fast as I could, “One, two, three, four, five ,six….” And then try to convince Wade and myself that Benjamin had succeeded.

The preschool years were filled with micro-analyzing every single movement, every single struggle. By three, we were facing what we knew to be long-term disabilities. I kept trying to paint a rosey picture. I kept waiting for a miracle.

But these days were hard. And if I can be honest with you, sitting in a room room with preschool moms would have been a struggle. I tried play groups and Moms’ clubs, but Mamas ticking off the developmental milestones broke my heart. And expectant Mommies exclaiming that they didn’t care if it was a boy or a girl as long as it was healthy….well, I wanted to cry what, what happens if he isn’t healthy? But of course, I didn’t. I just avoided those situations as much as possible. Let me assure you, that is a terribly lonely place to be.

I didn’t want my friends to walk on eggshells, but I kind of needed my friends to walk on eggshells. I didn’t want them to have to think about every little thing they said – but can I tell you that as Mamas, sometimes we DO need to think about what we are saying? I have thought about this long and hard. I wanted to celebrate the milestones my friends’ children were reaching – but some days that was not possible. Can we lay down the right to compare and instead pick up the ability to share? If as friends you are living in relationship with each other, then you are going to be more aware of your comments, and a young Mama like me, is going to be free to say, “This hurts today. I love you, but this hurts.” If you are not in a relationship, then you have no business over-sharing the developmental milestones of your children. You have no idea what the mom sitting next to you might be going through.

And, can we just decide to never again say things like “I don’t care if it is a boy or a girl, as long as the baby is healthy?” That isn’t true. You will not love this child ANY less if he or she is NOT born healthy. Let’s just throw that cliché out the window. Can we? (Stepping off soap-box....)

Mason had been using a little walker to walk since he was 18 months old. He was eager to move and groove. Benjamin was quite content to sit in my lap and love and be loved but around three he started using a little walker as well.

I wouldn’t even allow the physical therapist to use the word “wheelchair” in his presence. I hated the “w” word. For me it represented all kinds of limitations, all kinds of restrictions. And frankly, it screamed that this was not a disability they would outgrow. I couldn’t bear it.  

When the triplets turned four, Mason had progressed from his little walker to the small cuff-crutches – we called them power sticks. He was fairly independent with those and so a wheelchair was not something anyone really wanted to discuss for him.

Benjamin was still using his little walker – and when I say “using” what I really mean is that I would set it down, put him in it and tell him to go. Fifteen minutes later, an exhausted little boy would arrive in his preschool class needing a nap.

It was about this time that he was at physical therapy and his therapist was working on getting him from the stroller to the walker. She had prompted and encouraged and finally he had slid his little self out of the stroller and into the walker, but he was in it backwards. She asked him what he thought he should do, to which Benjamin immediately replied,

“I guess I should do the Hokey-Pokey and turn myself around!”

My son was smart, kind and clever and I was forcing him to enter every room, every event too exhausted to shine because I was hung up on him "walking". I knew it was time to talk about wheelchairs.

When we went to try one out, my sweet boy – always intuitive – looked up at me and said, “But Mommy, I walk. I don’t need that.”

I wanted to scoop him up and leave but before I could he noticed the joystick and a smile lit his face like I had never seen before. He wanted to try one! The moment he realized he could move around his own space AND talk at the same time, he smiled even bigger than he had when he saw the joystick.

He went to time out for the first time in his life a couple of days later. We were in the hospital heading to physical therapy when he disappeared. We had an all out search. The little stinker was going into patient’s rooms to cheer them up. My little trouble-maker was five years old.

The triplets were the light of our lives. But Wade and I were wrestling with grief. Or at least he was wrestling with it. I was running from it. He could name it and call it what it was. I refused to grieve over my amazing children. I wanted to punch him every time he used the word. I wanted him to join me in my cup being half full. He was smart enough to recognize our cup was overflowing but that we also needed to meet the heartache head on.

When my sweet friend announced her pregnancy at Bible Study, I wanted to flee the room. I felt horribly guilty that I was struggling to celebrate her. “You are grieving,” my husband said.

When another friend’s husband bought their unborn son a baseball glove I burst into tears and had to duck into a bathroom. “Grief,” Wade said.

When I would take the long way home rather than drive by the little league field because it made me cry, I realized maybe, just maybe he was right.

But grief is about loss, I cried. I haven’t lost anything. I have been given something beautiful. And my guy held me, let me cry and  taught me we had lost a dream of what our boys’ lives would look like. That didn’t mean we didn’t adore them. That didn’t mean they weren’t amazing. And it didn’t mean God didn’t have a plan for them. But we needed to recognize the loss.

I will continue later....