We often hear the term “leap of faith”. Three simple words.
Saying these three simple words is easy, but truly living them out is a different story.
My husband and I always joke with each other saying that nothing in our lives comes easy or goes as planned. We are okay with this, because what does come into our life is usually the opposite of what we planned, but ends up being truly beautiful.
Our son Daniel is nine years old and has cerebral palsy. He has been home with us for six months now.
Our journey started in 2015 with a plan to add a daughter to our family. But, as I said, nothing in our lives goes as planned.
All it took was one look at a picture of Daniel and that was it. He was our son.
Daniel was a special focus child with the special need of cerebral palsy. We knew nothing about cerebral palsy, and it was not a need that we had even considered. Daniel’s file indicated that his CP affected his right arm and leg.
As we learned more about Daniel’s special needs, we worried whether we could parent a child with cerebral palsy.
We wondered if he would fit in with our active family.
Would he be able to keep up with our two existing boys?
Would he be able to hike with Angelo or skateboard with Matthew?
Would he be able to swim in our pool?
But we kept going back to this picture of a little boy with the saddest eyes.
So we took a leap of faith. We put our trust in God and said yes to Daniel’s referral.
Then came the hard part, the endless paperwork and the painful waiting to get our son home. During this process, I would daydream about how our “Family Day” would go. I would play out all the different scenarios in my head.
Would he run into my arms, happy to at last have a momma and baba?
Would he be shy and withdrawn?
Would he cry and reject us?
Although I thought of a hundred different ways our “Family Day” would go, it didn’t go like any of the scenarios I had envisioned.
It was heartbreaking.
Daniel was devastated. He cried like no child should ever cry. He was inconsolable. He cried out for his foster momma and would not let us anywhere near him. My heart broke for him. It was the greatest pain I had ever felt for someone. And it was for our little boy.
This little boy, our son, was in so much pain and we were the cause of it. The two people, who were going to love him unconditionally for the rest of his life, were the ones that were causing him so much fear and devastation.
At that moment, the cerebral palsy didn’t scare us at all.
What we now had to focus on was how to mend this little boy’s broken heart and earn his trust. Over the next few days Daniel began bonding with my husband. But he wanted nothing to do with me. Daniel completely rejected me. He wouldn’t even acknowledge that I was there. He was even physically aggressive toward me when I approached him.
But every once in awhile, when he was caught off guard, we would have a moment when there was no rejection or no aggressive behavior, just some giggles while playing. Each day those little moments began to multiply and slowly the rejection seemed to be fading. We were slowly developing a bond.
Now let’s fast forward to our new life.
This life now consists of doctor appointments, physical therapy appointments, occupational therapy appointments, and MRI appointments. And when hearing the doctor’s examination results, it actually put me right back in that place of fear. Hearing that my child suffered a stroke in utero that affected 1/3 of the left side of the brain and that his future was a wait and see how he develops, was not what we were expecting to hear.
But, this was our reality. This was our new world, our new normal.
I am happy to say that our new world, our new normal, is pretty amazing. Daniel is funny, active, and can definitely keep up with his two older brothers. We think back to the days when Daniel’s diagnoses scared us, and we were so worried that he would be left behind from family activities.
Daniel has proved our fears wrong.
Daniel enjoys hiking, camping, and swims like a fish in our pool. He is learning the art of skateboarding. Daniel will try anything and everything from sledding to football. He is a typical nine year old boy who loves his brothers and loves to test his mommy. He loves to cook and help out and wants to be a part of everything that is going on around him.
But most of all, he is so very happy.
We did not send Daniel immediately to school. We made the decision to wait a few months before he would start school. Daniel was such a broken and angry little boy. We had taken his entire world away from him. We felt that he needed time with his family, time with mommy, and time to begin to trust us.
I needed this time with Daniel, too. Daniel especially resented and blamed me for taking his world away and hated me because of this. I needed this time to start to build a relationship with him. I needed time to get Daniel to trust me and maybe even like me. I needed the time when it could be just Daniel and me.
When my husband was at work and his brothers were at school, Daniel would be forced to spend time with just me.
It was really hard in the beginning. He would have complete meltdowns when Daddy left for work, and he would not look at me or talk to me and if I tried to console him, his aggressions would take over. He would hit and kick me. Yes, he was a hard child to like, but, he was an easy child to love. During this time he started to trust me a little more each day.
It was a slow process and a painful process but – bit by bit – we were starting to have a positive relationship.
Right before the Christmas holiday, we felt Daniel was ready to start school. His spoken English was coming along, and he was itching to ride the school bus.
I am so glad we waited. I am glad I had this time with my son, Daniel.
I’m happy to say, school is going pretty well. We are struggling with some behavior issues, but he is a nine year old boy trying to find his place. Daniel continues to occasionally make wrong choices, and he learns from his mistakes. But he still loves school.
He comes home from school so excited. He can’t wait to say things like, “Mommy, I had gym today. Mommy, we ran in gym. Mommy, I love to run!” He says this with the biggest smile on his face. He is very happy and that makes me happy!
How does cerebral palsy affect our daily life?
Well, it really doesn’t.
The biggest impact CP has in our daily life is the need to schedule Daniel’s weekly PT and OT appointments. Other than that, he is our perfect nine year old little boy, who happens to have CP.
– guest post by Linda