What do you fear most as a special needs mom?

As a result of expecting our son with special needs around the time of Christmas, I felt like I could really relate to Mary. As special needs moms, we have a lot in common with her, I think. Now, don’t misunderstand me here. I don’t believe that Jesus was a special needs child, but He was special and unique, unlike any other baby every born. He was the Savior. God incarnate. Wonderful Counselor. Almighty God come to earth. He was perfect. He was sinless. Do you think Mary was terrified that she was chosen to be his mother? I believe so. But, yet she was willing and accepts her reality.

We also experience terrifying moments as special needs moms. One thing that I have feared is being able to answer my son’s questions about why God made him the way he is.

Even today, he said, Sometimes I feel like God made a mistake. Why doesn’t He just heal me now?

I want to acknowledge here that maybe your child doesn’t recognize they have differences. Maybe they can’t express it verbally. I can imagine your grief in this and want you to know you are seen. I’m praying the rest of this may still help you as you wrestle with your own questions or that of siblings, spouses, or other family members.

This is difficult. How do you balance sitting with them in their grief and not allowing them to wallow in self pity? I will never pretend to have all the answers, but here are two things I’m learning in this journey:

1. Be still and sit with him in his grief

2. Offer comfort and encouragement from scripture.

1. Be still and sit with him in his grief. Do you know how men get accused of being fixers? They won’t listen, but want to fix it for you. I’m wired that way too. I think it’s because as caregivers it’s difficult to see your children hurting. One time, Toby said to me, “Don’t try to fix it for me, Mom.” He just wanted me to listen. So as he grieves his differences and all the things he misses out on because of his condition. I’m learning to allow him to grieve. It is difficult to sit with people in their grief. It’s not comfortable, but it’s necessary.

2. Offer comfort and encouragement from scripture. Then there are other times when he needs a kick in the pants. It’s not good for him to wallow in self pity. He needs both grace and truth together – so like our perfect God. He needs reminders and encouragement, and so we talk through those.

One passage of scripture that has been a great comfort to us is John 9.

When it starts out the disciples are puzzling over the reasons a man may have been born blind. Did he sin? Did his parents sin? Jesus answers them, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.”

God had a plan to use the life of a blind man to display His glory – His mercy, His comfort, His healing power. Later on in the chapter, the man testifies to the Pharisees that he was healed by Jesus. This man’s life is changed as he acknowledges that Jesus is the Son of God, and he worships Him.

The amazing part about this narrative is NOT that he was healed, but that he acknowledged that Jesus is THE Son of God.

If this is what we learn through his condition, then dare I say: It’s worth it? In this journey if we are learning more about Christ, about His gracious mercy, His faithfulness, His loving fathering towards us, and we grow in our faith, then that is to the glory of God!

In our hard circumstances, we have two choices. We can choose to be bitter, harden our hearts, and be angry with the world, or we can choose to allow God to display his marvelous works through us. I want to be a testimony to God’s grace, mercy, healing.

It’s hard when I hear Toby ask why God doesn’t heal him here on earth. I sit with him int hat grief, but then we move on to some gentle reminders of how he has been healed in small ways such as:

  • Learning to eat by mouth
  • Not needing a ventilator during the day
  • No longer having a feeding tube.
  • Speaking even with a trach
  • His positive attitude
  • His courage
  • His perseverance

These are displays of God’s glory and works through Toby.

So, during this advent season as we consider Mary as a mother, just like us. She was called to a very difficult task. She experienced doubt and fear just like us. However, may we also emulate her surrender in saying, “Behold, I am the servant of the Lord; let it be to me according to your word.”