Where is God with my two disabled children?
A friend wrote to me asking where God was in her life with two preschool children who have disabilities. Obviously, this is a really complicated question and I’ve tried very hard to respond (and prayed and prayed). I don’t have any simple answers because there are no simple answers. All I have is my own lived experience. For all you parents out there with children with disabilities, I see you. I see you at 3am putting on a feed. I see you getting up at 5.30am so you can have a shower by yourself. I see you sitting in the hallway outside their bedroom listening to their breathing. I see you never letting the other Mums see you cry.
When my son got his first diagnosis I didn’t realise it would be another 3 years until we had the whole picture. I didn’t realise how much effort I would need to expend just to get him through the system. I didn’t realise it was all up to me. It was on me. To push, to advocate, to get in front of the right doctors. The right therapists. To keep asking the hard questions. I have a very loving and involved husband but I was the one standing in front of the detective board. Y’know those boards they have on CSI with the photos and the bits of red string. I was like that. Mapping it all out. Trying to link up the clues. Trying to understand the “Why?” of it all. And that’s been the most maddening thing. There is no silver bullet. There is no “Why?” My son has had 7 different diagnoses. From 5 different specialists. There is no answer to “Why?”.
The first thing is grief. I love my child and I know you love yours so so much. But there is also grief. Grief for the different life they will lead. Grief for the dreams you had for them as you decorated their nursery. Grief that their life will be harder. Harder than normal. It will have more pain. It will have all the usual complications of being a child and a teenager with an added layer. And there is pain in that. There is loss in there. The inability to make their journey easier. To make their path straight. You know that their journey will be harder by default. And you cannot make it better. I needed to acknowledge my grief. To allow it to be spoken aloud, without guilt. I did this in the comfortable chair of a therapist’s office.
The second thing that kept coming up when I was praying about this was one of the most misquoted verses in the bible: Jeremiah 29:11, “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”
Now I love misquoted bible verses and this is hands down my favourite (I have a collection of out-of-context-verses in my bathroom). You see this verse a lot with inspirational photos and in swirly writing. As if God is promising to make our lives easier, like he is a magic Santa Claus that will reward Christians for their faithfulness with easy lives. In my experience, those with the truest of faiths often have the hardest lives. Those who work tirelessly for God’s mission carry heavy burdens.
Jeremiah was given this message as Israel was being taken into slavery in Babylon. The Israelites were about to experience inter-generational suffering. And at this time, God makes these audacious promises. God did not promise an easy life. Instead, God promised the Israelites he would be with them in their suffering. God promised them hope and a future in the middle of their pain.
God is still with us in our suffering. God is with us in our pain. And in those moments of bitterness, when we cry out to him, “Why? Why God?”, He is there. There is no more wholehearted prayer than a mother asking God that question. God is with you now. God is with your child.
The third thing that has come in answer to “Where is God?” is this really violent film on Netflix called “The Old Guard” with Charlize Theron. (Spoilers, obviously). In the movie, she is immortal and keeps saving the lives of random people. She becomes bitter and loses hope that humanity will get better. In the end, a CIA agent has done a CSI board with red string and he maps out the consequences of her actions. Just like my CSI board. The man’s life she saved has a child who cures Smallpox. Or their grandchild rescues thousands from the Nazis. Or something equally dramatic. We do not know the impact our children will have on their peers, their teachers, or the world. We do not know what will happen in the lives of our children’s children.
We cannot see as God sees.
We simply do not know how God will prosper us and the hope he has for us. This is the tricky bit. This is the faith bit.
We do know God is with us and He has plans for us.
I do know that I have the exhausting joy of raising my child. And some days, it’s just about getting to bedtime. I also know that God has plans to prosper me and to give me hope for a future. And these two “knowings” often feel in conflict. When they do, I have to trust that God sees more, knows more and is more than what I am feeling.
Bless you all. Do let me know if this resonates with you or if your experience is different. Much, much love to you, especially those of us raising extra special kids.
Rev Jessie
