“When he smiled the heavens opened”

BY RUTH GARVEY-WILLIAMS

BY RUTH GARVEY-WILLIAMS

“Motherhood is about celebrating the child you have, not the child you thought you’d have. It’s about understanding he is exactly the person he is supposed to be. And if you are lucky, he might be the teacher who turns you into the person you are supposed to be.” Jennifer Russell from Letterkenny in County Donegal shares her story as a “special needs mum”.

Q: Tell us about yourself 
I have been married to Trevor for 18 years. We have four sons aged 15, 14, nine and seven. I am a full time mum and my husband is pastor. Our church is growing steadily, so life is busy. 

Our youngest son, Ethan, was born with a rare genetic chromosome disorder called Cri-du-chat (CDC) or 5p minus syndrome. Every CDC child is unique but there are some common threads. Significant mental and physical delays are almost always present - Ethan has both. Low birth weight, small head (microcephaly), webbing of fingers and ‘almond’ shaped eyes are also common. The French doctor who discovered CDC named it, ‘Cri-du-chat’ literally meaning ‘cry of the cat’.

When Ethan was born he couldn’t cry because his larynx wasn’t formed properly. When he did attempt a weak cry, he sounded like a kitten, hence the name. (Personally, I never liked it!)

I knew Ethan was no surprise. He wasn’t a mistake or a punishment. He was created by the hands of the Master.

Q: What does your faith mean to you?
I always went to church, so I was well versed in Bible stories. As a teenager, I started going out with friends and because I looked older than I was, I got into places I shouldn’t have. I enjoyed myself but there was always something missing.  When I came home, I felt so alone. My friends and the ‘fun’ had gone, until the next time. 

I never lost interest in God. I believed He was there but I never really understood how He worked. Was He good? Would He punish me for stepping out of line? Did He really care about me?

I became a Christian at 16 at a youth rally in Derry. The speaker talked of a God who loved me enough to allow His son to die for me but that I needed to make a choice. One verse helped me from 1 Kings 18:21, “How much longer will you waver between two opinions? If the Lord is God then follow Him, but if Baal is God follow him.”

I knew I needed to choose God and so I did. He has been my strength ever since.  Jesus is real to me every day. I wake in the morning knowing that, no matter what comes, we can handle it together.

Q: When did you first know there was something ‘wrong’ with Ethan?
When I was six months pregnant, I noticed Ethan wasn’t moving as much as my other children.  My doctor sent me for a scan, which led to a deeper scan. I started thinking, “Ok, that’s not good.”  The scans showed that Ethan’s head and body were out of proportion… something was up!   

Ethan was born by Caesarean at 42 weeks. He didn’t cry at first and there was a tense moment until he made a little squeak. His heart rate and breathing were worryingly irregular so he was whisked away to the baby unit.  It was hard not knowing what was happening but I knew God was with him. Although things were not ‘normal’, somehow I knew it would be okay. Whatever was wrong, we would face it together: Trevor, God and me.

Ethan stayed in the unit for five days having various tests. On day six we went home, still without a diagnosis. We had weekly visits with his consultant (who was fabulous) until seven weeks and his results were in… that was when our journey with Cri-du-chat began.

Q: How did you cope?
I’m not sure we did. There are times in life when you just ‘do’. It was almost surreal. I half expected the consultant to give me a prescription for six months and Ethan would be fine. We prayed (a lot) and I cried (a lot!). We didn’t really know what to do other than to try and climb this mountain before us. 

We both knew and trusted God, so our faith kicked in. We had three other small boys as well. They still needed to be fed, washed, cuddled and taken to school, so life went on: a brand new life but our new life.

The specialists here knew very little about CDC at that time.  They were supportive but couldn’t offer advice. We searched the Internet but stopped very quickly because the information available was devastating; it gave no hope. 

But I had to trust in God, who promised never to leave me. I knew Ethan was no surprise. He wasn’t a mistake or a punishment. He was created by the hands of the Master.  And so we coped!

As Mummy, I feel it is my job to make it better. But I can’t change this. I can’t make a chromosome appear.

Q: What are the biggest challenges of being the mum of a special needs child?
Every day can be a challenge. Ethan’s health is unpredictable. He lives on antibiotics and his immune system is fragile. Ethan has a high risk of choking. All his food is extremely soft or pureed, so we need to be vigilant when he is around others while eating. We almost lost him three years ago when he grabbed a piece of food and choked really badly. 

Ethan started to walk over a year ago (a miracle!) but is still very unsteady and needs a lot of help.  Trevor and I both have neck and shoulder issues!

Emotionally the biggest challenge is that I can’t fix it for Ethan. As Mummy, I feel it is my job to make it better. But I can’t change this. I can’t make a chromosome appear. That can be a bitter pill some days. 

Q: What are your greatest joys?
I am honored to be a mum to four fantastic boys. Ethan has brought a joy so deep that words can’t cover it. We experience pride like nothing else when he achieves the smallest thing. We were told he was unlikely to smile, talk, eat from a spoon, hold his own juice or make a choice for himself. So when these things happened, we celebrated like mad. 

He was nine months when he smiled at me - a little crooked wobbly smile but it was like the heavens had opened. I knew then that our little miracle would do well. 

He was two when he sat up unaided and five and a half when he took his first steps. I think they could hear my squeals of delight across the globe. I am so blessed to have witnessed the ‘tiny’ major stages of his life.  These triumphs keep me going.

Q: How can churches be more welcoming for people with special needs and their families? 
Churches are not always well equipped to deal with profound disabilities. We can put in a ramp and widen doors but to be accepting or welcoming is difficult.  People don’t know what to say. As Christians who believe in a good and righteous God, there are many questions. 

We had all kinds of reactions. Some claimed Ethan would be “fine in Jesus name” and prayed for healing.  Others said we had sinned and he was a punishment from God.  Someone even told me it was my fault Ethan was disabled because I didn’t have enough faith. All of which, I believe, is nonsense! 

I believe wholeheartedly that God is sovereign and has a plan in our mess and confusion! Things happen. We can’t understand it all but Isaiah 55:8 says, "For my thoughts are not your thoughts, neither are your ways my ways," declares the Lord.  

Churches need to give space for parents of special children to come to terms with their child and not be bombarded with “answers”. We have enough information from hospitals. Church should be a place where people can be accepted for who they are. 

“Can I help?”  Or simply, “You are in my prayers” is often all that is needed for parents who feel they are crawling through.  Practically, providing for special needs can be difficult. At seven, Ethan is still in the crèche for under-threes. For now, he is happy there and the helpers are happy to have him. 

Q: Some people get angry with God when they see children with illnesses, disabilities or special needs. How do you react to that? 
It is natural to get angry with God when things go wrong. Everyone reacts differently. Dealing with your emotions is a process and you shouldn’t deny them. If you are angry, then be honest with yourself and God. But don’t let anger eat you up inside. 

I wasn’t angry but I was sad for a long time. I talked to God and I cried for strength. I talked to doctors.  I found friends in a similar situation and chatted over coffee. There are still days when I get sad but I try to find help and not let it take over.  God loves us and I believe He will carry us out the other side!