Each summer during university breaks, I worked in a group home for six developmentally disabled adults. It was one of the most emotionally challenging, yet rewarding, jobs I’ve ever had. These individuals were grown men and women, finally living (with assistance) away from home. I was amazed to see the continued dedication their parents had for them, demonstrated through care packages, letters and visits. And I remember thinking how difficult it would be to have a child with such disabilities. But I also remember the joy, laughter and sheer sense of wonder each of them possessed – and unintentionally shared with me.
The greatest hope as a parent
Now that I have children, I realise that one of the greatest hopes a parent has is for their children to live long and healthy lives. During each of my two pregnancies, I wondered daily if my babies would be healthy. It was my greatest prayer that they would be. And at their births, I praised God with relief that they were.
I knew several parents with special needs children and wondered whether or not I had the faith or strength to be a mum to a child with a disability. To be truthful, I was thankful that God must have chosen to test my faith in a different way.
And He did. Less-than-perfect diagnoses for both our healthy children came later.
A shocking diagnosis
A few months after my first daughter turned two, she had a seizure. Unlike the more common febrile seizure that often accompanies a high fever, my daughter had a rarer complex partial seizure. These seizures can occur from a brain injury or because of some abnormality or irregularity in the brain waves. After extensive testing, we discovered that her brain waves showed a pattern common to epilepsy. The paediatric neurologist told us that she had a 70 per cent chance of having another seizure in the next year.
We were devastated.
Then a few months later, my gut instinct told me that there was something wrong with our second child, who had just turned a year old. I was right.
My younger daughter’s first four teeth had only recently come in, and they were all a bit strange looking. We made an appointment with a paediatric dentist, hoping he would say that these teeth were indeed "strange," but simply baby teeth, with no cause for alarm. Instead, he told us what my heart feared: Our daughter had a congenital birth defect called ectodermal dysplasia. All of her teeth would be malformed or missing, and she would most likely have few or no permanent teeth of her own.
We discovered that this genetic disorder affects at least two of the structures in the ectodermal cell layer that forms in the fourth week of gestation: hair, eyes, ears, teeth, skin, nails and sweat glands. And while a full diagnosis is still pending, the other structural disorder that our daughter most likely will contend with is diminished functioning in her sweat glands.
Grief and God’s peace
Again, we were devastated. We grieved mostly for the pain and struggle our girls may face as a result of these health issues. But because we have put our trust in God, we felt a calming, comforting peace that could only come from Him. While the health concerns of my precious girls pale in comparison to those of so many other children, I am a mother who knows what it’s like to worry, grieve and suffer alongside a sick child – no matter how grave the illness, need or disability.
The good news is that God cares and shares in the suffering of parents who have received overwhelming health-related diagnoses like these. And the peace of God, which passes all understanding, is available to all who put their trust in Him and place in His ultimate care the lives and futures of their children (Philippians 4:7). His strength has given us hope, and it can give you hope, too.
What I’ve learned
Here are a few things He has been teaching my heart along the way:
God loves you.
You are not alone. He knows exactly what you’re going through right now, and He cares. He’s got a plan to work for good through all of this, and believe it or not, He loves your children even more than you do. He will not leave you alone to handle this by yourself.
You didn’t do anything wrong.
Your child’s illness is not your fault. When all you want to do is help your little one find comfort, you feel more helpless than ever. And it’s easy to feel unnecessary guilt. The world is a hard, scary place to be sometimes, and unfortunately, you can’t shelter your children from pain all of the time. That is the reality of this life. We have to surrender our family to God each day, saying, "Take care of my child, Lord. You made their bodies and you know best how to restore them."
A good sense of humour goes a long way.
You’ve got to laugh. My brother-in-law grabbed my one-year-old’s head a few weeks after her diagnosis and said, "Cranky! She’s got powerful jaws and sharp teeth!" He was pretending he was an Australian crocodile hunter. We never laughed so hard. We needed to laugh. Of course, it’s important not to say things that would be hurtful to a child who has reached a sensitive age, but humour, used appropriately, can relieve tension. Your children will take their cues from you. If you have a positive attitude about their situation, and can find humour in the everyday things of life, you will encourage your child to do the same.
Friends can be a source of encouragement and comfort.
While it’s true that no one really knows what you’re going through except you (and to some extent, perhaps, your family), people still want to be there for you. Let them. God works through people in amazing ways. Don’t be afraid to receive from your friends, whether through a meal, baby-sitting, prayers or words of comfort. Sure, it’s uncomfortable to feel needy, but the reality is, you are needy right now. That’s OK. Let your friends receive the blessing that comes in reaching out and giving to you.
Friends can be a source of discouragement and distress.
You know the kind. The friends who think they’re "helping" by telling you the latest miracle drug they discovered on the Internet or heard about through a friend of a friend’s niece’s cousin’s doctor. If a well-intentioned person is causing you unwarranted fear, or suggesting that your child would get well if you did such-and-such, resolve to not discuss your child’s health matters with them anymore. These people will only bring you down.
God gives strength to those who ask.
There is nothing more painful than to see your child suffer. Be honest with God about your feelings. Ask Him to help you trust Him with your child’s health. And if you are able to give God your trust, you’ll discover that He will give you His heart. Then, you’ll realise that you are sharing in His suffering for His children. Through this pain, God has given you an opportunity to look into His own heart and walk beside Him.
Be encouraged. God will reveal His faithfulness to you in amazing, tangible ways – through your precious children.