It’s World Down’s Syndrome Awareness week this week so I wanted to share some of our journey with Katherine, our beautiful three and a half year old, who has Down’s syndrome.
As with previous pregnancies, this one had been smooth and relatively easy-going – the only accompaniments were reflux and the typical third trimester discomfort. At our 34-week scan there was concern that our baby was on the small side – she seemed to be healthy but was just not growing at the rate expected, and there was concern that the placenta wasn’t getting enough nutrients to her. Closer monitoring followed. We weren’t particularly worried and no one really gave us any cause for concern. There was talk that she might have to be induced early if she seemed to not be thriving in the womb, but only if there was a drastic drop in her weight gain.
There’s something about the uncertainty of the last weeks of pregnancy – for us human beings who like to be in control – that is a little unnerving. Knowing the baby has to come, but not knowing when or what it will be like. As much as I tried to lay down my expectations and trust God with the timing, anxiety was still tugging at me. I was anxious about leaving the other two girls – still babies in my eyes at just two and a half and one and a quarter – even though I knew they were in good hands, knowing that their little worlds were going to be shaken with Daddy and Mummy away at the hospital and a new baby sister soon arriving on the scene.
I’d hoped that the birth would be quick and relatively easy and we’d soon be home again (don’t all women!!) – it was our third baby in less than 3 years after all – but it was far from what I hoped and prayed for. I was induced and contractions were plentiful but not fruitful…it took a very long 48 or so hours to even get to the point of the doctor being able to break my water…and then things went wrong. The closely monitored baby was in distress and I was rushed to theatre for an emergency c-section. We prayed and begged that I could stay awake for it rather than be completely knocked out, and thankfully God made a way. But it was a fairly traumatic experience and I reacted horribly to the anesthetic.
Through the haze of medications and post-emergency surgery recovery I remember looking over at our newborn, Katherine, lying in the hospital bassinet a few meters away and asking Bill what was wrong with her. Even without my glasses on I could see that she didn’t look ‘right’. I’d kissed her through tears whilst still on the operating table as she was held to my face, but hadn’t noticed anything. A short time later a doctor appeared and delivered the news to us that they suspected Katherine had Down’s syndrome.
The minutes, hours and days after that were a blur. We cried many tears. We wondered if we’d done something to cause it. We knew so little. Neither Bill nor I had really known anyone with Down syndrome. Research on the one hand could calm fears, on the other it could exacerbate them. We had to keep turning to and trusting that the God who had created Katherine and given her to us, would lead us through, but it was hard. Down’s syndrome was not a diagnosis we had planned or desired for our baby, and it was definitely not what we’d imagined or dreamed for her. In the first 24 hours we received news of her heart defects and more of what a Down syndrome diagnosis meant, and our fears and grief escalated.
We couldn’t say the words ‘Down’s syndrome’ for weeks without bawling. Fears of the unknown, anxiety about her future and what it would look like, and alarm about the prospect of her medical needs were just a few of the things we had to battle through amidst the regular exhaustion and emotions of having a newborn as well as two toddlers.
Really I think we were in shock for a good portion of Katherine’s first year. We gradually began to accept the diagnosis, to research and to slowly connect to the well established support network in Orlando, but it was a challenge and a shift in our mindsets and life. I’ve always loved medical stuff and in one season of life considered going into medicine. During Katherine’s first year I was very thankful for that because we spent a lot of time at hospital appointments, hospitalized with sickness and surgeries, and generally in the medical realm. After Katherine’s first hospitalization at 6 months (for RSV) she came home on oxygen and with an NG tube, and even our home began to fill with medical equipment. We learnt a lot. Caring for a sick child can be very stressful and exhausting though, and the four months after she had RSV were some of the most challenging and demanding (bearing in mind we also had a young Abigail & Audrey to love on and tend to). Katherine had congenital heart failure and it became clear she would need surgery. She was reacting to the heart medicines she was on and vomiting typically 6-8 times a day. That meant 6-8 changes of clothes a day…masses of laundry on top of everything else!! At 9 months she had open heart surgery to repair the VSD, ASD’s & PDA. That made the world of difference. Not many days after surgery she sat up for the first time and then took off in leaps and bounds.
About 6 weeks or so before Katherine was born I had been stressing about how we were going to cope with the demands of having 3 girls under the age of 3. The Lord spoke to my heart and told me that this child would bring great joy. Little did I know! In spite of the shock and trauma of the delivery, diagnosis and challenging first year, Katherine has indeed been the bringer of great joy in our family.
She has a way of delight about her, a joy that shines. Like all children she has a full range of emotions…she can be miserable and angry, sad and hurting…but she’s also quick to smile, giggle and rejoice. Katherine loves music, she loves to dance, she loves to play. The geneticist who saw Katherine in the months after she was born said that having two older sisters (not much older!) was the best thing for her – she sees and copies and wants to be like them and to do everything they do. And that spurs her on. And to this day she wants to be just like them, to do everything they do, and she makes sure that we know that it’s her turn next, that she wants to climb that high, jump that far, swing that wide, eat that snack. Oh she wants to do it all! And she’s determined. And she’s smart. And she’s able. Mostly. It may take a bit longer, it may require more work, it may mean help, but there is no stopping this girl.
In spite of Katherine’s additional needs, we’ve tried to treat her the same as her sisters…to let her adventure as they do, to discipline her as we do them, to teach her and train her, love her and release her in all the same ways. They are more alike than different. We are still on a great learning curve. Katherine is smart, and she ‘gets’ a great deal, but she has little verbal communication as yet, so both she and we can get frustrated and exasperated when we’re not ‘getting’ each other or we’re not understanding what she needs or wants. It can be very hard to discipline her because we’re not sure how much she’s really understanding and there seems to be a gap somewhere in connecting an action with the consequences. We still shed many tears and cry many prayers before the Lord in need of wisdom and help and grace to parent her well. As we do for the other 3 girls too.
Back in March last year when we were given a word about coming to England, Bill and I both immediately reacted with a ‘no!’ It wasn’t a no to the Lord, but when we talked we realized that both of us had immediately thought about Katherine and her health issues and all the medical doctors and therapists she was established with and we thought, ‘maybe a few years down the road’. God knows how to take care of us and to meet us where we are (and to move us speedily)! Although Katherine was tube fed (via a g-tube) from 6 months to 3+ years, by August last year we had agreement from her GI doctor to try stopping her tube feeds altogether so that she’d get hungry and want to eat more. It took a while but she began to eat properly. And in October 10 month old Ruth kindly ended the whole g-tube thing by ripping the tube & button out of her belly during a diaper change whilst we were way out in the country on a trip to England, without access to a new button. With that gone, and the all clear from cardiology, pulmonology, hematology, genetics and then GI, Katherine was in good stead to move to England. In October we started her on a TNI (Targeted Nutritional Intervention) regime and she is thriving.
Katherine’s full name means “pure, clear, my God has answered me with joy” and though we didn’t know it at her birth, in the three and half years since we have come to realize that God answered us with a gift, a gift of great joy and delight in Katherine. She’s a gem, a treasure. She loves, snuggles, hugs and kisses with freedom and heart. God has used her to shape our family, to affect and grow our other girls, to teach us much. And we continue to learn, continue to wonder, continue to embrace this gift of life wrapped up as this bundle of joy named Katherine.
Pursuing Purpose 