Chloe poses

Is the future bright or a little murky?

One of the things I always have in the back of my mind is what Chloe’s future looks like. Any parent of a special needs child I’m sure can empathise. You worry about their future, is it bright? What will they achieve? Will it be a day to day struggle, perhaps a little murky?

When I was pregnant with Chloe, and we dealt with our feelings about her heart condition, not knowing if she had a genetic or chromosomal abnormality, we just wondered how she would fare with her peers as she grew up a little compromised. Many kids today, living with CHD just go about their business as best they can, others rarely noticing they have limitations.

We joked that Chloe would never run marathons, (she would tire too quickly) or play contact sports… and thought about what activities she might enjoy as she grew up. The marathon thing didn’t worry us, I mean, neither of us are runners so where on earth would she get her athletic prowess from?

Now I wonder things like, will she know she is different? When will she hug me back? Will she ever hug me? Will she know how much she is loved? When will she walk? Will she walk? Will she talk? Will she make friends? Will others distance themselves from her? Will she get invited to birthday parties? Will people tease her? Stare? Be mean?

What about the future? The hopes and dreams most parents have for their children like go to university, graduate, find love, have a family…will she ever know these?

What about if she makes all the milestones and then regresses or just plateaus? These are very real possibilities. In my career as a teacher I have, more than once, sat in front of parents and explained the gap widening between their child’s accomplishments and those of their peers. When their child has received a diagnosis that causes developmental delay, often the gap is not that much different early in schooling, and then slowly becomes more noticeable over the years as their friends progress and they are held back by their academic limitations. I think one day, Mike and I will be on the other side of that conversation.

This week I asked my SLO friends on Facebook this question. What does the future look like for your kiddies? The answers were so varied, some giving so much hope of a ‘normal’ life, but most, giving hope that their child is thriving, but will never live what most of society would call ‘normal’. Words like ‘assisted living’, ‘full time care’…. ‘complications’ are more often used than others. Sometimes it’s a bitter pill to swallow that Chloe has these complications. And now we know it most likely won’t be her heart holding her back, but her SLO holding her back.

Sometimes reality is raw, it hits a nerve… I rarely think about these things preferring to dwell in the here and now. If I have learnt one thing (I’ve learnt many!)  in the last 12 months it’s to drink in every moment. Live in the now… you can’t worry about the future, it hasn’t happened yet! Still, you can’t bury your head in the sand. Even though it’s difficult to think about what the future looks like it’s important to be aware of it, somewhere in the peripheral workings of your mind. I believe in a sense that we are very lucky, we haven’t waited years for a diagnosis, we haven’t sat wondering what is ‘wrong’ with our daughter. We know. I know. Though we don’t know how that will manifest itself in the coming years, we know ultimately what ‘could’ happen.

The Bible talks about the future in Matthew 6. It talks about not being anxious.

 “I tell you, do not worry. Don’t worry about your life and what you will eat or drink. And don’t worry about your body and what you will wear. Isn’t there more to life than eating? Aren’t there more important things for the body than clothes?

“Look at the birds of the air. They don’t plant or gather crops. They don’t put away crops in storerooms. But your Father who is in heaven feeds them. Aren’t you worth much more than they are?

 “Can you add even one hour to your life by worrying?

To be able to live by this philosophy must be very freeing! It’s a work in progress for me. Though I know that Chloe’s life, ultimately is always in God’s hands. And we don’t know what the future holds…but as the Bible says… {Let tomorrow worry about itself because there is enough trouble in today!}

I’m thankful for my faith. What others may see as a crutch, I see as strength. Where do you turn for comfort, for hope if you don’t have it? I respect others’ worldviews, I don’t judge that people don’t think like me. But I am grateful that I know who holds us all in His hands. There is a comfort in knowing that God has seen the future, He is already there. However it turns out, my faith is in knowing that God has blessed us so far in this journey and He will continue to do so. We have been so blessed that Chloe is doing as amazing as she is.

I’m so grateful we’ve had barely any complications. We haven’t had long stays in hospitals, we haven’t had ongoing medical issues due to surgeries or complicated diagnoses that have changed the surgical path for her. Sure, it hasn’t been easy and it could change, but it could have been much more difficult. God has really held our family in His hands, and for that I am most grateful. Well, grateful is an understatement. That’s how I know that the future will take care of itself. Because hindsight is a wonderful thing!

I’m not a super spiritual person. I don’t share these musings on a general day to day basis. But sometimes, as I’m surrounded by stories of others who struggle I am reminded how blessed I am to be where I am today. As I write this, my beautiful daughter (albeit super grumpy due to what I think are teeth coming through!) has blessed me with her giggles, her commando crawling, her snuggles and her smiles today. Tonight, as I do each night, I gave her a bath, got her dressed for bed, put on some worship music and gave her a bottle. She snuggled into my arms and slowly succumbed to the sweet dreams of sleep. She won’t always do that, so today, I stop worrying about her somewhat murky future, and just be in the moment and remember to be blessed by these little moments not going by too fast!