Before my second child arrived into the world, apart from the usual pregnancy anxiety thoughts of “Please let my baby be born healthy,” I hadn’t realised how many parents had children with serious health complications, and all that entailed for their future.
For some parents it means they’ll never hear their child talk. And for others the diagnosis brings the news that their child won’t ever take their first steps. Having to accept both, plus the knowledge that you’ll be saying goodbye to your child too early, is an incomprehensible thought until you’re dealing with the reality of the situation.
I had no idea just how vast and wide the special needs community was until I found them at my lowest ebb. My daughter was only 5 months old when we received the urgent phone call to come into the hospital. Her brain MRI results were in and things sounded serious.
Our earth tilted off its axis that day and it took a long time for us to find our feet again.
I’ll never forget the moment I sat across from the genetic doctor as she compassionately discussed the future of my baby. It was as though each basic human function that we take for granted was being taken away from my 5-month old baby. The news worsened at every stage of her diagnosis.
As all Mothers do, I instinctively fought for my baby and I went into research overdrive, using every spare moment I had to find solutions. When I was told she wouldn’t be able to talk I suggested we use sign language. Each suggestion was met with another setback and progress block with answers like “no, that won’t be possible because of the type of Cerebral Palsy your daughter has. She’s not going to have the fine motor skills required to sign.”
The period of time after the diagnosis was a blur of grief, Google research and just trying to get on with it. I’d waver from being Super Mama, determined that my child would be the exception, to feeling like I couldn’t make it through another day.
As well as the impact on my baby, I was worried about my entire family unit, with my husband and second daughter also affected. Raising a child with special needs is a daunting task for any family. The physical and emotional workload is overwhelming. The grief process you go through seems endless as each new morsel of information sinks in, like your child never nailing those childhood milestones like other kids. Those precious milestones we take for granted, like the first steps, using a spoon for the first time, and saying Mama, Papa and bisgetti for spaghetti.
I spent so much time worrying about the medical conditions, possible solutions, the therapy involved, the hospital visits, conflicting information, huge life decisions, and of course running a household for both my daughters and my husband.
To say my life cup was empty would be a huge understatement. It was empty with holes in it and nothing coming in the top to fill it up. A shower longer than 5 minutes was a rare luxury. I had no time for myself. I had no self-care. I was last in the pecking order.
My stress levels were through the roof. I was run down but living on adrenalin, cortisol and coffee. Which isn’t a good long-term game plan for a healthy life.
And I’m not alone, in fact a scientific study by researchers at the University of Wisconsin-Madison, states that special needs parents over produce the hormone cortisol that allows them to endure stress just like a combat soldier. In fight or flight mode, special needs parents are in an ongoing fight for their babies’ lives.
The US National Library of Medicine conducted an independent research and found that just as a soldier is on high alert to enter into battle at any moment, parents are constantly looking after their child or on active standby to jump back into the fray for emergencies at any hour of the day or night. Can you imagine what is must feel like to go into battle when you’re completely exhausted? It’s tiring enough as a new Mum of a healthy baby, but when these children are fully dependent on their parents for most of their basic human needs it amplifies the stress, tiredness and the amounts of cortisol that your body produces.
This stress cocktail has knock on effects into every single part of your life.
Another study was held on mothers who had reared children with special needs. On a day-to-day basis, the mothers in the study experienced more stressful events and had less time for themselves compared to other mothers of neurotypical children. That isn’t earth-shattering news, as you’d expect those results. But the study found that as a result, these mothers experienced the shortening of their telomeres due to stress.
What is a telomere and why should you care? Well a telomere has been compared to the plastic tips on the end of your shoelaces. They keep your chromosomes from fraying or sticking to each other.
Our telomeres get shorter as we get older. The shortening of our telomeres is associated with aging, cancer and a higher risk of death. So when your stress filled, no self-care, empty cup, lifestyle is actively shortening your healthy “shoelace” you need to do address the balance. Before it’s too late.
The good news is that there are many things we can do to increase the length of our telomeres. Taking the time to make changes that increase our overall sense of wellbeing, our health, vitality and longevity (yep, that’s the important one) is paramount for us to continue to look after the people who depend on us. And it’s crucial for us as Mothers to find the balance so we enjoy our own lives instead of continually putting ourselves last.
Making healthy lifestyle choices and implementing stress reduction techniques such as, yoga, meditation, exercise and deep rest, can slow the rate of telomeres shortening. So it’s worth calling in favours to give yourself YOU time. It’s worth putting boundaries in place so you start refilling your life cup – even if it’s a snatched 20-minute meditation session to begin with.
The stress of raising a special needs child isn’t going to go away. What IS in our control is how we deal with that stress and we can do that far better when we’re honouring and valuing our own self-care practices.
We can do that far better when we shelve the guilt we have for taking time out for ourselves. And to start with, when the guilt levels are high, keep in mind that you’re taking time out to refresh and recharge so you can better support your family and keep them moving forward.
There’s always a silver lining and regardless of the stress and special needs parenting, research also shows that mothers of children with developmental disabilities were just as likely to have positive experiences each day. When you can enjoy the little milestones it gives you energy to propel you forward through the challenges.
Self-care plays such a crucial role in our ability to not only survive, but to thrive throughout the special needs journey. The better equipped we are to manage the full range of challenges that come with raising a special needs family, the more space we create to live a wonderful and fulfilling life beyond our wildest dreams.
So what are you waiting for Mama?
What steps will you put in place to honour YOUR self-care today? Start now by listening to a relaxing 10 minute meditation to raise those feel good endorphins in your mind and body.