Prior to Raphael’s birth I would often watch other mums and their kids with an affectionate mutual understanding. A mother looking vacant and dazed after a long night of relentless wakings. Another mother struggling to get her 3 young children to all move along together down the shopping aisle and to stop pulling things off the shelves, or painfully a wrestling a toddler and capsule out of the car just to get that desperately needed coffee. Mothers trying to keep their littlies quiet for just 10 minutes during mass so she can focus on what she came for. I watch it all play out with a small smile on my face, feeling connected to this mum, knowing her struggles.
Fast forward 3 months, I’ve given birth to my darling little boy. He’s had a post natal diagnosis of Trisomy 21, and multiple complex health issues that have kept him in ICU for 2 months. We’re finally home and waiting for the call back in for his open heart surgery, the first of many. I’ve got a year of hospital admissions ahead and a lifetime of down syndrome ahead of me. A rollercoaster of a ride it has been so far, but being at home is the best feeling in the world and mostly – I feel grateful.
I venture out of the house to get milk – a simple task, but a challenge with Raphael’s current health needs and the equipment he is on. I see another mother with a few kids, and I notice a great big hole in my own heart. Where I used to feel a connection to this mother I now feel nothing. Totally disconnected. I search my emotions – why do I feel so miserable? I feel nothing like this mother. We don’t relate to the same things anymore – I know with a sinking feeling that if I even tried to explain all the new challenges in my life I couldn’t – I know she’d never be able to truly picture it.
I yearn for the old difficulties of a ‘normal’ mum. I feel annoyed. I didn’t ask to be a ‘special needs’ mum – I just wanted to be a normal one! The realisation that I’m not part of that club anymore hurts. In that moment I suddenly feel totally isolated.
Special needs mums – I know. I know how hard it is to hear someone for the millionth time say how lucky you are to be “blessed” when you feel like you’re the only one who is allowed to say that. I know that you start explaining why something is hard and then quickly wrap it up before you even get to the hard part, because you can see the other mums eyes glazing over and you know immediately that she doesn’t get it.
I know how painful it is when someone tries to justify that their life is just as hard as yours because they also have young children. Or when someone tries to give you a piece of advice that you know would never work because your baby’s special needs make it impossible, but you just nod and say it’s a good idea, because if you tried to explain it would sound once again that your trying to seek out sympathy. I know the pain you feel when loved ones avoid reaching out because they don’t know what to say, or they just want you to be ‘back to normal’ so they can stop worrying and move on. Or when they get annoyed because you can’t make it to something that would be physically impossible with this new complex situation you’re in.
But it doesn’t matter that they don’t get it. It doesn’t matter that people will never understand. Because one person sees you. He sees everything you carry. He sees your burden. He gave it to you! and he knows every single struggle – he collects every single tear in his bottle and records each in his book. He knows exactly how hard it is, and he gave you just the right amount of resilience and strength for this when he designed you! and with His grace eventually…. things will become a little easier, and you will care a little less about whether people understand you or not. You will start to see that ‘normal’ mums also carry burdens; burdens of children who have strayed, burdens of children struggling with addiction, burdens of husbands who are always away for work, burdens of marriages that have fallen apart and the deep loneliness that brings.
You instead will love your family for all its joy, and for all its love, and your special needs burdens will sink into the background just like the wallpaper. Always there, but just a part of the loving home you have built.
I wrote this blog post a few weeks after we first returned home with Raphael the first time. Three months later and I must say, I feel like a different woman than the one who wrote this. Raph’s need have been become easier and easier to manage and we have become more and more capable in caring for him. The ‘special needs’ club is not like any other club I have been a part of. Its amazing, empowering and down right awesome! Thank you for showing me a world of the strongest, loving and welcoming mothers I have ever met !