I exist in two very different worlds. In my safe world at home I have this beautiful loving boy who loves fire engines, hugs, kicking the ball and playing hide and seek. We laugh often and our world is full of hope and possibility. We celebrate the smallest milestones and we find joy in every moment.
Once I leave these four walls and enter into the outside world, our days are full of questions, paperwork and missed milestones. We are full of unknowns and constant concerns. I spend my days meeting with experts who only want to focus on the negatives. We focus on what Matthew can’t do and what he is behind on. We write it in a form and make sure we highlight the worst points. I tell them despite all this we are full of hope and determination for his future, they say that’s just a little too positive so we don’t put it in the assessment.
When we leave our four walls we seldom visit friends. Matthew won’t leave my side and to be honest sometimes I just don’t like answering people’s questions. Anything Matthew does I see friends give me a knowing nod like is this because of his ‘condition’. I smile and say no, you are a stranger and he is acting like a normal three year old. I won’t lie – he then usually makes a run for the front door and runs down the road screaming “no running, no running” – this is perhaps not normal behaviour ! 🙂 But in our cosy walls I can control the situations and life is normal. Matthew is happy to play with his brothers and sing and dance just like any other little boy. It has become easy to stay at home, to close our doors and control our environment. The outside world reminds me of all our unknowns and life becomes hard. At home we can manage anything!
I have a weekly conference call with work that I do from home – I have become an expert ninja mother at managing this! I make sure all the doors are locked ( in case Matthew decides to make a run for it), I make sure there are no objects on the kitchen table that he can fling anywhere, the microwave is turned off at the plug, I hide the step on top of the fridge, I make sure all the taps in bathrooms and kitchen are screwed tight so he can’t flood the bathroom (again), I put on the Tv, one biscuit, one juice and gently close the sitting room door. I set up my computer and phone and instantly put myself on mute so no one can hear Matthew if he cries. If Matthew comes in I throw the phone and laptop under the table cloth, if he sees the phone I have lost the battle! When the call is over a sigh a huge sense of relief and then … go and assess the damage. First, I take him off what ever table he is standing on. I then go to each of the toilets and retrieve any toys he has decided needed to go for a swim. I make sure he hasn’t tried to microwave anything and that he still has ten fingers and ten toes. Successs – at least 50% of the time ! Then we sit down and have some tea together as I feel like I have ran a marathon.
Then the guilt sets in, what could I have been doing with him in that half an hour when he was watching TV? Maybe I’m not doing enough ? What more could we be doing ? Maybe I should be bringing him to swimming? Craniosacrial therapy? Should he be gluten free ? Dairy free ? I don’t know…
I have taken an unexpected turn and have become a stay at home Mom, and I have learnt to love it. I love being the person my boys run to and I love being the one who does their homework with them. But … I also love to work. I have an inner workaholic inside me that I have tried to suffocate whilst I have been at home , it’s not going so well ! By suffocating her I have now become a soccer coach, a scout leader, I am doing a Masters and I also work part time. These distractions allow me to not focus on the black cloud that follows us and to keep life normal, but some days are harder than others. I am thankful for every hug and cuddle I get from this wonderful boy. When I say goodnight to him I hug him that bit longer so he knows that he is so loved. I stare at him when he is sleeping and I wonder what his life will be like, will he grow to be a doctor, a lawyer – what will be on his path.
These cosy walls are filled with endless love, hope and happiness.