I remember the first day Harry walked. Two little steps and tumble. More steps each time. Eventually stepping, walking and climbing trees.
I remember the first time Zachary walked. Huge relief and joy seeing as we weren’t too sure how that was going to go. The evil nature of meningitis could have robbed him of that ability.
I knew Reuben would not walk. I therefore never waited for that day. His brain bleed was so significant, from shortly after birth, they warned me this would be unlikely. I suppose I had hoped that they were wrong, and in so many areas of his life they were so far away from correct. A whole galaxy away from correct. Their medical crystal ball failed them. Though in the realms of independent walking, they were right.
When you have a baby, and you aren’t given a reason not to, you just expect them to do things. You expect them to meet milestones. Crawl, sit, speak, walk and all that stuff. When you are told they won’t, things change. Life’s natural timeline becomes muddled. All that stuff you naturally assume Mother Nature will grant your child goes out the window. It’s very strange as your child grows then, that you stop waiting for the inevitable to happen. You aren’t too sure where to pitch your expectations as you embark on this journey through your child’s development with a relatively unknown destination and many, many rest stops along the way. In so many ways, you are robbed of the major events. Things I took naturally for granted with Harry didn’t happen with the twins. It was confusing, as you examine every tiny event in more detail, cling on to every miniscule of hope, yearning for a little clue that just maybe a new skill is developing. Clock watching.
In my dreams at night (when they allowed me to sleep) my twins would be doing things together. Sitting on swings alongside each other at the park. Crawling after each other in the garden. On little double reins as I walked around Tesco. One wanting to go in one direction and one the other. Walking hand in hand. Me holding one little hand of each as we all skipped to school.
But when I woke up, that wasn’t reality. Reality was one unstable wobbly walker and one reliant on wheels. I won’t lie, I sometimes far preferred the dreams. I would give anything to experience what some other twin mummies did and have two busy twins who both require her to run in two directions at once. I would never moan about how they got into mischief or run away or play fight too much. I would just be grateful they could. That jealousy of other twin mummies is a tough one. I know many. They are lovely. They have lovely children. They are my friends. I just wish my twins had what theirs do. I used to actively avoid other twins. I know that’s daft but it hurt as I used to struggle a little with the ‘why’s. Why my twins…. Why my family…The worst times were when young babies soon overtook my then toddlers and left mine behind in the development stakes. Nothing quite like a slap in the face knowing your 5 year old has less ‘skills’ than the 2 year old sat at the table opposite you in Costa. It took a while to get through that but I did. I managed to curb my pangs of ‘if only’ and move on. Mainly because to the WHY questions, I never found an answer. So my never ending unanswered questions became ones we planted to the back of our minds, in an unopened state, as those are the sort of questions that would only ever be consuming, negative questions which would remain a mystery.
However…..on a flip side to the heartache of not expecting milestones to happen comes a very positive thing. When you don’t expect things, anything that does happen is amazing. I saw the twins’ early years in very different way to Harry’s. Every tiny little thing that the twins achieved made my heart soar. Of course they did with Harry too, yet with him I just saw it as a given it would happen. When he sat, or crawled or walked it was fantastic. I was so proud of him. Proud mummy moments.
With the twins, the goal post changed about 400 miles to the left. Sitting, crawling, walking were achievements that were potentially unreachable. Milestones that seemed ten thousand light years away. They were only in my hope. In my real world, I took great pride if the twins held eye contact with me, or if Zach turned towards a noise or if Reuben was able to raise his left hand. I remember celebrating that Reuben could chew a Quaver crisp and it didn’t choke him. I phoned most of the people I knew when Zachary started to wean off his oxygen. I thought all my Christmases had come at once when Reuben first made a sound that possibly resembled a word. Most people wouldn’t get these miniature progresses. If a stranger knew I was celebrating the fact that my son had managed to lift his leg for 2 seconds they’d look at me like I had 3 heads. For children who live with the conditions that mine do, milestones get broken down into millions of steps and every tiny one reached gives you the most phenomenal feeling that makes you want to shout from the rooftops.
Tonight, I’m not quite sure how I haven’t got up onto my rooftop and sung. Today was a great day that I will remember for ever. A day when you know all the hard work, efforts, worry, sleepless nights, therapies and battles were worth it. For today we reached a personal milestone for Reuben that was hanging around my consciousness in hope. It was in my dreams as a possibility. Today it became a reality.
Reuben today started his new chapter of life in his power chair. A little white and black electric chair which holds a key to so much for him. A little unimposing piece of kit which will give him some of the independence back that Cerebral Palsy took away. Not only did he manage to use it (with L plates and steel toe caps required) he loved it, smiled when he succeeded and giggled at himself when maybe his navigation was a little bit off.
We are lucky that he has one, lucky that he has the ability to use one. I’m feeling very blessed tonight. The ‘why him’ has turned far more into the ‘look at him!’. We rewrote that milestone book for him. Expectations of a child should not be measured in a blanket way but in a way that’s individualised, as in terms of what’s expected of him in child development he missed all those targets. Yet what he has achieved on his own agenda is astronomical and astounding. That tiny little baby given a black prognosis after birth tore across that play ground today with a gleam in his eye, proud of himself and proud of his wheels.
I never was able to experience with him the day he took his first steps. But actually, today I did. I got to experience what other mummies do. His wheels are ‘his legs’. He’s in control and today he took those equivalent ‘first steps’. The things you thought you’d never see maybe you do, just in a different way. The things you thought you’d never hear, I have……He shouted to me ‘Mummy, I’m coming to you’. And he did.