On reflection, Reuben aged 2

“I don’t want to miss a thing”.

Words composed so early on on this blog and now as Reuben has passed his marvellous milestone of 2 years old, I’m reminded of that sentiment once again.

I don't want to blink lest I miss a milestone.

I sometimes look at children in the playground with their nannies and think how it’s working for other families, and yet it’s as far away from what I want for Reuben, Callum and me as I could ever imagine.

I look back to the days spent in the hospital with Reuben, the intensity of it and look at him now and wonder where the time has gone. The answer of course has been an immensely tough journey, at times crucifying painful and seemingly insurmountable, yet still, I regret the times I haven’t been with him. I need Reuben as much as he needs me and though I can't change what is passed, I can still change the future.

I know I need help and that in itself is difficult to accept, help which at first shared the burden of all his medical needs. But I never have needed help to be a mother to him, help in feeling what “cannot be seen or heard nor even touched, but felt in the heart”, only help that allows me to spend as much time as possible with him. Reuben needs time too to be by himself, to explore his environment, to make his own mistakes, to discover his own secret garden, build his own castles, to make believe. And other times he needs to snuggle up with his mama for a nap and feel that unconditional love gush over him. That’s the essence of motherhood for me, what I had growing up, and what I want most to remember and there is nothing in that which I wish to share. Our lives are just too short and as I see my little baby grow so very much and recall oh how I begged for that too, I see a future of his growing self and growing independence, of the times we have together gradually slipping away and think that even in the bleakest of days, we had something quite miraculous and perhaps unique in the seemingly endless days we spent in hospital, just the two of us, when I could do little more than hold you and love you and sing to you and sign to you. Just to feel you in my heart and feel a love so strong it hurt. I regret the fact I had a tough pregnancy with Callum, yet of course there’s nothing I could have done about that, endless sickness, chronic pain, heartburn and disability, but it did take me away from you for a while.

You have a new and sweetest thing, grabbing me by the hair quite forcibly and thrusting your big lips onto mine. Smack! You pull your hearing aid band down over your eyes and then look up through the little slit you’ve left underneath and think it’s funny. Well yes, dear son, it is! You love to open your silent mouth and do a Callum, a big, wide “aaaaaaaaaagggghhhh”. It’s so expressive I can hear the cry! You love to entertain Callum when you both hang out at/in the exersaucer and you mimic Callum’s chewing of the sun and stuffed shapes because deep in your heart, you want to be a baby again and yet your body has grown into that of a toddler’s, with the tiniest of hairs above your lip which I can only see when the light shines through.

On motherhood, I don’t want to do anything anymore just to please anybody else where it is to the detriment of my time with Reuben. I may panic at what I think are a mountain of things to try to achieve with Reuben; learning ASL (a whole different ballgame to having learnt a book full of signs), learning to draw and write, learning to play with other children, learning to eat orally, learning to speak, nay, to vocalize itself, learning to walk independently as the main means of mobility, and still having time, more importantly, to just play. I was always fiercely competitive for myself, but fear of ever being like that with Reuben. There’s a strong cultural difference that team work matters more than personal achievement in Europe and born from this is a British Isles (UK and Ireland) trait that manifests itself in self deprecation, a trait filling the story lines of countless sitcoms. And if I push Reuben, I want to stress, it’s because he wants to be pushed. He will trundle up to me and sign “more signs”. And I know too that physical achievements will not be his strengths, yet if his beautiful mind, a muscle that needs exercising, is stretched and toned, he will be allowed to fulfill his pull potential. And for this reason too I ache at the families who haven’t or are unable to brace the deaf culture (Reuben is moderately-profoundly deaf but hears within a normal range aided) and push a foreign language on them when deafness is in that child’s heart and soul. As alien as it was to me to have to learn sign language when Reuben was 7 days old, I knew so early on that it was his language and that he would hopefully be bilingual in American Sign Language and English. And so now I’m pressed with choices to make as to how I can open up true ASL to him. And if we live in the UK, then BSL (British Sign Language). That decision I had to make early on and when I put those panics aside, I was able to see that really, it didn’t matter whether it was ASL or BSL (ASL incidentally is much more user friendly, signed with one hand predominantly. Very handy when you have a child in the other). Instead, the important thing was to give Reuben access to language and with that skill, that intellectualism born from learning a language, a third (BSL) language would come much more naturally.

And why then would I want to teach Reuben the alphabet and his numbers way before pre-school. A while back I looked at early literacy, but have pretty much avoided working on it because it failed to focus on phonetics. It focused on pushing flashcards rather than how a word is made up. I feel that come the kindergarten years, the children who don’t know their alphabet or how to count will soon catch up. But when you have a child with so many disabilities, allowing them to excel and nurturing what they love best, will give them an early edge. And I think it’s back to the idea of the brain as a muscle, the use it or lose it that’s important and indeed when you see the joy on Reuben’s face at his signing accomplishments, I watch him in the rear view mirror practicing his signs, refining their formation, I know he and I are working to the same goal and we are in harmony. His letters and numbers up to now now fully conquered.

There is no greater gift you can give your child than your presence and your touch and even if the days are so bleak that you are denied that touch in an intensive environment, you can touch with so many other senses. And your heart. It’s like the moon. I’ve always thought that whenever you are far away from a loved one, separated, perhaps on the phone long distance or thinking of them; just know that a mere glance of the moon, looking up at the Sea of Tranquility and asking your loved one to do the same and know that in this fabulous world of ours, it is the same moon; your eyes are looking at the same moon, maybe at the same time, albeit you may be thousands of miles apart. Isn’t that connectivity a lovely thought and a blessed gift from God and Mother Nature!

Saturday 5am now. I’m in with Reuben tonight and whilst there’s a little suctioning to be done, I just can’t sleep, my mind is too restless. So writing is my greatest way to relax. I know I’ll pay for it in the morning which is only about 3 hours away when Callum will need his bottle having slept fitfully through the night and the day will begin again...