Back in the darkest days of our pregnancy I used to daydream about our baby, how she would be the exception to the rule and she would survive. If I allowed myself, I would imagine her coming home with us and being with us for Christmas. If I was getting really carried away I would dream about the doctors saying that they had made a horrible mistake and actually we didn’t need them and we could take our baby girl home and live normally.
Never in all my most indulgent dreams could I have imagined these past two months.
On the eve of our girl’s first birthday, I was kneeling on the kitchen floor attaching helium balloons to weights when the enormity of preparing for a 1st birthday hit me, so too did the tears. Tears which were never far from the surface for the rest of the weekend. The monumental first birthday came and went, surrounded by family and friends and love and cake and laughter. At precisely 2pm on her birthday the exact time when, on the day she was born, we were being told that there was no hope, we were together as a family, in our home, over-flowing with that same hope which we were assured didn’t exist.
At Christmas we put out carrots for Rudolph and whiskey for Father Christmas. She danced to hymns in church and then we watched as she used her faltering grip to rip open presents and she sat at the table sucking on strips of turkey. It was a million miles from the stress of last Christmas which was spent in and out of hospital while doctors tried to work out why her sodium was so high.
So the New Year arrived and with it our home review by the Hospice whose excellent care we have officially been under since she was born. I’m not sure what I was expecting from our assessment but when the nurse concluded that Imogen was not in need of Hospice care and we would be discharged I was stunned. I closed the door as she left and cried and cried. The Hospice provides care to children who are not expected to reach their 19th Birthday and despite the fact the nothing at all medically has changed the fact that someone has said that we can be removed (even temporarily) from that category was akin to the high I felt when they said we could take her home after she was born.
So far 2013 has felt a little bit like an especially cheerful episode of Glee or a really feel-good musical film. The good things just keep coming, all of sudden we are meeting people who are talking about the future. Physio, early years centres and Portage have arrived into our lives. This week someone spoke to me about mainstream nursery and schools. Out of habit, I wanted to tell her that I don’t like to talk about things like that because it breaks my heart that Mojo is unlikely to ever need them.
Last year was all watchful waiting and being prepared for ‘rapid deterioration’ and this year is all about progress and pro-activity and LIVING, enjoying our quality of life.
Don’t get me wrong, there is no place for smug self-satisfaction when living with such an unpredictable condition and if you knew how many times I have started blog posts and then thought, God I can’t publish that as it is tempting fate too much, you’d laugh.
I am however, starting to get the message that my girl has been giving me since she could first kick in the womb. I’m not going anywhere mummy, bring it on!