At first, I didn’t want to see anyone. I just wanted to be left alone. I needed to get my head around what we were facing. Friends and family prayed and some visited but for a while we just stayed away. It was easier this way, for now anyway. Minutes, turned into hours, hours into days and slowly my joy in my pregnancy and life started to return. The maternity clothes got pulled out from underneath the bed and so did the mother-to-be magazines. I started to plan the baby's bedroom. I guess the biggest aspect I tried not to think about was the four weeks before my due date when I would have to leave my home and relocate to Brisbane. For now, I just pushed it to the back of mind. It was still months away.
My journey is not one you hear often, as people are generally uncomfortable talking about something they do not know anything about. Particularly, when it comes to a child born with what the doctors call a ‘birth defect.’ Even the word scares people, and then there are the looks of pity. Pity is not what I want. It is to be treated normally, like you would anyone else.
When I pictured my life, I pictured myself married with children, a house, friends and even a dog. A typical dream of a young girl. A happy ever after story with no major life challenges. The day we decided to have a baby my life changed. Oh, the excitement! I loved keeping the secret of being pregnant from everyone, a secret only between my love and I. What an exciting blessing!
I did not research Spina Bifida and Arnold Chiari ii Malformation. I knew what I needed to know for now. The way our families and friends coped with the news was very different. Most of them just wanted to be there to support us in any way possible. Others wanted to know what the outlook for our soon to be little one was. But how are we to know? Every situation is different and the body responds differently. At first, I think what I struggled with most was those sort of questions. To me, I would rather look at the right now then the what-ifs. We would deal with the future when it comes. My husband dealt with the hard questions. He shielded me from it and it was what I needed then.
After hiding away for a time, I returned to work. I began to do most of the things I used to and in my mind it was going to be okay. Time passed and I got bigger and bigger. I loved feeling the baby move and kick. It gave me such delight. A couple of my friends were pregnant so it was a joy sharing our pregnancy journey together even though mine was slightly different. I still longed to ‘fit in’ and not be left behind. My mum organized a baby shower. We had it at our house and this certainly brought so much fun to the baby planning and future. So many people came. We had a full house, games, food and so much generosity. The little bub received so many practical, fun and beautiful presents. We celebrated and it was such a joy. My husband and I painted the nursery and purchased furniture, all the little clothes washed, pressed and folded, awaiting the arrival of bubs.
I dreaded the day I would leave my family and friends behind, including my husband, to relocate to Brisbane to await the arrival of our first baby. This was so hard, so many tears. I felt this is not the way it is meant to be. My heart hurts. I wanted to be nesting at home. It was four weeks before my due date and suddenly my new found normality was gone again, a long time to return. My normality became ‘ever-changing’ and I had to find peace with that.
Now, three and half years later, I reflect about how I’ve changed, how I’ve become a confidant and assertive person, more than before. I have come to understand there is not always one answer. I question everything and look for alternatives. Mostly, I have found within each of us we decide what is normal and what is not. We can create change. We don’t have to fit to the world’s standards. We can make our own. I have a deep empathy for others. I see the world with different eyes. My world is still a beautiful place, I just had to alter my dreams and keep altering them.
Like most mums, I want more for my child. The hurt I feel, as our little one is getting older, is that she is not included with her little friends in their active activities. Of course, we have play dates and those types of things. But some people just get concerned that their little one will pull our little one’s tubes, that they will be too rough. It would be annoying if the tubes got pulled out but it is not the end of the world. We would just put them back in again.
I feel like I missed out on the ‘mum's club.’ The sharing of ideas, raising our children together, going to the park, sharing stories on how to make it through, and the subject of more babies. All our stories are medical stuff and our stories of day-to-day struggles are different. We have experience in medical areas most of them will never see. Though, of course I share our journey with our friends and some try so very hard to understand. It is just hard sometimes being a little left out, even when it’s not intentional.
I have discovered children with special needs are not so uncommon and each of us has a different normality. I love my little one so much. I love playing with her and showing her new activities. I love when she understands something new for the first time, laughs late at night with her teddy. These are treasured moments. Our baby is growing, gaining weight and someday soon I am sure she will be able to sit up, crawl and play more. It just takes a little longer for her. Family trips are becoming more regular; I am venturing out and being more social. It requires a little more patience. It is a round about way but we have found our own version of normality, our ever-changing normality.