Maia Aroha means ’Brave and Love’
I am Malia, Maia's mother. I’ve always thought one of the most exciting things about having a baby is figuring out where each of their features came from. When my son was born the first thing I noticed was his pointy lip, just like his dad. He had my long eyelashes. My daughter was little, just like me, and has her daddy’s green eyes which is a family trait.
When our youngest was born, my initial reaction was that she didn’t look like either of my other children. I thought she looked like my sisters’ kids. After a waterbirth babies can be a bit blue. As I cuddled her on the bed and her colour changed, I began to realise why my baby looked different. I noticed that her face and nose was a bit flat and her ears were positioned slightly lower than normal. Her eyes were closed but they looked a little slanted and she felt a bit floppier than normal. I opened her closed hands. She had a single crease across her right palm. As a trained midwife I knew these were all possible signs that our baby had Down Syndrome. As I was resting, our midwife and student midwife had left the room, no doubt to discuss their own observations. My mind started to race as I wondered how I would tell my husband. He doesn’t like surprises and is a planned, prepared person. I couldn’t think of a gentle way to tell him so I just said, “Oh I think baby has Down Syndrome”. He simply said, “I know”.
I found out later that when I was in labour, he felt impressed that we would be having a special child, but he didn’t know what that meant. So when he heard the words ‘’Down Syndrome’’, he knew. My dad was also there and he just said, “Oh well, she comes from a large extended family who will love her no matter what”. When the midwife and student returned I asked them if they thought our baby had Down Syndrome? They put their arms around me and said “Yes”, they thought so too. I burst into tears.
The midwife reassured me that my baby would be loved unconditionally by the community around us. She said it wasn’t like the old days where people would dress them in overalls and give them a bowl haircut. I could dress my baby in cool clothes and get her cool haircuts. I burst into laughter. Having a child with Down Syndrome wasn’t what we expecting, but we knew it wasn’t the end of the world.
Having a sense of humour about it has helped us cope and put everything into perspective. My husband named our baby Maia Aroha, which means 'brave' and 'love'. So far it has been a journey that brings the occasional tear, but mostly lots of laughter and lots of love.
“I want a new baby, our one is broken” said my 4 year old when she realised that Maia wasn’t walking and talking like most toddlers her age. I gently tried to explain to her that Maia has Down Syndrome and she will be able to do everything any other child can do, but it will just take her longer to learn how to do it.
When your child is slower to reach their milestones, it can bring out a lot of different emotions. On the one hand, I loved that she stayed in the baby phase for a lot longer. It helped that she was very easy going and slept alot! So I didn’t suffer from the normal sleep deprivation most mothers do. I loved being able to cuddle her all the time (since she was floppy and hardly moved). She fit in a bassinette for a long time (since she was petite and couldn’t lift her head or roll over) and slept next to our bed. When she turned one, it still felt like I had a six month old baby.
Every time she reached a milestone like the first time she smiled, lifted her head, or crawled on her knees, it was super exciting! Way more exciting than when my other children did the same things (sorry kids). Our whole family would cheer and we would let everyone know about it. I shed tears watching her accomplish basic things that most children do without any fanfare. I didn’t cry the first time my other children stabbed a strawberry with a fork and ate it.
On the other hand, when your child takes longer to reach their milestones it can be frustrating. Her therapists always tell me how well she is doing. But some days I think urggghhh, I wish you would just hurry up and walk or hurry up and talk. Some days I hate thinking about playtime and whether I’m helping her improve her fine motor skills. I wish I didn’t have to think about making sure she used a pincer grasp to pick up a raisin instead of her whole hand. I feel guilty when I can’t be bothered doing her therapy homework because I want a break.
I used to think key word signing was a waste of time because it took weeks before she copied me and then weeks before she performed a sign independently. Just like my four year old, it’s easy to become impatient sometimes. The only difference between raising Maia and my other children is that I have to actively think about what we do as a family and I need to be more patient. When I feel overwhelmed, I remind myself that the most important thing is to enjoy my daughter. Maia is 3 now, but it’s like having an 18 month old in the house. She’s still our baby except now she gives us the best cuddles and kisses and her sister has stopped asking to replace her.
When Maia was born, her brother was 6 and her sister was 2. When they visited her for the first time in hospital, we explained that Maia had Down Syndrome and was a special girl. She would be able to do everything a typical person would do, but it was just take her longer to do it. We explained that she would probably always need help and may need to be near mummy and daddy all the time. My son thought about it for a moment and asked if that meant she would never have a boyfriend and would never get married. He was sad she may not have a wedding day.
When we came home from the hospital, we talked a little more about what Down Syndrome meant. We showed the kids a clip from YouTube about a girl named Tessa. Her sister had made the clip to tell everyone how much she loved Tessa who had Down Syndrome. During the clip, the kids were laughing and laughing. They thought Tessa was so funny when she was jumping on the trampoline, reading using slurred speech and doing the hula hoop.
I just cried as we watched it.
At the end of the clip, our son asked excitedly, “Is Maia special because she is going to be able to do the hula hoop like Tessa?” We had to explain that Maia was special, but it was not because she had been blessed with a special talent for performing the hula hoop! The next day my son came up to me and told me he knew why I was crying the night before. He told me I was crying because Tessa was so beautiful.
I love that children can see the beauty in someone before they see the disability. Even now that my son is 10 he still tells me that he knows Maia has Down Syndrome, but wonders what exactly is wrong with her again? I tell him, there’s nothing wrong with her, she’s perfect just the way she is.
Read the rest of Maia's adventures