Friday, 11 March 2022

Spring, Growth, Community and the Bonus Years

 On March 21, 2022, Maia, the Goddess of Spring, turns 27 years old. 

She's been in our lives 22 years longer than predicted. These are the bonus years. And this girl - she continues to be amazing. 

The other day, we picked her up from her group home where she has lived since becoming an adult. Without words, she shared how happy she was. She giggled all the way to our house, she giggled at us, our dogs, and giggled all the way back to her home. When she is happy like that, my husband and I talk about it after she leaves, remarking on what a good day she had, and how amazing it is that she is still relatively healthy and happy.

I always get reflective around her birthday. As she gets older, this hasn't changed, but the way I viewed her birth and her life, has.

If you have read my book, you know how much I initially struggled with her diagnosis. But, I also reflect so often, especially when talking to all of my C22C friends (and they really are such good friends), just what all these bonus years have brought to me.

You see, we have this fantastic online community where all of us continue to celebrate our children's achievements, marvel at the video posts of kids with Emanuel syndrome who are signing or even using words, taking out the trash, using alternative communication, roller skating, putting on makeup, or singing and dancing, and I just think, wow. 

Our community also has hardships.

In the past weeks, we have lost two young adult members of our community, both of who were living with Emanuel Syndrome. We all feel these losses profoundly, as we would the loss of family members. 

Recently, with the war in Ukraine - we have rallied our community to help surround with love and hope - and some money - one of our families who is living there and whose son is sick. All of us are tied to their well-being, sick at heart for them, and sending them encouragement daily.

Our community is beautiful. It keeps me going. I do not know where I would be without this community - one Maia created for me - and which continues to grow and fill every corner of the globe - and my heart.

We are there for each other, to celebrate and hold each other up virtually around the world. Language doesn't matter - things get automatically translated. We are a beautiful, multicultural blend of families who come together from around the world to share a unique bond. Our children tie us together in a powerful way. We are family.

Maia. My heart and soul. Here she is, unassuming most days, making me marvel at her life and what her birth created in this world, 27 years later.

It has always been very present in the back of my mind just how fragile Maia's life is. But these are all bonus years, and I am grateful for them. Maia continues to make me reflect on how far I have come, how much she has experienced, how many good things she has brought to my life, and how important she is to our community.

For her birthday this year, Maia told us (through the process of elimination and choosing via online ordering) that she wanted new shoes. She's getting two pairs that flash and sparkle, fitting of her personality. She was positively grinning when we made the selections together.

On the occasion of Maia's 27th birthday, I wanted to share this excerpt from the end of my book which I wrote about her, 

Raising the Goddess of Spring: A guide for parents raising children with rare chromosome disorders

This really remains true for me and always will. 

About Maia, the Goddess of Spring

"As explained in Greek mythology, Maia was a spring goddess that represented the forces of growth and the return of the sun. This was my lesson. I did not know when I chose her name at the age of 13 what it meant; that Maia would be actually born on the first day of spring, and that she would embody this meaning for me. Maia prompted within me far more personal growth than I could have ever imagined when I first touched her tiny pink fingers and looked into her eyes through tears of despair. I was just a simple young woman when I became her mother, naive about the world, and about what a person can overcome, accomplish and embrace.

Maia was the gift to me that I didn’t fully appreciate for many years. She broke me, but yet, she made me. Maia forced me to conquer my fears, my anxiety, my feelings of inadequacy as a mother. She turned me into the person I have become and drove me to do more than I thought was possible. In that sense, she has had more power and influence as a human being over my life and the lives of so many others than I could have ever imagined. Maia is more than her diagnosis. She is a powerhouse, and I am proud of her. I am so proud of all that she has overcome and that she can still smile and melt your heart despite all of it. It may not happen right away, but your child, regardless of their diagnosis, will become the best part of who you are. You will come to see beyond their diagnosis and any grey clouds that colour your view in the early days. Your child will help you embrace, in all its glory, the return of the sun."

This book not only shares my journey with Maia, but includes stories and comments of 65 other members of our group, as well as information on the basic genetics of chromosome disorders. If you view the book on Amazon, there is a preview available with the table of contents. 

Please note that all proceeds from this book go directly to supporting Chromosome 22 Central. A growing community of amazing people. Thanks for taking the time to learn about my amazing daughter and for your ongoing support for the families of Chromosome 22 Central. 


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