“A Grandmothers Love”

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After some time away, Lessons From Avery is back and with a new “look”. I recently started a new, and rather time-consuming position with the same company I had worked for when I took maternity leave and chose to stay home with Avery. This company feels like “home” and I could not be happier. However, I am still in the process of learning to juggle the demands of my new job and “real” life. With that comes an absence of finding time to do things for myself. I stopped writing.

I received some awesome feedback from an aquatince, and her words lit a fire under me and I am determined to make the time to write again. I need this. My heart is full when I can balance work, family, and a hobby. Although, I don’t view writing as just a “hobby”. Writing is a therapeutic and cathartic form of expression. I consider it now a vital part of my mental health, and I have promised myself to keep it up.

In celebration of our new site, I wanted to do something different and switch it up! Going forward, I want to include my closest friends and family on the blog. I feel this allows for a wider range of perspectives and voices. These are the voices of Avery “village”. The thoughts and ramblings of the people who are holding our hands through this journey of life and it is extremely important that they are heard. I want this in hopes that not only can Avery cherish it when he is older, but also to offer an even bigger glimpse into how a child with Down syndrome can enrich ones life so much so that you forget what your world was like without them.

I asked my mother to write a few words. Enjoy.

“A Grandmother’s Love” ~ Debbie Garcia

In retrospect, my world has always been blessed…raised in an environment that was nurturing, positive, filled with expectations, very few disappointments and a sense that anything and everything was possible.  I traveled, met my soul mate, married and raised two wonderful, healthy children.  When our daughter, Helen, was married and then shared the joy that she and Jeremy were expecting a baby, I was filled with happiness in the expectation of a grand baby!  I loved being pregnant and relived that experience witnessing Helen and Jeremy mark the time as Helen’s body transformed and they awaited the birth of their child.

Vic and I and our son, Matthew, were honored to be welcomed to witness and share with Helen and Jeremy the very unique miracle of Avery’s birth, fully aware that this was truly their very special time and we were fortunate to experience and participate in their joy.

We were all thrilled with this tiny baby boy and hung on his every smile and cry.  As the months went on, Helen started voicing some concerns with Avery’s development.  I kept assuring her that each child has their own time-line and not to compare him or put too much stock in the guidelines listed in the numerous books on child development.  I did not feel that there was anything amiss and when her pediatrician agreed with Helen’s concerns and at 10 months scheduled some genetic testing, I naively expected the outcome to be fine.

A couple of months later I was at work in my office when I received the call from Vic, heard the pain and hesitation in his voice, when through tears he haltingly told me that Avery was diagnosed with Downs syndrome.  I truly was shocked.  I expected Downs syndrome would have been obvious, but learned later that Avery’s facial features were just very subtle.  I immediately left work, crying in disbelief and went home to be with Vic and to gather myself in order to be helpful and supportive when I talked to Helen.  The pain and sadness I felt was primarily for her and Jeremy and imagining the sorrow and fear they must be experiencing for their baby boy.

I was surprised and oddly comforted by Helen’s calmness, feeling that I would be the one to help and comfort her.  I should have trusted her motherly instincts and the powerful bond that alerts parents when something is not quite right with our children.  When she heard the tears and sadness in my voice, she asked if her dad and I wanted to come over…”you guys should come over and see him…he’s still our sweet baby, Avery, and being with him will make you feel better”. The strength and conviction in her words would prove to be the foundation of the journey we were beginning.

As the months passed with numerous follow-up medical tests and physician appointments, we began to get a better understanding of Avery’s diagnosis.  I was so proud of Helen’s focus and the determination and tenderness with which she went about mothering Avery and taking care of the necessary business of caring for a child with a disability.  The possible complications of Down’s syndrome are numerous, appointments were many and lengthy, but thankfully the outcomes were primarily positive.  Jeremy and I had to work but Vic was retired and thankfully able to go with Helen and help on many of the medical appointments.  I remember him telling me about an unusually long and difficult day of medical testing.  After the Cardiologist confirmed that Avery’s heart was healthy, Helen collapsed in pent-up tears of relief.   It was a brief and fleeting window into the concern and heartache her usual strength and sense of humor carefully concealed.

Jeremy’s emotions were guarded.  He continued parenting and caring for Avery as usual but Vic and I both saw a deeper sense of his love and protectiveness towards Avery.  Unbeknownst to him, we would watch this strong man physically soften and appear more vulnerable as he lovingly held and comforted his little boy.

Before Avery’s diagnosis, I knew very little about Down’s syndrome and was not familiar with any friends or family living with Downs syndrome.  It wasn’t until Helen began to give me literature to read, attend lectures, functions and learn through being with Helen, Jeremy and Avery, that I began to understand this very complicated and misunderstood syndrome.  Suddenly, I started noticing other children and young adults with Downs.  And I experience this strange affinity with them…I recognize and love the warmth of their eyes and smiles.  I sense that I “know” them and that we share a secret.

Avery is 3 now and though his milestones are delayed, he is reaching them.  He is a happy little boy, exploring his world and pushing the limits.  He communicates well but I can’t wait for him to have more words, as it’s obvious he has a lot to say.

I think it was a good thing that we were unaware of his diagnosis until after he was over a year old.  We met him at birth and cherished him with joy and expectations, without any labels or fears.  His diagnosis didn’t define him and my biggest hope is that it won’t.  My biggest fear is that it will.

We live in a world of stereotypes and uneducated judgements of those stereotypes.  Fortunately we can choose to navigate this world with kindness and understanding and only populate our inner circle with those who choose to see the best in all of us and cherish the miracles of what is worthwhile in our limited human condition.  That is my wish for Avery.

As he learns his way in this world, I want for him to continue to delight in the small wonders he experiences…

  • the exhilaration of the wind in his hair as he’s being pushed high on a swing
  • the feel and smell of dogs and flowers
  • the taste of good food
  • the warmth and comfort of hugs and kisses
  • the sense of accomplishment in mastering the smallest of tasks
  • the joy of being with people you love
  • the unexplainable happiness brought on by laughter and giggles

Having Avery in my life has enhanced it in ways too numerous to list.  The joy in his face when he sees me makes me recognize again and again life’s priorities.  Being his grandma has made me a better person and my world continues to be blessed.

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