When he was born, it took the power of a specialized NICU team to keep him alive, and for three agonizing weeks following his admission to the critical ward, our lives were measured by oxygen levels, respirator units, and feeding tube amounts. There were scares along the way, but he was a hero even then, and before he understood the meaning of the word 'fighter', his spirit fought against whatever it was that was trying to pull him from our lives. We visited the hospital twice a day, called every shift to make sure everything was stable, and spent hours dreaming, praying, and holding onto hope. To our amazement our pediatrician called us on Thanksgiving day in 2003, and he told us we could come to the hospital and bring our son home where he belonged.
They say a baby changes everything, and they are right. No one could have prepared me for the moments of pure happiness when I looked into his eyes, the way my heart lifted when he smiled at me, or the way my soul wept with joy the first time he said "Mama." This tiny person became the axis on which my world turned, and I have never wished for anything different.
Ian still struggles daily. Not surprisingly, he's suffered from asthma since birth, but by the time he was one, it was severe. He required hospitalizations for that and severe reflux resulting in weight loss, and by the time he was three, he had a handful of admissions in his file already and was on a nebulizer daily. As he got older, he displayed debilitating obsessions which people thought were cute when they noticed, but for us it meant leaving the house 30 minutes early so that we could get the same parking spot every day, or making a trip across town so that we could go over speed bumps in a certain order. He had tantrums that would last for hours, and at times I wondered if somehow we as parents were doing exactly the wrong thing every single day or if I was just losing my mind. It was scary, it was hard, and there were times I thought I was going to break into a million pieces from the stress, but through it all we loved each other fiercely, and that was enough to keep us strong. We kept going. We battled with doctors, school personnel, and community resources. We spent hours researching, asking questions, and getting advice. Still nothing seemed to make sense, and our panic was rising the more we were told "we don't know." There was something going on, and all we wanted was help for our son. No matter what we were told it wouldn't matter as long as someone could help him. He was just existing in the world, not living it like a child should, and it was breaking my heart every day to see him so frustrated and angry. So, like any mother would, I kept pushing for answers and demanding that we be heard.
It was on September 2, 2011 that things started falling into place. The loose thread that hung from the fabric of Ian's life was pulled, and everything started unraveling. At first I was terrified, and I remember clearly the first time we sat down as a family to talk about what was starting to happen. However, even among the anger and fear, there was a tiny glimmer of hope that found its way into our lives, and from the remains of what we thought was the life Ian was going to live, there was a new pattern starting. A new tapestry was being built and is still being built today with all we have learned and keep learning, and every day there's something new.
So, that's Ian's story. I will go into more detail as this blog grows, but I just wanted to give a short introduction and offer you a glimpse into our lives. Ian's story is one that millions of children around the world share in one way or another, and he gave me permission to make his experiences public so that other children and families know there is hope out there. I feel it's important as well because for everyone who has expressed an interest in donating towards the dog we hope to welcome into our home as part of the family, I want them to know that not only will you be enriching Ian's life by giving him the chance for comfort and support every day, you will also be changing our family's life in a way you cannot even imagine. To see our son smiling as he engages with people in a way he struggles with and hearing his laughter in the house is nothing short of watching a miracle unfold right in front of us. The tantrums, the frustration, and the fear dim in his eyes when his friend Nick is by his side, and for that, our family will be forever grateful.
Thank you for your love and prayers as we continue traveling down this winding road. They have kept our spirits up when things got rough, and they have provided us with the glimmer of light we needed to find our way on our darkest days. If you want to donate towards Ian and Nick, there's a Donation Button located on the top right of this page, but even if you are unable to donate monetarily, we thank you from the bottom of our hearts for your support in prayers and kind thoughts.
Love,
Our Family
If you want to share this blog via social media, email, or other means, please feel free. I hope to include resources and helpful sites I find along the way, and Ian would also love to connect with other kids on the Autism Spectrum.
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