“For as long as I can remember, all I’ve wanted to do is help children in need. As a little girl, I would line up my baby dolls and care for each one in turn, playing ‘orphanage’. I always felt burdened for those that didn’t know the love of a wonderful mother like I was blessed to have.
This desire to care for others led to my career choice as well. In 1997, I entered nursing school. While I enjoyed all aspects of nursing, my heart belonged in pediatrics. For the next few years, I found great satisfaction in providing care for my young patients and their families. During this time, I met my wife who was a nurse as well.
Like many young couples, after a few years together, we decided we wanted to add children to our family. We explored several options, but ultimately decided that we wanted to adopt. This provided the opportunity to grow our family and, in the process, help those that so desperately needed true, unconditional love.
In March of 2003, we moved back home to Potsdam, New York, where we immediately began classes to become certified foster parents. Most everyone has a mental picture of what their adopted child will be like. I pictured kiddos that were perhaps dirty, underweight, and in need of good food, love, and care.
As we were nearing the end of our classes, we got THE CALL. ‘Would you be willing to accept a three-month-old baby with serious medical needs?’ they asked. We were beyond thrilled and couldn’t say yes fast enough. As nurses, we felt we could handle any medical needs presented to us. We signed our final certification paperwork to officially become the adoptive parents and spent the weekend buying way too many baby things, daydreaming about what being first-time parents would be like.
On December 8, 2003, we brought Shannah home on her three-month-old birthday. She was 6 pounds and 9 ounces of screaming, vomiting, wheezing delight. We left the hospital that day with a tremendous list of diagnoses for such a tiny girl. Born 10 weeks early and weighing only 2 pounds and 12 ounces, our girl had endured more in those first three months than most do in a lifetime.
Initially intubated, our girl had a fairly mild stay in the NICU, growing and getting stronger. Upon her initial discharge home with her birth mom, she suffered a hypoxic episode due to a prolonged body temperature of 90 degrees Fahrenheit. As her tiny life hung in the balance, she required intubation a second time and her condition remained critical for 14 days. Due to lack of oxygen to her brain, no one could say what her future would look like, but the prognosis was grim. In addition to her prematurity, she suffered from severe GERD, respiratory issues, microcephaly, and a failed hearing test in both ears.
Brain damage and microcephaly are a VILE combination for quality of life. We were told by her pediatrician and developmental specialists that it was unlikely that she would walk, talk, attend regular school, or have many friends. While our love and commitment to her never wavered for a second, it was earth shattering to hear.
So many broken things in our amazing human bodies can be fixed. Broken limbs can be mended, broken hearts can be surgically corrected. But what about a broken brain? No one had positive news for us. There was no hope of repair, change, or improvement. What kind of life would our girl lead? Would she know how much we loved her? Would she be happy and accepted by society? We wondered what would happen now.
Throughout her first two years of life, we lived from one specialist appointment to the next. Many weeks were filled with almost as many appointments as days. We may have been nurses, but we had SO much to learn. We wanted to provide the best possible quality of life despite the bleak diagnoses. But once Shannah’s GERD and asthma were controlled, she became the happiest ray of sunshine.
She didn’t realize she was any different from anyone else. She smiled, she laughed, and brought joy to everyone she met. She met every challenge with such perseverance. Over and over she proved doctors and specialists wrong. She couldn’t sit up, so she rolled to things she wanted. She learned to sit up but couldn’t walk, so she scooted. Through it all, she taught us to find joy in the simple things. She laughed when the wind blew the trees, she adored animals and smothered them with love. With the support of an amazing speech and language pathologist, she learned simple signs (ASL) and began to communicate. She adored books and we would read for hours even though she couldn’t hear the words.
At 16 months of age, she had tubes placed in both ears that drastically improved her hearing and, surprisingly, her balance. The evening the tubes were placed, she took her very first steps. We were elated! Crying tears of pure bliss, my wife and I made it known to grandparents, aunts, cousins, anyone we could think of. Everyone was in disbelief. Shortly after her second birthday, we were blessed to finalize her adoption and make her place in our family official.
Slowly, after a few years and multiple sets of ear tubes, Shannah could finally speak. Much of what she said was unintelligible to strangers, so we were met with trepidation as the time approached for her to begin preschool. She turned three and started preschool in September of 2006. My beautiful girl had come so far, but had so much further to go in order to reach the level of development that came with ease to her neurotypical peers.
Other kids her age seemed very independent. They were potty trained, speaking in full sentences, knew colors, numbers, and much more. Shannah was not potty trained, had around 15 words, couldn’t dress herself, and had never spent a day away from me. The obstacles in front of us felt comparable to climbing Mt. Everest. The thought of leaving her at school left me breathless. Would her teacher know what she needed? What if she was sad? Would she be scared? Made fun of by other kids for the ‘funny way’ she spoke?
We sat down with her teacher a few weeks into the school year expecting to be reminded yet again of all her deficits. In contrast, her amazing teacher could not have been more positive. Finally someone could see her potential and didn’t stop at her list of diagnoses. Tears of joy poured down my face and my heart was near bursting. Her teacher told us to ‘keep raising the bar because she’ll reach it!’ So we did. Our expectations went from loving her despite her limitations to seeing nothing but possibility.
Our girl was spunky and full of perseverance! She tried, tried, and tried again until she mastered each skill. She needed constant repetition of skills. We worked constantly for her to develop academic skills as well as fine and gross motor skills. Despite an IQ well below 70, which is the benchmark for mental retardation, Shannah continued to smash everyone’s expectations.
When she was 6 years old, she found her true passion. Dance was an area where she wasn’t ‘different’, ‘slow’, ‘stupid’, or ‘the girl who talks weird’. Through the art of dance and with a wonderful instructor, she was able to feel completely ‘normal’ for the first time in her life. She would instinctively connect with the music and her true inner beauty was visible to everyone who watched her perform. She truly came to life and the joy she felt was contagious. Through dance, she was able to truly live her best life and feel confidence for the first time.
Today, Shannah is an amazing, shining example of strength. Every day she works twice as hard as her peers to achieve academic success and we couldn’t be prouder. She has a 100% overall average in her 9th grade regents English class! She has a stupendous group of friends who accept her exactly as she is and are happy to lend a hand when she needs it. Dance remains her number one love (although now boys are a close second) and she performs with her competitive team beautifully. She goes all out with every performance.
We still have many concerns for our girl as she grows and prepares for adulthood. She is still easily led by peers and we worry about how she will make decisions independently. She still can’t fully understand the concept of money or count and manage it age appropriately. My mama heart is still full of concerns, but the logical side of me knows that she can do anything she puts her mind to. The sky is the limit! Shannah wants to attend college to be a social worker to help kids that are in similar circumstances that she once was.
The hand she was dealt in life has been one that would make even the strongest stumble, but my girl is a warrior. The sleepless nights filled with worry, the what-ifs, the obstacles, the days hiding in the bathroom sobbing over a comment someone made about her have all been worth it, 100 times over. My girl has taught me so much in her short life. Never accept what doesn’t feel right in your ‘mama’s heart’. Be a FIERCE advocate for your child and always remember that NO ONE knows your child better than you. Take time every day to laugh and find joy, even in the midst of immense struggle. Love hard because everyone is SO amazing in their own way.”
This story was submitted to Love What Matters by Janel Chevier of Brushton, New York. Follow her journey on Facebook here. Do you have a similar experience? Submit your own story here, and subscribe to our best stories in our free newsletter here.
Read more stories about special needs children here:
‘I whipped around fast. ‘You leave him ALONE.’ He covered his ears, flapping his arms. The man snickered under his breath.’: 70-year-old woman thanks special needs mom for opening her eyes to autism, ‘You taught me patience and kindness’
‘My husband divorced me after my baby was born. At 28, I had to move back in with my parents as a single, special needs mom.’: Mom to daughter with Cerebral Palsy finds new perspective on ‘true happiness’
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