Shyla : Remembering Smiles

May is Lung Disease Awareness Month

By Becky Huffman
Mommy to Shyla
Born December 2014
Bronchial Pulmonary Dysplasia, Cerebral Palsy

Shyla came to us through foster care when she was 9 months old, in September of 2015. We did not know she was medically fragile at the time, but there were several indicators from her past medical history and some reported care issues with her biological mother (including not giving her oxygen when she slept as directed after Shyla was released from the NICU). The doctor I worked for at the time helped me look over her past medical records and I suddenly wondered if we had taken on more than we could handle by agreeing to take her in.

But then they brought her to me at the end of my workday and as soon as she smiled at us and was so joyful at being loved and held, I knew. How could you not want a beautiful child like that.? Her eyes literally drank us in and caused our hearts to absolutely melt.

When we got her that day from the other foster mom, she had torticollis to the left and was drawn up with her elbows contracted. She had a very hard time swallowing anything. She also had a gray color about her that I did not like since I’m a nurse and familiar with respiratory problems from kids that I had worked with in the past.

By January of 2016, Shyla aspirated on milk and ended up in the hospital. That’s when we found out she is deaf. It absolutely tore us up that she was deaf, yet she could look at us and respond to us talking to her. She was just enjoying the movement of our mouth and facial expressions.

In August of 2017, Shyla went on a ventilator due to aspiration pneumonia and a respiratory virus. I saw a pamphlet for On Angels’ Wings in the Ronald McDonald House at Mercy Hospital. A private duty nurse for my daughter contacted OAW and found that she qualified to have pictures taken of her because of her medical fragility.

Initially getting pictures arranged was a struggle because we’d schedule them and then Shyla would be hospitalized. She seemed to be admitted on a monthly or bi-monthly basis unfortunately. Her first pictures from OAW were taken after she had a tonsillectomy in hopes she could breathe better while sleeping. She looked natural and beautiful. This is very important to me that she looks natural instead of the cerebral palsy pulling and twisting her body into positions that are uncomfortable. I want my daughter to be remembered with smiles and not painful grimaces or the look of struggling to breathe.

Shyla was 4 years old when we were finally able to adopt her on January 29, 2019. We love her deeply. Our life and family do revolve around Shyla’s illness. It seems that our house is full of medical and emergency equipment to help keep her breathing and to aid her in an emergency situation until we can get to the hospital. This has drastically changed things for us and how we decide on what to do as a family, whether it’s an outing or just everyday life. I work full time as a nurse with private duties for other kids and families, and Shyla has an in-home private nurse that helps us. When she’s not available, then I am her nurse.

On Angels’ Wings has been there for us beyond pictures each year. She’s received birthday gifts; that is something I did not expect. I just assumed it was one-time pictures of her and that was it, but they provide gifts, and pictures with our girl each year. We even received financial assistance for food when Shyla was hospitalized far away from home.

We keep praying that her lungs will improve, and the hospitalizations will become less and less. When Shyla was an infant and came to our home, I had dreams that she would be able to take a few steps, even if it was with the aid of a walker in braces. That eventually morphed into that I would be thrilled if she was able to stand and transfer herself to a chair. As time went on, I was just hoping she would be able to hold her own head up. I continued to pray that she would be able to speak and tell us what she needs and wants, but even that hasn’t happened. Now, I pray that she will be able to breathe and cough to clear her own airway and no longer need so many trips to the hospital. Each time, her life is in jeopardy. Each time is scary. I just want my little girl to live and be happy.

Shyla : Remembering Smiles

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