The support The Darling Home for Kids provides goes beyond nurses caring for special needs children. They save families.
By Erin Gibson, Piper’s Mom
Our little Piper has a rare neurological condition that is causing her brain to shrink, but we do not know the exact cause as of yet. Piper is globally delayed. She cannot sit, crawl, hold her head, speak, or even eat on her own. Piper has been in and out of the hospital since she was a few months old, and she has been diagnosed as palliative.
At about four months, we started to notice that Piper was losing skills. She stopped smiling, was very rarely engaging with us, and she began doing small twitches. The twitches became more frequent, but I was told not to worry. In my heart I knew something wasn’t right, and so I finally walked into an emergency room so Piper could be seen. The next three months were spent at McMaster Children’s Hospital.
Brain scans revealed that Piper was having seizures called infantile spasms. Her first surgery was to insert a feeding tube into her stomach, as she was at high risk of choking and aspirating. She was admitted four times for pneumonias, and attempting to fix the problem led to an ICU stay where her blood pressure and heart rate were dangerously high, her bowels stopped working, and a new MRI revealed that her brain was still shrinking at a rapid rate. One doctor gave us a year, and at that point our goal was to get home.
After that long hospital stay, we felt lost. We left our home with questions about our baby who was losing skills and twitching, and walked back through our doors different people – with a child we feared we couldn’t care for. I was riddled with guilt as we sat down to eat dinner every night, and I held her on my knee to include her in our family meal. But I couldn’t feed her. I plugged her in to a machine, and pushed “on”.
My husband Matt and I were angry and we were lost, scared, and exhausted. We were struggling to hold down our jobs, and staying up all night with a child that never sleeps due to seizure activity. Matt left his job so he could stay at home to care for Piper. Our marriage was falling apart as we took our stresses out on each other and struggled every day to push on, with no supports and no sign of a break in sight. Then we found The Darling Home for Kids.
The support The Darling Home for Kids provides goes beyond nurses caring for special needs children. They save families.
Every couple of months Piper can visit The Darling Home for Kids and my husband and I can have some time for ourselves. We can enjoy each other’s company without worrying about Piper’s safety or well-being. We can spend some quality one-on-one time with our five year old daughter Kaeleigh.
When Piper visits the Home I feel confident knowing that she’s not just sitting in a nursing facility. The Home is like a special camp for kids. Piper participates in hydrotherapy to ease her tense spastic muscles. During her first overnight stay she was put to sleep in her beautiful room by a lady playing a harp. She participates in pet therapy where she giggles at slobbery wet kisses from her four-legged friends. The staff at the Home have truly embraced our family, and are genuinely excited to be with Piper, and look forward to her arrival.
We are a very different family now. We used to see a fragile child who needed us to protect her always. Now I look at Piper and see inspiration and strength as she continues to smile through surgeries and illnesses. I have learned that taking a break is not only good for Piper, but it gives me the chance to reboot and come back refreshed and ready for action like any mother needs. We just needed a place that could help us to be a family again and appreciate the time we have together. That place is The Darling Home for Kids. Thank you.