Ethan was born in January 2013, and we were instantly in love. As adoptive parents, we began a life we had imagined for SO long, and we plunged head first into parenthood. We interviewed child care providers, planned baby showers, and dreamed big dreams. It was a beautiful and exciting time.
Six weeks later, Ethan stopped breathing twice in a short period at home. We went to his pediatrician. It happened again. We took the ambulance to UW Hospital and didn’t leave for 3 weeks. Ethan headed downhill quickly, and no one could figure out what was wrong. He had a battery of tests: ECGs, spinal taps, CT scans, swallowing studies. Each day a new doctor from a different discipline told us something new that was wrong with Ethan – his heart, his kidneys, macrocephaly, gastrointestinal problems, hypotonia, and more. We knew what but not why.
Ethan had major seizures in the hospital, so they gave him an MRI. We learned that his brain had not formed normally. No one could say how this would affect him long term. His Neurologist told us the best and worst case scenarios. Best case: Ethan will have some minor developmental delays and may need some help in some areas in school. Worst case: He may never walk, talk, eat normally, and his vision might be seriously impaired. Only time will tell. There was little hope.
We were devastated. 2 weeks prior we had a healthy baby boy and all the dreams that go with it. Now we faced a terrifying uncertainty that we were ill-equipped. We had few people to call on for assistance – our families live hours away.
We left the hospital with appointments scheduled with ten different subspecialties and clinics. He had an NG tube and was scheduled for a G-tube placement. We had had little sleep at the hospital and now were hyper-vigilant watching over him and monitoring his tube feedings.
We grieved for the loss of our dreams. We sobbed every day. We juggled work obligations with 3 to 4 weekly doctors’ appointments. We dealt with insurance issues, got on support wait lists, and had visits from home health nurses and therapists. We were prepared to be parents but not prepared to be parents of a child with special needs. We felt lost in a sea of systems we didn’t even know existed.
We leaned on each other for support, but we felt very alone. We needed a break, and that’s when we turned to Gio’s Garden. Gio’s provides therapeutic respite to families of special needs children. We were very hesitant to leave Ethan with anyone, but the staff is well-equipped. They handle tube feeding, medication, seizures, and every child’s therapeutic needs. Gio’s Garden gives families like ours a safe place to bring their child so parents can get a break.
Eventually we took Ethan to Gio’s Garden, and we quickly took him every week. It was lifesaving. It was the first place we ever left our son without us or his caregiver. Ethan loves going to Gio’s Garden! When we pick him up he is always having a great time. While he is there, Ethan receives therapeutic care. They work on PT, OT, and social goals, all while having fun.
Every parent can appreciate having a few hours to themselves to take a shower, clean the house or run a few errands. When you have a special needs child who requires extra supervision and care, that need for respite is exponentially greater. Gio’s Garden gives parents like us peace of mind knowing that we can bring our children to a safe and prepared place where they get great attention and have fun. It isn’t easy to call the neighborhood 14 year old and ask them to babysit a child who needs G-tube feedings and who may have a seizure.
We are now regulars at Gio’s Garden, and they have become more than just respite for our family. Gio’s Garden gave our family a “village.” They provided a community for parents where we can meet and interact with people who know what our journey is like. They provide resources, training, and information critical to parents navigating the very complicated would of special needs health, insurance, school, advocacy, and daily living.
We truly don’t know what we would have done without Gio’s Garden and I know dozens of families who feel the same way. Many of these families deal with much bigger challenges and stresses than we do.
Please help us keep Gio’s Garden’s doors open for those families.
