Dr. Fernando Moya broke all the "bad news" beautifully. Sounds strange I know, but looking back it is very true. Instead of telling us everything Myles would not do, he told us everything he would do. Instead of telling us there was no hope for our child, he told us there are no limits to what love can do. More than anything, I will never forget being told that I was going to help other parents some day, and yes sure enough all of it turned out true.
With all of the love and support we have provided Myles over the past few years, he walked at 15 months, knows over 200 signs along with an equally growing verbal vocabulary, and is currently enjoying learning his alphabet and numbers. He absolutely loves life, and especially music and playing baseball. He has taught me everything I know about what true life and true love is.
Although Myles is doing so well and has been such a blessing in our lives, his medical issues have been intensely trying at times. He was born with major heart defects, for which we've endured 2 heart surgeries and anticipate other interventions in the future. He also has an allergic condition and GI issues, which have been a major medical journey as well. Over the past few years we have had many, many outpatient visits to specialists in addition to our experiences in NICU and PICU.
All the kindness and care that we were treated with initially at this hospital and the resources I was connected with have followed me throughout my journey and have made a significant impact in where I am today. Never doubt that what you say (or don't say), do (or don't do) doesn't make a huge difference to a human in this crisis. Throughout the journey, I have also witnessed harmful words and actions of healthcare providers, and dealt with policies that were not family centered...it really does make things much harder.
I have taken from all of these healthcare experiences (both the good and not so good), and now I am in a very good position to be able to share it in a way that can make a tremendous difference for other families. Supporting NICU families and serving as the Parent Chair of our Family Advisory Council makes my journey and all the struggles make perfect sense to me. I can now fulfill the yearning I have always had since the day I was born to care for people and make a difference in their lives.
I don't know that I would have ever found how to fulfill my purpose without my little angel. I had graduated from Pennsylvania State University with my BA in Humanities/Behavioral Sciences for around 5 years before Myles came along, but I just could not seem to find my way to carry out my passion. About a year after Myles was born, I started seeking out a support group for families with special needs like ours...I found none. I decided I would start my own support group, and that is how it all began. Through the support group, I made contact with Family Support Network and was offered the opportunity to spread my passion to the NICU. It turned out to be a perfect fit, and I am absolutely ecstatic to be building the Family Advisory Council with Debbie DeBose.
Myles is 3 ½ now, and although we have been through so much together in his few short years, all the struggles, they are worth it. Every time I say: "I love you Myles", and he looks at me with those sparkling eyes and the greatest smile I've ever seen and he says "too mom", I feel like the most loved and important person in the whole world. It just doesn't seem one bit important anymore that he still can't say the first half. He will, in his own time, in his own unique and sweet little way, just as he does every thing he does.
There really are no limits to what love can do!
Forever Grateful, Rachel Donley, Parent Chair- Betty H. Cameron Family Advisory Council