River Belle is a beautiful soul and we are so fortunate that she is here with us. She is home recovering from her spinal surgery in the same fashion as she has recovered from previous surgeries: with flying colors. Nothing she, or we, couldn’t handle. Now trying to teach her to sleep in her own bed all night and fall asleep without our presence is a whole different issue.
Lately my husband keeps touting about our “first world problems”. Yes, it is true, we live in an upper class country where we are gifted with so many services and privileges and rights that many human beings around the planet do not have. One of those being access to incredible medical advances. Clean water we just take for granted. He laughed at me as I was having wi-fi connectivity issues at the hospital, this “first world issue” that I was experiencing. It made me giggle and agree that, yes, it was an interesting problem that probably 2% of the world’s population can relate with. The other thing that’s been on my mind lately is the greater issue of River’s feeding disorder and how all the parents that I’ve connected with online experience loads of unanswered questions, undiagnosed disorders, unsolved problems of how to get their child to eat. It dawned on me that this is a first world problem. Even though River has a solid basis for her feeding problems, her underlying heart and prematurity conditions, the development of her oral aversion and feeding tube dependency just doesn’t happen much in underprivileged societies. In those places a child such as River, or Haven, or Tiernan, or the many other children I have come to learn and care about that have problems similar to River, would simply not have survived. The ongoing condition of feeding tube dependency and getting them to eat enough to live, and finding the proper methods and medical intervention is so baffling because it’s new. There is many programs and specialists out there that we have found to help us along, but I keep seeing so many parents seeking answers, seeking help and solutions, us among them. There is just no solid answer. It simply doesn’t exist. It’s different for every kid, and every kid has a different timeline.
Our tubies first world problems, a byproduct of their first world survivable conditions, has another side-effect: the parents new problems. It pretty much goes without saying, but I’ll say it anyway: we suffer from anxieties and stresses that are of course difficult to cope with, and difficult to find relief from. We search for footholds on our issues and emotions all the while trying to get our children through the day with their scars, healing incisions, weeping stomas, constant puking, trying to get enough nutrition down them, and hope that they are growing enough. Each and every day we try to do the right thing, advocate for our child’s care, make sure that they are getting everything they need, all the while trying to develop their very normal baby personalities. Making sure they are stimulated and educated and learning behaviour, having fun, and getting decent sleep. Not too mention, but I will, raising their siblings. And top it off with the fact that some of their siblings also struggle with other special needs. As a current sufferer of lack of sleep, extra stress and anxiety, I can say it’s a challenge I never thought I’d be facing. There is no right way to find your way through it. I am so thankful that I have at least found other parents that are in the same spot.
My answer for these first world problems is this: each other. We connect with each other, we learn from each other, we discuss and brainstorm with each other and share our findings. I have to forgive our caregivers sometimes for not being all-knowing, for they themselves are faced with the newness of these problems. Thank god for the innovation of the internet, Facebook, blogging, and help groups and organizations. Without them I’d surely be on the road to a mental institution. They have provided me with answers that my healthcare providers cannot. These tools give me connection, give me hope, and give River the chance to grow into the best person she can be. Helping Mommy means helping the children. Also the occasional alcoholic beverage provides assistance.