Ben had his foot surgery… months ago now but today when I was slathering him in lotion (mostly because he loves the tickle of it), I gave him a quick foot massage and he winced.
Where he had the pin and infection in his foot is a small little red indent. It’s clearly sensitive. And I am also clearly still sensitive because I burst into tears as I felt him pull his foot away.
I am still so angry that we let this happen to him and although there is no fault in it – shit happens… as his mother and protector I am furious. And I am sad for him. And I wish he knew how sorry I was that I let him hurt like that.
I’ve said it before, but will say it say it forever… never again.
The downside of Benjamin growing at such a slow rate is that when he does suddenly sprout an extra inch, his needs change dramatically. This summer, Ben surpassed the “he’s still small enough to use an infant bucket seat” which was both awesome and scary. Suddenly we needed new support equipment and FAST!
Hello fundrazr.com website! In a week and a half we managed to raise enough money for Ben to get both a new reclining car seat which specifically addresses the needs of children with disabilities and for two new sleep systems (one for our house and one for the day home) – we are still incredibly grateful for everyone’s generosity.
Bug loves his car seat! We had been borrowing one from his day program so we already knew how well it fit and how to adapt it properly but it still makes me smile when I watch him look out the window at the momentum passing by; I know he cannot really focus or see anything in particular when we’re moving but how fabulous is it that he’s even aware of outside (on the plane to Jamaica he also watched out the window). Thank you for your help in obtaining this critical piece of equipment!
Now we’re onto sleeping and borrowing a Dakota chair from Home Care. I have never seen him sleep so comfortably or stay warm like he has been the past few nights. We can’t wait to meet with the company and get one made specifically to his size!
As many of you know, our family and friends are all supporters of our local children’s hospital, The Stollery. We use it frequently and for a variety of reasons. It is fair (yet sometimes overwhelmingly unfair) to say that without The Stollery, Ben’s quality of life would be much poorer; with his given expected life expectancy it is “fair” to say that The Stollery – doctors, nurses, research programs and their emergency care facility collectively, have saved his life.
Ben is one child. Just one. There are so many more like him. Some that are more fortunate, some that are less.
Let’s talk VALUE.
I am sure you have heard it said before that you do not know how beneficial our local children’s hospital is until you are a parent and have a sick or injured child in it. Until you see your child in a state of pain or illness and where as a parent your role becomes solely one of love and advocacy, you do not realize how important experts, support, information or advancements in technology really are.
Our son alone participates in several clinics including but sadly, not limited to: Neurology, Gastrointestinal and Home Nutrition, Ophthalmology, Podiatry and Physical Medicine. Each one of these units has greatly benefited Benjamin’s health and has provided us with support and instruction; we, as his parents, feel confident and certain in our decisions based on their input and proficiency.
Let’s talk RESOURCES & PROGRAMMING.
Last January, The Stollery Hospital opened its own emergency room separate from the University of Alberta, dedicated to pediatric and family centered planning. The environment is much more “kid-friendly” and provides a welcomed sense of comfort to parents having to take their children there. We have visited several times over the past fourteen months and firmly believe that it is an excellent addition to the hospital; all our visits have been met with kind, compassionate nurses and doctors who are willing to take the time to fully understand Ben’s medical background before providing him care. We appreciate this approach as often our reason for being there is drastic (life or death).
Have you been to the fourth floor? It is overwhelming and scary. And I am a parent. Imagine you are a child and are required to stay in the hospital for a few days… a few weeks… a few months? Fortunately, the fourth floor is not actually that scary. Medical equipment aside, the fourth floor is a very welcoming place for children and their families. Child Life Services help children cope through therapeutic play, learning, self-expression, socialization and interaction with peers. The “Beach” is a preschool/school age play room and there is also a Teen Room.
In addition to out/in patient care and emergency services, our family is involved in a research project gathering information on individuals with rare neurological disorders and the physiological and psychological changes Benjamin experiences monthly in hopes of finding commonality between children with similar setbacks.
Let’s talk MONEY.
Why should you support The Stollery Children’s Hospital, Children’s Miracle Network and local hospital? If the reasons above are not enough – watch this video.
Still not enough? Read through the rest of my blog and take the time to really and truly understand the obstacles Benjamin faces within his diagnosis. Better yet, look at what he’s overcome and the barriers he has KNOCKED OVER… and where he is going next. Check out this video of him a day after the surgery he had for insertion of a g-tube.