Coming home will be hard. In some ways I don't want to. I want to stay away where there is little reminders of our past, although every day I see daddy in Toby's eyes, in his heart. I don't see him in every room, in every photo, in every seat. To those that wish to put a time line on our grief I wonder what you would do? How you would react? To those that would put a limit to our friendships? How far would you go? We're here were surviving & were living without him every day, it's unfair. But we're doing it and we are pushing on, we will continue to survive & fight but we will continue to grieve as only we know how. Cheers to tomorrow!! Cheers to new beginnings & to seeing what the future holds we are not afraid to face it head on.
Thursday, June 11, 2015
Tomorrow marks anew day in our journey a pretty stressful day but one that hopefully has a happy ending. Toby is getting his baclofen pump inserted. What does this mean? Well... He's getting a special pump inserted into his abdomen that will control & deliver just the right amount of baclofen a drug to control his movements to his spine where it's needed. Currently he takes oral baclofen but it needs to be in high doses to work as it has to cross the blood Bain barrier. But with this pump he needs minute doses so is less likely to be drowsy and may get back some purposeful movement of his limbs. We are very hopeful that this will help him long term become a better user of his electric wheelchair and his communication device etc. I'm hoping for big things to come form these little movements. I'm scared to death of putting my son through such extream & to a certain point still experimental surgery it's only preformed on 10-12 kids in Australia a year. But for what little Gains may mean so much to his quality of life. It also means that it's almost time for us to come home from what will be a 2 week long break in Melbourne from our lives in Tas. Our lives that have been so disrupted and wrecked that I'm not even sure what we are coming home to. I'm coming home to my 3 older children & that I can't wait for. But the rest seams like such a distant memory without coming home to our husband our daddy. We miss him so much & know he would have loved to be here on this special day. Although I can't feel him I know he's going to be keeping a watchful eye on Toby and myself to make sure all will be ok.