I usually try really hard to be strong and to let the world know how amazing Ali is and how proud I am of her but right now, I’m frustrated and to be honest, I’m devastated. I’m trying so hard not to be because that will only make it worse but I honestly want to give up. One of the main aspects of feeding therapy is to keep it fun, not push too hard, not force it but I don’t know how much longer I can do this. Every meal in this house is a huge event. There’s a meal to prepare for the rest of us and then there’s puree for Ali and things to dip in the puree and crumbs to dip the purees in and throughout the meal we encourage biting and dipping and licking and we also work on drinking. Once the meal (or snack because I do this at snack time too) is cleaned up and believe me, it’s a huge mess, then we tube feed her. She gets a homemade blended diet with lots of real foods and supplements. Then we do it all again, usually 5 times a day. Between all this, there are other therapies to do, household chores, another child that has needs of her own and two dogs.

So there you go, the success is great but the setbacks really hurt and they are sometimes really hard to recover from. People keep telling me that I should still be happy, after all, I now know that she can swallow and I know that the goal is achievable. I understand how people could see it that way but if you don’t live my life than you can’t possibly understand how discouraged I feel right now. It’s like playing in the Stanley Cup Final and losing in a game 7 shootout, who cares if it was achievable or not, it’s gone and to bring that cup home you have to start all over again. Only that’s a game and this is our life and this is my full time job. I feel so much pressure. We are responsible for making sure the one day Ali eats like the rest of us, it won’t happen all by itself and it literally takes hours a day to move her towards achieving that goal.  To have a huge set back like this right after having such a huge step forward honestly makes me want to quit. I won’t though. I have to find some way to hide the frustration and sadness and keep on doing this because if I stop or I get frustrated or mad then I’m going to set her back further. I need to find some way to pick myself up and keep going and sometimes it’s really hard. This is really hard.

On top of that we are going through a funding transition. Ali is now eligible for Program Unit Funding which is given to the school board to help prepare children to enter the school system. When a child becomes PUF eligible they lose services that aren’t given through PUF. The theory is that you use the PUF funding to rehire private therapists but in small towns there is no one to hire. So the CNIB transferred her to a different department and we lost our vision therapist, I can’t find one to hire with PUF so now, Ali will go without but that’s not a huge deal. The big issue is that Alberta Health Services does not provide therapies to children who our PUF funded so we are going to lose our speech therapist and we’ll have to either have an SLP from the city see Ali by video conference or use two thirds of our funding to pay one to commute from Edmonton. I have been fighting with AHS but it’s time to give up that fight because every time they give me a loophole and I manage to squeeze through it, they take it away. I have no doubt in my mind that they owe Ali this service (because for Ali her oral motor skills are a health issue, not just school readiness) but they’re not willing to budge so that’s that. The reason this is such a huge problem for me (and will be for Ali) is that over the past year, Ali’s feeding therapists and Speech therapist have worked very closely and we have seen so much progress in both feeding and speech and I am afraid that losing a valuable member of this team will set her back. Her oral motor issues are all so closely related that our therapists have to work as a team to see progress and we’re breaking up that team at such a critical time. I have a child with the worst speech delay a child can have, her oral motor skills are so bad that she’s completely tube fed and yet it is the opinion of AHS that her speech issues are not their problem regardless of whether or not we have the ability to find her a similar level of care elsewhere. Especially now, when I am so discouraged, changing service models and losing our SLP feels like the end of the world even if it’s not.

I am lucky to have two amazing children and I know that. I am happy to stand beside Ali through everything and if I have to spend my life doing therapy with her I will because that’s what moms do. I’m so proud of her and whether or not she’s eating, she’s amazing and I love her to the moon and back but what I need right now is another step forward because these backwards steps are too hard to deal with.

Normally I don’t write posts like this but I’m trying to find a way to get back on track (me, not Ali) and I thought sharing might help. So thanks for reading. 🙂