Since we have been home - Max has been extremely lethargic. He sleeps all but 3-4 hours day and night. He doesn't want to be touched, held or move. He doesn't want to hold onto things or be moved into new positions. I don't think his eye sight is what it was because he is gazing past us again and you have to get right in front of him to catch his eyes and have him focus on you. He seems grumpy and fussy - I think we have lost some trust from him...he doesn't know what is coming next. It is scary for him. It is scary for us.
G-tubes, feeding pumps, syringes, medications, suction machines, oxygen on the way, nursing home help, physical therapies, doctor appointments -- it is coming all at once. It is overwhelming. It is exhausting. It is hard to hold it together some days. Frustration sets in. Anger. Helplessness.
I felt strong in the beginning - we can tackle this...learn as we go. But it is tough. It is hard to not know how to help your child. It is hard knowing that there is no solution. It is hard knowing it will only get worse. It is hard knowing that we will lose him to this awful disease at some point. It is hard to stay positive. It is frustrating that the state can't approve programs to help Max fast enough (this disease is all about time) - we are still waiting. It is frustrating that insurance denies certain pieces of equipment that will help him - we are fighting to get these things. It is frustrating that you ask nurses and doctors questions and they don't have the answers - or they tell you one thing and we should be doing something completely different - yet another mediocre experience at Phoenix Children's on our side (except for the surgeon who was great). - you do find some that really care and go out of their way - we have a handful that we are forever grateful for. It is frustrating that the Department of Health and the Newborn Screening Department in AZ is postponing things because of a rule freeze made by the governor - now we are looking at fighting to get Krabbe added in 2016. It is frustrating that we are having to bounce our daughter from one place to the other while we care for Max...she is handling it ok but has been acting out a bit more because Max is getting our attention. It is hard to continue to find hope. I struggle with it every day.
No one should ever have to go through all of this. We get exhausted working to get answers and help but we'll continue to fight and move forward so that Max gets what he needs - we are his voice. We will continue to fight so that the state will understand why it is so important to test for this disease - so that no other family will have to endure this pain and heartache - and so no child has to suffer.
Hopefully we will get a "more energized Max" back to us in the next few days so we can continue with some of our fun experiences with him. In the meantime - we keep him comfortable and love him beyond belief.
I know this is definitely a more emotional post - it is raw emotion - but it is our new reality and it has been tough to swallow and get used to. It is our "new normal" for the time being.
Thanks as always for your love and support. I have faith that all of this is happening for a reason beyond my understanding, and we continue to try and live in the moment and take things as they come.