This disease is devastating. I got in the car yesterday and looked at Max through my mirror - his eyes were staring off in the distance...they were going different directions...I started crying while my three year old asking me if I was ok. I think Max's eye sight is very limited. This disease is moving so fast. Josiah and I have been putting things in front of his face with no real reaction. He can definitely hear us and occasionally I think he will lock eyes with me - but it is happening less and less. He's also lost that beautiful smile. The baby who slept through the night at 1 1/2 months and laughed and smiled like no other baby I've ever seen...is now not able to express much. It is heart breaking.
When I get him dressed each morning - I talk him through it. He gets very jumpy or irritated with certain quick movements so talking him through it and going slowly seems to work. At the end, I tell him how proud I am of him and that he is so brave for not crying - his eyes always widen...a sense of pride...at least I'm going to interpret it this way. I remember posting quite awhile ago about me singing the ABC's to Max and at the end I'd ask him if he wanted me to sing again - and he'd coo. I'd give anything to have that moment in time back - to give him back those simple abilities. Life continues to change and throw obstacles our way...we've learned to adapt and change as needed but when you look back or think back to those early and happy days...it is hard. It is hard to live in the present and not to grieve the inevitable.
About a month ago we had an amazing Saturday at a local train park with the Jamison Family. I'm sorry I haven't posted this until now but wanted to share that we fulfilled Max's bucket list "Ride a Train" at the park. Emma loved the carousel, and we walked through an older train car from the 1920s - it was very cool. Then we all got on a little train and rode it around the park - Max ws very tired for a lot of the day but was soothed by the train ride with the wind in his hair - he really liked it. Thank you to the Jamison Family for the fun Saturday and for spoiling the kids and us - it was so generous of you all and was a great day spending time with you. I've included some pictures of the train park below - be sure to scroll to the bottom to check them out and I hope to upload the video soon as well.
We are taking each day as it comes. Suctioning and trying to modify his feeding schedules appropriately so his little body can handle it are our daily battles. Working to get insurance to cover certain things and working now with the state insurance to get the nursing care we need has been crazy. Swerving to get to the side of the road because he is choking or me jumping in the back while Josiah continues to drive happens more frequently. It is scary to only have one adult in the car. I'm sure during rush hour that we upset a lot of people when this happens. Just remember if you get cut off or someone does something on the road that comes out of nowhere - please remember that they could be racing to an emergency or trying to help their child in the backseat. While we try to be as careful as we can, there are times that we get a little crazy. Luckily the majority of his struggles in the car have come when both of us have been there but we've been alone when it happens and it can be very scary for him and for us.
We have a nurse come out to the house once a week to weigh Max and answer any questions to be sure he is where he needs to be with everything. We have a therapist come to the home once a week to help massage Max and stretch him - Max LOVES her. You can tell it has been a good day when "Miss Lisa" has come to our house.
It continues to be a struggle to balance "real life" with all of the medical obstacles but we are getting through it the best we know how. Emma is now alerting us if he is choking and has the suction machine in hand to help Max out - how many 3 year olds even know what a suction machine is?! :-( She perseveres through it all but some days the "attention" balance is harder than others and she clearly suffers with not as much.
Thank you for your continued support. Your messages on Max's Facebook page are so loved and each one is read. We appreciate the questions - I'm happy to help educate the best I know how. Keep them coming. We appreciate all of the support around the wristbands, t-shirts, gifts, money and simple notes. Your love surrounds us and helps us through each day. Thank you for continuing to lift us up and help us out. We appreciate it more than you know.