I’ve been using this blog as a way to really update friends and family members on everything that has been going on with John. Since we all know he has a lot of medical issues that are being addressed. I have also started using this as a reminder of what has happened and a way to release some of the stress of being a mom to a special needs child.
Don’t get me wrong. I love John very much, but there are times that I just need to walk away for a few moments and have some “me time” to wind down. I feel like I was constantly on the go and just a caregiver not his mother before having my mother as his home health nurse. With her, now I am starting to feel more like his mom vs. just a caregiver.
It’s hard to see your child go through so many appointments, see so many different doctors, connected to so many cords, etc… Most days I feel like I am a first time mom all over again because I have no idea what “John’s normal” is. So when he starts vomiting a feed I have to mentally run through a check list of what I have to do and why he would of vomited. Same with when any of his alarms go off. I have to check to see why and what alarm is going off.
It can be physically and emotionally draining with having an appointment almost every week (or several in 1 week). As well as dealing with all of his needs day in and day out. So there may be days that if you see me that I will look exhausted and probably haven’t slept much.
Thankfully I have a very supportive husband who helps as much as he can when he is able too. He helps numerous ways around the house and with our boys. He is my rock and listens when I need to discuss anything.
UPDATE FOR JULY 31ST:
ECI (Early Childhood Intervention) came out today to assess John. He will be needing Occupational Therapy 1-2 times a month, Physical Therapy since his physical structure is the age of a 2 month old, a Nutritionist, and Speech Therapy.