If you have kids, you understand the daily tasks that it takes just to 1. Keep up with them as well as the house and 2. Trying to take care of yourself. By the end of the day, you're exhausted.
ADD A SPECIAL NEEDS CHILD ON TOP OF THAT!!! Now that is exhausting. We don't want your pitty, don't feel sorry for us, but try to understand us. Remember the exhaustion you had after giving birth. Your newborn woke up many times to eat, to be changed, or to be comforted. OR many of you got luck and had your child sleeping through the night since birth. AND TO YOU ALL... I ENVY YOU!!!!
Well, Imagine that "newborn" stage never stopping. For many parents they still have to wake up in the middle of the night and tend to their Special Needs (SN) child. Logan didn't start sleeping through the night until he was about 7 years old. When he does wake up in the middle of the night, that's when I know he is sick.
Logan can't walk. He hates his wheelchair and only wants to stand. He likes to be independent. When he is in his wheelchair, WATCH YOUR TOES, ANKLES and CALVES. Aaron and I have to carry Logan from one location to the next. Many times we make him crawl to the bathroom or to his room or to the table. But, we have to lift him in and out of the tub, lift him into the car to go into his car seat, and many other locations. But think of this... as a child gets older, many of them gain weight. So, you would think that Logan would be an incentive to work out more. SLEEP TAKES OVER, and then we complain that we didn't work out. LOL
Feeding Logan is always an interesting task. If he refuses to eat, we rely on his feeding tube. This kid needs a high calorie diet in order to gain weight but to also keep weight on. He can lose weight very easily. It literally looks like a Thanksgiving Feast for Logan during every meal. But, this is our "normal" almost all of our kids, including our 4 year old, can tube feed Logan. Sometimes I think Logan is secretly enjoying all the pampering of being fed too. LOL. "Please...feed me my grapes." LOL
Do we dare talk about his diapers. Think about the diaper you changed for a newborn or even a toddler. What happens to kids "deposits" as they get older? I don't need to answer that... I'm sure you can figure it out for yourselves. LOL. Well, because of that, his bed needs to be changed almost daily. He has plenty of diaper coverage for night time, but, life just happens, and when you move a lot with "deposits" in a small space, things tend to "escape" ... lol .... Did I gross you out yet? Its life. Everybody poops, but many of us don't think about others dealing with it on a CONSTANT basis.
Now getting Logan dressed. He has his opinions on what to wear like any other kid. So, many times it ends up as a wrestling match on what to wear and then getting it onto his body. Let me tell you, when you get his pants on, his socks, then braces and shoes... WATCH OUT... its like THOR'S hammer coming at you.... and when his feet nail you on the arms or legs....OH HEAVEN HELP ME....it hurts so bad, your shocked that he didn't break any of your body parts.
Communicating with Logan is challenging and yet frustrating for both sides. For Logan because he has an under developed cerebellum, he can't control a lot of his movements and so his sign language is modified, and we end up guessing what he is saying. When you don't guess it right, he gets MAD. He will yell, hit his face or slam his head on the floor. As a family, we need to do better on our part in growing in our sign language. He understands when we talk to him but for him to respond, he relies on sign language. WE JUST NEED TO GROW AND DO BETTER WITH OUR SIGN LANGUAGE.
Oh goodness, do we dare talk about how many specialists that he see's? We have been extremely blessed with how far Logan has come and use to go to his appointments at least twice a week, and it was an hour drive there and back. But now, he has at least to 1-2 appointments a month. Logan has truly progressed and grown in a positive direction. BUT, the down side is, when we go to these appointments, he is very likely to catch something and get sick. Knock on wood, we haven't ended up in the hospital, but in the beginning, we had to go to the hospital EVERY TIME HE GOT SICK. He is THAT FRAGILE!
And then there is the task of finding babysitters. I would love to Travel with Aaron, as well as travel for my business, but finding babysitters that have the strength, understanding and energy to take care of Logan is like finding a needle in a haystack. I will be honest that I envy many people that can pick up there things and go some where independently or with their spouse. Having someone to watch your kids is like no big deal, but for many of us SN parents, it is extremely challenging. We have to save our money not only for our outings, but for the sitter. Because lets face it, I'm paying more because there are a few more tasks at hand than watching a "normal" kid.
My girls are extremely helpful. Luke can be helpful as well ( and a bit of a challenge as well), but there are times when Aaron and I want to take just the girls. So, finding someone to watch a SN child and an active 4 year old.........well, ya.. there you have it.
This is a sliver of understanding of the daily tasks it takes to have a special needs child. I could write a novel what we go through, but Im here writing to give you an insight on what others go through and to be grateful for the things that you have. Everyone's lives are different, and we all face our own challenges.
I am here to tell you that as a mom, I am here to stay strong, and to keep pushing through in life, especially for things that I am working for, for myself and for my family.