Saturday, January 28, 2012
I have learned that being my close friend is apparently difficult for most. In a perfect world and situation or even just a typical one, I think it would be easier, but I don't live that life. Play dates are hard to schedule around doctors appointments and physical therapy. Joining someone for a unscheduled lunch date is almost impossible because every second of my "free time" is clogged with playing catch up. And I know that is frustrating to people because it comes across that I am distant or don't care about developing relationships I think. If only people knew how dearly I crave other mother friendship.
Before James I would have never understood a post like this. I would have been just like everyone else and not truly understood how having a child with a disability controls your schedule and life at times. Other mom's move from stage to stage and milestone to milestone, but we are usually stuck in the same stages of life for long periods of time. And as other kids develop physically, it leaves us behind and that means that I have less and less in common with those other moms. Yes we have many ares still in common and the friendship tries to hang on. I have discovered that as those moms move on to T-ball , soccer, karate I am still talking about James being able to wiggle a toe and the friendship stops growing. When they say " hey lets take the kids to the park after school" I have to say know because I know that James will be to exhausted. I cant do a morning play date because we have physical therapy to go to and I can do one in the afternoon because James HAS to have a nap still at 4 years old. I have plan in advance things that they decided to do on a whim.
I causes the relationship to stall eventually because they just stop inviting us. Sometimes it is because they feel sorry for me and eventually get so uncomfortable because they don't know what to say anymore. Sometimes they start to feel that I am so focused on my son I am being selfish by not spending time with them, but most of the time the friendship just dies on the vine because they have moved on to a different aspect of life and we are still working on the basics.
Don't get my wrong it isn't all them. I hold responsibility for this happening to. I am totally focused on James and his physical ability and I know it takes a very patient person to hang around for that. When your child needs extra help to do simple tasks it makes you think twice about the simplest things. Friends have called me to take the kids to play dates. Usually they are so sweet and try to think of a place that will have something that James can do...in their eyes. I try to put on a smile and then head to google to look up the location to see if they have ramps, and activities that James can to. When we get there the other kids run off to do the age appropriate things and I will take James to something he can play on. I cant sit with the moms and chat, because I have to physically help James move and play. So we end up being isolated even at a play date and that makes everyone so uncomfortable.
When it comes to my schedule, no one ever gets that. They just can comprehend 3 physical therapy appointments every week, and then school, doctors appointments, orthopedic appointments, IEP meetings, and stretching that we do. I added up a typical week's appointments and school and it came to 46.5 hours a week! No wonder it is hard to find time for friends when a 4 year old is working a full time job! And those are the typical days, the months that we have surgery or intensive pt camp.....gosh I hardly get a shower much less conversation that doesn't involve talking about heel-cords or spastic nerves. When you have to check out of the everyday life for months at a time it is hard on relationships. I know that I sound like I am complaining about my life and I guess to a degree I am complaining about this aspect. I truly don't mean to. God has blessed me with the ability to do all these things for James and if others cant understand why I do all of this for my son, I cant fault them for distancing
Thursday, January 26, 2012
I have 3 cans of infant formula lined up on my kitchen counter and every time I walk by them my heart hurts. But I just cant seem to move them out of sight. Weird I know, but I feel that the sadness of this loss is all I have left so I don't want to just brush it aside. Not sure if that is healthy thing but that is where I am right now. I just think about how different our life would be if my body didn't betray me like this. We would be getting ready to welcome a brother or sister into the house for James and I think he would be so excited. But instead I am just left with cans of formula that will never be opened.
I am going to try and find some good use for them this week. I need to know that they will go to some use. Hopefully I can find a family that can use them or an organization that needs them. I just think it would fill this hole if I knew that they wont just sit on my counter and ruin.
Tuesday, January 24, 2012
Friday, January 13, 2012
If you are a parent of a child with some special needs you understand my title. In parenting we get so focused on those "big" childhood development milestones, but one of the perks to being a mom with a kid like James is that I get to slow down and enjoy the little things. Like 2 weeks ago my son wasn't able to kick below the knee, but today while eating dinner he started kicking his legs. It was such a beautiful sight.
Here it is!
James is 8 days post op from his PERC surgery, and we are seeing so many little things that are so HUGE. Everyday James is wiggling his toes more and more. He is also now able to move his foot up and down. Today he started back walking in his walker, and for the first time he has a HEEL STRIKE!! I bet some of you never thought about how your heel hits the ground first when you walk. Well for a kids like James it never has. We had been trying to teach him this but when you can't lift your foot up that is a hard thing to do. But not anymore :-) James got into his walker for the first time tonight and that was the first thing I noticed, a heel strike. He is still very hesitant and worried about moving in a way that is going to hurt but that is fading and he is still pretty sore. We have really be working on doing things with a good attitude and he is starting to grasp that concept more and more.
James works best with a end goal in sight. He likes to know what he has to do to make the exercises be over....who doesn't right! So I have been trying to make his home exercises a little more like how I did when I taught kindergarten. I made centers and set a timer. I took each exercise that I wanted him to do and made it a fun activity ( as fun as I could) and put them through out the living room in a circle. I set the timer for 30 mins and sad that when the timer went off we were finished. So we would do each center and it actually worked. He liked having a clear goal of what I wanted him to do and also a stopping point. I knew he understood when we got to the last center and he said "Look Mommy the last center and almost finished" I did his warm up as I was explaining the centers so he thought we were just talking but I was stretching him....sneaky Mommy!
I am just thrilled with his progress so far, and I know it will only get better. Please be thankful for your children's little movements. How I wish I could give James my legs and make all this go away, but I cant do that for him. Instead I will do all that I can to make sure we celebrate each little movement because I know they will lead him to move mountains!!