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Monday, January 31, 2011

Routine? what routine?

Those of you that know me know that I am a routine girl. I like to know what is coming and I am pretty sure James takes after me in that department. When our routine is off he and I dont do to well. So the past few days have been rough to say the least. James is not having very productive PT sessions. He just doesnt want to do the work and we are running out of ways to make some of it "fun". cause frankly it just isnt it is hard and painful and he just has to do it. Try explaining that to a 3 year old. So that is where we stand.

Right now I am typing this on my phone because I am trying to make a velcro choice board for James. I got to thinking that he must feel like all these things are just being done to him. so I am making a way for him to hopfully feel like he is taking some control over his therapy. I dont know if it will work but it is worth a shot right? Ill let you know how it works out

Thursday, January 27, 2011

Reality

Have you ever just been so happy in your little bubble of "normal' and then someone comes along and just sticks a pin in it? This has been my story for the week. I get going about my day and our routine and then something happens or something is said and the big ugly mirror of reality is shoved right in my face. I wonder when to parents of kids with special needs ignore these, or does that ever happen? Is there something that I am just not able to move past, that keeps me so sensitive to comments? The answer is I just don't know?

The last thing I want to be is negative. Yes we have had true heartbreak in our lives but we have also been witness to God amazing healing power, and His ability to put the pieces of my broken heart back together again. True there might always been those seams but giving God my grief  and worry allows me the freedom to live my life. But Satan sure knows where to attack me.

Earlier this week, I had a conversation with someone about a meeting that was going on that I was scheduled to attend. I am a leader of one of the committees and it was a time for people to meet everyone. I knew I needed to be there but I also knew that Josh had to work late and I would have to take James with me right during his bedtime. I also knew that the location is not exactly wheelchair friendly. So honestly I just didn't want to go if I was not truly needed. And in the conversation with this person, she mentioned that her kids would be running around playing and James could play with them. With all of my body, heart and mind I wish that were the case. But it isnt. The reality is, her children will be there running around on fully functioning legs. They will be interested in my son for about 5 mins and then run off and play together leaving my son. But I can say that to her, because that would be rude and make her uncomfortable And really there isnt anything she could do about it anyway. So I went and that is exactly what happened. James even noticed this time ( which crushed me) James asked me if he could get down and run like those kids. It was all I could do not to become a mass of tears right there when he asked that. But instead I kept my game face on and said " SURE honey, you can get down and play OR how about you RACE them with your wheels. I was happy he liked that option.

Then today when I was picking James up from school. I was so happy to hear about his good day. He and I were just strolling out to the car and he was telling me all about his day, when mother and her daughter walked by us. The daughter said  and pointed ( quite loudly) " Hey mommy that is the boy that Cant walk"
And the mother turned around to look and then asked her daughter " do you know why"  Now I know that people are curious as to why such a healthy looking ( and beautiful) child is in a wheelchair but cant you at least wait until you are in the car to talk about him. I honestly don't even think about or notice his wheelchair anymore so when people break their necks to stare or make comments it stops me in my tracks sometimes.

It breaks my heart that that little girls doesn't know James' name. She knows him as " the boy that cant walk" and that is NOT what defines my James or what he is. So I will be ending this post by telling you exactly what DOES define my James!!!
James is determined, sweet, kind hearted, the hardest working human being I know. If you sneeze he is the first to say bless you. He is the giver of the BEST kisses and hugs on the planet ( IMO) . When I bump my foot he always wants to know if I am OK. He loves his friends and his family. He tells the cutest knock knock jokes. His giggle can light up a room. When we do stretches and it hurts him he worries if I am hurting too. His little spiked head literally stops people in their tracks so they can tell me how cute he is. He tells perfect strangers that he like their shirts. He loves to make his mommy and daddy happy. He love to watch football with his daddy and tell the players to "Run it!" He tells me that I need to rest. His favorite game is Angry Birds. He likes to try and scare me by roaring, but then worries that he scared me, so he gives me hugs so I "feel better". He is sneaky. He is SO many many many more things that a boy in a wheelchair and I will spend my last breath making sure that HE knows it!

Sunday, January 23, 2011

Good ole James update

I thought it was about time that I did a Physical therapy and Surgery update on James. Sorry all these pictures are all from my phone but I just wanted to share some of them here.

Surgery first. James has done really well in his recovery. His scar is looking great. The swelling that has been above and below the scar is just about totally gone. They looked like there were little balls just under his skin. But we were told that all that is very normal as the bone that was removed from his spine grows back. Isn't the human body amazing!! The scare is about 2 to 3 inches and you can see when when he is shirtless. He will let ups touch or do whatever to it now without even noticing.

Physical therapy- We have had some changes in his PT routine. The therapist that we have had for a very long time has left the practice. We were very sad about this but our new therapist it wonderful. She is super sweet and James seems to like her ( as much as he is going to like a PT) James is receiving PT Mon and Wed and OT and Speech on Mon and Wed as well. These are hour and half sessions except for Wed which is a 2 hour session. We are looking for a new water therapist since the Pt that left was also our water therapist. This has made the biggest change in James. Since we have not been getting water therapy we have seen a BIG change in his tightness and pain level for therapy. So this is #1 on my to do list right now.

School- It is going GREAT! James is so happy in his little class. With the holiday and snow storms he hasn't been able to go in several weeks and we both miss it. I am ready to get him back on his routine because when he misses school that means he misses critical therapy sessions as well. He receives Pt, Ot and speech at school as well but only for 30 min each so they don't count toward his surgery Pt goals. With our PT leaving we are missing a PT day and since I could only get the 1 hr session at school until the end of Dec I am a little stressed about James not getting what he needs. Right now I am pretty much the only one feeling that pressure. I think family and friends are pretty much happy to just let him " Get what he gets and just be a kid" It is hard to make everyone understand that this is a year commitment to the surgery protocols. I guess that is why I have the mommy title huh :-) Which is fine. I am happy to do it.
It is isolating at times though. When I feel like everyone is tired of me talking about the surgery or physical therapy goals. I have to remind myself that they just don't live with this 24 hours a day everyday so for them it is a topic of conversation and for us it is just life.

What is next? The next few months will be just a busy as the last have been. James gets all new bracing this month including the new de-rotation cables ( ill post more about those later) We will also start a new stretching brace that he will have to sleep in. That is definitely a prayer request! Feb 2nd I will be taking James to Vanderbilt in Nashville for an eye appt. Our regular doctor moved and we have been in search of a new one.

I found a highly recommended one in Vandy so that is where we are headed. I have been noticing some pretty bad crossing and we were told that around 4 a second surgery was possible. I am hoping some patching is all that is needed!! Right now the dates are May but I think they will be moved up for the intensive camp. This is another 3 week camp similar to the last one and with the same therapist. This time we will be attending the camp 5 days a week instead of 4 and it will be 3 full weeks long. This camp was a HUGE part of the success James has had so far and Dr. Park said that he would like to see us do it every 6 months but at least once a year. So we are doing this one at the 6 month mark and then will probably look at once a year going forward. All depends on what insurance will cover and how much we can save up.

Now just for FUN!! These are a few pictures and things that James is up to in his everyday, sweet, smart and funny little life. I started a chore jar for James and he gets to "draw" what chore he will do each day. It also sneaks in some therapy ( notice the tall kneeling). i try to make everything he does fun and purposeful. This is James washing the french door windows.

Another "chore" is helping me clean the bathtub. Here we were actually done and I had walked out for a second. When I come back James had pulled himself to standing and was standing up and flat-footed!!
Here is James doing what he LOVES to do. Which is painting and drawing. Please ignore the trail of stuff on the floor. James is like little hurricane when he plays

James getting his haircut at our favorite place. Spoiled Rockin Kids Salon! It is a salon designed just for kids. They have a play area and TV with DVD players at each station. Ms. Nicole is so great with James. They even used him on an ad this past month!

We are potty training. We had a major set back when I was in Texas so we are starting back at square one but I know he will get back on track. This is a creation that I made for James and to help him sit up on the potty. When you have weak truck muscles it is difficult to sit on the potty, and adaptive seats are like 500 dollars!! So i had to be creative. With this he has a place to put his feet and color or read a book.



I think that covers most everything right now. As I type I have James at my feet asking to be fed so I have to run :-)




Saturday, January 15, 2011

Mommy Guilt

Alright Moms out there please tell me that I am not the only one that feels this. I am headed to Texas this week for a photography conference and I am SUPER excited but at the same time I an on the verge of a panic attack and the thought of leaving my family for 5 whole days!

I know that James will be loved, spoiled and safe at my mothers. I know that my husband will be well fed by my mother. And I know that the world will not spot turning because I am doing something for myself. But I find myself wanting to delete even those typed words.

"Doing something for myself"

It just sounds so selfish and silly. It doesnt sound like a good mother to me. And I know that those are things that I am telling myself but I cant seem to get them out of my head. I feel an extra burden because I am leaving someone else to take James to physical therapy. I worry that I am the only one that really understands how important it is that he gets there and that they appointments are productive. I worry this but yet I KNOW that when my mother takes him she will do exactly what I would in the situation. So why do I feel the sole responsibility . I guess that just comes with being a mother huh?

I am finding it really hard to pack because that just means I am really leaving. Oh how I LOVE my family and the thought of letting them down just breaks my heart. Please pray that I can give these thoughts and feelings to God so that He will free me of the burden of worry and guilt. I know that doing things like this will make me a better mother but I already just want to get home safe to my family. So if you have a extra minute in your prayer time here are some of the worries I need lifted up..

- My guilt over leaving
-Safe traveling and air flight ( I havent flown alone in over 15 years)
- Stress free PT visits for James and my mom
-that Josh and James will not miss me too much and will have fun while I am gone

Wednesday, January 12, 2011

My Blog, My Soap box

Lets talk about slowing down and counting our blessings. Here in the deep south we have had a snow storm. For us getting 10 inches of snow is a once in every about 15 years, and this week it happened. Now I have always loved snow. I love that it is like a blanket of quite that comes over the world and forces us all to stop. I love that grown adults are tempted to run out and build snowmen and make snow angels. I love just about everything about snow.

When your days are filled with scenes like this..


And this.........

And those days that THIS is apart of my day to day life...........
Having a day where my whole family gets to stay in our PJ's , watch movies and make silly faces and giggle....Well I call that a good day. And I can honestly say that I can never get enough of those days

These are the memories that James will be left with...



This is the moment in time that we will say "Remember that snow of 2011 when we made that 7ft two headed snowman?"

These are moments the bond a family together with memories


We get to forget that our life isn't like a "normal" family. We just get to let our son eat snow!


Instead of taking our son to a doctor, therapist, or surgeons office..... We take him for a hike in the snow.

So I guess I look at snow days a little differently than most. Life will speed up soon enough, and of course I enjoy those moments when James is in school and I can breath for a second. But THESE moments don't come around very often. And they are some of the most important moments in a families life because they mean something. They create our families story and history. All activities in the world wont mean anything 50 years from now, but this will mean something. Taking the opportunity to bond as a family means that when life gets difficult we have these happy times to look back on.
When I think back on my childhood I don't think about the difficult times. Snow days are some of the first memories that come to my mind. I have to struggle to remember all the activities we were involved in but when a snow day comes around I can even remember the smell of snow cream. I remember teaching our Lab to pull us up the hill for one more sled. I remember my mom and I sitting and watching the birds and looking them up in her dad's bird book. I remember playing Battleship and Scrabble, and that my dad was one of the best scrabble players EVER. I remember those moments, and I know if I take a snow day with a smile on my face and teach James how to slow down and enjoy the little things in life, he will remember too. These too are teachable moments for our children. If we teach them that slowing down is boring and inconvenient, we are teaching them that family time is not as valuable.
Ok stepping down from my snow day soapbox with one last note. I understand that there are jobs and situations that mean a parent cant "take" and actual snow day. That is not the point of this post and if that is all you come away with then I encourage you to take a moment to re-read it and get the meaning behind my words.
video

Saturday, January 1, 2011

New Design for the New Year

I have been wanting to have a new look for this blog for a while and I final had a few seconds to get it done. This weekend has been really great. Josh has has the entire weekend off and we have enjoyed each others company. We made a decisions a few years ago that some weekends are issue free. This means that we spend the time relaxing and reconnecting as a couple and family. No talk about therapies, doctors, or bills. Just time together.

Being a family that has to deal with a lot of extra issues, this has been a must for us. I dont think we would have as good of a marriage as we do if we didnt do this. When we were struggling so hard for so many years to have a child, I learned the hard way that men and women think differently. And I did somethings that really damaged us as a couple. I regret those things and have really prayed that God will help be be the woman and wife that He has called me to be. Ad for this strong willed lady it can be tough. But Issue free weekends have been a way that I give myself permission to let it all go.

I realized that the world didnt stop spinning because I didnt nag Josh about fixing the x,y and z. In fact I learned that when we grew closer together in the fun stuff we were on the same page with the serious side of life. Isn't God good!!

Ok so I know that this post is supposed to be about 2010, and I will get to writing one of those but honestly I have to work on it some more. Saying goodbye to 2010 is bittersweet and there are some things that I have not even shared here that I feel I need to let go of. I need to say goodbye to 2010 in the right way and not rush it because when I look back on this blog I want to really remember all the joys, tears and blessings that we have had this year.

So for now I am taking my own advise and going to go back to my husband and enjoy our issue free weekend!! Watch some football and enjoy snuggling with my family! As James told us today " HAPPY YEAR YEAR!"
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