A New Season

A lot has changed since I last posted, definitely for the better.

Jackson's surgery was a roller coaster of emotions. Things went well and it took time to heal but I couldn't be happier. Jackson's couldn't be happier either. Five weeks after surgery I got to see my little boy, now 9 months old, do something I never thought it would... crawl. It's amazing how I used to see other babies and just take so many things they did for granted. The look on Jackson's face when he realized he could go wherever he wanted was priceless. Then I few months after that he started pulling up on things and moving around on his feet. This was my biggest fear since he was diagnosed, that he wouldn't be able to walk. He's not there just yet but he's such a determined little guy and he will figure it out soon enough.

It's only by God's grace that I have this precious little boy in my life. He has changed me for the better in so many ways most of which I can't explain. It is amazing how one day, June 10, 2010, can change my outlook on life, love, and the world.

The Day Has Come

Tomorrow is Jackson's surgery and I can say that I'm freaking out. I haven't been able to sleep for days and the only way I keep from breaking down is distracting myself. I try to keep telling myself that this surgery is for Jackson to have better mobility and potentially an easier life. However, all I keep seeing is my happy, smiling little boy that is playing with his toys and he has no idea what is about to happen. I'm scared that something could go wrong or he could be in pain. I took him to the hospital yesterday for a consultation and my worst nightmare came true, Jackson knew that something was going on. He now freaks out when the doctors and nurses come in the room. I knew this day would come but it breaks my heart. I know they say he won't remember any of it but it doesn't make me feel any better.

I'm trying to be strong and every time I catch myself starting to cry I pray. It's the only thing I can do. Take a deep breath and pray.

You Can't Control Everything?

I'm laying in bed with my mind racing. I'm thinking of a hundred things and cant sleep. This isn't something unusual for me lately. Ever since I was pregnant I couldn't sleep. Just all the unknowns of pregnancy flooded my mind. If u know me at all then u know that I'm a planner. I like everything done the way I thought it should be and I want to know how everything will work out before I do anything. Unfortunately for me, life doesn't work that way.

Just tonight, in my last mind-racing state, I come to the realization that I do this when I'm worried. When I can't control something I block it out and think of what I can control. My most recent out-of-control situation is Jackson's surgery coming up next Thursday. I feel like I have switched off the emotional side of my brain. I know about the surgery and I've have everything prepared for it but I just can't come to terms with really thinking about it. For some reason it seems its like a job to me, and I don't mean it in a bad way. I love my job as a mom but this is different. It's like I have all these tasks and planning that are required and it's a to-do list for me. These things need done and I'm getting it done. Maybe it will hit me when the surgery day comes, maybe. I wish I could turn my survivor mode off and my emotional side back on. I wish I could just let go of the control. I have all these balls I'm juggling and if i make one false move then there all going to fall down. I guess it's just life but wouldn't it be nice if life was like kindergarten and we all could have nap time and recess?

He's Got The Whole World In His Hands

Jackson finally decided he was going to take a nap today so now I can have a chance to write. The past couple of weeks have been a lot of work. Jackson's doctors are going to perform his first surgery, one of probably many unfortunately. His surgery is scheduled for March 24th, hopefully, unless they change the date on me again. The schedulers says its for sure the 24th now so let's cross our fingers!

We met with the orthopedic surgeon on Friday to finalize the plans for Jackson. Basically, they are going to remove the toes and a good potion of his right foot. This will created a foot that is the right size for him and help him out when it's time for shoes and walking. It sounds like a terrible thing but really it's going to be best for Jackson. At least that's what I keep telling myself over and over when I think about how they are going to remove part of my baby's foot. I think about how every woman I knew that had babies would ask doctor if their baby had all 10 toes and fingers. It makes me laugh now. If you really knew how unimportant those things are for you to have normal life, no one would care to count them.

I am nervous but there is only so much I can do. I've made sure he has the right doctors. I've asked all the questions I could think of and hopefully I've got all the answers I need. If I sat around and thought about all the things that could go wrong I wouldn't accomplish anything besides driving myself crazy. All I can do now is trust. I need to trust that God has it in his hands and I need to lean on Him.

Proverbs 3:5-6 (King James Version)

 ⁵Trust in the LORD with all thine heart; and lean not unto thine own understanding.
 ⁶In all thy ways acknowledge him, and he shall direct thy paths

Some People Have No Sense

I know that sounds like a harsh title but its the truth. I've encountered this 'same' person so many times I can't keep track. This is what happens...

Jackson and I are at the fabric store waiting in line at the checkout. There is an older woman, probably 60s, standing behind me. I'm not paying attention to this lady because I'm trying to keep Jackson happy until I can get out of here. This lady says to me, "Excuse me". I didn't think she was talking to me until I hear it again, followed by a tap on my shoulder, "Excuse me". I turn around and say, "yes?". She says "I don't mean to be rude (while pointing at Jackson's foot) but does your baby have a club foot?" Honestly! Some people have no sense! Why do people think its completely ok to ask me what is wrong with my baby? It blows my mind. This happens to me all most every time I take Jackson out. By now, I expect this to happen so I just give the person some lengthy medical explanation that I know they don't understand, smile and walk away.

I was just thinking about it the other day. What if the person they were asking didn't have the attitude about their baby's condition like I do? What if I was a woman that was upset and depressed about my situation and some stranger in a store decided to point out my baby's differences? I really would like to look at these people that think it's ok to ask these questions and say "do you see a child in a wheelchair and ask what happened? Do you ask a child with no hair if they have cancer? What makes it ok for you, a stranger, to ask me anything regarding my child?"

I've come very close to asking these questions to the rude people myself but then that just makes me jerk just like them. I've always been told to kill them with kindness and that's exactly what I do. I just wish one day they'll get it. If your statement or question begins with "I don't mean to be rude" keep your thoughts to yourself. :)

Just Another Day

I've was woken up this morning to Jackson yelling from the other room. He really doesn't know any words yet so its like a "ah ah ah ah ah" noise. He makes me laugh every time he yells for me. By 9am I'm on the phone trying to deal with insurance companies, the hospital, nurses, home care and BCMH. O the joys of life, all the while feeding Jackson his breakfast. By now I think I can say I've become a Pro at dealing with all these people but there is always one person that thinks I'm a idiot and what she says is gold. When I encounter this person, I just take a deep breath and ignore their obvious hate for their job and I try to crack a joke. This usually doesn't get a laugh but hey, I think I'm funny!

I try to keep Jackson up for long enough so that he gets his morning 'business' out of the way. It never works out. Every time I put him down for his nap, his 'business' wakes him up 15 minutes into it. So now that it's taken care of for the morning we're playing until he's sleepy again.

I can't believe how big Jackson is getting these days. He's a little over 8 months old now and he's starting to look like such a little boy. My little tiny baby is gone. I put away all the little clothes that don't fit him anymore and I reminisce about how little he used to be! I remember having to buy smaller clothes because the ones I had he was swimming in! I can't help to miss by newborn baby but I love to see him discover some many new things. Just this week, he is trying to move all over the place. He can't crawl due to his one foot getting in the way but he definetly figures out how to get around. He has figured out how to roll over and over again until he reaches the Blu Ray player and plays with the buttons. He's starting to figure out what he can and can't play with. He gets all the way up to it and looks right at me before he touches it. He really does crack me up.

Jackson's bath last night went so well! Pete and I both usually dread  giving him a bath and changing his wraps. It's like messing with disaster. His skin is so sensitive on his legs that even the slightest touch can cause the blebs to break open and bleed. It doesn't bother Jackson but its obviously a mess to deal with. He was having a issue with the dryness of  that skin sticking to the stocking that goes between his skin and the wraps themselves. So, every time we took them off, the skin would break open. Last time we went to the DR they gave us an ointment to try and its a miracle in a tube! All the dryness is gone and his stocking doesn't stick! The best part is, there hasn't been any bleeding! Jackson was getting so irritated by the dryness because he wanted to scratch it. I can't imagine how frustration it would be to have an itch you can't scratch! But with this new ointment, he's so calm. He even LIKED his bath! He splashed around and didn't fuss at all! It was amazing. He even let me take pictures of him, and he was smiling! Every mom needs the embarrassing bath tub shot!

I've realized that everyday with Jackson's condition is a learning experience for us. There really isn't a book of all the things you need to know that work and that don't. Which I guess there really isn't a book like that for any baby so maybe our experiences really aren't that different from other parents. All I know is that thing with Jackson is getting better and better each day. I'm so amazed how all these things work themselves out. Some call it a coincidence, I call it "a God thing".

The Months After Leaving The Hospital

Listening to Lady Antebellum: Loves' Lookin Good On You

Things with Jackson were going pretty good. We would go back to Cincinnati for his check-ups once a month. The group he works with there is awesome. We have had to hospitalized Jackson a few times since then. He had some cellulitius in his right foot, it's an infection of the skin. Its pretty painful and needed to be treated with IV antibiotics. Any type of infection could cause major problems with Jackson because of his condition. He was also admitted because he was bleeding internally in his butt. He has some cysts there that can rupture under the skin. Since that happened, he had to have a blood transfusion to make up for the loss.

Jackson has been home with us since October without any hospitalization, Praise the Lord! We found what works for wrapping his legs and what doesn't. He is actually stable. It took 6 months to get him that way but I'm so thankful he is. In September, he had a MRI done to find out what was going on internally with the KT. Their findings were about what they thought it would be. He does have some internal cysts in his abdomen but once again THANK GOD they don't interfere with his organs. If I say it once, I'll say it a million times, WE ARE BLESSED!

It took awhile for us to get used to the fact that our son has a disability. Honestly, writing this blog is the first time I've really let myself feel what we went though. I wrote it in my journal with a very factual attitude. I felt like I couldn't let my emotions show. I had to be strong. I couldn't let myself get in the way of doing what I had to do for my son. I needed to do this.  I would lay in bed at night and go over these events and maybe let out a few tears but that was it. It drove me nuts. I just wanted to get it all out, all at once and be done with me. Put it in my memories as "dealt with". I think that is usually the problem when people have problems. They never recognize them and deal with it and let it go. I feel like I have a huge weight lifted off my shoulders.

I'm letting go of the past and moving ahead with our future. I can't wait to see all the things it is going to hold for my family.