May

Oh May! Here you are again :-) I am so thankful to be here on this earth with my son that God has allowed me to raise. But parts of my heart are in heaven. So I have been reading a lot through Psalms. I find that really lifts my spirits and helps me to see the beauty and joy that there is here on earth. I truly have been blessed and I know that some in our situation dont understand that. I guess on the surface it is strange to say that I am blessed because I have a son with special needs. But it is true. Yes, I dont always like how the world see James and I dont like how his body can cause him pain at times. But there are many more blessings that there are woes.

This week God allowed me to stop and remember one of those blessings. I bough James little sprinkler. I was hoping that he wold be able to use his walker in the yard and play in the water. That didnt happen but I am sure by the end of the summer it will. What did happen was a moment that I will never forget. I pick James up and proceeded to run through the sprinkler with him ( in my clothes). The giggles that I cold feel from his little body in my arms were really beautiful. We played for an hour until I literally had to sit with him in the mud we had made in the yard and just laugh.

And in that moment I thought about what a  "typical" life would have been like. I would have probably missed the joy of running like a 6 year old in the sprinkler because I would have been letting James play as I read a magazine or something. But instead I was given a gift. The gift of being able to play with me son in a way that most parents will never get to experience. I am thankful for that

This time Last year...

I made this post. I remember those feelings of fear. And look at James today. Today I watched him walked from a parking lot into the hospital to see our friends brand new baby sister. No wheelchair, no stroller. Just James walking. What will I say this time NEXT year? How will this new normal change us forever in the year to come.Josh and I are in the middle of making some very big decisions for our family. Your prayers are greatly appreciated. I find that is this is why I love blogging because my heart is right there staring at me on the computer screen. I can see how far we have come from this time LAST year......

~We are 21 days away from having out lives change forever. 21 days until I allow a neurosurgeon to open up my son's spine and cut nerves.....How do I wrap my head around this? We have had our big fundraiser and that helped keep my mind off the surgery but now all I have is time to keep me busy and it isn't my friend. I have struggled with doubt and confusion over this surgery. I felt so confident about our decision when the surgery we 6 months away, but now that it is a short 21 days away the fear and doubt are keeping me up at night.

Last night I woke up at 3am and was gripped with utter fear. My mind was an enemy that I could not get away from. Every time I put James to bed I think to myself " Enjoy this moment because I might not get anymore" I look at his little smile during the day and think " How will I ever breath again if I cant see that fact anymore"

 

I know that God is in control but my fear of loosing the 1 child God has allowed me to raise here on this earth is controlling me right now. I don't really know how to escape from its grasp. I have even thought about cancelling the surgery. I of course didn't but because my head knows this is the best thing for James' future. I just cant seem to control this fear and pure terror of loosing James. Right now I am listening to him in his room name everything he can see just to try and keep himself awake during nap time, and the sound of his voice is literally what I dreamt about before he was born.

I am also so afraid of seeing him hooked up to machines and tubes coming out of him. When we brought him home from the NICU I had hoped that I would never have to seen tubes and vents and IVs ever again but here we are. My head knows that it isn't like the first time but my heart worries. I worry about the moment I turn him over to the nurses and to go into the OR. Will he cry, be scared? Will my get physically ill like I do when I think about that moment.

What about when he wakes up? Will I be able to comfort him if he is in pain. How bad will his pain be and will they be able to manage it quickly. Oh so many thoughts are happening to me just 21 days out.

Will you please pray for this Mommy's heart, and that I will be able to be strong for James. I want ease his fears but I cant control my own. Please pray that God will show me His peace. And MOST importantly, please pray for Dr. Park. Pray that he is well and that in these next 21 days he will healthy and that all the nurses that will touch my son will be rested and well.~

Transitions in Life

This post is going to be like my Momma veggie soup. Its going to have a little bit of everything in it. We are home from Birmingham and James is doing GREAT! He has gone back to school and we have decided to not take his wheelchair to school with him. This was a really big decision because it means that James is responsible for all of his own movements. It also means that we put a LOT of trust in James teachers to give him the support and time that he needs to be successful and not frustrated with his new walking abilities. But I am proud to say he is doing GREAT! His teacher has told me that she let him leave a few minutes early ( with his Aid of course) and he walks where he needs to go. Of course what 3 year old wants to have to leave the playground before all of his other classmates!!?? So there are still a few age appropriate hills to climb. I know that will come naturally with time. This time last year we were just excited that he could even stand up in his walker for a few minutes. He has come so very far and it is thanks to these ladies pictured below helping me create goals for James at school! On the Right is James' Pre-K teacher Mrs. Trish and to the Left is the classroom Aid teacher Mrs. Dezzy

Sometime transitions are so very hard. We are praying very hard that James' teacher Mrs. Trish is able to come back to the Pre-K program next year. It all depends on the numbers of student in the program and if they allow the school to keep that teaching unit. I just cant say enough about house much we love Mrs. Trish. She has loved on James in a way that gave him appropriate boundaries and limits. She also let James be James. He has grown so much under her care. I thought we had everything worked out so that James would be able to stay in her class for another Pre-K year . But red tape and the bottom line of the school system are yet again affecting how my son develops. I have let my voice be known but I know that money is the bottom line and if the school system  ( as in the Central Office not the Local school office)  has to choose saving a few extra bucks over the good of students. I am sad to say this, but they will choose the bottom line. SURE they will have a wonderfully politically correct reason for it but they arent in the classroom and they dont see how it really affects the kids. But I am going to pray everyday that soft heart prevail and that kids are put before budgets! Will you please join me in this prayer request? James and many kids like him NEED more teachers like Mrs. Trish and we want to keep her as long as we can!

Our little family also experienced a loss this week. Our beautiful, sweet and beloved Lab names Sushi passed away during surgery to removed what we thought was an obstruction. It turned out to be that her intestines had twisted. I am told that this is something that can happen in large chested dogs like Labs. We we not expecting this because she was a young and healthy Lab. Sushi and I had a very special bond. She protected me from a stranger that was trying to rob our old house one night while I was alone, and she literally chased him down the road as he yelled for me to help! haha She was James wrestling partner as well as a place for James to rest his swollen legs at night

 She was Playful and Silly

 I could talk to her like a friend, and she always knew just how to make me feel better.

 I loved that dog more than I have ever loved an animal and if I am honest, I loved her more than I loved some people. She "got" me. She was my sense of security when Josh worked long hours. She and  I would snuggle up and watch Tv or she would just keep my feet warm.

 She celebrated with us in each of James milestones. She was always with us or at least in the background watching quietly.

She wasnt content to just wag her tail. She loved us so much she wagged her whole body. I miss her kind eyes and shiny coat so bad I can hardly stand it. I have always been an animal lover and gotten very close to my animals. Sushi was different because she was apart of MY family. My son loved her so much and so did my husband. We buried her at my mother's house just in case we move. Josh and I just stood at her grave and cried. We hadnt done that in a very long time and it was sort of good for us to get that out again. so I thank Sushi for that moment she gave us. Seeing our son grieve has been the most difficult part of it. He misses her very badly. He has asked me every night to please drive to heaven and bring Sushi home. Dont you wish it worked that way. I certainly dont know how the whole pets in heaven things works on a theological stand point, but I do believe that when God created dogs he knew the bond we would develop. So I like to think He will give us the joy of animals in heaven as well. I know that Sushi gave us a lot of joy here on earth and I am thankful for that. Sushi is already dearly missed but I know that I will remember her always and the unconditional love she gave to me while she was apart of our family. ~Thank you dear God for creating such beautiful animals that we can share this earth with.

We decided that we didnt want to wait to get another dog. James was very sad and honestly it helps me to have another furry face to love on too. So we adopted a 17 week old puppy from the humane society yesterday. She is a Lab and Border Collie mix.

We have named her "Manga" after the Japanese Black and White comic books. She is a sweet little puppy, a little shy but I am sure James will work that out of her. We havent had a puppy in such a long time. I had forgotten what that was like, but I am happy with her. I hope she fits into our family well. She is really starting to to work her way into my heart as well. She is very smart and we hope to be able to train her to help James like we did with Sushi. I know she will create her own special memories with our family over the years.

Happy Mother' day

No matter if your children and here on earth or waiting for you in heaven, or like me both. being a mother is a wonderful gift that I cherish. I wish all Mother's a peaceful and wonderful day. Happy Mother's day

Just 1 more..

Well tomorrow will be our last Long camp day and then Friday we have a 1 hour eval. After the eval, we are headed home! I am ready to get back to our routine and my comfy bed! As a side bar, if you ever think about buying a sleep number bed......quickly slap yourself in the face and be glad you didnt buy one!!

I am going to post the before and after Evals from this camp. Even before I see the "official" results I have been witness to them. James came into camp pretty much dragging his toes as he walked in his walker and his left foot was turning in very badly. After these intensive 3 weeks we can barely see the turning in at all. Now that doesnt mean the issue is gone for good. I am not that naive, but it DOES mean that the bone is still straight and with proper stretching we can get those muscle to do what they are supposed to do.

This time has also allowed me to do a little thinking about my own healthy and physical well being. I am asking James to do so much and I am asking very little of myself. I am of course talking about requiring my own self to have will power and take control of my own body. I have to do this. I have been walking James to PT instead of the car and that has felt great. Being that we are starting over since our Fridge and freezer had to be totally cleaned out, this is a great opportunity for our whole family to join James in his daily exercises. Josh and I have been talking about it and we really need to take the plunge and go all in. So when I get home on Friday I am joining the gym that is 5 min from my house.

There I said it!!! It is now out in the bloggy land and I hope that you will hold me accountable. In fact I am begging you to hold me accountable. I have had to start taking BP meds because I have let myself go! So these 3 weeks have been a game changer for our whole family

John 13:7- Tornado Outbreak

Jesus answered him, What I do thou knowest not now; but thou shalt understand hereafter. ~ John 13:7

 This week devastation struck my state. It came in the form of over 300 confirmed Tornado in our State of Alabama alone. Here in Alabama tornado are a part of life in. We usually have to duck for cover once or twice a season. This however was different. The outbreak was so wide all over the state. When you felt safe from one you another was right behind it bigger than the first. I was away from home with James here in Birmingham and the rest of my family were in different parts of the state.

I spent most of my day watching the weather. Starting at 5 am when the first tornado sirens went off. I grabbed James and ran down stairs. The storm went North of us but more to come. All day I watch tornado form and hit this state that I love. So many friends lost everything and I mean everything! The picture above is of a friend's home in Huntsville. It was a beautiful brick 2 story home in a neighborhood that as you can see is gone!

At around 5pm we watched live on TV a tornado form in Tuscaloosa. It ripped through the town and was headed for us. the Ronald McDonald house put all the residence in a central hallway. We sat a waited for it to hit. That is the worst part....just waiting for everything to break loose. We waited and I watched the live streaming of the tornado on my smart phone. The Weatherman kept yelling at us to take cover now! Already there!!! And then we heard the tell tell sound of the Tornado. It sounds like a train coming right at you. The building felt like it was breathing. I took James and pushed him under a desk and them laid on top of him. All I could think as  I watch my phone screen was " How am I going to hold on to him? How will we survive something that big?" so many more thoughts went through my head but Wheels on the Bus came out of my mouth. James and the other kids were so scared so I started singing.  What felt like and eternity was only a few minutes. When we were given the all clear to come out, we did. I expected to see damage, but we didnt. We learned that the tornado touched down 4 blocks from us and what we heard was a satellite tornado that never touched the ground in the downtown area. Thank you Jesus!

But as we were happy that we were safe, we quickly realize that many were not. Over 300 people so far have been confirmed dead. The hospital here has had a steady stream of ambulances coming in. They have refrigerator trucks lined outside the hospital because the morgues are so full. Children that were blown away from their mother's arms and were found have been given a number until their families are found. Many havent been claimed yet. A friend of a friend had just given birth 7 weeks ago and she was killed saving the life of her 7 weeks old son. Families without homes. Our entire county without power. Devastation everywhere. 

Please pray for my State and the many families that lost so much. My entire family is safe and our homes were spared.