Gross

I have read so many little ditty's titled "you know you are a...." they are usually pretty cute most of the time right on.

Today I felt like writing my own ditty.

This evening we headed out to get dinner at The Olive Garden. We ordered our food, ate some salad and bread sticks, and got our main meal. It was at this time Makenzie was looking a bit bored in her chair so I took her out. That lasted about 3 seconds before I realized she was poopy.

Yeah, well, that was an understatement! It was everywhere. All over her, and her chair. Lovely! A good while later she was cleaned up and we sat back down.

Now.... you know you are a parent of a special needs child and so are your friends when you can sit at the table and laugh while comparing gross, stinky stories, about dirty diapers and not blink an eye!

After dinner we headed home and hung out for a bit before it was time to put Miss Pris to bed. The boys were so cute with her tonight. We started practicing rolling back and forth and that soon turned into full blown wrestling. Makenzie LOVES to be in the middle of all of the action and the boys know just what she likes.

There are so many people that want to treat Makenzie like a China doll. She hates that. She is not going to break. She has 3 brothers and loves every second! Just because Makenzie can't walk don't mean she can't play! They are so good with her!

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Love my kids!

Believe... Prayer Works!

How Green is Your Grass?

Life is not always greener on the other side.

I have spent the last 2 weeks with one of my very best friends, Michelle. One week we spent doing therapy in Phoenix and one week at her home a few hours away. Our lives are VERY different but so much the same. You see her 7 year old son, DJ has Autism. There are many people who have so many ideas and theories about what Autism is and how it is caused. Today I don't much care about any of it because the bottom line is Autism is sad, it is scary, and a huge problem which is not being taken seriously enough.

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I met Michelle over three years ago while in Arizona for HBOT. At first glance DJ looks like a very handsome, normal child. If you take some time to get to know DJ he is still a handsome but far from what the world would consider normal. He can not focus or stay on task. Sometimes the simple task of eating dinner can take hours because he just can not sit still long enough. It doesn't take much for him to become over stimulated at which point he beginning to yell, make weird noises, cover his ears, and bolts. He can talk to you all day about his favorite thing in the whole world.... trains... but can not carry on any other kind of conversation well. I could go on but I think you get the point. DJ is an amazing little boy with a heart of gold. I love that kid with all my heart.

Many times Michelle and I have talked about our kids. Many times I have brought up the fact that at least DJ can walk, talk, and eat. After living with DJ, in his home, I have decided the grass is NOT greener on this side of the fence. It is about the same green as where I am standing. Michelle deals with different issues but they are just as hard. DJ is on a crazy diet because he is allergic to everything. He takes MANY supplements because his body does not absorb nutrients. He is full of toxic medals that require IV celation, and his immune system requires IVIG once every 3 weeks. Michelle has done ABA, RDI, sensory learning, IM, and is now on course to start neuro feedback and ABM. The time and money that goes into all of this is insane!




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We planned our trip so that we could be with DJ on his 7th birthday. Here is his cake made with "no" food. It is pretty much everything free! There is no wheat, soy, lactose, casien, dairy, or eggs. DJ LOVED it! What a treat!

The fight for our kids is the same as is the love, the hope, the guilt, and the fear of the future we have for our children. The emotion, and frustration start in different places but finish on the same line.

Brain injury sucks, Autism Sucks, but man these kids are the strongest human beings I have or probably ever will meet!

Some days it is easy to feel sorry for myself. To feel like life is so hard but life is hard for many people. Walk over to some one elses grass and take a peek.... you will see their grass isn't all that green after all.

Believe... Prayer Works

Sitting Tall

I broke out my camera today. Your welcome....lol

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I plopped Makenzie on the floor to work on sitting  and this is what she did.......






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Photo Sharing - Video Sharing - Photo Printing   She amazes me every day! Makenzie works so hard and yet alway has a smile on her face!

Believe...Prayer Works!

Point of View

I got an e mail this morning that was unexpected but welcome from a friend I have not heard from in a very long time. She shared with me her point of veiw on some things that happened what seems like a life time ago. I very much respected her thoughts and sent her an e-mail back with some of my thoughts and what I felt happened. It was much needed and hopefully she will respect the things I had to say as well.

It got me thinking... (I have been doing a bit to much of that lately).... about the many different relationships we have in our lives. Each and very one is so different.

Everyone has their own point of view and opinions. We all communicate in different ways and are all such different people who see things in life so differently.

This has been something I have dealt with a lot over the last 3 years.  When you have so many people weighing in on your life and the many decisions there are to make it becomes inevitable.

Friends who don't live with special need who don't understand why you are always busy, can't go out, make talk about things that don't make sense to them, and just can't understand why life has become so different.

Doctors ALWAYS have an opinion about EVERY thing and want you to follow every order to a tee. The crazy part is that some doctors share a  different opinion and point of view then other doctors of the same specialty.. I guess that is why the second opinion is so important. It is also never a good idea to bring up bio medical treatment with a western medicine doctor. That is a BAD plan..... ok, ok, to be fair.... I have found a few western medicine doctors that do appreciate bio medical medicine.

I have a great support system when it comes to my family, yet there are still different points of view and opinions.

Parent's of children with special needs share many different ideas on what works and what doesn't. There are many different conditions, treatment options, doctors, and therapy's. Each and every parent deals with this journey in a different way. As well as each child responds differently.

The school system and teachers work in a different world then the rest of the above. They primarily focus on one aspect of children's life.....education. This is ok until you have a child who needs special accommodations. Then  the differences in opinion pour in. They are great people who happen to work in a system that most of the time doesn't work for our kids without a ton of sharing of ideas and opinions.

Some days I feel so overwhelmed. I do my best to hear out every one's point of view and opinion but some days there are to many.

At the end of the day we all do what we believe is best for our family and sanity!  We are the advocates. When it comes to our kids our opinion as their parent is the trump card. For me it is an honor and something I take very seriously.

So we move forward.

We are having a great time. It has been so nice to slow down. To take a break. To think without the crazyness of normal life.

Makenzie is doing well. She is still a little rolly polly but she is also relfuxing a lot, I am frusterated but keep praying. She is not vomiting and is still gaining wieght and that is GREAT! We got in the pool today and she loved it! She moved so much. She chased her brothers all over the place and of course giggled a ton! She busted out laughing this evening when her brother farted which had us all rolling.  Other then the reflux she is WONDERFUL! Praise God!  So proud!

Please pray with me for Makenzie's reflux to disappear. Pray that God would heal her gut. She is so much better then she was 2 years ago. If we could just get over this last hump I would be the happiest mommy EVER! Pray!

Believe... Prayer Works!

Life Lessons

I have seriously been neglecting my camera. Not cool I know.  I am sorry.

Part of the problem is that my keyboard on my computer is broken so getting the pictures onto the blog requires both the iPad and the computer. I found an app that will do both  but I haven't perfected that either. Oh well.

I spent most of today in deep thought and prayer. Reality is HARD. Children dying is hard. A Princess that you know in real life,  meeting Jesus, is even harder.

Every time my daughter coughed, or refluxed, I went to a bad place. The sense of security over how well Makenzie has been doing is gone. Real is scary. Real is REALLY scary and I don't like it.

Today I kept praying that God would give me peace, give Heather peace and protect my girl... and my boys for that matter. I want to say that I whole heartidly trust God's plan but as the human I am, the thought of God's plan involving life without any of my kids makes me want to puke.

I could post some peachy happy post about how great life is....  and really life is VERY good. Makenzie is doing so well but when hard things in life show up it shakes your soul. 

 A friend and I where talking this afternoon. We got to talking about how much in our lives changed after our children suffered brain injuries. So much more then the loss of who our children where and would become. This stuff is so much more far reaching then just "the accident". Some for the better and some really hard.

When Makenzie had her accident I lost my best friend. We had kids the same age. We were pregnant together, we did first birthdays, talked about breastfeeding, potty training, we did play groups and gymnastics together with put kids.

While Makenzie was in the hospital my best friend and a couple other woman picked me up from the hospital to get me out. On the way she told my other friend that she couldn't handle it. I really never spoke to her after that night because she ran away. The fact that bad things happen was something she couldn't accept. It hurt but I have found friendship in many more that can stare reality in the face and stand strong.

It is hard to face the reality that that life is short and unpredictible. Some of us can stand in that reality and be strong for the people in our lives and some run away. I am not running anywhere. It is not a choice for me.

This is a big life lesson for me. This is a lesson in love, strength, trust, compassion, peace, and continued hope. This is a lesson in softening a heart that has become calloused from all of the heartache, tragedy and pain in the last 3 years.

"Do not throw away this confident trust in the Lord, no matter what happens. Remember the great reward it brings you!" (Hebrews 10:35, NLT)

Dear Lord,

How we thank you for the great confidence we can have in you no matter what happens! At those times when our vision becomes clouded by trials and our faith may seem to falter, Lord we ask that you would open our eyes so that we can see you clearly. We know you are at work in our lives and in Heather and Bart's's lives to bring about good things, but the daily struggles can sometimes distract us from that truth. Therefore we ask that you would remind us of the wonderful ways you have worked on our behalf in the past-even things we may have long since forgotten. Lord, we pray that as we reflect on how faithful you have been to us in days gone by, that our confidence and faith for days ahead would be renewed. We thank you that you have reminded us through this verse that having confidence in you brings us great rewards.

In Jesus' Name
 
Believe... Prayer Works! 

I have spent the last 12 hours trying to imagine the pain that Heather and Bart must feel right now. I have thought of their family and little Samantha every waking moment of these past 12 hours. There are NO good words and the tears just fall.

Even though I didn't see this family often I felt like I knew them well. I sat this morning reading past posts on Heather's blog and it felt so unreal. All the while looking at Makenzie thinking about my fear of this same thing happening at any moment.

I want to hug Heather. I want to be there but right now I am so far away and that makes me very sad.

Every hard time in life feels so insignificant. Yesterday I was so irritated with Makenzie's reflux. Today I just wiped it up and moved on making sure I gave her a kiss and a big smile before I walked away.

Samantha was a fighter. All of these special kids are so strong. The thought of her beautiful toothless grin in Heaven is amazing.

I have learned so much from Samatha and her mommy. I will continue to learn from Sam and the beauty of her life. 

I do not know if Heather will be riding in the Courage Classic. I don't know if I could do it but one way or the other Heather is one of the strongest women I have ever known. Everything she has done in support of The Children's Hospital, the place Sam, Makenzie, Max, Cici, and many others have called home at one time or another on top of everything else is stellar.

Samantha will be remembered.

Smile at Jesus for me baby girl and give Him a big kiss from Makenzie!

Fly

Yesterday I spent an hour writing a post basically about how bad I felt my life sucked. Some days it feels like the sky is falling Chicken Little. However today was a much better day. I guess it is all in the frame of mind because nothing has changed between then and now.

Today I did nothing  very little. I am not sure when the last time was I did that but it felt good. We all hung out in the air conditioned house. I played on the floor with my kids. We built a Ferris wheel out of Tinkertoy's, ate lunch, played some video games, rolled around with giggle box Makenzie and just enjoyed life simplified. It was nice.

Makenzie is doing so much better with her rolling. She rolls from right to left by herself with ease almost every time. The opposite way is a bit harder but she is trying. She managed to get onto her belly tonight and instead of rolling over she brought her hand up and lifted her head. WOW!!! She has been walking great with help and is so alert and interactive.

I am really amazed with what this session of ABM has brought. In the midst of the craziness it is hard to see but the changes have been huge. There is always that one small problem that I keep butting up against..... good therapist..... different state..... far away. Oh well! I guess that had never stopped us before.

After a great day I jumped onto the Internet for some good ole social networking. What I found today BROKE MY HEART into many pieces. Today Samantha went to be with Jesus. Today her mommy and daddy are broken hearted. 

Samantha was a beautiful little girl who had amazing parents. The few times I met Sam and her mommy I was in awe of how much joy and happiness surrounded them.  AMAZING! Please pray for Samantha's mommy , Heather and  her daddy.

Heather is a Super Mommy. She has done so much good from those who have helped not only her daughter but also mine and many others. Please consider donating to the Children's Hospital Courage Classic in Samantha's memory!

Heather please know that we are thinking about you guys and praying for peace. Even though we can not be there with you in person we are here! Love ya girl!

Believe... Prayer Works!