Saturday, September 9, 2017

The honest truth

One of my goals this year has been to get back into writing my feelings and giving myself an outlet to share. Sharing has always been very therapeutic for me. I makes me feel like I might be helping another mother who feels like me and alone. Maybe knowing someone else is not perfect will make her survive the day.
I have been going back and looking at former blog posts, and I found an unpublished post. It is raw and I don’t recognize that woman’s voice. Yet it is me. That person still lives inside me fighting me everyday. She is the demon of depression and anxiety. She is that little voice on dark days that tells me I am not enough. She is the woman that tried to kill me 2 years ago. 
Two years ago I had a mental breakdown. They gave it a much nicer name, caregiver burnout. No matter how you clean it up, it was messy. I was a mess. I was lost in my depression. For 8 years I had held myself together with pure grit and will. I thought I was being tough. I mean, mothers of disabled children are supposed to be a special breed, right. God “chose” us as special parents of these special children, right? Nope, I was just MaryEllen. Full of the same stuff and guts as any other mother. I wont lie, I found a sort of strength in people looking up to me as this pillar of my local special needs community. I guess arrogance was a way I could hide the bubbling disaster that was beginning to spill out. My slip was starting to show as my grandmother used to say. ( I am a southern girl so let me translate. I was beginning to fall apart).
I started slowly . I never dealt with the guilt and post traumatic anxiety I had over my son’s birth. I felt as though my body and therefore me failed him. I swallowed that down and told myself to get over it, but it never went away. I threw myself in to my son’s care. Researching and taking him to every possible physical and occupational therapy I could find.  If I could only fix him, I could fix myself, or at least that is what I told myself. Just one of the many lies I told myself. Years went by and my self-care became less and less. I had happy times but in the deep recesses of my mind that woman that was trying to swallow me whole grew louder. Finally the day came that I broke. My body had enough. If I wasn’t going to take care of myself willingly, my body was going to force me. It shut down.
It felt like I was going to die. I lost sense with reality and spent a week in the hospital because of it. Even during the breakdown I tried to control what people were told.  At first the hospital thought I was having a stroke, so that is the narrative I let stay out there. The truth was, I had a mental breakdown. Pure and simple. Today as I sit here I find NO shame in it, but 2 years ago all I could feel was the shame of it. I look back and see that I was suicidal and lucky to be here today. I owe that to my husband. He supported me and never once made me feel like I wasn’t going to make it through the day, or that he was ashamed  of me. I did make it. I am here today and I feel the need to finally share this moment in time.  At the time I couldn’t bring myself to hit publish, but it holds no power over me now. The following is the unpublished post….
If you have every read this blog, you know that I am pretty open about my life as a mom.
I was open about the years of infertility.
I was open about having a preemie.
I was open about having a child diagnosed with Cerebral Palsy.
Sharing about this time of my life has left me feeling like someone has removed all my skin and I am just raw and exposed for everyone to see. Every nerve is sensitive. There have been many times that I have regretted making that post. I have wished that I could pull it back from cyber space. But I cant and now I have to face what I have been fearing.  ME.
I honestly don’t know how I am right now. My answer if you ask me, is that I think I am getting better everyday. I might say fine. But sitting here in front of this computer, I feel relieved that this day is over. I look forward to bedtime. I look forward to being able to check off another day and be proud that I was able to function, or at least pretend to. Right now functioning is my goal.  Making sure that my children are taken care of , homeschooling gets done. It is so hard to share these thoughts. I have written several sentences and erased them because they are too raw to expose.
I WANT everything to go back to normal. I WANT to find my joy. I know that I will. It will just take time.
I think for me it is like this dam has been opened up and everything I have been holding in for 8 years, is coming out. The guilt I have over James’s birth injury. Those are feelings that haunt me and I am being forced to face them. They have crept into every part of my life and left a mark. Knowing that this is my life forever. I will always be a caregiver. Of course my goal is for James to be an independent as possible . Knowing it was my fault. I am so ashamed that I failed him.
I have read this entry from that time over and over. It makes me feel proud of where I am today. It makes me feel victorious that I didn’t allow that woman’s voice to win. I am not saying that everything is perfect, but I have learned to recognize signs that I am slipping back into those dangerous ways. I am in counseling and getting help with medications. I can share that these days. Two years ago I would have never shared that I was on anti depression and anti anxiety medications. But I am, and I am alive because of them. It has nothing to do with my Faith or not praying enough. I needed help. I couldn’t then and can’t now “do it all”. What I CAN do is share with you. I can tell you that there is hope and help. Shame has no part to play. My recovery from that woman has been slow. I can see that I have named her voice and now her voice isn’t a stranger to me. Her name is depression and anxiety and I have a plan of action that moves me forward.  

Wednesday, September 30, 2015

Being Real and Raw

So this is a post that I never planned on writing or sharing outside my family. The reason for that was that I felt embarrassed and ashamed. I grew up being told to "rub some dirt on it" literally and emotionally. Now don't get me wrong my parents were loving and always there for us, but when you grow up with a football coach there is a certain toughness expected. Some may say that this is my airing my dirty laundry, but I think this issue is swept under the rug and that makes people feel shame. I won't feel shame anymore

I was hospitalized for and emotional breakdown.

There it is out and said. They call is care giver  burnout. For me it began weeks earlier, I had been short with my husband and becoming angry over the silliest things. I didn't recognize that these things were more than just our  "normal" stress of life. Last Sunday, I became dizzy, I couldn't stay awake and I was showing signs of a stroke. I went in to the hospital and they thought  I was having a stroke. Every test run, all clear. I began to be confused and not even know that I was in the hospital for myself. I was convinced that James had been hospitalized . It was terrifying. It was also embarrassing to be told that you were not making sense. It scared us all.

As that day and the next day went by, it was clear that my brain and body had just had all it could take. It was protecting me by forcing me to stop. I don't remember all of the time during those days honestly. I was told that I was talking out of my head trying to find James. I do remember feeling so scared that I wasn't being told that James was hospitalized. The panic attacks were horrible, and still are (but getting better). Behavioral Health and my family doctors wanted me to go inpatient, but it was decided that being separated from the children would cause more stress. So I agreed to come home as long as family and friends were here to help me. It has taken but until Tuesday of this week to even begin to feel like myself. But I can happily say that I can see the inch of daylight under the door.

Being home has not been easy either. I have had moments were I have snapped at my family who are helping, and the husband that loves me. I am so thankful that the people that stayed with me understood that I was hurting and loved me through it. Sunday School and friends have brought meals and held me together ( I owe some serious lunch dates to many). But not everyone has stood by me, and I may even loose friends because of this post. I feel sharing this is more important that my pride. People think that I am some sort of superwoman. I have been the rock that everyone has broken themselves against for so long. It has scared some that I am not as "strong" as they thought I was. Yesterday someone I loved told me that I had brought all this on myself because I never ask for help and that means I am less. They told me that I am weak because I have gotten to where I needed this help. They told me I was unfit. They kicked me when I was down.  But God has taught me something.....

Everything is used for good.

About a month ago, I was crying out to to God to help me understand my son. I didn't understand how his anxiety and panic attacks could cause him to be a different child in a split second. I didn't understand how he could lash out and be so angry or obsess over one thing for days. I begged God to give me a way to understand. I truly feel that God allowed me to break so that I could understand my son. Yesterday was a stressful day for our family. He witnesses someone he loved say and act in a way that scared him. That caused James to have panic attacks all day. As I was holding him in the quite of his room and he was screaming and crying at the top of his lungs, God spoke to me. Softly and quietly He said, This is why. You needed to feel it to understand it.

The peace that filled me what indescribable. It didn't mean that I was "fixed" and it didn't mean that James was "fixed" ( even though he did fall asleep in my arms as we prayed) What it did mean, was that I found His peace in my darkest time. I had been looking for people to make me feel better. I had forgotten that God promised to never leave me, even in the storm and even when I couldn't see Him. God gave me this gift of pain.

I know now that I DO have to take better care of myself physically ans mentally. I have to allow others in and be ok with things not always being done how I do them. I have to let go. Because if I don't learn to do this for myself, how will I be able to teach James and RJ.

This is not a weakness. This is not shameful and I will no longer be ashamed. Instead I have decided to share and show everyone that God allows us to breaks sometimes and it doesn't mean that He isn't there. I means that he is trying to teach and show us something, we just have to be willing to not be prideful and look for it.

Saturday, August 29, 2015

RJ is ONE!!

Im not sure how a year goes by so fast but this one did. Today Robert Jerome officially turned one year old. He is such a ray of sunshine in this family. We all truly adore him. His big brother the most. They are so perfect for each other. James adores and protect him and RJ spurs James to try new things.

Our adoption story is pretty unique and we are so blessed that it happened to us. I have enjoyed our little surprise baby and cant wait for this new year to unfold. I took him to my studio today for some picture fun. Ill let you enjoy his cute face now :-)

Sunday, August 23, 2015

Stay-Cation 2015 and Birthday

This was a very bust week in our house. Josh and I have been planning to take one of his vacation weeks and be home. He has not stayed a full week at home since James was born. So a Stay-Cation was needed, and it was wonderful. We planned it to go along with our towns Restaurant week since we are foodies. We ate and played and then ate some more.

We are started off the week with a bang. We had RJ's baby dedication and birthday party on Sunday. The party sort of grew on me and final total was 45 guests!! But everyone had a wonder time. Josh made his famous BBQ . the kids swam and James jumped himself silly in the moonbounce. RJ didnt quite know what to think of everyone but he sure enjoyed the cake.

The theme was hot air balloons. Since we first learned that we were going to be adopting RJ, hot air balloons have been his symbol. They make me think of the verse in James 1:17 Every good and perfect gift comes from above....  We have used that Has RJ's life verse and during his baby dedication our church read it to him. It was really special for us and I hope it will be for him one day.
The pictures above is my sweet baby RJ's Baby Dedication portrait I took in our backyard. Isnt he beautiful!!
The boys have enjoyed having daddy home and so have I. Tomorrow ( monday) will be a sad day as we go back to the real world . This will also be our last day of "summer" vacation. Sept 1st starts our homeschool year! I cant wait to get started officially. We are following the relaxed/unschooling method as we learn what works for James and our family.

Below are just some random pictures I took with my phone this week that I want to remember. I have recently become interested in hummingbirds and this little guy was my first to come visit my new feeder.

I LOVe putting things to together ( no really I do)

 James got a new haircut over the week. And he looks so grown!!

Baby boy has the CUTEST curls and I dont think I will ever be able to bring myself to cut them!!

Thanks for reading my randomness :-)

Wednesday, July 15, 2015

Coming back to blogging

Hello again......

Well I  have gone back and forth with what to do with this blog for awhile now. I finally realized that this is my safe place. I need a place to put my thoughts and feelings. I need a release and this is the best place for it. Facebook and Instagram and fun and all but I seem to get into trouble more often than not. This blog is something that people have to want to come and read. It isnt just in their news feed. So here I am.

This year past year has been full of BIG changes for our family, and this coming up year will be no different. We are always on the go and have something going on. Im going to try my best to wrap it all up into one post so I can just move on to blogging about our lives again,

Last year....
Our family was blessed beyond measure with this little guy. We got the privilege of seeing him come into this world and he has never been without us. This is little guy has healed placed in my heart that I never knew were broken. His adoption was a surprise to use but not to God. We only had 4 weeks to get ready for him and he is just wonderful. I cant believe it but we are about to celebrate his 1st birthday in just a few weeks. It makes me so very sad that this tiny baby stage goes by so fast. We have soaked him in and James is just the best big brother. He is crazy about RJ just like we all are.

James has had some really big changes this year as well. Public school was not the right place for James for many reasons. His pre-k and kindergarten years were really good. He has ups and downs like all kids but the difference is, the people around him had high expectations for him. We didnt have that going into his first grade and because of that he did not thrive. In fact he lost a lot of skills physically and academically. I struggle with a lot of hard feelings with that school and the administration, but that wont help James. I  am sure one day when Im ready to write it all down, I will share but right now the wound is still fresh.

We move forward! James will be home-schooled and I am finally feeling excited about it. My plan for this blog is to be a place to share our homeschooling journey. I am discovering that there is little to NO resources about homeschooling a child with multiple disabilities. James is a complicated little guy but what kid isnt. He is smart and has the ability to succeed in this world, if given the chance. I know that it wont always be rosy, Lord knows we are familiar with this sensation. Like always, I plan on sharing the good with the bad. I hope that someone that is in the same situation, will fine support. 

Our family has moved to a new home. With the addition of another child, we needed more space very badly. I loved our little home. With all the medical equipment and baby toys, we just ran out of room. God always provides though. We were able to find the perfect house for our family very quickly. It has the space we need and even has a pool. It is wonderful to have a place for James to get independent physical exercise. He is a fish!

We have had a few set backs this year. With the emotional toll that school took on James, we have struggled to bring him back. The stress and anxiety he experienced has made him very much against learning of any kind. We have a lot of work to build back the confidence that was so shattered. We are working with a psychologist and psychiatrist to help James be able to deal with his anxiety disorder along with his physical limitations caused by his dystonia and CP. He will get there and we are going to provide whatever he needs to be the best James he can be.

Physically James has reached a stage where we are waiting on his desire to be more independent. As the years move along, we have learned that pushing our wants and desires on James, only causes everyone frustration. James has to want it for it to be something that is successful. And I no longer want to be the Drill Sargent  in his life. I want our relationship to be about me lifting him up and being a cheerleader not making him feel like he is never enough. I think I fell into that trap to some degree. I found myself being happy for physical milestones and then instantly thinking of the next one and how we were going to accomplish it. In that process, I taught James that he was never enough. I wont do that anymore. If James never takes an independent step, I want him to know without a doubt that I think he is awesome. Of course I would love to see him be independent but only because I know that certain things in life will be easier if he does. But it isnt my life, this is James's life and I have to let him live it. I am Mamma and my job is to build him up and be his soft place to fall in this cruel world. So I will be patient and allow James to discover how he needs to navigate this world physically. We do a small amount of structured PT and that is done in the water because he likes it. We do continue to do our yearly intensive physical therapy because that can be done in a camp like way through play. 

Those are the 2015 highlights. I hope those of you that still read blogs enjoyed this little update and continue to follow us.
 * Photo credits Bookout Studio for first 3 images on post

Wednesday, October 31, 2012

Pirate Tricked Walker

When Life gives you lemons...Make a Pirate Ship!!! I am always trying to do things to make James walker look non medical and of course COOL! So this Halloween I decided to transform his walker as well. James was a happy man and very excited to show all his friends.

How to: Seriously I am NOT a crafter. I come up with ideas ok but the execution isnt usually very good LOL. This costume is totally homemade. 
Ship: I got a tri fold presentation board from Hobby Lobby. ( the kind that kids make school project out of) and I laid the middle section brown side up on top of the Kaye Walker. If you slide it back past the Pelvic Prompts ( or if you dont have those past the top cross-bar ) it will sit perfectly on the wheel housings and the side cross bars that run under the handles.
 I then cut out the top of the board so that James can stand just like normal and use the walker normally. Make sure you leave about an inch and half on the sides so that it will still sit on the side cross bar. I then poked holes with a screw drive on either side of the wheel bars and ties some twine. I wanted his teachers have an easy way to remove it if needed.
 I used a poster board and wooden dowel rod ,that I zip tied to the last cross bar in the back, for the sail
I had a piece of red and white stripped fabric that I glued to the poster board. NOTE this makes the poster board heavier so you will need to put some tape on the dowel rod to hold the sail in place.
I then printed out some clip art port hole and anchors for decorations. I colored them and glued them on.
The Pirate costume: REALLY simple. James needed to be able to walk normally and not be hindered by a bulk costume. So I cut off the lower 1/4 of an old pair of jeans. I make them have jagged edges. I then tied some of the red and white fabric that I used on the ship to a belt loop. His shirt is just a striped t shirt and a black vest. for trick or treating we will add some pirate make up :-)

Saturday, July 28, 2012

He is James FIRST!!

I read an article from another blog mom that talked about how her children are having to deal with questions about being adopted into a multi-racial family. It got me thinking about our journey and the things that people say to and about children with different physical abilities. It made me want to share my thoughts on what it is like to be on the this side of the story.

Before James, I used to think that this world was pretty accepting of the special needs population. I saw handicap stalls everywhere and there were always those special blue parking spots at every business with a ramp. What else could they need, right? Little did I know that God had big eye opening life experiences in store for me when James was born. See, when I look at James I see an awesome, funny, smart, handsome little 4 year old. He just so happens to move differently than other 4 year old children but it certainly doesn't define who James is.

In college I took a child development class for my teaching degree, and one day we had a guest speaker that came in to talk about "Child-First Speech" At the time I remember thinking that this was silly. What did it matter if I said "That is the child with cerebral palsy" instead of "That is the cerebral palsy child"   I mean that is just arguing semantics right? Are the parents or child really going to feel different if I change the wording around? Well, I am here to tell  you it DOES matter and I DO notice. I am not saying that everyone that uses a diagnosis to describe someone is being intentionally rude. And for that person it is a once in a while thing. They might see someone with a different physical ability and use the disability to describe who they are talking about and then move on. But when you are on the other end of the descriptor and it is your child that is being described over and over by such a surface and small part of who they are it gets old really quick.

Take me physically for instance. I am a big girl and could certainly stand to lose weight. I know that when people describe me to someone they are going to describe my size as well. But do you think anyone would go to my mother and say "Oh, you are the mother of that fat girl". No! of course not. They would use my name or some other describing feature about what I do for a living or maybe my personality. So then why is it that people feel it is perfectly ok to come up to me and say " Oh, you are the mother to that little CP kid" I get that at LEAST 3 times a week...usually more. Like CP is all that James is or will ever be.

Right now James doesnt notice, but I do. Right now James doesnt see himself as "different". And I hope to keep it that way for as long as possible. So why would a parent allow a child to come up and ask him or me "What is wrong with you?" or "What is wrong with his legs?" When did it get ok to ask such personal and medical questions??? I have even had parents tell me that that they encourage their children to ask and that they dont see anything wrong with it. My response to that is this..... I totally agree that children are  naturally  and innocently curious about things that are different from what they are used to. Here is where we differ of philosophies.  It is the parents role  to educate children that we are ALL different and it different doesnt equal wrong. It is NOT my job to educate your children about what is different about my child. If they have questions, then you should answer those in the privacy of your own home. You should stop your children from asking those personal questions and redirect them to more appropriate questions.  Just like I will do with my son when I explain that sometimes people are rude, but we still need to be polite and just tell them that you dont feel comfortable answering such a private question.

I guess I look at it as just simple manners. You wouldnt start asking another mother within the first 5 mins  you meet them personal and medical questions about there "typical" child, so dont do it to mine either. Just because James has to wear his difference where everyone can see it, doesnt take away his right to privacy. It is not ok to walk up to a complete stranger and the first question be "Hi, what is wrong with him?" Honestly, I dont ever mind people asking about James and how he is doing. I love sharing how amazing he is. But that is not ALL James is. CP is a part of his life and yes, it has altered his path a great deal, but that doesnt mean that he is any less of a human being because of it. I love to share his progress but I also want to talk about WHO James is. I want to share that he learned to read a new sight words today or that he got a cute new haircut. I want to talk about the funny things he says. I dont want  to have to give a medical laundry list to everyone we bump into, just because they are curious.

So life lesson time here... When you bump into someone with a child that is "different" be a model for your children and instead of zooming in on what is different between your child and their child. See the Child First and start talking about how they are alike. ( See that class WAS useful) Your children will learn how to be accepting of my child by how YOU interact with him.  We are just mothers with children...just like you. We have more in common than we have differences I promise.