Sunday, January 31, 2010

Our trip to Missouri !!!!

This Wednesday we leave to go to Columbia, MO, we will stay in the Ronald McDonald house Wednesday evening. Our appointment is Thursday @ 9:30am, we will do a current X-ray and meet Dr. Daniel Hoernscenmeyer, a Pediatric Orthopedic surgeon, spine specialist. We will get Dr. Dan's opinion and plan of treatment for Jeremy's complex spine. I sent him Jeremy's complete spine X-rays history since birth and he's reviewed them. We will travel back after our appointment on Thursday, I'll return to work on Friday and Jeremy will go back to school.

Please pray that we have a safe trip, and for the answers.

Saturday, January 30, 2010

Just when you thought it was safe....

The movie jaws, just when you think it's safe to go back into the water, the scary music starts to play, da da da da, then pops up jaws...This is mine, just when you think it's safe to warm something up in the microwave without really checking it out, scary music plays, da da da da then then pops up Jeremy. Do you know what happens to brand new bottle of Pantene shampoo when stuck in the back of the microwave? you hear an explosion, then you open up the microwave and it smells good but there is shampoo everywhere....Oh yea true story.

Friday, January 29, 2010

"SNOW" klahoma....

They were talking yesterday on the Weather channel about how much snow Oklahoma has received this year and the banner up at the top was title, "SNOW" klahoma which we thought was funny. We have had lot of snow this year. Yesterday at noon in Sapulpa we start with light drizzle, shortly thereafter we start getting sleet, then rain and it continued to switch back and forth all afternoon. I work for OG&E so I know ice on power lines means outages, so when I left for work this morning and could see the trees sagging or heard the cracking of ice on trees major flashback to the 07 Ice storm. This morning our roads were mostly wet, but it started to snow about 8am and it's still snowing and suppose to continue through midnight. These are a few pictures of our Snowklahoma winter wonderland, looking out my door at the church across the street...

Wednesday, January 27, 2010


I am a born Okie and have lived here all my life. I love Oklahoma, the mild winters, summers but also realize we can get the drastic of any season as well.
I am disappointed but decided with the pending not knowing for sure what type of winter mix we were going to get that we would not be traveling to Columbia, MO. I was so excited about seeing Dr. Dan and get some long awaited answers. I was able to schedule Jeremy an appointment for next Thursday, Feb 4. We were leaving at 6am so the trip to the appointment would not had been an issue, we were going to spend the night and head home Friday. If we couldn’t get another appointment sooner than I would have went and stayed in Columbia a few more days. The weather doesn’t scare me and it doesn’t bother me to drive on snow/ice, life does goes on. My car has positive traction, front wheel drive and gets around great but 6 hour drive is a little different.
Oklahoma where the wind comes sweeping or the plain, you never know about ice or snow until May or June…but your doing fine Oklahoma, OK

Tuesday, January 26, 2010

The Miracle boy...

I think I posted this on his blog, if you can't click on it you will have to copy it to your browser, I was cleaning up some off my computer and found this. Each time I watch the video, I am in AWE of GOD, what he did so many times for Jeremy, what he did for me to get me through this. I still cry each time I talk about J's open heart surgery, it will always be emotional. I know his spine surgery is going to be a tough one in our lives.

Sunday, January 24, 2010

Extraordinary Measures

This was an extremely frustrating week and to top it off I was battling a bladder or kidney infection and dealing with Oklahoma Health Care Authority to cover our appointment on Thursday to see Dr. Dan in Columbia, MO. Where we are at now unless there is miracle and the paperwork makes it through the process and I do believe in miracles, I will be paying out of pocket for this doctor appointment & X-rays. This is frustrating to me because of all the red tape that has to go in to getting something approved and without one little piece of the puzzle, J's paperwork sits. I feel very passionately about seeing Dr. Dan. I have been praying GOD show me his plan, is this his way of saying this isn't the place if so I'll surrender but not until I know for sure. I have to keep pushing. It seems like sometimes everything has to be a fight. I have voiced earlier this isn't an elective surgery, years ago it would have been but with his curves being 85 degrees he is going to start suffering health problems, it's going to start affecting his organs, his heart, comprise his lungs they could collapse and it could affect kidney function.

I took off Friday afternoon and went to see the movie, "Extraordinary Measures" The movie was about a family who had 2 children with Pompe disease. Pompe is a metabolic disorder where they can't break down sugar so the body stores it, in the heart, kidneys causing them to get bigger. The life expectancy is 8-13 years. They didn't know if their child would come home from the hospital with major pneumonia, dad looked into his daughter's eyes and gained the strength to keep fighting. The physician they found who had studied Pompe Disease was close to finding a drug that could save their life, he had the theory but didn't have the motivation to get it where it needed to be in clinical. Dad walked out of his job one day to go to find this physician to meet with him, he couldn't get him on the phone. This dad at that meeting created The Pompe foundation and promised to raise $500,000 in a month. I love the conversation between the wife and husband when he came home. Dad, "I promised him we would raise $500 (little pause) thousand" she said is it $500 or a thousand and he said $500,000 and she said are you insane, his reply with the deer in the headlight look, "apparently". Then when they were ready for the research study, they were only going to do infants, so his children would not be a part. Dad lost it, he was desperate and running out of time with his daughter having more than a year and his son less than a year. He tried to steal some of the medicine, but was caught and the physician with the theory although they had their differences along the way but he understood the dad. They went above the VP head and got the children involved in a sibling study but because he went over their head they were furious and told him he blew any chance of his children every receiving the drug. This dad desperation once again not give up was writing a letter of apology, when they fired him. The VP only did this after the Physician who had the theory approached him in a shouting match. He lost his job but it was done so his children could be part of that sibling program. The ending when they did get the medicine, the children who were laughing hysterically they didn't understand but the physician who then called himself Uncle Bobby so he could be there, "said their body is breaking down the sugar this is a good thing" with tears in his eyes. The movie was personal to me, although Jeremy didn't have metabolic disorder the first year we were still checking for something metabollic. I know what it's like to sit in a physician office, be told bad news, this is what your son needs but these are the risk. I know what it's like to wonder if your child is going to snap out of this or is this going to be the illness that takes his life. Some wouldn't understand this dad's desperation through out the movie, but I understand it.

I had such a good time at our Women's retreat and so needed that. It was nice to get to visit with women from our church and hear their testimonies. I hated that I got sick on the way home but again feel it's a bladder or kidney infection. I almost went to an after hour clinic yesterday evening, but there is something about seeing your own physician. I woke up feeling better, felt a little better today but if it's not better tomorrow I will go see Dr. Martin.

Jeremy is going through some sort of clingy phase, he wants me to feed him, hold him and I don't feel good.

Thursday, January 21, 2010


I totally realize that no where in God's word did he promise life would be easy. I am Jeremy's mom and biggest advocate. I have to pursue with my heart until I feel GOD has closed the door or I win.

We are scheduled to see Dr. Dan in Columbia, MO next Thursday for our appointment, he is the other physician we will be seeing about fixing Jeremy's spine. I found him after seeing Dr. Bridwell in St. Louis, MO and just not having a good feel about the whole situation. I found Dr. Dan by going to the Missouri Parent 2 parent who matched me up with another mom who had a child similar to Jeremy and she told me about him and couldn't say enough good about this man. I started my personal research like I always do, what I've read Dr. Dan is a truly compassionate physician. I've talked to his medical assistant, Holly who has been awesome in setting this all up. I sent Jeremy's X-rays to him, he has looked them over and ready to discuss plans. Their hospital social worker got me set up to stay at the Ronald McDonald house when we go for our visit, if they are full she will give me a voucher for a motel. So, this all sounds great, right, so what is my problem? getting Oklahoma medicaid to approve the out of state visit, there is lot of hoops to jump through. We have a caseworker through medicaid who is working above and beyond to get this done, she has a referral letter from our Pediatrician to see Dr. Dan, medical records from our Orthopedic surgeon referring us out, Dr. Phillips who we seen in Tulsa referring us to Dallas-Scotish Rite or Mo. Her next step is to put this all in a packet with a contact person from the University of MO to go to medical review, if approved it then goes to the contract department to get in touch with the person from the University of MO to make the agreement with. When she called the University of MO, to get that information the lady who would do the contract told her they do not accept out of state medicaid. So all this documentation sits because in the eyes of medicaid if they aren't willing to accept their offer there is no sense in doing all of this work. I asked her, can we not go ahead and send this all though, let it go to medical review to get that determination, let contract come up with a cost and make an offer to the University of MO and then let them accept or deny. This is not an option with medicaid. I call Holly in Dr. Dan's office who is his medical assistant, she is going to talk to Dr. Dan to see if he knows someone who might be willing to get it where they will accept the out of state medicaid for Jeremy's case. She says he truly has a passion for these children and wants to help children like Jeremy who are complex. Our other option would be to get with financial services and see after my insurance BCBS pays if they will give us a discount to lower the cost, and we would make payments. This is going to be a fairly expensive surgery. I emailed Holly to see if the contact person from the University of MO, could call our caseworker and tell them they would consider a contract so this could all go through the process, then we could get a determination, and a contract price. There is a good chance with the budget shortfall that OHCA will say this can be done in OKC and not even approve the request. I can see this happening but feel I have a fairly good case to prevent it from happening, plus I'm prepared to battle the cause. I know my Oklahoma State Rep very well, and he knows me and Jeremy, he has also helped me in the past on some insurance issues and finally got BCBS to give me an exact amount they would pay on J's device. I am going to email him tomorrow to see if he can get medicaid to push this through the system to see if we can get the approval and a contract price.
Our appointment is next Thursday and there is a chance this will not happen before that time so I will more than likely be paying the out of pocket for this consultation and it and it being a new year Jeremy hasn't had a doctor visit yet so he's not met his deductible. The thing is this battle is all for the doctor visit, if that is where he has surgery we start this all over, but I feel if we can get it approved for the office visit the surgery won't be this ordeal. This is frustrating to me as I kept BCBS as my primary health insurance for Jeremy, so I pay the monthly premiums and medicaid is secondary and they only have to pay 20% and feel they can do this, I also feel I'm helping them out by keeping BCBS primary. I'm prepared to pay this office visit, but again don't feel I should and this is the approach I'll take with my State Rep to plead on his mercy.

My prayer is, GOD show me if Dr. Dan is the physician we need to see and pursue to do the surgery. I won't know until we meet him, what his plan is and if he's the one. If this is the place it will work out and I will move mountains & fight a bear to make this happen.

Saturday, January 16, 2010

Conversation with Jeremy...

We got up this morning, I fixed Jeremy breakfast sit it on the table with his pedisure and gave him 2 bites with his medicine in it and went to take a shower and start getting ready. Jeremy comes into the bathroom where I'm getting ready and the conversation was, "Jeremy did you eat all your breakfast". Jeremy says"mmmmmmm mmmm YEA". He cracks me up with his mmm, I'm thinking and then his loud Yea. He continues to be more and more verbal. He had a battle last week with not sleeping well, not sure what was going on. I wonder if his body is re-adjusting to normal life. I did a presentation at Grace Church on Wednesday and signed Jeremy up for Gracekids, he did well and wasn't ready to leave when I was. We got to visit several old friends from Happy hands, Al & Judy Pro. We are excited about the new opening of happy hands and can't wait to take Jeremy, it will be fun to run into some teachers he had, as well as some of his classmates.

I am getting super excited about our trip to Columbia, MO to meet Dr. Dan Horcenmyer. I've already got the referral letter to medicaid so I've been talking to the lady on the phone she is getting everything in place for that, my insurance it's no issue as long as they accept BCBS of MO in which they do. I don't know and can't explain the difference as to why I'm excited about seeing Dr. Dan and how I was so apprehensive to see Dr. Bridwell. Dr. Dan has looked at all of Jeremy's X-rays, so when we see him on the 28th we will know what his plans on, what he suggest, surgery, etc. The social worker has everything in place for us to stay at the Ronald McDonald house on the 28th. My mom is going with us to take the trip, the plan is to leave our house at 6am, our appointment is @ 1:40 and I'm planning approximately 7 hours. The GPS says 5 1/2 hours but that will give us time to stop and eat, I will have to stop once on the way down to get gas, plus there will be several stops. We will spend the night then get up Friday morning and leave to come back home.

Tomorrow, we are going to start back to Sunday school. This way Jeremy can also learn to be around his peers, what is acceptable, we are going to start trying him in church, see how long he will sit and go from there. He is out of school Monday so he will be home with the HTS, I think it's suppose to be a very nice day so hopefully for the 1st time in a while he can play outside on his equipment.

Monday, January 11, 2010

I am the child....lengthy, but SO worth the read

A friend posted this on her facebook so I told her I was going to steal it...I think the one that really touches my heart is the child who can't talk, although Jeremy is saying more words, he totally cracks me up with the way he says them, jabbers or sings. I get frustrated but it is more being frustrated with myself for the time I yearn for my son to be normal or frustration with a world who views my son as not being normal. Well someone define normal and not by the world standard's because how normal is this world we live in? I mean by GOD standards, the same GOD who created Jeremy, the same GOD who is the beginning & the end, the first & the last,the alpha and the omega. I have pity but it's for the ones who will never know the true unconditional love or they have forgot that true unconditonal love, you see I can't forget that because I get to experience it daily with Jeremy. When this tired, sleepy little boy wants me to hold him so closely while he falls asleep, he lays his head on my chest and I get to stare down at his sweet little face, press my face to his, kiss his sweet little sleeping cheeks. I ask him for a hug & kiss or Jeremy can mommy have one more hug & kiss and even though he's tired he grants me my wish.

I am the child who cannot talk.
You often pity me, I see it in your eyes.
You wonder how much I am aware of - I see that as well.
I am aware of much - whether you are happy or sad or fearful,
patient or impatient, full of love and desire,
or if you are just doing your duty by me.
I marvel at your frustration, knowing mine to be far greater,
for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times.
I do not gift you with clever conversation, cute remarks to be laughed over and repeated.
I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world about me.
I do not give you rewards as defined by the world's standards -
great strides in development that you can credit yourself.
I do not give you understanding as you know it.

What I give you is so much more valuable - I give you instead opportunities.
Opportunities to discover the depth of your character, not mine;
the depth of your love, your commitment, your patience, your abilities;
the opportunity to explore your spirit more deeply than you imagined possible.
I drive you further than you would ever go on your own,
working harder, seeking answers to your many questions with no answers.
I am the child who cannot talk.

I am the child who cannot walk.
The world seems to pass me by.
You see the longing in my eyes to get out of this chair,
to run and play like other children.
There is much you take for granted.
I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again.
I am dependant on you in these ways.
My gift to you is to make you more aware of your great fortune,
your healthy back and legs, your ability to do for yourself.
Sometimes people appear not to notice me; I always notice them.
I feel not so much envy as desire, desire to stand upright,
to put one foot in front of the other, to be independent.
I give you awareness.
I am the child who cannot walk.

I am the child who is mentally impaired.
I don't learn easily, if you judge me by the world's measuring stick,
what I do know is infinite joy in simple things.
I am not burdened as you are with the strifes and conflicts of a more complicated life.
My gift to you is to grant you the freedom to enjoy things as a child,
to teach you how much your arms around me mean,
to give you love.
I give you the gift of simplicity.
I am the child who is mentally impaired.

I am the disabled child.
I am your teacher.
If you allow me, I will teach you what is really important in life.
I will give you and teach you unconditional love.
I gift you with my innocent trust, my dependency upon you.
I teach you about how precious this life is and about not taking things for granted.
I teach you about forgetting your own needs and desires and dreams.
I teach you giving.
Most of all I teach you hope and faith.
I am the disabled child.

- Author Unknown

Sunday, January 3, 2010

Welcome to Holland, Part 1 & 2...

I remember seeing, "Welcome to Holland" when Jeremy was 2 months old, I was so much in denial that I refused to read it with the thought, "well that isn't going to be us". I don't remember at what point I finally did read it and cried because that was us, even if I didn't want to admit it that was us. Then at some point later I discovered the part 2.

“Welcome to Holland" By Emily Perl Kingsley, 1987

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Welcome to Holland (Part 2)" by Anonymous

I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned.

I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger—the pain and uncertainty. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay.

Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time. I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land.

I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends. Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn't so bad.

I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?

Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift.

I have learned to slow down in ways too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its' tulips, windmills and Rembrandts.

I have come to love Holland and call it Home.

I have become a world traveler and discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.

Yes, over a decade ago I landed in a place I hadn't planned. Yet I am thankful, for this destination has been richer than I could have imagined!

Saturday, January 2, 2010

Welcome the New Year !!!!

I hope everyone has a safe New year eve, and wishes for a blessed New year of 2010. I know 2009 had it's ups and downs for me personally, but that is just life and has nothing to do with the year. GOD tells us in John 16:33, "Do not fear for while you are in this world you will have tribulations, but I have overcame the world" I know I tend to think this world is my home but it's not, it's temporary until Jesus comes to take home his people or takes me home first. I am still blessed beyond words with the trials that have came up. I've voiced finding out about Jeremy's spine progressing, rotating in was not what I wanted out of that physician appointment the day we seen Dr. Anagnost in July, but it is what it is and we are dealing with it.

I reflect back to when this decade started in 2000, the Y2K scare but Jeremy was only 4 months old, there was so much unknown, I didn't know if Jeremy was going to even survive so I welcomed the end of the world so we could go on to heaven and he wouldn't have to deal with what he was facing. I had interviewed our Pediatrician when I was pregnant, Dr. Scott Cyrus, wasn't sure I was going to use him but wanted him to see the baby while he was in the hospital. I knew shortly after Jeremy was born when he came into the room and told us he suspected Jeremy has hydrocephalus he was Jeremy's pediatrician. He's been been beyond totally awesome, when he said don't let Jeremy slip through the cracks, I will do what I can but you do what you can he meant it and has always lived up to that statement. 10 years later there is not a physican that knows Jeremy's total medical history like Dr. Scott Cyrus, he's been an awesome advocate for Jeremy, a sounding board for many things in Jeremy's life for me. 2000 brought on Jeremy undergoing major open heart surgery, although it was so traumatic & , he not only survived but thrived. We struggled getting him to eat more than 2 oz at a feeding, I'll never forget when he was able to start taking a bottle again, he gulped down 8 oz and our Pediatrician came in and I told him and he had the smile of the cat ate the canary, "I told them we needed to fix his heart" and thus he had, I heard the conversations. It also brought into our life our wonderful awesome, ENT, Dr. David Hall who placed tubes in J's ears before his heart surgery, we have followed with him every since, he has done all of J's tubes, removed tonsils and adenoids, done sleep study. I can't count the number of times Jeremy was scheduled for another procedure and Dr. Hall would come over check out Jeremy's ears, clean them out and if he needed tubes place them. 2002 brought on some new struggles, Jeremy's shunt quit working so we got a new shunt, battled for 4 weeks to find out the shunt was infected, Jeremy survived thrived. I fired our Neurosurgeon who in my eyes neglected Jeremy's care, didn't see the signs we had and told me I did too much research and talked to many parents who put fear in me. GOD once again brought me an awesome new one, Dr. John Marouk who has followed Jeremy these past years, for the 1st time a Neurosurgeon treated me like a mom who knew something about her son. During these years, Jeremy learned to roll over, crawl, use some fine motor skills, use a walker (although he hated it). We also during that hospital visit found out that Jeremy's scoliosis had progressed and it was time to do something not sit and watch it, I fired a Pediatric Orthopedic surgeon from OKC, and found the awesome, Dr. Anagnost who put Jeremy in a TSLO brace and followed him for the past 8 years. I'll never forget the day Jeremy started to wear it, I came home put him on the floor and he laid there and wouldn't do anything, I started to cry thinking we are going backwards. I emailed our Pedi and said what good is this brace, My Pedi, like he has said so many times before, "Give Jeremy time, he is hard headed and he will adjust" sure enough Jeremy started walking, started using his walker, graduated to the gait belt. We said good-bye to SoonerStart, our early intervention team in Oklahoma, they were awesome for the 1st 3 years of J's life, they became friends and we still stay in touch with them. They helped give Jeremy the start he needed to get where he is today. 2004 we said good bye to our wonderful awesome friends at Happy Hands and entered the Sapulpa Public school system, J started Kindergarten, he also started walking all by himself that year. We also had a tradegy in our lives and I lost my precious, awesome mother in law, who loved Jeremy so much and knew J's doctors and always prayed for Jeremy. We said good bye to Dr. Say and Dr. Moggandam, geneticist who had followed Jeremy since birth, Dr. Say retired and Dr. Moggandam moved to California. 2005 we finally got a genetic syndrome diagnose of FG syndrome, the awesome people I work with at OG&E put together without me knowing it and donated the money so I could take Jeremy to Salt Lake City, UT to meet Dr. John Optiz. We also got Dr. Michael Kayser, metabolic Geneticist in Tulsa who is just awesome, he follows Jeremy. We found out that Jeremy had a significant change on the L1cam gene which is off of the X q 28 chromonone, blood test showed I had the exact same significant change, but Greenwood clinic doesn't feel that it has anything to do with Jeremy's issues and a fluke it was caught, but we follow with Dr. Kayser to see what else may arise. Jeremy would advance through the grades at school, making slow/steady progress. We said good-bye to Dr. Anagnost and started the search to find the physician, facility to do Jeremy's spinal correction. Dr. A always told me that if and when Jeremy needed surgery he wouldn't be he one to do it, I knew that would happen. I appreciated what he did for us, his visits, treating me like a mom who knew my son, easy to visit with. I didn't plan on having to do this outside of OK. We started getting some behavior therapy through a place called ETL, and GOD blessed us with them in our lives and Matt Cobb our ETL teacher, whose family has became dear people in my life.

I started out the decade, if you put me in front of a group of people to speak I would have done it but would have worried to the point I would be so nervous thinking about it to the point I sometimes have to remind myself it's ok to not always say something, I often times speak before thinking. I've changed as a person, employee, Christian, daughter, sister, friend, I started out 2000 as an Engineering Clerk, Daily Ops Clerk and advocated and promoted to a Scheduler, I had 2 bosses retire during that time, in March I celebrate my 19 years at OGE. I started out being a mentor for SPAN, special parent network, wanting to help other families with what I went through. I worked to build it up in Tulsa so people would know about the program. I was on the starting force of a Family Advisory Council St. Francis Children's, involved in the new building, help coordinate the radio-thon in getting families pre-recorded stories and live interview for the Children's Miracle Network raise money. SPAN merged with Neonatal Parent Network and we became the Oklahoma Family Network, truly statewide and growing in the NE part of Oklahoma which I had worked hard and longed for, we have a NICU coordinator who visits St. Francis, Pediatric oncology coordinator and another NICU coordinator who works on the other hospitals. I am the NE Regional coordinator and my passion continues to be to visit the families who are in the hospital, I know what it's like when you leave the NICU, but then weeks later you are re-admitted, your life has already changed but often times that readmission changes your life even more and you gain some acceptance. I am the co-founder of a metabolic/genetic support group, we just finished our 1st year. We are working on our 2nd year of Tulsa Sibshops, a program I helped to coordinate and lead for the siblings. I left 2 churches and joined Sapulpa Bible Church and have been there for 4 years. I graduated the Oklahoma Partners in Policymaking course, a course that teaches you to partner with your policymakers, learn what people with developmental disabilities deal with. I've doubted my Christianity, questioned my faith, blamed GOD for Jeremy's disabilities, realized this just happens and this is life. This wasn't where I seen myself when we started 2000 with my 4 month old son.