Katie's Story

**Disclaimer... this post started out a paragraph, and ended up a novel! I have actually wanted to document Katie's story for a while and the other night, it just all came out. I have decided to break it up in to a few different posts, since it would take so long to read in one sitting...that is if you care to read it. This is just such a huge part of who I am now. I realized the other day that I don't think my family even knows the entire story. So here it is.The other day we had Katie's annual IEP meeting (where we meet with her "team", as in teacher, therapists, nurse, etc. to discuss annual goals for her). Today, as I was doing dishes, I got to thinking about how the meeting went. Then, I started reflecting on the last ten years and how my life took so many twists and turns to lead me to where I am now. There is really no coincidence about it. What there is, is a loving Heavenly Father who knows and loves His children. That is the only explanation I can come up with. Let's back up a few years. The year, 2000. I had just graduated college and was in search of a job. Something where I could possibly put to use my new "Family & Human Development/psychology" degree. I enjoyed being with people with disabilities, so I decided to pursue jobs in that field. I landed a job working at a day facility for adults with all types of disabilities. Within months I became the Program Director (by default. the director had to have a college degree and they needed someone quick to take over that position) of the whole facility. Quite the responsibility for a young 21-year-old (oh, the stories)!! It was at this job I first heard of the acronym "IEP"and started attending these meetings with our clients. It was here that I also learned about the variety of programs available to this group of people (Regional Center, CCS, OT/PT...) and paper work that comes along with having a disability. It was here that I learned to love people of all abilities. It was at this job that I remember thinking: "If I had a child with any sort of challenge, it would be o.k., because I love being around them". The Year 2001. I married my rock (and my major crush). It was also at this time that Bryant realized he could finish his undergrad faster at Cal State Fullerton than in Riverside (where we had originally planned on moving). So after we were married, we began our married life in Fullerton. On our first day in our new ward at church, we just knew we were in the right place. A solid ward with amazing people. PLUS, a huge group of young marrieds. Instant friends and connections. it was awesome!The end of 2002 found us pregnant with our first child (due on the fourth of July 2003)!! And about 10 other girls announced their pregnancy at church around the same time. All of us with our first. How fun to all be pregnant together. But, oh, how I needed a hair cut, and my friend gave me the number to her stylist that she really liked. So I decided to go to her. We began talking she told me that she had a little girl and also told me that her daughter had Spina Bifida. I had never heard of that before, but was extremely interested in it and asked a lot of questions. I was so impressed with her and her attitude. I left with my growing belly and new hair cut and off I went.February 14th 2003 (Valentines day). We went to our first 20-week ultrasound. The technician took a long time and seemed to not want to talk too much. I thought this was typical. We kept asking questions and were so excited to hear what we were going to have. "It's a Girl!" I cried as my insides were secretly screaming "YES!" We went out to dinner to celebrate all sorts of love! Yet, I had a gnawing feeling. Like something did not feel right....

Katie's Story. Part Two.
February 16th 2003- It was a Sunday night. We were on our way to a fireside ( church meeting). I was in the kitchen when the phone rang. It was my nurse practitioner. I just knew something was not right since she was calling on a Sunday night. She told me there were some "findings on the Ultrasound" and she was on-call at the hospital and wanted to be the one to tell me. I asked her what they were and she said she was unsure. But that the baby’s measurements were really off and that the ventricles in her brain were enlarged. She said it could be water on the brain or some sort of chromosome problem and wanted me to get further testing. It was at this moment where my uneasy feeling started to make sense. I remember hanging up and leaning over the counter and sobbing. Bryant came up behind me and just held me, he quietly waited until I could talk and explain to him what I had just heard. That night we went over to our home teachers house (also our super good friends James & Carrie Rhodes). Bryant and our home teachers gave me one of the most powerful Priesthood Blessings  (a very special prayer) I have ever had. Much of which is too sacred to share. Here is what I wrote in my journal that night: "After the blessing, I felt great peace and knew if I put my faith in the Lord, I will be able to handle what comes our way." It was so true. When I would pray and keep my thoughts focused, I would feel complete comfort and peace. For the rest of the pregnancy we would do whatever we could to stay close to the spirit & hold on to the comfort it gave.
February 25, 2003 -It was a rainy morning. We spent the day at the hospital for more testing. For some reason, the first thing we did was meet with the genetic counselor (and medical team) to go over the findings of the first ultrasound. For an hour we sat in this little room while they told us that our baby had "serious complications." That she would "probably be severely retarded and had a chance of not even surviving birth." I will never forget my feelings as I sat in that room. As the doctors spoke it was as if there was a protective shield around me flooding me with peace. I remember a strong feeling that ‘yes’, in deed there were some complications, but they did not have her diagnosis correct…yet. In fact, at one point, I distinctly remember the doctor stopped talking, looked me in the eyes and asked: "Do you understand what we are saying?" (Implying the seriousness of the situation). I said I did. I think they were confused by the calmness we had (to be honest, looking back, I am still in awe and so thankful for that blanket of peace). After the meeting, I excused myself and went into the bathroom. I needed some time to be alone and gather my thoughts. I vividly remember standing there and thinking about how I always wanted to be a mother and that now I was being told that I might only have this baby for a few moments on earth. I took a few deep breaths, tried to stay calm and hold on to that peace. Then I walked out and went to wait for more testing. I later learned at that time my mom (who had come with us for added support that day) had to walk out of the hospital, call her mom and have a good breakdown. She was not only worried for the baby, but was also worried for her baby (me). I had no idea this took place because when she came back she was cool as a cucumber, trying desperately to stay strong for Bryant and I. I was so grateful for her strength and support, helping us get through that day. Meanwhile, Bryant was just taking it all in, very quietly as he felt of the peace as well. That afternoon we met with a specialized radiologist for a level II ultrasound.Here is what my journal reads: "After at least an hour of pictures and long stares at the monitor, he finally stopped and very clinically told us the diagnosis of our little girl. She had a severe form of "Spina Bifida". Instantly my thoughts went to the lady that did my hair a few months prior. I remember seeing pictures of her beautiful daughter, who seemed so happy and full of life. FULL OF LIFE!!My journal reads: "I was actually happy and rejoicing when the doctor told us the diagnosis! Just two hours earlier they told me this little life I had inside me might not even live until birth!" (little trips like this one to Sedona Arizona would help to keep our mind off the worry. I was about 6 months pregnant here)

"God did not deal you a good hand" Katie's Story. Part 3
April 2003- We continued to learn and prepare as much as we could for her arrival. It did take some time to accept that I would not be able to hold my baby after she was born. I also had to process that we would not be able to take her home with us and she would start her life off with a major surgery.During this time I would have good days and bad days.I remember the beach being particularly hard for me. I recall going to my grandparents beach house a few weeks after we had learned her diagnosis. The beach has always been my happy place, but on this day as I watched the children run around the sand and in and out of the waves, my heart could not help but ache. With our research we had learned that often children with spina bifida (especially where her lesion was located L5-S2) had paralysis of the legs and feet. I worried how it would be when we would go to the beach and she would see all the other children running around. How much would that hurt her? How bad would my heart break during those times? Would I be able to handle it? These were the types of situations and questions that would arise during those months prior to her birth. A lot of "what if's".On the bad days, I would go to my knees and ask for the peace to return. My journal from this time reads: "Lately I have been feeling this sweet spirit and peace around me. At first, I did not understand what it was, but one morning, it hit me, this is her spirit that I am feeling. What an amazing experience! One that I have never had. I sense sweetness about this little girl. I feel blessed to be her mother."May 2007- We had a doctor’s appointment (one of many to monitor the fluid on her brain). This one was with a "specialist" up in L.A. We were reviewing the results of this test, when Bryant said something along the lines of "Isn't it a positive thing that it occurred lower on her back rather than higher?"I will never forget the look on her face and what she said next.She stopped.Looked up at us and said: "DON'T YOU GET IT? GOD DID NOT DEAL YOU A GOOD HAND!"

The day that forever changed my life. Katie's story Part 4
By the end of June I had been given generous baby showers, had a home full of baby items and a HUGE stomach. I was ready to start the adventure of motherhood.On the morning of June 20th (after going into labor two weeks earlier than planned), I was wheeled into the operating room where my life from that moment on would be forever changed.They started the c-section and within minutes we heard a little cry. Bryant quickly stood up, looked over the blue sheet and saw our Katie for the first time. We were both crying tears of joy. The doctor asked Bryant if he would like to cut the cord and he jumped at the opportunity to get a closer look at our sweet baby. After a few minutes he came back to my side to report how beautiful she was. She was only in the O.R. a short time, as they had to hurry and wheel her off to the intensive care unit to prepare for surgery. I remember them quickly wheeling her past me, but my eyes were full of tears and my glasses were crooked (having my arms strapped down did not help the situation), so I did not get a good look.I remember while I was in the recovery room having this wave of complete euphoria come over me, a happiness I had never experienced before. Some say it's hormones, but I say it's the pure joy of bringing a new child into this world.A few hours after her birth she had her first surgery.
This one was to close her back where the spinal cord was being exposed. The surgery went fairly well. However, when the doctor came in to talk to us, he said that the nerve damage was worse than they originally thought. He then said, she would never be able to walk. When he said those words, once again the peace came as well as a feeling like his words were not true. I was not even phased by what he said. A very humbling experience to look back on. You would imagine if you were just told that your child would not have the use of her legs and never be able to walk that it would be a bit traumatic. But not one tear. It was such a miracle to be blessed with that peace.About 24 hours after her birth, I was able to go to the NICU where I saw my new baby for the first time. She was beautiful and has such sweetness about her, that I recognized from the pregnancy. She was still recovering from her surgery and had tubes and IV’s in her body, but when I started to talk to her she responded right away to my voice.I wanted so badly to just pick her up and hold her in my arms, but I knew that I would have to wait. I had been told earlier that I would probably have to wait at least a few days until I would be able to hold her. That was tough.However, Katie seemed to recover so quickly. Her tubes were removed the day after surgery and by the second day she was responding so well that when I was visiting her, the nurse said to me, “would you like to hold your baby now?” I just cried and whispered “yes”. I honestly will never forget the feeling of holding Katie for the first time. My dreams of becoming a mom had come true. I was a mother. I was now responsible for this little life. That can be an overwhelming thought sometimes.It has now been close to six years since that day I held Katie in my arms for the first time. I always say that motherhood can be a roller coaster of emotions and sometimes that ride can start from day one. I felt like I was prepared for the birth of Katie and what was to come, but no one could prepare me for the love that I have for her.I feel so blessed to be Katie’s mother. I find it a privilege of living with a miracle. Within three short years she was walking with the help of braces and a walker. A task that we had been told would be impossible.I will never say that this is an easy road to go down. We have hard days. Some harder than others. Like the day we found out Katie's bladder and kidneys were having complications and we'd have to start cathing every four hours (I had just given birth to Ella and now had two babies. I remember wondering if I could really do this and handle it), a task that we continue to do each and every day (one in which she will eventually learn to do herself for the rest of her life, or until science comes up with a new procedure).I would never wish for anyone to experience having to hand your child over to a doctor as he takes them away to the operating room. We have had to do that a handful of times and each time is just as hard as the first. At 14 months when she went in for hip and pelvis surgery, leaving her in a body cast for 3 months. Then again at 18 months when they placed a shunt in her head to help drain the excess spinal fluid that was building up on her brain (that was the hardest and most scariest time of my life). Last, a surgery to remove the hardware from her hips and at the same time they did a minor surgery on her ankle.These past six years have been life changing to say the least. We have spent many hours at doctors and therapists and in doing so have met some amazing people with courageous stories themselves. We have been put in a world that not all get to experience. A world where patience is tested, where miracles are witnessed and strength is gained.To the doctor that said: “God did not deal you a good hand.” My response will forever be: “No, He dealt me a GREAT hand.”

In conclusion
It feels so nice to finally have the story all written out and shared. I also just need to say that there are so many other mothers out there that are my hero's, they do so much more than I ever will do. I always say that I'll take Spina Bifida any day and continue to feel blessed for that diagnosis. Sometimes people will say to me "I don't know how you do it?" And there are a few answers to that question. The first is you just do it because you have to. It comes naturally because it's your child. Second, and most important the Lord loves His children, but I know he holds a special place in his heart to the ones that he sends down with "extras". He seems to always be picking us up and moving us to be at the right places at the right times in her life (that's a whole other chapter in this story). Third, we have a WONDERFUL support system. I have a husband who is patient, kind and helpful. Every morning he wakes up a few minutes earlier to help me with the kids and to cath Katie. Also, we both have amazing parents, siblings & in-laws who are so helpful and supportive. I think we'd loose it without them. Fourth, our friends. We've got awesome ones. She has so many cheerleaders giving her love and encouraging words and that means the world to us!