Our little family began in November of 1997. That is when Bryan and I were sealed for time and all eternity in the Boise LDS Temple. At the time we were living in Coeur d'Alene, Idaho, but then moved to Post Falls, then Hayden, and finally Ogden, Utah in October of 2000. Bryan attended Weber State, taking classes to prepare him for a career in Radiology. I was an optician at Mountain View Eye Center. During this time we were desperately trying to start a family. Five years after we got married, we decided to adopt. We put our papers in, and three weeks later we found out we were going to be the parents of a beautiful son, due in two months. When we met the birth family, we knew this was always God's plan. We fell in love with them instantly. Felt like we had always known them. A moment I'll always remember was looking at the beautiful birth mother and seeing her adorable pregnant tummy. I was amazed that my son was there with us, all snuggled up, listening to everything we were saying. It was a beautiful moment.
Two months later, while I was adjusting someone's glasses at work, I got the call. My son was here! Of course, I started crying immediately. I was finally a mommy, and Bryan a daddy. We had waited so long for this. So long.
The moment he was placed in my arms, I knew Conner was unlike any other child. It was instantly apparent that Conner was a very old spirit put on this earth to teach us all. I didn't know what or when, but I knew he was going to accomplish so much during his life.
As all of you know from reading Conner's story, Conner was never an easy baby. Bryan and I both knew that there was something wrong even before he was diagnosed with epilepsy. Mother's intuition is very real. Though I so wanted to be wrong.
When Conner was six weeks old, I got pregnant with our daughter Katie. Boy were we surprised. Nothing like going to an OB appointment one month pregnant and carrying a ten week old baby. It was great! You should have seen the snickers we were getting in that office. Unforgetable!
Katie is truly our little miracle. Not only because we tried so long to conceive, but because she survived. While in my last months of pregnancy with her, Conner was in the hospital, admitted in ICU several times a week. Of course I wouldn't leave his side, so I was forced to sleep in a rocking chair. No extra beds were aloud in the room. They just didn't fit. Conner cried most of the time. I even tried sleeping in the crib with him. He was hooked up to many machines and his cords wouldn't reach to my chair. Nothing like cramming an 8mo. pregnant mom and baby into a little crib. It was a sight!
Obviously, we had a lot of stresses, and it was taking it's toll on my body. I developed toxemia. When Katie was born, she wasn't breathing, her cord was the size of a pinky, and the placenta was shriveled and grey. I remember repeatedly asking if she was okay, and no one would answer me. When they ran her out of the room five minutes later, she still hadn't taken a breath. I laid there quietly in shock, thinking that my beautiful daughter was gone. At the time, Conner was a floor above me in the Peds Unit. Oh, and did I mention, this was Christmas Eve? They pumped me full of drugs and I fell asleep. Twelve hours later I was awaken by a nurse, telling me that my baby needed to eat. Katie was still here with us. Truly a Christmas miracle. I found out later from my OB doc that if she had been born one day later, she would have been gone even before I delivered her. Gives me chills even now just thinking back to that day. Katie was in the hospital five days, and then we took her home. She was a fighter. Thank goodness for that.
A lot of time has gone by. Lots of events have taken place in that time. Before Katie was born, we moved back to Hayden, Idaho. In August of 2005, right after finding out that we were expecting another child, my forty-eight year old mother had a massive stroke. She was in the hospital for a month. She couldn't walk, speak, or even feed herself. My mother was the only one working. My step-father was twenty-six years older and had been retired for quite sometime. My mother ran everything in that household, so after her stroke, I was forced to take over. I did everything from bills to sorting pills for my step-father. He had no idea how to even take care of himself, let alone someone with special needs. With no income other than his retirement, they lost everything. There vehicles were repossessed. We bought back their least expensive vehicle for them so my mom could get to therapy. My parents ended up divorcing a few months later. We bought there home and rented it out to my step-father. He had no money, no credit due to bankrupcy. As soon as he was able to build up his credit he was going to buy our house. My mother was living with her sister at the time. She eventually improved enough that she could walk (with a limp), use one of her hands, and even speak short sentences. She was able to move out into her own place. In March of 2006, our daughter Brooke was born. Here I was, three babies to take care of, one with special needs, I was still responsible for our finances, my parents' finances (separately), trying to get my mother disability, doctor's appointments, and everything else that goes along with normal life. Bryan was hard at work, attending school full-time to be an Xray Tech, and working full-time. He was doing all he could for our family. To make our situation even harder, my step-father ended up walking away from our house, leaving us with two mortgages and three mouths to feed. I didn't think we'd ever get through that time, but we did.
It is now January of 2012. and a lot has changed. We welcomed our fourth child, Brinley, into the world in March of 2009 and my father passed away in December 2009. Conner was re-diagnosed in February 2009 with Lennox-Gastaut Syndrome, a very devastating disease that leaves 95% of people permanantly disabled, mentally and physically. Between 2009 and May 2011, Conner lost a lot of function. He was only about a two to three year old level. He lost the ability to get himself dressed, buckle himself in the car, and his speech became very hard to understand. He even walked differently. He has lost the ability to play and though he was not Autistic, he was on the spectrum and developed many Autistic tendencies and ticks. He whistled, tapped, banged, clapped, etc. He had also developed many obsessive/compulsive behaviors including pulling out his toenails and fingernails. We tried him on Banzel; a brand new medication specifically made to treat Lennox-Gastaut patients. Unfortunately, there was no improvement.
One May 6th, 2011, Bryan and I went into Conner's room at 8am to get him ready for school, and found him face down in his bed, not breathing. He passed sometime between the late hours of the 5th or in the early hours of the 6th from a seizure. Though we do not know exactly what happened, we do know that he seized and aspirated. After he passed, we heard the term SUDEP for the very first time; Sudden Unexplained Death in Epilepsy. Though we knew how fragile Conner's life was, we never thought this day would actually come. Twice during Conner's life, he stopped breathing and his heart stopped during seizures. We had to resuscitate him frequently because he would stop breathing and needed help. Knowing this actually gave me a false sense of security. May sound strange, but I would think to myself, "He does this all the time yet, HE ALWAYS COMES BACK!" He will ALWAYS come back. This time, he didn't. Sometimes I beat myself up for not hearing the seizure. I always heard! It was my job to hear! Then my friend pointed out something that changed me forever. "Maybe he didn't make a sound or maybe you were not SUPPOSED to hear. Maybe Heavenly Father was just answering his daily prayer, "Please bless I don't want to have seizures". He decided that Conner's earthly life was complete and he was rescuing him from future pain and suffering." Though I am so grateful that Conner is no longer suffering, I miss my boy. I miss his laugh, his smile, and everything else that made Conner, Conner.
Believe it or not, I am still thankful for my Father in Heaven and all of the blessings he has given me. Trials too. I have learned so much about myself. I have learned that I would sacrifice ANYTHING for my children. Even though I have suffered a great loss, I wouldn't change my eight years with Conner for anything. Yes, it was hard, and yes, losing him was the hardest thing I've ever gone through or will ever gone through, but he was worth it. I would do it a million times over just to have him in my life. He was "My bestest boy in the whole land." Yes, he could be the biggest turd on the planet, and we butted heads a lot, but no one could cuddle like we did. We could fight and fight and then crawl into bed and snuggle. The day before he died, he had a really bad seizure day. At about 11am he and I retreated to my bed and just held each other close. He had his "Duckies", which was his favorite blanket, and he sucked his thumb while rubbing one of his tassles on his nose. I will never forget that moment, as it was the last time we ever held each other.
Life is full of ups and downs. I have discovered that I am a much stronger person than I thought I was. I am still standing because of our amazingly supportive family and friends. They have been with us through wonderful times, and really horrible times. I know that with them, the knowledge that families can be together forever, and God at our sides, we will be able to survive whatever life throws at us.