At Elevation Church, we are currently in a series called Your Verse. I was recently asked by my volunteer leader if I would be willing to write about My Verse. I knew immediately what my verse is and was honored and thankful for the opportunity to share it with many people who don't know me well or Kaitlyn's life story. So here is My Verse!
|Elevation Church's Your Verse Series|
Click here if you would like to learn more or watch videos from the series!
28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose
Growing up (I am now 35), I was very blessed in that nothing really “bad” ever happened to me or my family. There were pretty much no deaths or tragedies in my early years. The worst thing was my parents’ divorce when I was in middle school, which did affect me significantly. Other than that, life was pretty normal and happy. I grew up in a great Presbyterian church in Richmond, Virginia that gave me a basic foundation of who God and Jesus are but knowing and having a personal relationship with Him was a different story. I THOUGHT I knew what that meant but it wasn’t until late high school/college that I really got it and it was even later in life that my heart truly understood My Verse:
28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
Long story short, I graduated college, eventually got married and then it all started. The not so happy events in my life that helped me truly understand My Verse. As a happily married young couple, we wanted to start a family and we got pregnant! Then we had a miscarriage. Then we got pregnant again! Then another miscarriage. Then we got pregnant again! Then a 3rd miscarriage. Life was not going as I had imagined it would. Depression and anxiety set in as I wondered if I’d ever be a mother to my own children. I personally do not believe that God planned on me having 3 miscarriages. I DO believe that if you are WILLING to let him take control in your life, he can use the SITUATION and YOU and turn a tragedy around for good and “for His purpose”. When you are in the middle of it all, it is very difficult to imagine how any good can come from tragedy or loss. I didn’t see it then, but I do see it now. I understand My Verse in a non-superficial, deeper way than I ever imagined.
A month before doing IVF (in vitro-fertilization) in the hopes of getting a “good quality egg”, we got pregnant with our daughter, Kaitlyn. She was the answer to our deepest prayers and longing. Something we doubted was possible, actually happened! For us, she was our miracle child, God’s direct answer to our prayers!
Kaitlyn Kay Bourgeault (pronounced like Boar-Galt) was born on July 1st, 2009! A healthy, beautiful, baby girl. Over the next 6 months or so, she was doing great but she wasn’t progressing like she should have been. She wasn’t trying to crawl or really sit up on her own. Her spleen and liver were enlarged and we were sent to see a geneticist. At the time, we were also trying to get pregnant with a 2nd child. We went to the geneticist and blood was drawn to try and narrow down what was going on. We immediately stopping trying to get pregnant because of the potential genetic issue, however; on April 22nd, we found out that we were pregnant!
The very next day, April 23rd, 2010, we got the call that Kaitlyn had Niemann-Pick Disease, Type A (NPA). An extremely rare genetic condition with no treatment, no cure, and the average age of death was between 2-4 years old. WHAT?!?! She was almost 9 months old at the time when we received that call. The disease is double recessive meaning that BOTH the mother and father have to have the genetic mutation in order for the child to have the disease and each child we have has a 1 in 4 chance of also having it. We were beyond devastated! Devastated for Kaitlyn and devastated for our unborn child who could also have the disease.
I realized pretty quickly that all those miscarriages and counseling I received were preparing me for this. It’s like God and the devil were in battle over my soul, with God saying that he will turn it around for good because I love Him and was called according to his purpose.
When I say extremely rare, Kaitlyn was 1 of 5 alive at the time in the US and 5 is a pretty high number for NPA. How in the world did this happen? Everything in life was going great and then boom it hits the fan, but not without a huge blessing as well. Talk about emotional highs and lows!
On December 26th, 2011, Cole Alexander Bourgeault, was born. We had his cord blood tested and a few weeks later we found out that he was a carrier, just like his father and me, but HE DID NOT have the disease. That was one of the happiest days of my life.
As Kaitlyn’s disease took over her body, I decided to start a blog to keep family, friends, and newly diagnosed NPA parents aware of what was going on with Kaitlyn and what to expect. If I ever wrote a book, it would probably be similar to What to Expect When You Are Expecting but be titled What to Expect When Your Child is Diagnosed with NPA. It is so rare that you really don’t know what to expect!
As I wrote blogposts, my intention was to be real and honest about what was going on. Not to sugarcoat anything but also not to focus on the obvious negative. What happened next was something I was completely unprepared for. Emails and comments started pouring in from ALL AROUND THE WORLD! Friends on Facebook would share the link to the blogposts and it spread like wildfire. It was then that I truly realized both MY purpose and Kaitlyn’s purpose. I was her voice and she touched peoples’ hearts in a unique, amazing way. She brought parents closer together with their children. She had unbelievers start praying for her, which turned into a relationship with God. Some of the comments we received were:
"Kaitlyn has had a profound impact on me not only with my direct family but how I plan to carry out the rest of my life. In honor of Kaitlyn, I am going to be volunteering at my local children's hospital."
"I do believe in God, but never really have trusted in Him nor felt like he had a plan for me-or anyone until your story, You truly changed my outlook on life, God, my daughter, everything."
"Because of Kaitlyn, I strive to love on my two daughters more, and to TRULY cherish and dote on them."
"I promise to be a better mommy to my sweet angels. I promise to never take this life for granted, to hug them as often as I can and tell them how much I love them every, single day. You have helped me realize how precious life is and how important it is to love one another fully and completely."
"I had become bitter and resentful of a lot of things over the last several years. I didn't know how to accept things I couldn't change, I didn't like people, I started to despise my life, to include most people who had a part in it. Then, last week, the post about Kaitlyn. Why would I read it? Why would it move me to tears? Why did I write to you? I believe that God is speaking to me through Kaitlyn... talking to me and teaching me that there are FAR more important things. Letting me know what is and isn't important. Proving to me that what I thought were hard times and obstacles were really nothing at all."
"What I find remarkable is that I have opened dialogue over the last few days with God. Asking about Kaitlyn, why these things happen, etc. So my comment earlier about her being my Guardian Angel and her saving me... well, that wasn't just talk. Your young daughter took an almost 40-year old grown man from being afraid to talk to God to being a chatterbox with the very same God!"
"I can only hope that I will make in 80 years the impact that Kaitlyn has made in her life."
"Kaitlyn has taught me more in these past months about life than anyone in 35 years."
"Your family's story and the example you have set through this blog have given me a whole new perspective for my daughter- one of living for each day, appreciating the moment, and leaving the "what ifs" at the feet of our Lord."
"I stumbled upon your blog by complete accident. I am 25 and from Scotland... the other side of the world. I believe I was meant to come across this blog for a reason. I've just undergone major surgery on my leg after a car accident that nearly took my life. I have been feeling down and depressed about it all & think I was mean to see this page to put things into perspective. I feel ashamed that I have been feeling hard done by and felt sorry for myself when your little girl shows such strength every day and you guys are beyond strong."
"My life is literally changed for the better by your sweet, courageous, beautiful daughter. You see, before a friend posted your blog on Facebook, I wasn't sure if I believed in God. I wanted very much to believe, but I had trouble surrendering myself fully to the notion. Kaitlyn's story has strengthened and solidified my belief in God. I know in my heart that God sent her here to be His messenger that He is real.... I hope you'll whisper heartfelt thanks to Kaitlyn for changing my life, for making me a better mom and to my sweet son and for proving to me the presence of God in my life."
"I know you said she has only ever spoken four words but believe me she has spoken more -- She has said to me "wake up and be the person you want to be. Start now and don't wait.
"She has challenged me to be a better person"
I was overwhelmed and so blessed to be her mom and her voice. God works for the good of those who love him, who have been called according to his purpose. It doesn’t always mean that the things God works on are “good’ things in our minds but he can turn those things into something beautiful IF WE JUST LET HIM.
Now when I read that verse I think of the hard times. The difficult times. And I trust that because I love him, he will work those situations for good. It won’t be easy but I know that when I look back, I will be able to see HOW he was working for good in my life. So if you are struggling with anything right now, let God in and ask him to use your situation for good and be willing to let him in.
|Me and Cole, now 3 1/2 yrs old|
Kaitlyn Kay Bourgeault passed away peacefully at home on March 22nd, 2012. Here is her blog if you want to read more about her and our family.
In God’s everlasting love,