I can't believe that Kaitlyn would be 4 today. I look at little girls who are around that age and imagine what she would be like, what she would be interested in and what our conversations would be like. It's heartwrenching but I know that she is in the best hands possible right now and free from Nieman-Pick Disease.
Kaitlyn's 1st Birthday
Later today, Cole and I are going to go visit her grave and send 4 balloons "up to heaven" to her. I want Cole to remember Kaitlyn and celebrate her birthday in a fun way so we are going to have some cupcakes and Cole will get to blow out the candle for Kaitlyn. :-)
I also made a photo album of pictures that are just of Kaitlyn and Cole so that he can have fun going through them and remembering the fun times they had together.
Hopefully I'll be able to take some pictures and share them with all of you. Thank you to everyone who has made it a point to remember Kaitlyn today. It means the world to me.
I am going to be making a donation to the Niemann-Pick Disease Foundation in memory of Kaitlyn. If you feel so inclined, please click here to make a donation and mention "in memory of Kaitlyn Bourgeault, Type A".
It is very difficult to articulate the feelings and emotions that I felt on Friday, the one year anniversary of Kaitlyn's death. I wasn't sure how I would react or what specifically I would react to. Would it be the day in general? Would it be the memories of how it happened? Would it be memories of her funeral? I just didn't know what to expect.
I woke up and knew the significance of the day and felt a "dark cloud" over me but I wasn't upset... yet. I decided to stay home with Cole and spend the day together and meet Chip at Kaitlyn's grave site later that day to place a special heart-shaped floral arrangement on her grave.
During the morning hours though, I found myself starting to "busy" myself... cleaning the kitchen, starting laundry, picking toys up and doing a lot of random activities to keep my mind off the obvious. That didn't work. The closer the clock got to 12:34pm, the very minute Kaitlyn died, the more anxious and overwhelmed I got.
Being that Kaitlyn passed away at home, I felt the flood of emotion and memories resurface. I felt a heavy weight on my heart and shoulders. A sadness of not being able to hold her or see her smile. It is still surreal that she isn't here. Part of me feels like it was yesterday and another part feels like it was forever ago.
Last year at her memorial service
Around 12:25pm - 12:35pm, I spent some alone time at the very spot where she passed away, in the master bedroom. I felt closer to her there than I did at her grave site later that day. I cried tears that no parent should ever have to cry. But oddly at 12:35pm, it was over and I was "okay".
We met at Kaitlyn's grave and I sat with Cole and said a prayer to God thanking Him for Kaitlyn and the time that we got to spend with her. We know that she is in the best hands possible now and that one day we will see her again.
I would be lying if I didn't say that the whole weekend was up and down emotionally for me. It would mean the world to me if you could keep us in your prayers as we move forward in our lives but at the same time keeping Kaitlyn in our hearts. It is a difficult concept to grasp for me... trying to be happy but grieving at the same time. The grief never ends, it just changes.
On Friday evening, I invited everyone to light a candle for Kaitlyn at 8pm and say a prayer for those children with Niemann-Pick Disease and the families who persevere through it all.
I was blown away at the response and the photos that were posted of all the candles lit in memory of Kaitlyn. I also chuckle a little because anything having to do with Kaitlyn, whether she is with us on Earth or in Heaven, is a big deal. She WAS born in Texas after all... everything is bigger in Texas... bows... hair... :) She made a Texas sized impact on the lives of all of you and a year later, it was so amazing for me to see that she is still doing God's work. I am so proud of you Kaitlyn!
Check out my Facebook page and the event page to see some of the amazingly beautiful images from Friday's candle lighting around the world!
(at your home) at 8pm on the evening of Friday, March 22nd, in memory of Kaitlyn.
Friday marks the 1st
anniversary of her death. It would mean so much to me if you took a minute
to say a prayer for the children around the world who have Niemann-Pick
Disease and also for their families who live with the reality that there currently is no cure or treatment. I pray that a cure be on its way soon. Please share the event with others! Here is the Facebook event link that is open to the public.
We need your help! On Thursday, February 28th, we'd like to ask that all of our
friends, family and supporters join us in observing Rare Disease
Day.
World Rare Disease Day is an annual observance held on the last day of
February (February 28th or February 29th in a Leap Year -- a rare day)
to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare and genetic diseases and their families.
For those of you who have followed Kaitlyn's Korner, you probably already
know that Niemann-Pick Disease is among one of the 7,000 rare diseases
that exist. Kaitlyn was one of only five children in the United States
living with Niemann-Pick, Type A before she passed away. The National Institute of Health
estimates that 50% of people affected by rare diseases are children,
making rare diseases one of the most deadly and debilitating for
children worldwide.
Let's raise some awareness so that we don't have to
read awful statistics like this. Better yet, let's raise some awareness
so that some day children like Kaitlyn will no longer have to suffer from
rare disease because there will be better genetic testing, more
research, actual treatments, and CURES!
So, what can you do to show your support??
Post Kaitlyn's picture on your Facebook page. Heck, use it as your profile picture for even more exposure! Make sure to tag @GlobalGenes in all your pictures
Wear your blue PERSEVERE wristband or t-shirt and post pics to my/your Facebook page wearing them along with messages
of support for Rare Disease Day
Join the Global Gene's Project's Wear That You Care movement and wear your favorite pair of blue jeans in support of rare and genetic disease awareness
If you're so inclined, make a donation to the National Niemann-Pick
Disease Foundation in memory of Kaitlyn Kay Bourgeault, NPD, Type A. Donate here: National Niemann-Pick Disease Foundation
The single most difficult year of my life. It has also been the most life changing for me, personally. I have grown in my faith and in the way I live my life so significantly that I wouldn't be the person I am today without having gone through this most horrendous and beautiful year.
Sleeping Beauty (January 2012)
Holding my sweet girl (January 2012)
Precious awake time (February 2012)
From January to March 2012, I spent every second I could with my
daughter, Kaitlyn.
I was by her side as she fought an unimaginable
disease that took her life on March 22nd at 12:34pm. I also felt God's
immense presence in our lives during quiet moments lying next to her as
she and/or I slept.
Sleepy Girls (February 2012)
Happy Dreams! (February 2012)
Flowers and Butterflies (March 2012)
God wrapped His arms around us and gave us the opportunity to turn our nightmare into His work. Kaitlyn changed lives. She was here for a reason and God used her to reach into the hearts of thousands across the world. He is still using her here for good.
Many people across the world released balloons for Kaitlyn on her birthday
Butterfly release
Kaitlyn's 3rd Birthday
After she passed away, I had to face many ugly realities over the spring and summer that I had chosen to put on hold while Kaitlyn was with us. A decision I don't regret. I wanted to spend the little time I had left with Kaitlyn being the best mom I could be for her. That meant being happy and making the most of every day for her. She deserved that.
Quality time
The summer was full of praying, counseling and trying to figure out "What now?". There were good times, there were rough times. I went to church and cried out to God... a lot. He carried me through the storm.
Holding sweet Amber (NPA) at the Niemann-Pick Conference over the summer
Cole and Amber at the conference
Voted into the National Niemann-Pick Disease Foundation Board of Directors!
The fall and winter, I focused on Cole. I watched him grow and learn. I saw life through his eyes. A priceless gift that changed the way I looked at the world and what simple happiness means. God also brought some incredibly amazing people into my life. People who cared for me and actually took care of me. Some of you will understand this, especially those of you who have had a sick child. There was a point when I took care of everyone else and had no one to take care of me. I was fine with that. My priority was taking care of Kaitlyn. It was what it was.
Dachshund races! Cole thought it was hilarious!
Silly times
Merry Christmas!
So here I am at the end of the year. The holidays were surprisingly okay, emotionally for me, without Kaitlyn here. I am realizing that the end of this year has been harder on me than I thought it would be.
It is a bittersweet end of year for me but I have faith and hope that God will continue to work in my life and that 2013 will be a year filled with blessings.
"The steadfast love of the Lord never ceases; His mercies never come to an end; they are new every morning; great is your faithfulness. "The Lord is my portion." says my soul, "therefore I will hope in Him."
My Kaitlyn Christmas tree covered in her beautiful bows! I even used her pink feather boa as a tree skirt... lol.
Although I know she is always with me, being able to put this together in her memory, makes me feel even closer to her.
As I put the bows on the tree, I remembered specific times she wore each one and all of the significant moments in her short life.
Cole and I watched one of Kaitlyn's favorite movies, Tangled, while I decorated the tree. It was so great hearing the music from the movie and doing this for her.
She may have an empty stocking this year but she now has a whole 4 foot tree of just her! :-)
This past Tuesday, I had the opportunity to attend a candlelight vigil and prayer service for a teenage girl, Kayla Campbell (16), who goes to my church and went missing on Sunday. The event was held in front of the Campbells' home and was organized by a neighbor.
The beautiful Miss Kayla Campbell
As many of you know (cause you were there!), our neighborhood held 2 candlelight vigils in front of our house before Kaitlyn passed away.
Two sweeties in front of our home
On Tuesday, it was my turn to be on the other side. Being outside their home and surrounding them with love and prayers was an incredible feeling. It also reinforced how fortunate we were to have a loving community when we needed it.
In front of our home
Although the situations were/are different, I knew exactly what her parents were feeling inside their home as they looked out at neighbors, friends, and church members gathered in support for them.
"Everyday" Kayla
Being on the other side was obviously a little emotional for me, in both good and sorrowful ways. I was fortunate that I was able to talk with Kayla's parents that night and tell them about Kaitlyn and how our neighborhood did the same thing and that I know what it's like to look out that window and see those beautiful lights and yet at the same time, how surreal it is. I also told them about the first time I met Kayla, about a month ago, at church, and how the middle school girls (I volunteer with the MS youth at church) were so excited to see her that they literally tackled her to the ground!
Kayla "Made a Difference" just as Kaitlyn did. This was from a group of students that drew pictures for Kaitlyn.
If you have followed the story, you would know that sadly Kayla's body was found Thursday around 12:15am in a local pond that was drained after they found some of her personal belongings there. Further details have not been released yet, but she is with God and Jesus in Heaven now.
People ask ME "How were you able to get through everything with Kaitlyn?" "How are you okay?".
It's all in perspective.
I can't even begin to imagine what the Campbell family is going through. Yes, with Kaitlyn, it was heartbreaking and devastating to watch her deteriorate in front of my eyes every day. I am so thankful though that I was with her in her last moments, knowing what happened and didn't happen, etc. The Campbell family will forever have questions about those last moments of Kayla's life. My heart is shattered for them. It reinforces the fact that no matter how bad you think things are going on in your life; there is someone out there that is going through something even more difficult.
Please keep Kayla's family in your thoughts and prayers. For those of you who knew her or would like to do something in memory of her, her family has asked that donations be made to our church, Next Level Church.
A prayer that I always go back to during trying times is: "Father, we believe that when we see you, any
suffering that we endured on the face of this earth will be worth it.
Help us to understand. And when we cannot understand, help us to trust." ~ Max Lucado
A friend recently sent me a prayer and it spoke to my heart in an amazing way. It is "A Prayer for the Hurting Mom" that was posted on another blog. Of course when I went to find the Facebook message from her, every other message would load EXCEPT for hers. Coincidence? I don't believe in coincidences. Everything that I have experienced and the ways in which Kaitlyn has and is continuing to impact lives is so incredible that I feel that someone (Devil? Satan?, whatever you believe) is trying everything possible to keep good from happening.
Sorry dude but I'm not giving up! I'll do the opposite and do even greater!
I'm sure many of you, if not all, have experienced something like this in your life at some point in time. When you feel that everything is going right and all of a sudden things and/or people start trying to tear you down or get in the way. To prevent good from happening. Many people give up. I'm not that person. I promise to always find the good and make sure to encourage others to have hope, never give up and persevere. It WILL be worth it. I know it with every ounce of my soul.
By the way, the message is STILL trying to load on Facebook... haha.... I'll wait ALLLLL day if I have to until I get it!
HA! GOT IT!
Prayer for the Hurting Mom
Dearest Lord, We come in to your presence on the broken side of glory.
Relationships are in turmoil, lives are uprooted by natural disaster,
checkbooks reflect numbers no parent wants to see, kids leave us
stressed, loved ones have passed, schedules are over-booked, and energy
is waning.
This season is one filled with expectation for your birth. There
is supposed to be joy in gathering and sharing but when life
circumstances take life out of us there is struggle to even find the
will to prepare. Around us people around sing of the Holly Jolly
Christmas being the best time of the year, and as we listen, guilt over
our sad feelings mount and the energy needed to wear the happy mask
leaves moms tired and empty, wondering how to be real.
Lord, meet us in this place.
In the midst of our dreariness there is serenity in your birth
story. Hope is found in brokenness. Scared parents fall to their knees
and trust in less than perfect circumstances {at least from the stand
point of the world.} The Christ child takes His first breath in an
uncomfortable stall. A bright shining star reveals that in your plan
significance can be found in unexpected places during the darks of the
night. Blood, sweat, tears, pain, fatigue, they are all predecessors
to a mama seeing you for the very first time.
Lord, I pray for mothers everywhere that commune with those
feelings. That feel broken, afraid, misplaced, run down. I pray that
in their exhaustion they too will see your face, feel your
magnificence, and smile. Not the surface-y holly jolly Christmas smile,
but the heartfelt grin of a mother who knows life is worth fighting for
and that hope is found in seeing your eyes. It’s awareness that
through the tears you meet us and we recognize that we are no longer
without hope, but filled with quiet strength that comes in your
presence.
This Christmas may we all see you. Not the stuff, but you. May
the masks come off and relationship with you deepen, knowing that is why
you came in the first place and that in this union hurting hearts are
mended, energy is restored, and true promise is found. Amen
Sweet Jacob Brooks (NPA) passed away a few days ago on November 15th, 2012. His mother, Sarah, said that he passed away peacefully in her arms. She also has a blog dedicated to Jacob. Please check it out. (The Joy of Jacob) Our hearts and prayers go out to this amazing family and for the strength to persevere. Please keep them in your thoughts and prayers.
The Brooks family
I hope Sarah doesn't mind me sharing this but when I first made contact with her we found out that she and I have the exact same gene mutation (E352X) on the SMPD1 gene. I understand for some of you it's a foreign language (It does sound nerdy doesn't it? "So what's your SMPD1 gene mutation?!"). When Kaitlyn was diagnosed, we were told that the E352X mutation had never been seen before. Small world right?! I honestly believe that Sarah and I are probably distant relatives. What are the odds of having the same gene mutation that had "never been seen before". Guess they can add that one to the list. Thought some of you might think that was interesting.
Here is the information for services to be held for Jacob. Obviously most of you don't live in California but maybe you can have a moment of prayer for them during these times, light a candle in his memory or simply be extra aware of everything you have to be thankful for this week and that the Brooks family has to do the unthinkable and lay their son to rest. May God bless their family and fill their hearts with loving memories of Jacob.
Tuesday, November 20th, 2012
Celebration of Life Memorial -- 10:30 am
Hope Center
2275 Morello Avenue
Pleasant Hill, CA 94523
* Corner of Taylor Blvd. and Morello Ave.
(925) 685-4673
All family and friends are welcome. Reception immediately following at the same location.
Private Graveside Burial - Time to be determined
Family only
Queen of Heaven Cemetery - Holy Innocents area
1965 Reliez Valley Road
Lafayette, CA 94549
In lieu of flowers, please consider making a donation to the National
Niemann-Pick Disease Foundation in memory of Jacob Lee Brooks. Click here to donate.
October
is Niemann-Pick Disease Awareness Month. Please consider donating to
the National Niemann-Pick Disease Foundation in memory of Kaitlyn
Bourgeault (Type A). Every little bit helps and it goes a long way. Here
is a link to donate.
I have been praying a lot lately for inspiration on what to write here on Kaitlyn's Korner. I feel like my prayers were answered this week. An amazing thing happened here at home.
I have been trying to get Cole to sit with me and listen/read books (no this isn't the amazing thing). In my attempts, I have started reading books with him in his room before bedtime regardless if he is running around not even paying attention to the book or whether he is at his art easel coloring. I figure that over time, he will become more interested in the books as I read them.
"Buckethead"... he thinks it's hysterical!
Let me preface what I am about to tell you with a few statements. First of all, we say prayers every night before bed. We thank God for our family and friends and then say specific prayers for those that we know need them. At the end we will say, "In your name we pray, Amen" or "In your son's name we pray, Amen". For whatever reason, I just haven't said "Jesus" a lot. Secondly, we have a few books that have "pictures" of Jesus, but we have never pointed him out specifically to Cole other than just reading the story. Most of the books that Cole likes to look at have colors, animals and are typical books aimed at toddlers.
He loves animals!
Well... I decided to read "Heaven is for Real for Kids" to Cole the other night. I have never read the book to him before. I started reading the book and he ran around his room playing with toys. Occasionally he would look over, but it was obvious he was more interested other things. At the end of the book, there were photographs of the family that wrote the book and there was a picture that a teenage girl drew of Jesus. Cole came over to look at the pictures and he scanned them briefly. Then he pointed to the drawing and with gusto, said "Jesus". I say "gusto" because it was like Cole knew him like a family member. The only other people that I have heard him do this with are "Mama", "Daddy", "Gigi", "Dane", "Pepere" and "Emie". Even when I ask him "Who is that?" at a picture of Kaitlyn, he will usually just be really quiet or will occasionally say "Kaywin". Let me remind you that Cole will only be two years old in late December of this year. Most of what he says is "toddler language" and I feel like I need a translator!
This is the picture in the book.
Of course, I immediately started to think of when I could have possibly shown the book to him before or maybe Chip had shown it to him before so I decided to wait until the next morning and find out. I also did a little "test". I took out an Easter book that we have and handed it to Cole. I took my phone and recorded him looking at the book to see if he would spot Jesus. Again, he has never pointed him out before and the last time we read the book was at Easter time and I honestly don't remember reading it to Cole specifically. Here is the video.
The pictures of Jesus in both books show him in a white robe and purple sash. That is the only similarity, otherwise the two pictures are starkly different.
As many of you know, Chip and I are separated. I thought that maybe Chip had been talking about Jesus to Cole or may have read similar books to Cole. I called him after I recorded the video and asked him about it. He said the same thing that I did. He says prayers with Cole before bedtime but usually says the same things that I do. I asked him if he had shown him any books or if anyone else that interacts with Cole has done anything that would have led to him recognizing the pictures and he couldn't think of any possibility that Cole would have known what a picture of "Jesus" looks like or that Cole even knew how to say the word "Jesus".
I also asked my mom, Gigi, and she also said that she hasn't said anything to Cole about "Jesus" specifically or emphasized any pictures, etc.
Gigi and Cole singing "Wheels On The Bus"
Now, I completely know that it is possible that we read the book a LONG time ago to him and could have pointed him out, but as Cole's mother, I know my son and I know that this was not him remembering from when he was a baby. I really do feel that young children have almost a sixth sense about things and as we get older, that ability fades.
I think that God and Kaitlyn were impacting Cole and answering my prayers. To be able to share a remarkable event like this with all of you and also to help me know that Kaitlyn is still with us and that Cole knows Jesus. Kaitlyn was and is amazing. So is Cole. I know that he will also inspire many people, as I feel he already has. I am so proud to be his mother and I can't believe how lucky I am to have him in my life. What a blessing children are.
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