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.
For the past 6 months, I have been trying to figure out what the new normal is. When Kaitlyn was here, our new "normal" changed all the time as she changed. I was mom/nurse/advocate every second of the day. Now... there is no normal.
A friend shared this with me. Doesn't it look just like Kaitlyn?! I love it!
I haven't written much since Kaitlyn died because I just didn't know what to say and still feel that way sometimes. It has been nothing like I expected it to be. I always imagined that I would be so overwhelmed with grief and heartache that I would be paralyzed.
Instead, I found myself lost in who I was supposed to be. An identity crisis of sorts. There were days I felt empty and days I felt fine. I realized that I had been grieving ever since we got Kaitlyn's diagnosis. I grieved every single day as I watched her lose her abilities and grieved knowing that there wasn't a cure.
Words of encouragement from a friend
What keeps me going now is all of you. Friends, family, neighbors and others across the world who remind me of how Kaitlyn touched their lives. Knowing that she is still making a difference makes me so grateful and blessed. Thank you for the messages you continue to send me.
My current desktop background
As I continue to figure out my new normal, I pray that God will direct my path and surround me with people like all of you who have been so supportive. I will never be able to thank all of you enough.
This morning I planned on waking up before Cole so that I could shower and be ready for the day by the time he woke up.
I set my alarm... my alarm went off... I turned the alarm off (you can see where this is going)... then stayed in bed.
It has been a very difficult week for me. Many pieces of my life have not been going as well as I had hoped and basically it was all turning into one big snowball of frustration and negativity. I decided to close my eyes and pray that today would be a better day than yesterday.
By the way, closing your eyes after turning your alarm off in the morning is never a good idea, even if you are praying. ;-)
"Sorry God, but I fell asleep!"
For 5 months, my heart has been hurting and missing Kaitlyn. I have prayed and asked for her to give me signs and she has! I have a journal with eleven 4 leaf clovers in it, one that is framed and one in an angel wish box... a total of 13. The odd part is that if I look for 4 leaf clovers, I never find them. I find them only when I am not looking for them and I just randomly notice them.
So, back to this morning. I obviously fell back to sleep. It was the best thing that could have happened. I dreamt of Kaitlyn. I have waited and waited for so long to dream of her. Okay, so really
only 5 months, but to me it feels like eternity. I have been frustrated
that I haven't seen her but I know that today was the most perfect day
to dream of her. God's timing IS perfect. We just don't understand it
until it happens. I am so blessed and thankful for the gift of seeing
her and hearing her voice.
So here is the dream:
I walked into a large bedroom (one I've never seen before) and Kaitlyn was waking up and sat up in her bed. She had no signs of NPA and she was as beautiful as ever, with her curly hair, big blue eyes and sweet little smile. There was a woman in the room, about the same age as I am, but with dark brown hair in a ponytail. She looked at me with concern, as if she were watching over Kaitlyn and I said to her, "It's okay. I'm her mother." The woman didn't say anything but nodded her head and went about her business in the room.
There were clothes and dresses hanging in dark wooden closets across the entire right side of the room where the woman was. There were clothes picked out for Kaitlyn already but I said to Kaitlyn. "We need to find you something more girly!" She smiled and giggled and I picked out an outfit for her. I got her dressed and Kaitlyn then started saying... "Baby!... baby!... baby!"
I then woke up and Cole was awake and I could hear him on the monitor. I think she was telling me that her baby brother was awake. :)
It was a very short dream but I can remember the details so clearly. Just dreaming about her has made me feel so happy and blessed. I may have been upset that I didn't get to dream about her in the past but today WAS the perfect day for it. I cried tears of joy and it has made all of those things that have snowballed seem so insignificant. God knew what He was doing and I am so thankful for it.
We are on our way to Nashville! The National Niemann-Pick Disease Foundation is holding its annual medical and family support conference in the music city! Last year, Kaitlyn was the only NPA child in attendance. I feel that it was our responsibility to put a face with the disease and be her voice. This year is bittersweet going without her. I have been praying that I will have the right words to be able to best help other families and be able to focus on impact rather than loss. I will try to post more during our trip on the status of Enzyme Replacement Therapy (ERT) and other advancements in research. Safe travels to everyone traveling to the conference. There are many coming from all around the globe!
It's been 4 months since Kaitlyn passed away
and my heart is filled with love and hope. I am so proud of her. She
continues to live inside all of us who have been blessed to know her and
who she is.
"I promise you, Kaitlyn, I will always be your voice and
fight for you. I won't give up. I will persevere."
Here are a few photos I came across today. They put a smile on my face. Thought I'd share!
The first time Kaitlyn got to "hold" Cole. She was SO excited!
Comfy.
Practicing her "teenage" faces.
Sleepy bug.
This has always been one of my favorites.
Just hanging out.
They were SO cute together!
My favorite. This is on my phone every time I turn it on.
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