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.
Our sweet baby got his Angel wings today at 5:16am.
We were all snuggled together in our big bed …. Steven holding is left
hand, and me his right (all night long). I woke up out of instinct and
turned on a small lamp, I just knew he was getting ready to leave us …
just then his pulse oximeter started to beep. I turned it off and woke
up Steven. We left NOTHING unsaid. We squeezed him and kissed him
over and over. We told him how unbelievable proud we are of him, that
he has done more in his sweet three years then most can do in 100. We
told him we wanted him more than he ever would know. We told him we
would miss him so very much and would see him again. He was so peaceful
and so quiet. He truly looked like an Angel. We told him about his
family waiting for him in Heaven and that he would have pain no longer …
then he was gone. We love you so much Wylder James.
We opened our bedroom door and let his beautiful spirit go free. We
held him and cried and looked at the BEAUTIFUL day outside. Wylder
picked the most beautiful morning and made it so peaceful and calm for
Steven and me. We took off all his tubing …. We held him and walked
with him and he looked SO beautiful and SO free. We gave him a bath and
got him ready for the beach … Which is exactly where he is going.
We are taking our Warrior to the island of Maui with family … a place as you all know very dear to our hearts.
We left nothing unsaid. We were right there when he came into this
world and we were right there when he left. His spirit is free, and his
beautiful body was just such a gift. I held him on the patio for over
an hour and read him his sweet book … “darling baby sleep in peace. You
make life, so complete”. Then the mortuary arrived to pick him up and
his daddy carried him to the car. We gave him a few sweet final kisses
and watched him drive away.
It has been such an incredibly hard morning …. But Wylder did this in
his own way and it was so peaceful and calm. No extra meds, no crisis …
nothing. Just bliss. After he left we came inside and saw stacked
dishes in our sink from last night’s dinner as a family … perfect! I am
so happy we just left those dishes sitting there and spent every second
with Wylder. NO REGRETS!
Wylder James will be so missed and touched the lives of so many. We
feel numb right now … but together. We are firm believers that our
thoughts create reality and so we are sticking close together and
staying positive … just what Wylder has taught us is important. We will
miss his sweet face so much. He was such a precious little boy and he
brought so much joy to our lives.
After our family returns from the Island of Maui we do plan on having
HUGE celebration of life ceremony to enjoy his life with all of you.
There are so many people he has touched and that have supported us
beyond words … we want to celebrate with all of you here in the Valley.
Thank you so much for loving Wylder and supporting our family. I will
post more on the Celebrations here later.
Uncle Puppy wrote me a note this morning and I think it is perfect …
“As far as I’m concerned Wylder won his battle against Niemann Pick A.
He took that terrible disease, owned it, and turned it into a teaching
tool for life lessons. People will never forget … especially me.”
In Lieu of flowers, please make donations to Wylder Nation and/or National Niemann Pick Disease Foundation and tell
a friend about our Angel and his beautiful life. (If you donate to the NNPDF, please make sure you indicate "in memory of Wylder Laffoon, Type A. This way the money will go toward research for Type A)
We will post further
information on our Maui plans and how you can all participate from a far
… Warrior Style! We thank you for being on this journey with us every
step of the way … all our love.
To learn more about Wylder and how you can help his family, visit his Wylder's Blog
For parents with a terminally ill child, every second they have with their little one is one they will not get back. When Kaitlyn was alive, I had a hard time letting other people, especially non-family, spend any significant amount of time with her because those were minutes we would never get back with her. Of course, I did let people spend time with her but it was very difficult to not want to always be by her side.
Always by her side
Riley, 22 months old, also has Niemann-Pick Type A. He and his family live in Georgia. I have been friends with his mom, Lori, for awhile now but never had a chance to meet her, Riley or their family when Kaitlyn was alive.
Riley
Over the weekend, Lori and her family gave me the honor of spending the weekend with them and getting to know Riley.
I even got to hold him! With NPA, it can be very uncomfortable for the child to be held, because his/her liver and spleen get so enlarged and uncomfortable. Even as a mom, holding your child is one of the greatest gifts. The fact that I got to hold Riley and not just for a minute but for 15-20 minutes! I simply can't describe how awesome and honored I felt.
LOVED holding him!
It is amazing to see how similar yet different each child with NPA is. When I met Riley I felt like he already knew who I was. I brought one of Kaitlyn's blankets with me. It's actually a prayer shawl that was given to us. Kaitlyn used to nap with it during the later stages of her life.
Jan 2012- Kaitlyn with her prayer shawl
At one point Riley's legs felt a little cool so I asked if I could put Kaitlyn's blanket on him. As soon as I put it on him, his face lit up and was all smiles and almost giggles! I really felt that he knew it was Kaitlyn's blanket or that she was there with us looking over him. It is now one of my sweetest memories.
Riley's reaction when we put Kaitlyn's prayer shawl on him
The whole weekend was beyond wonderful. Just being able to talk with Lori and her husband, Chris, about their family and day-to-day life with NPA was so comforting. I would never wish NPA on anyone but knowing that there is someone else that can truly relate to what you have been through or are going through, is a blessing.
Lori, Riley and Chris
The only thing that surprised me was how conditioned I have been to the alarms on the pulse/ox monitor. In the middle of the night, I heard it go off and it was like no time had passed and I was instantly wide awake and on full alert mode! After Kaitlyn passed away, we let Riley's family borrow our pulse/ox monitor so it IS Kaitlyn's monitor. Same sounds, same everything! I was in a room on the other side of the house with the door closed and I could tell you each morning how many times the alarm went off and when the feeding bag stopped. It is automatic.
Jan 2012, I had to include this one!
Riley is such a sweet little guy. He is much smaller than Kaitlyn was but he has so many similar facial features that Kaitlyn had. They could be siblings for sure! As I held him and when I sat next to him and played with him, I felt like I was playing with Kaitlyn too. Looking into his eyes was like looking into Kaitlyn's eyes. They are different obviously, but they "spoke" in the same way.
Lori and Chris also had a daughter named Faith, who passed away from NPA. I was fortunate enough to go visit her with them. Faith died when she was 18 months old. She caught RSV (a severe respiratory virus) and wasn't able to fight it off. Now with Riley, Lori and Chris are experiencing NPA in a whole different way. They never dealt with the same seizures and lung issues that Riley is dealing with now. Faith was also larger in size, much like Kaitlyn was at 18 months old.
Faith Robbins- July 3rd, 2005 - Feb 12th, 2007
Lori and Chris were also blessed with a son, Chris, who is a carrier like Cole is and does not have NPA. He is five years old and so incredibly sweet. It was great getting to know him and to see how much he loves and protects his little brother.
Riley and big brother Chris!
Chris
It is very interesting to see how different NPA can be in two children, Faith and Riley, even when they have identical genetic mutations. There is so much that can be learned from these children and families. We will PERSEVERE until we figure this thing out!
Me, Riley and Lori
I can't thank the Robbins family enough for letting me into their "world" and sharing both Faith and Riley with me, even if it was for only a few days. They, along with all of the NPD families, will always be a part of our family and hearts.
Please visit Faith and Riley's blog to learn more about them and show them the love that you have shown Kaitlyn and us. http://faithandriley@blogspot.com
Kaitlyn's 3rd birthday was not only celebrated here at home, but all over the country! I am amazed and proud of the lives that she has touched and continues to touch. It truly is breathtaking.
Kaitlyn was born in Texas on a hot 104 degree day. Apparently she wanted to recreate the weather here in North Carolina! She was probably giggling in heaven. Hot doesn't even begin to describe it.
The Butterflies
After church on Sunday, we stopped by Kaitlyn's grave to wish her a happy birthday and spend some quiet time with her before the butterfly release. Later that day we released the butterflies- 5 monarchs and 25 painted ladies. A HUGE THANK YOU to everyone that came out and braved the heat! You all deserve an award. The butterflies also thought the heat was ridiculous!!! Some of them didn't even want to come out!
Untying the Butterfly Carriage
At first it seemed like a bust but then a few of the younger kids picked up the butterflies and were able to hold them and put them in the shade next to the trees. They were so excited to get so up close and personal with the butterflies that I think Kaitlyn would have preferred it that way. A really neat experience for them.
Checking out the butterflies that were moved to the shade
One of the beautiful monarchs
"Just like Kaitlyn, a butterfly lights beside us like a sunbeam.
And for a brief moment its glory and beauty belong to our world. But then it flies on again, and though we wish it could have stayed, we feel so lucky to have seen it."
Butterflies around her grave were made by Chip and Makayla
As I was chasing Cole around the cemetery, I spotted a 4-leaf clover! It popped out at me. I was literally in a "fast walk" to get Cole when I just happened to look down. It's crazy. Whenever I try to find them, I never do. Since Kaitlyn has passed away, I have found SO many! I have started a journal with all of the clovers I have found.
4-leaf clover... again!
The entire day was great. We had cake at home and I wasn't upset like I was a few days earlier. I really think that all of the prayers and remembering what a blessing that day is, made it okay.
After the afternoon in the heat, we went home to cool off. I later had to run an errand and got into the SUV. I was about 5 minutes from the house when I heard fluttering! I looked up and there was a painted lady butterfly fluttering in the car! I couldn't believe my eyes! The car had been sitting in the driveway in the 104+ degree heat for a few hours. Also, the butterfly either flew into the car or was stuck on one of us when we got in the car to leave the cemetery.
A Painted Lady hanging out in the back of the SUV
I was so amazed to see this butterfly and truly felt that it was a sign from Kaitlyn. I scooped the butterfly up in my hands and let it fly away. It was a wonderful experience that I will never forget. I feel that it was a little gift for me from my sweet girl.
Here are some other pictures from around the country of friends and family who honored and remembered Kaitlyn's birthday. So awesome. Here are just a few!
Richmond, VA
Fairfax, VA
Tyler, TX
Oklahoma City, OK
Oklahoma City, OK
Weatherford, TX
Weatherford, TX
Nampa, ID
Weatherford, TX
Kaitlyn's Grandaddy, Granddot, Uncle Chris and Kelley- Fuquay-Varina, NC
