That is the one word that describes how things are... bittersweet.
I've been at such a loss for words lately. I don't know how I feel each day. Some days I'm numb, sad, angry, and okay all at the same time or at different times, so it has been difficult to try to and explain what's been going on.
When Kaitlyn was diagnosed almost 2 years ago, I dropped everything and she was the priority. I was defined by her. I have no regrets and would do it all over again for her in a heartbeat. Now though, she isn't here with us and "just like that" things have completely changed.
A collection of Kaitlyn's favorite things at the service
Chip is back in the office at work. I am home with my mom and Cole. My mom and Chip's mom have been taking care of Cole so much that it's been really difficult seeing how much I have missed out on. I know that I did the right thing by being with Kaitlyn but it's hard when someone else has to tell you about what your child normally does or doesn't do. It's getting easier every day as I take care of him and take him out on play dates.
Egg hunt at our friends' house
Having so much fun playing with other kids
Playing house with Molly Belle
One thing that has been really great is his excitement in seeing other kids and being around them. Everyone in our family has had to make sacrifices over the past 2 years, even Cole. He couldn't go to play dates or even church because if he got sick, Kaitlyn would get sick. The risk wasn't worth the benefit. Now we are trying to expose him to lots of activities and someone even donated a 7-week Music Together Class for him on Saturdays! He LOVES music and we are really looking forward to it.
Pushing cousin Daniel
There is definitely a certain level of guilt when I feel happy about things, but I know that it will get better with time.
Easter
Cole and cousin Daniel
I've been taking really long walks in the neighborhood lately, which has helped to clear my mind and process things.
We are so blessed to have Cole, I can't imagine what it would be like without him. He is my little prince charming and keeps me busy and gives me purpose and strength.
My prince charming!
He's just too cute not to kiss!
Molly Belle agreed with me!
Easter was really tough for me. We went and visited Kaitlyn's grave. We have rose bushes in front of our house and there was one lone red rose. I knew I had to take it to her. I kept thinking that there must be a huge celebration in heaven that day and Kaitlyn was probably dancing and singing! That made me really happy.
We then went to Chip's parents' house for Easter lunch and an egg hunt with family. When we first moved to NC, we lived in their house for about 6 months before we moved into our new home. Kaitlyn was at her peak, developmentally, when we lived with them so there are A LOT of memories in their house. Good ones of her laughing and playing and me being pregnant with Cole and us taking pictures of my growing belly together. Again, bittersweet. I had a knot in my stomach almost the whole time remembering her in her high chair as I helped get lunch ready with Chip's mom.
In Kaitlyn's room at Jane and Roger's house
My Cole-Belly was getting bigger!
I still haven't been upstairs where our rooms were. It's odd. You would think I'd be more upset in our house than theirs but theirs is where SHE was herself and happy. Where the disease hadn't taken over yet.
Yes that is baby food on her foot!
She LOVED french fries (mostly licking the salt off them)
1st birthday party at Jane and Roger's house
Wow... this is how I will always remember her
Sitting!
I miss her and tell her I love her every day, multiple times a day. Each day is a new day and honestly, I don't know how I will feel on any given day. Some days I feel numb, some days I feel okay. It is much different than I ever expected.
After Kaitlyn was buried, I visited her grave the next day, by myself, and found this! How cool!
4 leaf clover and Kaitlyn's grave site in the background
I ended up framing the clover and it sits right next to Kaitlyn's photo on my bedside table.
Doesn't the straw look like a heart around Kaitlyn and her flowers?
A week later, Chip and I went again to the cemetery and funeral home to design Kaitlyn's burial marker. After our meeting, we took a stroll across to the cemetery to visit our sweet girl. I talked to Kaitlyn and told her that I love her and miss her but am happy that she is free from her body now and to not worry about us. I then walked over to Baby Land (which still had the pretty pink bows on the gate posts!) and looked down and found this! This clover was much bigger than the first one. It definitely is a special place. Perfect for Kaitlyn.
2nd 4-leaf clover!
It has been a difficult transition for all of us. Chip went back to work on Monday and is very busy and now I am trying to adapt to our new life without Kaitlyn. For many months, I didn't leave the house, let alone the room because I was so afraid of what might happen to Kaitlyn. Now I can go anywhere and take care of Cole whenever I want and it makes me feel a little sick because she's gone and not here anymore. You would think it would be easy with only 1 child, but it's been really difficult trying to become a "normal" family again.
Love the dogwoods and there are even wind chimes over by the trees. Simply perfect.
I plan on continuing this blog. I'm NOT going to stop writing so please keep checking in and subscribe to the automatic email. I may not write as often but I will still be going strong to help others and keep Kaitlyn's voice alive.
Really pretty and peaceful! There is an arbor at the top of the hill.
I do plan on writing a book about NPA with the help of NPA experts, like Dr. Melissa Wasserstein, about the medical facts of NPA and helping families and healthcare professionals understand more thoroughly what this disease is and does to the body. The second large component of the book is "what to expect" and "what happened". Stories and lessons learned from parents who have had or have a child with NPA. I don't mean to not include the other types of NP. Hopefully one day, I will be able to work on the other types too. NPA is so rare that these families really need something useful and practical to help them understand better and not feel so alone.
Can you find the butterflies?
Thank you to everyone who has sent us flowers, cards, donations, emails, food, etc. It has meant so much to us! I apologize in advance if I don't respond back to emails as quickly. Things are kinda hectic around here trying to get used to everything and having over 1,000 unread emails is pretty daunting, but in a good way because I know that Kaitlyn touched so many people's hearts!
Please continue to pray for our other NPA friends, Wylder, Riley, Trek and Jacob. Here are their blogs:
