Thursday, July 19, 2012

Georgia On My Mind (from Kaitlyn's Korner)

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.


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!


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.


  1. Deanna - thank you for posting this here too. I'm glad you both were able to spend time together.

  2. Thinking of you all every day and sending all of our love and prayers from Concord, NC. Riley is just as cute as he can be and has such a sweet little face! You all are leaving such a print on my heart!!!