It Takes A Village

Nicholas has now been in the hospital for thirteen days. He is slowly starting to feel better and breathe easier and may be able to come home by the week's end. He is one tough little boy, fighting through this devastating virus with everything he has and he is truly our hero. Today was his best day since his admission on December 1st. He has been smiling, talking, and laughing all day and the joyful spirit is starting to come back. It feels as if the dark rain clouds are parting and the sun is shining through again and it feels absolutely wonderful.

During these last thirteen days that Nicholas has been hospitalized there have been so many people that have helped us in various ways, so I wanted to publicly thank them for all they have done.

My Mom has been amazing! She has come over to our house pretty much every single morning when Ella wakes up. She is here very early-around 5:30-6:00 a.m. which is hours before our baby rises and never complains. She dotes on our daughter all day and makes her feel like the most important toddler in the world. It is such a help to us as one of us always is with Nicholas at the hospital and Jeff has been trying to put in as many hours at work as he can.

My amazing neighbor & friend, Leslie watches Ella on the days when my mom has to work. Today she brought her son, Harry, over and the three of them baked us some delicious snicker doodle cookies.

My brother, Brett, & his girlfriend, Lisa who are home for Christmas from Florida watched Ella for us this afternoon. They also came to the hospital to visit Nicholas yesterday with my other brother, Eric, his wife, Tina, and my mom.

Several SMA moms, especially Kate Mathany who have been messaging me on facebook with tons of great information about bi-pap settings, intubation/extubation protocols, cough assist settings and the like. Kate & her daughter, Getty, also sent Nicholas a cute polar bear stuffed animal and some balloons which brought a huge smile to his face.

My mother-in-law, Joni who is here from Arizona for the birth of her seventh grandchild. She has been to the hospital to see Nicholas three times in the last week and has been such an amazing emotional support for me.

My husband Jeff has been an absolutely perfect man in these last thirteen days. We promised for better or worse and parenting a terminally ill child is my idea of the worst thing that could ever happen in a marriage. Many marriages wouldn't survive a challenge such as ours, but our marriage has only gotten stronger. We rely on each other emotionally and are there to support one another through the most difficult decisions we have ever had to make. My husband has been staying at the hospital with Nicholas as much as he possibly can and spending quality time with our daughter when he is home. God gave me the most loving, wonderful husband and for that I am eternally grateful. I could not imagine taking this journey with anyone else.

We are so blessed to have so many people who care so deeply for our family of four! It definitely takes a village in tough times like these. Please continue praying that Nicholas will be fully recovered and able to return home very soon.