Wednesday, November 5, 2014


In December of 2009, we came home with Jacob after a 60 days stay at Children's. We didn't know if he would make it that winter. Jacob's CPR directive was placed in the kitchen drawer, just in case we needed it. We were a family in crisis. This is the time nurse Gemma joined our family. She was a new grad. She was giving one hour of training, and then off she went to take care of our boy. I remember being at work her first day on the job. Joakim was working at home to keep an eye on her. I remember skyping Joakim asking how things were going. He said she was doing well. I gave out a sigh of relief.

I have been told that Gemma stained our carpet when she started, I have heard that she didn't know how to give Jacob his meds via the g-tube and simply mixed them with his formula in his feeding bag. I vaguely remember that we all sucked at deep suctioning Jacob. The funny thing is that I don't remember any of this. What I remember is a young newly graduated nurse who gave it her all to get to know Jacob and all his care. She never ever scared away from anything she had to learn and do. I will never forget us having to prime our own IV antibiotics and give them to Jacob with the help of gravity. It is just not something you should do at home, but we did!

Gemma has a big heart, and she sure gave Jacob her whole heart. She always wanted the absolute best for Jacob from making sure he was always properly dressed (he is her handsome), always making sure Jacob was pushed in therapies, always included in all school activities, enabling Jacob to make friends, making sure he always had his own special gifts for his family for any special occasion. They created their own times of crafting, listening to Disney radio, reading endless books, watching movies, and going for long walks.

Gemma gave Joakim and I normalcy in our not so normal lives. Over the years, we learned to trust Gemma as much as we trust ourselves with our boy. We could come and go in our home always knowing Jacob was in excellent care. It gave us the freedom to participate in Sarah's life, and making sure she got the attention she needed. One time, we were all at a wedding up in Evergreen with no cell phone service. Joakim called Gemma on the land line to make sure everything was fine. We found out she was at Children's with Jacob, since he had gotten sick and needed the PICU. Every time Jacob was in the hospital, we knew Gemma would make a special visit to see our boy.

Gemma was never "just" nurse Gemma. She became part of our family. Sarah adores Gemma. She loved hanging on the couch in Jacob's room while Gemma was attending to Jacob. Sarah didn't understand why Gemma actually had to leave. Why didn't she just move in to our basement and live there? In that way, Sarah would have access to Gemma whenever she wanted. For Joakim and I, she became a complete partner in caring for Jacob. There are so many times where we simply didn't know what was going on with Jacob. Together, we ruled out one thing after the next, and we always valued Gemma's insight to what was going on with our boy. And to me, she became a dear friend. Someone I have confided in, laughed with, and shared Jacob's ups and downs with. Someone who truly gets our boy, and what he means to us all.

It almost feels unreal to me, but today was Gemma's last shift with Jacob. So many tears...Gemma is moving on to a new chapter of her life. We are so fortunate to have had her in our lives for almost 6 years. Two thirds of Jacob's life, and half of Sarah's life. We will all miss her dearly in our daily lives, but we know this is not goodbye. We just won't see her as often as we would like to.

I have always embraced change. I know change happens for a reason. This change was not as easy for me to embrace for all the reasons I have stated above. We are very fortunate to have nurse Shereen replace Gemma. She has worked nights with Jacob since July, so we have gotten to know each other over the last couple of months. She is an excellent nurse, and she has the right kind of energy to make Jacob's life full. I honestly can't think of a better replacement.

Change is in the air, and it is time to embrace it. Love, Maria.

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