Sunday, June 29, 2014


After four years of having nurse Libby be with Jacob at night, it was time for her to move on to new adventures. Four years in the home healthcare is a long time. It was four years of good sleep for us, and four years of Jacob being completely safe at night. It turned into a deep friendship, and a love story for Jacob. Here are Libby's last words to Jacob.

Dear Jacob,
It's my last week of spending nights with you and I miss you already.

For the last four years, you and your family have been a gift in my life. I can't believe I've seen you grow up from 4 1/2 to 8 1/2! You are one strong boy!

When I first started spending nights with you it was much different than today. You were having many seizures in the night and I was constantly medicating you to try and make you feel better. Now you rarely have a seizure and sleep pretty well for the most part. I mean we've had our special time in the middle of the night when you've decided you'd rather play than sleep. But a little night play never hurt anybody and I've loved hanging out with you.

I'll miss the sounds of the night in your room. The sound of the pump, the sound of the oxygen concentrator and the sound of your breathing with the bipap on. The alarms, when your heart rate gets above 130 or your sats dip below 85. And of course your sounds. The big sighs that sometimes come out of nowhere, signaling that you're doing ok or that you are on the other side of something that was bothering you. The gurgles that may mean you need suctioning. Or those early morning squeaks when you are waking up for the day. I'll always think of you whenever I hear those sounds, reminders of our nights together.

Sunday nights were always the most fun because we got to do some "day" stuff while we were hanging out together. We got to read the endless supply of great books. We listened to music and Broncos games. We sang songs. We even got to do crafts!

I'll never forget how you loved hearing Mary Poppins sing Go To Sleep although it never really did put you to sleep! No, you slept on your own terms, when you decided it was time. Usually it was around 8:30 but sometimes it wasn't until midnight! When you woke up, at 10 or 2 or 4, you would stay up as long as you wanted to, waiting for just the right moment to fall back asleep. I loved that about you. You operated on Jacob time and despite how hard I tried, you were always in charge.

Gemma wrote about getting "The Jacobs". I know exactly what she meant because the first time I met you I was smitten. Your energy was contagious and I knew that we would become fast friends. I will always be grateful for that friendship. More than any other.

Of course I'll miss your family too. Sarah and her giggles (one of the best ticklers I know); Joakim and his handiness (I'll never forget the night he was in Sweden and Maria and I could not get the fire alarm to stop beeping and we had to call him to get instructions on how to make it stop!); and your candy loving, get-the-most-out-of-every day, wonderful mom, Maria. How lucky you are to be part of this awesome family!

Jacob, you've taught me how to be present, to be patient and enjoy each moment as it comes. You're taught me how to live my life fully and how to be loved. You've given me so much joy my friend.

Although we won't be spending regular nights together, I'll be visiting and spending some awake time with you. It will be different, of course, but we'll still get to hang out and chat about the old days! In the meantime, you be good and sleep well.

Lots of love to you,


P.S. Unfortunately our boy is sick tonight. He has adrenaline insufficiency and cortisol deficiency, and we had to give him an injection of hydrocortisone at home today. We then brought him to the ED. He is tonight resting in the PICU. Antibiotics have been started, and he is on a high dose of IV steroids to help his body produce cortisol and adrenaline. We will keep you posted, and hoping we will be home very soon again.

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