Saturday, June 8, 2013

Twinkle Twinkle...

...Little Star...

Jenn, Henry's teacher came over on Wednesday. She brought lots of fun things for Henry to play with, including a big red button with a recording from all of his teachers.

He must have pushed the button a hundred times on Wednesday. Laughing and kicking while the ladies sang.

On Thursday, Casey came and checked Henry's vitals after we had a pretty rough night. Henry had been in pain and sleepless. We determined that Henry's infection was causing a decline and that his end would be sooner than we originally thought. We made phone calls, gathered our family and friends and monitored Henry's vitals for more evidence of his condition.  His vitals were up and down and up and down all day. Weak heart rate, fluctuating temp, slow respirations.
His teachers came, sang Twinkle Twinkle little star and a couple of other of his classroom favorites. Heart breaking and bittersweet. My sweet boy slept while they surrounded his bed and celebrated his love of music.

Because Noah and I were uncertain of how long we would have Henry, we prepared a civil ceremony with the Hospice chaplain, Rebecca. We had set the date, rented the venue and secured the catering and flowers just the day before. Our plans always seem to be a waste of time. Luckily we had the presence of mind to waive the waiting period for the marriage licence. and were able to get married without much going wrong. It wasn't a typical wedding. Vigils and weddings don't usually coexist, but we wanted Henry to be a part of it. We shared our vows with a house full of people, some were strangers to us, but all of them loved Henry. The dog howled from the bathroom, the little kids played with pom poms and yelled out funny things while we exchanged our promises for a lasting and life long love. We laughed, cried and laughed again.
Friday we saw Henry plateau. Low respirations and weak heart rate stayed the same. He continues to decline, but at a slow rate. We are monitoring his temp and vitals on the hour.

We have so many people to thank. We are grateful for all of the support. Financial support, emotional support and the constant stream of food being delivered. We have felt like we were on an island for so long, it's strange and overwhelming to be on the receiving end of so much love and kindness.

We want to say a special thank you to Casey for sticking with us and for answering our questions. We'd also like to thank his wife and children for sharing him with us. We are grateful and understand the sacrifice.

Anastasia, Zane and Lew are a here too. Not wanting to leave. Not wanting to miss anything. It's a stressful and bitter time. They are wise little people. Cuddling up with Henry in his bed, singing songs to him and trying to soak up and give as much love as possible. They are brave and sweet. Thank you to all of the lovely people who have shown up for them too. Thanks for loving my children through this.

There are a few events planned, for fundraising and celebrations. I will post another blog with all of the info for those by days end.


  1. I wish I could be there, to share tears, and hug you all tightly. I sit here with tears flowing at the sadness of this all, yet with hope, for Henry to be pain free. His healing will be complete, but yours will just begin. I so admire your strength, honesty, passion to bring awareness about CP. You guys rock. we pray for you daily. we love henry, though we have never met him- thanks to your heart to share him with the world.

  2. My husband and I sat in vigil for our daughter, knowing how it would end. My heart is with you and your family, please know that. There just aren't any good words at a time like this.