Sunday, August 30, 2015

Precious Gabriel

Hard to find words for this. For now, sharing Aaron's beautiful words posted on Facebook:
Dear friends,
Our precious and Mighty Gabriel changed form on Thursday August 27.
He spent a beautiful day outside with us in the sunshine, and in the evening he passed very peacefully in our loving arms.
Gabriel was with us so briefly, but he will be remembered and loved always.
A memorial event to honor him and celebrate his life will be held on Sunday September 6 at 1pm at the Sorenson-Lockwood Funeral Home in Grayling, Michigan.
Thank you to those who have reached out to us since Thursday. It means so much to us to have your loving words and support.

Monday, August 24, 2015

Our boy is 2 months old!

Happy birthday our love!

He has been very fussy on and off between sleeping, and periods of more work of breathing, and many episodes of lower oxygen levels with that fussiness. It could be the general decline he is on, or colic, or just feeling blue because of the dreary day. He's an infant, and will have variable moods. And because of the SMA and his respiratory failure, he will have good and bad days. We are hoping for a good night and a little more of play and games tomorrow.

Sunday, August 23, 2015

Baby at the Beach

Friday we were blessed with a beautiful day. Our third visitor of the day was a photographer, who generously shared her time to fill a goal of ours, to have photos of Eleanor and Gabriel and we were able to do so outside in our front lawn. The day we went to the ER originally, Gabriel, Eleanor and Joanna had been outside playing on the grass together. It was so nice to be back there making more memories.
We've been cautious about outside time, but Saturday was so beautiful we wanted to chance it by going to our lake park. Gathered Gabriel onto his wagon, and crossed the yard, crossed the road, and stepped out from the circle of fear and anxiety into the sun.
We had a Baby at the Beach!!
Gabriel slept most of that hour and a half, but he was comfortable. His eyes fluttered open a few times to see his parents, the sky, and the dappled light on the leaves above. Aaron, Jo, and Grandma Lucie breathed in the fresh air, felt the breeze, and relaxed a little. Eleanor came home with her Papa and Bubbie, and then she played and jumped in the water as kids are supposed to do in the summer.
Today, Gabriel had a good afternoon. He had quiet awake time and engaged with his eyes and lifted his eyebrows at mom to show he was interested. He moved his arms more than usual and lightly gripped and moved a little ball; it was slight but more play than we've done before. And he smiled, almost laughed, at the nurse who was wiping his lips and it became a game. Also a first. Warms a mother's heart.

Thursday, August 20, 2015

One Week Home

Gabriel turned 8 weeks old yesterday, and today marks our 1 week home. We've been thinking about how much can happen in a circle of the sun.
Gabriel had some morning awake time and some smiles, then a good nap. His Papa played piano-- a jazzy version of "Summertime." Mama got him out of bed to hold twice and near the window for sunset. And because he is a normal baby despite the vent, he still had a bit of a grumpy evening, but a little shorter than other days.
We have adjusted to being home slowly but surely, getting more used to his needs and the schedule of his cares. It's a balance between his care, Eleanor's exuberance and need for us, and our own needs. We've had to have some hard conversations lately. It's not easy. We are thankful for help from family, friends, and neighbors.

Monday, August 17, 2015

Mighty Gabriel's New Digs

Sweet Gabriel has the biggest bedroom in the house: our sunroom. He has walls of windows to light his days, and a ceiling fan to watch. There is a constant hum-puff of the air compressor for white noise, and AC for the hot days; when it cools down we'll just keep the windows open. He loves his fox-mirror from CureSMA, raising his eyebrows at it. Today he made a new friend, smiley-balloon and gave it a big smile right back.
We pictured summer as being outside all day, but have been inside much of it. Yesterday we made our first step of being mobile with the baby and the vent, and rolled ourself to the back door and just outside to enjoy the trees and breeze. Gabriel was wide-eyed and rewarded his parents with smiles. He breathed a bit fast, but some of that could have been excitement. He slept well.

Saturday, August 15, 2015


Thursday marked the end of our hospital stay, 30 days. Packed, organized, and feeling ready with the care we can offer Gabriel at home.
We met with many many people in the three days prior to discharge. We recognize how fast it came together and how much effort was made for us.
We said goodbye to many who helped care for Gabriel and our whole family. We are forever grateful for that care and connection.
We rode home in an ambulance without incident, found home support services waiting for us and entered our home. We breathed in home. We breathed in our family. We breathed in life.
Jo's new motto is "be grateful for each breath." We are grateful for the time we have with Gabriel, each breath he has in his life.
This is a dance, we are not in charge. Gabriel is leading.
Thank you to my brother for support: "you two are listening close. This is what bravery and courage and love is."
Bravery is not the absence of fear. It's being afraid and doing it anyway. Gabriel is doing his part.
We will do our best.

Tuesday, August 11, 2015

Another Stable Day

Another stable day for Mighty Gabriel. Joy.

We learned more about the machines that help support Gabriel. We also met with our care manager who is moving mountains to get all of this arranged so quickly. She is so skilled, and so caring.
We are so eager to go home, but we want to do it right. We will stay until Thursday to practice then hopefully get home. It's a short time to get all the practice, but we will also have help at home.
Over the past 4 weeks we have had so many kind, helpful, and caring brilliant people help take care of Gabriel. We are so grateful and touched. And in the past week we have also had many of them stop by our room again for social visits, to check in on this little person who has touched their hearts.
We will remember.