The purpose of this blog is to keep everyone updated on our family and the management of Eve's mitochondrial disease.
Tuesday, December 29, 2015
Monday, December 28, 2015
We're hanging in there. We had a quiet Christmas (just the three of us). I'll post some pictures soon. Seamus is coping pretty well. Most of the time he's doing great, but every once in a while he gets very sad. He's been spending much more time happy than he did right after she died.
Just now I was typing an email response to Hospice (they had some questions) and I had tears running down my cheek. As if he was reading my mind, Seamus woke up from his nap crying loudly. He said he missed "Sisty" (what he's been calling her since she died) and that Sisty will be gone his whole life. I hugged him and told him I missed her, too. I'm wondering if it's starting to sink in that she's not coming back. We decided to watch Peppa Pig together on the couch. He seems calm now.
Just now I was typing an email response to Hospice (they had some questions) and I had tears running down my cheek. As if he was reading my mind, Seamus woke up from his nap crying loudly. He said he missed "Sisty" (what he's been calling her since she died) and that Sisty will be gone his whole life. I hugged him and told him I missed her, too. I'm wondering if it's starting to sink in that she's not coming back. We decided to watch Peppa Pig together on the couch. He seems calm now.
Wednesday, December 2, 2015
Wednesday, November 25, 2015
Thursday, November 19, 2015
Happy birthday, Jim!
How are we dong? We're hanging in there. That's become my standard response. But it's true. I wouldn't say I'm good, but I'm surviving. We have grieved for 8 years since her diagnosis, so this didn't come as a shock. But it's hard. I think we're functioning extremely well, all things considered. We keep the grieving private. This is the first birthday we celebrated in 10 years without her. And that's tough. I know that each holiday or event in the next year will be particularly tough as it will be the first of its kind without her. Seamus misses her very much. Here is an email that I got from his music teacher today. I think it explains how he's doing very well.
I want to share with you a lovely story about Seamus that happened
in Music Class yesterday. He is such a dear little boy and I am so
thankful to be teaching him music again this year. He loves to sing and
learn new songs and is always full of enthusiasm!
We
were discussing the Pillar of Gratitude and I asked each child to think
of something they are thankful for and we began to sing a song" Thanks A
Lot." Seamus was sitting next to me and he said "I am thankful for my
sister" and began to cry. He climbed up on my lap and I hugged him and
comforted him. All the children were quiet and looking so tenderly at
Seamus. A little girl went and got him a kleenex and we sat quietly
together. We continued singing around the circle and each child shared
what they are thankful for. Three children said such loving words to
Seamus:
"I am thankful for Seamus."
"I am thankful for Seamus and he is such a special friend and I love to play with him."
"I am thankful for Seamus's sister."
These
three children have known Seamus for over a year and they looked at him
with such love. I told him that we all love him so much. He dried his
eyes, climbed down from my lap and walked peacefully with his friends
to the bathroom to get ready for snack.
This
was such a special moment and I wanted you to know how Seamus was loved
by his friends and how warmly he received that love yesterday.
Monday, November 9, 2015
Aiming high
me: Seamus, what are going to be when you grow up?
Seamus: A f(mumble)er.
Me: A fighter?
Seamus: No. A farter!!!!
Son, you've gotten a very early start on that career.
Seamus: A f(mumble)er.
Me: A fighter?
Seamus: No. A farter!!!!
Son, you've gotten a very early start on that career.
Sunday, October 4, 2015
We're hanging in there. I am grateful for Seamus keeping us so busy. Also, I am lucky enough to have some really great students this semester. I'm trudging through the thank you notes for the enormous amount of condolences, love, and support that we received. I fear that I will miss some, so please know that we are so thankful. We are so grateful for the amazing amount of donations that were made to UMDF and to Hospice Care of the Berkshires. You are helping people who are suffering like Eve did. You are providing care that is so important for both the patient and the family, just like re received. So thank you from the bottom of my heart.
I've been procrastinating looking at an envelope of cards from some of Eve's classmates. I looked at about three when I got the envelope right after her death, but it was too emotional. Yesterday, I gathered the strength and had a good cry. These kids are so sweet. Here are three of the four cards that included a drawing of Eve. I just love that they drew her without her wheelchair. When these children were in preschool with Eve, their teacher asked if they knew anyone in a wheelchair and they said no. While I think that they continued to focus on Eve and not on her chair, I'm sure these drawings were intentional.
I've been procrastinating looking at an envelope of cards from some of Eve's classmates. I looked at about three when I got the envelope right after her death, but it was too emotional. Yesterday, I gathered the strength and had a good cry. These kids are so sweet. Here are three of the four cards that included a drawing of Eve. I just love that they drew her without her wheelchair. When these children were in preschool with Eve, their teacher asked if they knew anyone in a wheelchair and they said no. While I think that they continued to focus on Eve and not on her chair, I'm sure these drawings were intentional.
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