A Hard Year

Hello Everyone! 

I wanted to write a little update about how things are going. This year has been difficult for our family. The hardest yet, I dare say. We have been in survival mode a lot of the time, just getting by the best we could. If you saw the last update, we had a different birth experience for our new baby than we hoped. My recovery was a lot slower than my other births, but Lucas recovered pretty much as soon as we got home. So many family members helped us care for Laya, Eli and Evan during the months after. It was very touching and helpful! 

In March we received the genetic test results of Lucas and found out he has GM1 just like his brothers. That was hard. We were really hoping that he would not have to endure that! Unfortunately, it is what it is. And although we knew it was a real possibility, we still had to wrap our minds around it. We were definitely disappointed, very sad. It's been a little while since then and we have been able to process it a bit more now. We are sincerely grateful for him and we are in it, whatever the road may be. 

 

Then in April, things started to get pretty bad with Eli and his quality of life just wasn't good. This has been off and on all year since the fall. He was continuing to get thinner and thinner, just not able to handle food anymore. We stopped his tube feedings, since he wasn't getting much anyway, to allow him to pass on and stop suffering. It was the worst thing. I don't really want to attempt to describe on here what it was like as he slowly died, but I will say that we were there for him and did the best we could to create a nice, beautiful and comforting environment for him. He was an angel and a fighter to the bitter end. 

In May we had a beautiful, very small, funeral for Eli. All went well and I really don't think it could have gone any better. We were allowed to have 20 people, so pretty much family and a few respite providers. Here is a music video of the day. 

I personally feel a bit wounded by everything that happened this year, like I have been physically stabbed, not to be overly dramatic, but I really felt like I had an open wound. And slowly over the months, that wound has been healing. It will have a deep scar I think, but that's ok. I never want to forget the hard things. They make the joyous parts of life more meaningful. (I do need to add that while I do feel pained and saddened, I also feel very grateful to God for all he has done for our family and myself personally.) 

The rest of our family is doing well, just normal ups and downs of life I think. We continue to enjoy life and cry and miss Eli and take care of each other, and mess up and get angry and upset and repent and forgive and have hopes and dreams and frustrations and triumphs and its all good. 

Something I have learned this year is that, again, those suffering moments that we sometimes have in life truly open up our hearts and souls, expanding them and cracking them open to make room for more love, a greater capacity for joy and deeper expansion of peace. 

So... maybe we should all embrace the tough and allow it to bless us in the ways that it can!

This is the only family picture we have of all of our children together before Eli passed away. The shirts were a gift from Eli's home-bound school provider - Christina. 

Lucas 7 months old

Evan - 8 years old

Painting of Eli - gift from his respite providers

Laya - 13 years old.