Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Friday, October 09, 2015

This is tough

Angela and I arrived home tonight, just a few minutes after 6:00. Dean and the kids had just sat down to dinner, the aroma of hamburgers and french fries heavy in the air. I was thankful Angela had just had a feeding 30 minutes prior.

Angela went around the table, hugging every one of her little sibs (and Tyler too!), showing each of them her new appendage. I excused myself from the room for a moment, and when I returned she had taken her place at the table. "Mmm French fries. My favorite!"

I gave her a gentle hug. "Remember sweetie? You're not able to eat french fries anymore. Eating with your mouth is making you very sick, so you're eating through your tube instead."

"I can't have a hamburger?"

"No honey. I'm sorry you cannot. Come downstairs with me and we'll find your pajamas."

"No." she said in the saddest voice I have ever heard, then hung her chin on her chest and sobbed great choking sobs as the other kids continued to eat around her.

Oh my sweet child. How do I take away what we all love the most? Something we all find such joy in every single day of our lives?

Tonight she is sleeping in our bed with me. Every time I check in on her, I'm stunned by her color, or lack of. She is white as a sheet with giant dark circles around her eyes. Every time I check in on her, for my own piece of mind, I wait to see her taking breaths.

God, I don't know what you have in store for us. I don't like that my child is being tormented by food she cannot have. But I thank you. I thank you for a formula that should bring her to the healthiest state of her entire life. I thank you for doctors who worked. and are working, to find solutions for our girl. 


Tigger (aka Karyn) said...

My heart is breaking for her. Mealtime is such a significant family time as well as a time for savouring ond of the great delights on earth - food. Praying that you can work it so she can join the family part and get used to living without the food part. It is basically like losing one of your senses. It is huge :(

Stacy Hanzely said...

Literal tears shed for you this morning reading this post. Praying for wisdom on your part and health for Angela. I just cannot imagine!!! ((HUGS))

Belinda Beetham said...

Oh Leah such hard times.You are an amazing woman and our father must be so proud to have you caring for Angela.I prey that this adjustment for her will not be too hard and that she will find new joys .

Relle said...

My heart broke for both of you. It is hard when your child cries with such sadness and pain. Is there something maybe like colouring in she could do at the table with the family while you have dinner and still be part of the conversation.

Cindy said...

Oh, this makes my heart hurt. After watching the Going Home video, I agree with you, she did look tired! I'm glad the surgery went well.