When my heart is overwhelmemd...

"From the ends of the earth I shall cry unto Thee. When my heart is overwhelmed..."

We recently found out that our daughter suffered from hypoxia several years ago. Hypoxia is a lack of oxygen to the brain causing brain damage. We only found this out, because we requested to see a neurologist, because she seemed to be losing some of what she had already learned. He ran an MRI, and the brain damage showed up on the MRI.

Twelve years ago, she ran out of oxygen at home. The delivery man had come out the regular delivery day, but he refused to fill her oxygen tank. He said that the tank was full, but it ran out completely some time in the middle of the night. We're not sure what time it ran out, but we called the oxygen company immediately when we found out.

It was a nightmare! Because he'd come out the day before, they thought I was lying about her running out, and it took several phone calls over a 5 hour period for them to show up and fill her oxygen tank. In each of the 8 phone calls over that 5 hour period, they made it sound as though they were right around the corner and would be right there. She was hospitalized 2 days later.

I'm sure people wonder how we didn't pick up on this before, considering that it definitely affected her. Well, we had picked up on it. We just didn't realize that it was from her oxygen running out that day. She has a rare genetic condition. She's one of only 2 in the world that have it. The other one that has it is her sister. It's resulted in multiple developmental delays all across the board in both of them. But the daughter who ran out of oxygen is definitely more delayed than her sister.

She's more physically delayed as well as mentally. She cannot coordinate her hands enough to wash her hair. Even the simple motion of washing her hands is difficult for her, and her hands tend to be open palms when she washes. Her coordination is off all the way around. As a result, she will never be able to live on her own w/minimal assistance like her sister. Instead, she would need to be placed in an institution/home that could provide 100% of her needs. 

Finding out has been devastating. Not because we haven't loved and accepted our children for who they are. We absolutely have, and we adore them! But it's been crushing, because we are now grieving what she could have been.  How much easier her life might have been. And in that grief also lies anger, hurt, and potential bitterness. We are just doing what we can to process all of this right now and not let it turn into a bitterness. That won't do any of us any good.

Still...It's not going to be easy.

"...Lead me to the Rock that is greater than I." Psalm 61:2