Wednesday we visited the cardiologist. I went by myself with the 2 boys, and I got a picture of what it will be like on the day of the surgery. They did a few tests on Justin and one thing they did was a chest x-ray. Since I had Travis and he couldn't go in the room during the x-ray, I had to let them take Justin and do it without me. I had to stand in the hall and hear him cry. That was very hard, and I know it will be ten times worse the day of the surgery. The doctor said that more fluid had accumulated on his lungs, but not enough to warrant giving him the diuretic medicine. She said that she is going to e-mail the surgeon to say that if a surgery date become available earlier that she wouldn't mind if he went ahead and gave us the time. All in all it was a good appointment. We have to go back July 14 for another echo and appointment with her. Then it's on to the date of the surgery. If we do go in for the surgery early, she said that it's okay if we don't get the echo because they always do one before the surgery in the operating room.
Then on Thursday we went to a meeting where a lawyer discussed estate planning for the disabled. Mostly it was about special needs trusts (SNTs) and guardianships. I am OVERWHELMED to say the least and I left the meeting feeling to totally helpless again. In essence I am relying on Social Security and the government to care for my child when I am gone.
The lawyer told a story about her daughter, who has DS which is how she got into the business of SNTs. She said that she was going out to school one day and she wanted to take her jacket when it was over 100 degrees and she couldn't understand why she needed the jacket. Her daughter kept saying what her mother thought was "tortilla" and she kept asking and trying to figure what was going on and she finally got that it was cold in the "cafeteria". She said that she shuddered thinking about how someone else wouldn't take the time to figure out what she was trying to say and that she would have been cold every day in the cafeteria.
I don't understand how God could send me a child who needs so much care and then make it so I cannot provide the care. No, that's not right. I know that I am God's instrument for caring for Justin, but really it is God who cares for Justin all along. My humanness makes me want to protect him, but no person can do that for anyone else no matter what. I don't want Travis to be hurt either, but I know he will. I just pray that all of things that happen help him to grow closer to God. That is my prayer for Justin too, but of course in a little different way. I pray that the people he touches will see God. Everything that happens is a way to show God's glory. It comes down to: Do I believe that God can use Justin and his circumstances to show God's glory? Yes, I do. Some of that will be in my response to Justin and his life. That is promising for me. That gives me hope.
And the raccoons have been putting on quite a show for us the past few days. Randy decided that he didn't want our friend to have all the fun taking apart the deck, so he started attacking it this past weekend. Then we didn't see them for a couple of days, but then they returned and had a little party on the deck. I got a picture of a few of them:
Mama raccoon is sitting on the stump of the tree we cut down and her babies are peaking their heads out next to the stump. That is where they get up and down under the deck. The babies look like coonskin hats when they are running around.
And here are my boys. Travis likes playing with Justin, maybe too much! Travis has never had a security object, except when he sucks his thumb he likes holding on to my finger. Now that I am nursing Justin so often my hands are busy so he holds my toe, or even better, JUSTIN'S toe. That has to be distracting when you are eating. He likes Justin's toes...
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