Family

Justin met his cousin Lauren today. She is Randy's brother's daughter, and she is about 6 weeks older than Justin. We celebrated Randy's mother's birthday and the whole family got together. It was a lot of fun. I really enjoyed meeting Lauren and playing with her a little bit. It was a short trip for them, so we hope we can spend some more time sometime soon. Lauren and Justin looked at each other, and Lauren really wanted to touch him and see what he was all about.

We got a picture of all the cousins for Me-Me and Pop. Me-Me has been DYING to get some pictures in her "grandchildren" picture frame. It was quite the photo session, with several cameras shooting from various angles. I am sure it will be an event that is repeated many times over the coming years!

Mountain

When Justin was diagnosed we had so many questions so we decided to write them in a notebook so we wouldn't forget them. Then we would have the answers if we couldn't remember what the doctor had said. We thought we were being smart to keep it together. But then every place started giving us folders with information in it and we didn't want it to fall out of the notebook, so we started a binder. I even divided up into sections to keep similar stuff together. I thought I was being smart to keep it together. But then we had all of the explanation of benefits (EOBs) sheets from the insurance company that we had to reference from time to time as we are fighting insurance on various things. And all of the receipts from the different doctors. So I started a file folder with all those papers in. I thought I was being smart to keep it together. Now the notebook, the binder, and the file folder are FULL and we are only 3 months in and the heart surgery hasn't even taken place yet! My desk is overflowing with paperwork and it just keep coming. "Fill this out and keep a copy for your records," they all say. Where am I supposed to put a copy?! We are going to have to add on rooms for all the moutains of paperwork! So, we agree that the perfect gift for someone receiving a diagnosis of Down syndrome is a file cabinet!

The Week in Review

OK, so really just the past couple of days, but you get the picture...


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...

Therapy

We had our twice monthly therapy with our ECI-Keep Pace therapist. For those of you not in Texas, it's the state program that provides assistance for children ages birth to 3 who are developmentally delayed in some way or another. Justin automatically qualifies based on the Down diagnosis. They provide family-based support and physical, speech, occupational, and cognitive therapy. They have tons of programs, including one for Travis when he gets older as the sibling of a disabled child. And they come to my house! Anyway, we have Lucy, and she is great. She makes me feel so wonderful every time she comes. She is very impressed with his progress. He can track objects from side to side and he is lifting his head a lot. He kept it up for almost a minute today! She is also working on his speech therapy, which at this age is mouth and tongue movements. She works with the binky and tries to get him to suck it in different ways. She gives us lots of things to practice, but they really are play-type things. His endurance was better today, but I think it was because he woke up from a 3 hour nap right before she arrived!

Heart Surgery

I have been thinking lately about our upcoming appointment with the surgeon. I think the first thing I want to do is give him a huge hug. I am SO GLAD that there are people who dedicate themselves to fixing the heart problems of the very littlest patients. There are four surgeons who only do heart surgery on children at the hospital. For the first time in my life I feel like I am faced with a problem that there is NO CONCEIVABLE WAY that I can fix. I cannot fix Justin's heart. I have to rely on someone else and trust him. I mean really, think about it. If my car breaks down, I can buy a new one. If I burn dinner, I can order a pizza. If raccoons move in under my deck, I can tear the deck down. I am a flight attendant and I even joke with the pilots that I can probably land the airplane if needed with all the movies I have seen. (They are still not both allowed to eat the fish for dinner though; it's ALWAYS the fish!) I can make it though life without ever using the services of an interior decorator, a personal trainer, or a financial planner. But I need the surgeon in a way that I have never felt like I have needed anyone before. I don't feel hopeless, but helpless. Maybe it's because it's my baby, but whatever it is, I love our surgeon already.

A Little of This and A Little of That

Yesterday was a big day for us. Or should I say, last night was a big night for us. Travis spent the night with his Me-Me and Pop last night for the first time. I know it was harder for us than for him. He is not a very good sleeper and he often wakes up before 6 am, so we were excited to be able to sleep in for the first time in the 2 plus years since Travis' birth. We thought we might get a call to get him in the middle of the night because whenever we are away from home, Travis tends to wake up even more during the night. I know that whenever Travis spends the day with his grandparents they sleep VERY well that night, so I think it will be safe to assume that they will sleep very well for a couple nights after this!

I had lunch yesterday with a woman who used to attend our church whose son has DS. He is now 25 and works at Kroger bagging groceries. She shared a lot about his growing up and high school and the emotions that she has experienced. At the time he was born, there weren't as many opportunities for children like her son, and she was encouraged to send him to an institution and not expect much from him. She brought pictures for me to see and she said that it was a little hard to go through everything just because it was a bit like reliving it again. I just watched a video from his high school days as manager of the football and basketball teams and it was amazing the things he has done. He was featured as athlete of the week on a local TV station even though he never played a down of football. How can we say that he cannot accomplish much? The message of Jesus Christ was spread to hundreds and maybe thousands through him. Everyone spoke of his encouraging words, and his prayers for them. I cannot help but be lifted up knowing how endless the opportunities are for our precious son.

We are in the midst of a small baby boom at our church. We had 2 more babies born this week. There will be about 12 babies born between March and September by the time we are done. It is hard to see and hear. Just a bit. I can't help but be sad as everyone is enjoying their healthy babies. I don't want anyone not to share their joys and milestone accomplishments with us, but it still hurts. Just a bit. I can't say it will get easier. I don't know. I love that Justin will have other children his age to push him and encourage him, but part of me cries inside. Just a bit.

And then there's the coons: We have decided to attack them head on and take away their home. A family friend has agreed to tear down the deck and re sod the area. Yeah! He will be doing it about the time of Justin's surgery, so it will be a surprise when we come home from the hospital. It will be quite a chore because not only is it a deck, but there is a hot tub with a rock waterfall. The hot tub heater doesn't work, and we have used it a total of 3 times since we moved in 9 years ago, so it won't be a huge loss. But it will be the first step in our backyard makeover. It will probably take us 3 years to finish, but at least it has begun.

More doctors and more coons

We went to the pediatrician yesterday for more shots. I thought we were just going to see the nurse for the shots, but we ended up seeing the doctor too. So we filled her in on the ENT information and agreed to delay a visit to the opthomologist for now. While we were there, she said that she had spoken with another parent whose child she sees, who also has Down Syndrome and she got her name and number for me to consider joining the informal support group that they have going in the area. The group is mostly younger kids (obviously still older than Justin) but preschool age rather than high school. The doctor told me her schedule for the summer and made certain that there would be someone in the office I would feel comfortable seeing during the times she would be out. And then she gave me a hug if she doesn't see me before the surgery to wish me good luck. All this makes me feel like we have definitely chosen the right doctor. How great is that?

And the raccoons have become very brazen. They come out during the day and drink water from the rock waterfall that we have in the backyard. And they sit and look in the french doors into the living room. The mother (I call her that, I cannot say that I have checked this out. I think she is a single mother.) leaves at 7:00 pm and goes to get breakfast for her kids and the rest must leave after that because the whole gang comes back at about 6:00 am. Travis now thinks that every animal that comes through our yard is a raccoon. And there are many because we are the only ones without a dog in our area. It is a little fun to watch, but it is freaky to think they are under the deck when we play on it during the day. I do take solace in the fact that they are probably more scared of us than we are of them....right?