Just a couple pics...

I tried to post these while Isaac was still in the hospital, but could never get it to post.
Isaac smiling. He is such a happy boy-most of the time!

Here he is in a less than happy moment. He was refusing to work in Physical therapy. He's still really cute though!

This Is Hard

Just in case you were wondering.

I am home right now. I drove 4 1/2 hours today so I could see Leonora perform in her first dance recital. Aaron is still in SLC with Isaac. Tomorrow, I will be looking into housing in St George, doing a little food shopping, picking up some Tupperware flyers, and driving back to Salt Lake. I am tired. I feel like I should be saying good night to Isaac. I miss having my husband with me. I was unexpectedly overwhelmed by all the people and noise at the dance recital. I was wondering before it started if I would make it through the whole thing.

But I know that if I had stayed with Isaac and Aaron, I would feel terrible for missing Leonora's recital. I would be missing her and William. I would still be exhausted.

I am glad I got to see Leonora dance.

I feel so torn between here and there. I am really looking forward to having us all together again. I'm sure that will bring it's own challenges, but we should be together. Things are better when we are together.

Counting Blessings

Right now, it's easy to feel overwhelmed. Isaac has been in the hospital for 5 weeks, Aaron found out this week that he has AVM's in his lungs and brain that could be fatal if they aren't taken care of. We are hundreds of miles from William and Leonora who often ask when we will be bringing Isaac home. We've had to learn everything the nurses are doing for Isaac so we can do it all at home. In spite of all these things, I have been equally overwhelmed by some of the amazing blessings we have seen. Here are a few:

1. Isaac is alive.

2. Isaac's AVM was in the spine, not the brain where it could have caused serious brain damage.

3. The increased awareness of the dangers of HHT among family members.

4. Being so close to an HHT clinic. There are only about a dozen in the US.

5. Being able to get Aaron's brain and lungs scanned right away.

6. Finding Aaron's AVM's so that they can be treated before something happens to him.

7. Having so many friends and family and strangers who have helped us, prayed for us, and asked us how things are. There are far too many to start naming all those who have helped us, and there are probably many that I don't even know of.

8. How Isaac has progressed. Really, he's amazed everyone.

9. Having such dedicated doctors, nurses, surgeons, and other staff. We owe them for Isaac's life and so much of his progress.

10. My husband and children. They are all incredible. I'm so greatful to have Aaron with me and look forward to having our family back together again.

Beyond Adversity

I wrote this on Thursday, March 31st, 2011.

When William was only 10 months old, he had his first surgery to correct his clubbed feet. shortly after that, he had a second surgery to remove a pin that was placed during the first surgery. In the short time that passed between his first and second surgeries, he seemed to have forgotten the first one completely. When he had his 3rd surgery three years later, it was as if the first two had never happened. He had no memories of those experiences, so he had nothing to fear from hospitals and doctors. However, when he had a 4th surgery about a year and a half after the third, he remembered everything from his previous procedure. We wanted to prepare him for what was going to happen, so we explained that he would need surgery to straighten his feet. With a hurt and frightened look on his face, he asked us, "Why?" We tried to explain to him that the surgery would help him walk and run without tripping. We told him it would help him he stronger and healthier. We told hm he would be able to run faster. But all he could think of was the pain and discomfort he had experienced with his previous surgery. He remembered having to wear casts for weeks afterward, and the weakness that came after not using his leg muscles. he knew this was going to be painful and difficult. We felt terrible sending him off to surgery We knew that this would be hard for him, but we also knew that he needed it and it would bring him more happiness than pain over the course of his life. In fact, suffering in the short term prevented him from suffering in the long term.

I have often thought since then of my own experiences in life. I believe we are all children of God, so I imagine He must feel similarly to the way I felt with William. If I could have fixed William"s problems without him suffering, I would have, but he had to go through that in order to have a better life. Sometimes we have to go through trials so that we can grow. Isaac has had several priesthood blessings while he has been in the hospital. One message has been consistant in all of them. God has a plan, He will not let Isaac suffer unnecessarily, and this will bring opportunities to his life that he would not have had any other way. While none of this makes the daily burden lighter, it does give me hope and makes enduring a little easier. I trust that there is purpose in this trial. I think that if I could have the same conversation with Heavenly Father that William had with us, He would tell us the same things that we told William: "This will make you stronger. If will make your life better."

This time is difficult. We are tired. There is very little that is certain about Isaac's future. Yet I do feel hopeful. There is a law in science that says that for every action, there is an equal and opposite reaction. I believe that there is a Heavenly truth that for every trial, there is an equal and opposite blessing. If this is true, as I believe it is, then Isaac and our whole family will have many blessings-some of which we are already seeing. Isaac has always been our ray of sunshine, and we believe he has a bright future just beyond these clouds of adversity.