Two forward, One back

Well, I should know better than to make a pronouncement like that. We are not "through a stage", we are taking steps forward and backward and overall. awkwardly, moving in the right direction. Live and learn, right?

Isaac had a field trip last week to the sculpture park. He was so excited for me to be joining his class. I loved watching him interact with his friends and be so proud to have me there. I told him that one day he won't want me to come- he denies it. I remember my parents saying the same thing and I thought they were wrong, too. He's growing up so fast, as kids do, and it almost physically hurts.

Samuel has had two doctor visits in the last couple of weeks and he struggles through them. I am learning a lot about how to help him feel comfortable and secure and  he is learning to trust and relax. Although it isn't easy I think he and I are better connected having gone through this together. The blessings of hard times.

First we saw the pediatric ophthalmologist. She did a great job making everything in the exam like a game, but there was nothing she could do about the eye drops. Many tears. He was still mad when we tried on glasses a little later. He didn't want to put any of them on, and when I insisted he try a pair he would duck his head so I couldn't see what they looked like. We were at least able to try on three and just pick one.

 

I know that when you see this picture you won't believe my story. He's good at taking great photos in the middle of it all.
He chose these when I said they looked like W's glasses.

Yesterday we had a couple of appointments. First he had to have an MRI. As we waited I fretted that we wouldn't be able to get it done because he would not want to. He was not happy about being there. The advocate came to him and showed him pictures and a video on her iPad of a little girl having an MRI. Together we got him to be a little excited about getting to go in a tunnel and watch a movie. He and I had a cheerleading session in the dressing room as he took off his clothes and put on his gown, then he bravely walked into the room. A few times he started to pull back, but he got on the table, let them put the "helmet" on, and slid into the tunnel. I stayed close where he could see me in the mirror and kept up the smile and excitement. The loud noises caused him concern many times, but the sweet boy kept his eyes on me. I don't think he was convinced this was a treat, but he was a champ and trusted us all through the whole test! They got everything they needed, so we don't have to do it again. Yay!

Sam was so happy to get up early and go with Mama and RiRi on an outing. It broke my heart to see him wilt when he realized where we were. 

Learning about the fun tunnel

RiRi had come with us and she had brought a kids smart watch to give him after he had his MRI. He was ecstatic to claim it when we came back out. It also helped us through the next appointment which was more truamatic.

The leg brace was ready and needed its final fitting. Sweet little Sam whimpered through all the adjustments until she declared it ready. He cried as she put a borrowed shoe on his foot over the brace. Then we had him stand on it. He howled and sobbed and refused to walk. For 10 minutes I cajoled and encouraged. It was all I could do to keep myself together as I took in his distraught face and tears. Although this is all for his good, it sure feels rotten to do this to him. Finally I scooped him up, rocked him and talked to him until he could calm down and then we tried again. As he pulled himself together I said "Didi is awesome!". (Didi is his preferred name. It means little brother in Chinese. He actually won't answer to Sam.) He yelled back, "Didi NO awesome!" I laughed and then he laughed- this was the kid I knew coming back out. Mister Contrary.

We walked together down the hall to the toys and played a bit. Since his shoes don't fit over the brace he got to take the brace off to leave the hospital and it was good for all of us to have a break. Next stop, though, was the shoe store. After fitting and buying shoes we kept the brace on for a while. He started to accept it, walk and even jump a little and be his happy self. For the first time in a few hours I thought this may work out ok. He will have to wear it every day, but we can ease into it by doing a little longer each day until we get to all day. 

Today is hat day at school. Sam wears a hat at least a couple times a week anyway, but they sure were cute this morning in their Disney hats. Isaac was especially proud that his hat says Hong Kong. Our Disney visit on the way home feels like a lifetime ago. For Sam it really is a lifetime ago. And maybe it is for all of us. Our lives are all richer for having Sam and I can't even imagine life before him anymore.