Happy Thanksgiving

Last week was a really long week, one of the longest I've had in quite awhile. It wasn't that our schedule was any busier than normal, I just felt like I was having to fight for everything that Jake needs and it was exhausting. Services that are put in place to help him shouldn't be this hard to get. I still have several follow-up phone calls to make this week, but am hopeful with a slight attitude check on my part, I can make some better progress. By the way, if anyone happens to know of a swim therapist in the Denver metro area, would love the referral!

Jake did get a special treat this week. Monday night, Rush had a one night only "movie" of their concert. They had filmed a few concerts this summer and it was released at theaters across the country as a special event. Todd took both boys even though it didn't start until 7pm on a school night. They really enjoyed it and Todd caught Jake playing air drums along to many of the songs which we haven't seen him do much of lately. It wasn't the same as going to the concert, but it gave them a taste of what a concert is like.

We are all really looking forward to a short work/school week and spending time with family over Thanksgiving. We have so much to be thankful for this year and I need to take time to remember that when I start getting frustrated with all the red tape and bureaucracy.

I hope you all have a wonderful Thanksgiving!

Welcome to Holland

This is the first week in a long time that I didn't know what I wanted to write about when I sat down to do the blog. It's been a week like most others, but now that I look back, there have been a few things worth sharing.

Jake ate lunch in the cafeteria for the first time this week. He's been eating lunch at school everyday for the past few weeks, but it's been in his classroom with a few friends. Crowded tables, noise levels and the logistics of getting in and out of the lunch table with the attached benches have kept him away. He told me earlier in the week he had decided he was ready to try the cafeteria and wanted to do it on Thursday. Not sure why he picked Thursday, but from what I hear, it went well. 

While he's been working very hard in therapy and making consistent progress, the muscle in his left leg that control the flexing up of the ankle have not been responding....until now. Finally this week, it appears the muscle starting to come back. Jake can flex his left foot up about an inch off the ground which was really exciting to see. More exciting was the smile that spread across his face when he realized what he was doing. Getting his ankle back should help improve his walking and eventually (hopefully) allow him to get rid of his brace. His speed has definitely been improving even with the brace. He did a walk test back on October 8th and walked 240 meters in 6 minutes. This week he walked 352 meters, quite an improvement in 5 weeks!

Warriors won the Superbowl, 12-0! This is the football team the boys have been honorary captains of this season and they were both really excited to see the team win today. It was their first superbowl win and we were glad we got to share it with them.

Finally, this story has been shared with me three times in the past month by three completely unrelated people, so now I'm sharing with you. While the specifics of this story are different than our situation with Jake, I loved the author's perspective in dealing with the unexpected things life can throw at you. 

WELCOME TO HOLLAND

by Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

We don't know how long we're going to be "in Holland," but we're doing our best to make the most of our time here and appreciate things in a different way. We are hopeful we'll get to Italy one day, but if we don't, that's ok.

Thankful

Many of my friends have been posting what they are thankful for each day in November on Facebook. While I am not actively participating, I am thankful for many, many things. The biggest being that while our family has been altered, Jake is still with us. I honestly can't imagine, and try not to think about, what our life would be like if he hadn't made it. I am very thankful for my incredibly supportive husband who is my partner in this journey. I am thankful for our other son Luke, he's had a lot to deal with at the young age of 8 (just turned 9) and amazes me at times with how he handles things. I am thankful to have such a wonderful extended family and caring friends who continue to offer help and step in whenever it's needed. I am very thankful for Jake's friends who treat him no differently than they did before and continue to include him in their activities. I am also thankful for the teachers and staff at the boys school, their support has been so much more than I ever could have expected. Finally, I am thankful for all of you who care about Jake and our family and continue to pray for his healing. We are truly blessed.

A few weeks ago, I picked up a copy of Jake's medical records while he was at Children's Hospital, all 1216 pages. I'm glad I chose the disk option instead of paying per page! I've been going through some of it and am still not through his time in the ICU. There is a lot that I don't understand because of all the medical terminology and abbreviations, but the parts I do take me back to a time when I really don't think I was allowing the severity of his situation to truly sink in. I don't think I had the emotional or mental capacity to realize how critical he was those first few weeks in the ICU. Reading his reports makes it very apparent how sick he really was.

It's also amazing how much I had forgotten, probably as a self-protection mechanism. One of the things I was reading a few days ago was about the first time they tried to take out his breathing tube. It started off ok with the assistance of an oxygen mask and a few nebulizer treatments, but by about 5:30pm his breathing was horribly labored even with the mask. I sat with him on the bed doing everything I could to help calm him down to make his breathing easier but nothing was working. I remember having to step out of the room a couple times to pull myself together because watching him struggle so hard just to take a breath was just too much to take. Breathing is normally something you don't even think about and shouldn't be that hard. I remember the scared look in his eyes and the horrible sound as he kept trying to gasp for air. I kept asking the nurse to get a doctor so we could do something for him, I felt so helpless. After what seemed like forever, a team came in, evaluated him, and determined they needed to put the breathing tube back in. He was then heavily sedated, breathing calmly and finally able to relax. Going through that was one of the worst moments I had with him in the hospital other than the night he was admitted. While I remembered the overall event, I had forgotten all the emotion tied to it.

I have to read the reports in small doses because it's just too much to take in all at once. But it also helps give me perspective on where he is today and how well he's doing. I watch him from a distance sometimes and my heart is so full of love and admiration for how strong he is.

I didn't intend for this to be such a long blog, but wanted to give a quick update on Jake's longer school days before signing off. He was there for four hours each day last week including lunch and recess. I can tell he's really enjoying it because the first thing he tells me about when I pick him up is something funny one of his friends said at lunch/recess. While he's been a little more tired, it's a good tired and he seems happier. He seems to also like the variety of subjects in the afternoons and I'm getting good reports on how he's doing. We did run into a new "snag" this week when on Tuesday due to the cold weather, we went to put on gloves. You don't realize all the motions a hand goes through while putting on a glove, but we'll just suffice it to say, it was a struggle for his left hand. Just when I think we've figured out how to accommodate things for him, something new pops up we hadn't anticipated. I'm sure there will be more to come and we'll just figure it out as we go along.

Halloween and Football

The boys were on their second week of fall break this week and it was once again a busy week in the Morgan household. The highlight was of course Halloween as it is with most kids this age. Jake was the 11th Dr. Who (it's a BBC series) and Luke was a green morph.

I have to admit, I was a little worried how trick-or-treating was going to go this year with Jake's limited mobility. The pace is usually a pretty quick one with a lot of running up and down people's driveways. We knew we were going to have to take him in his wheelchair. The plan was to take him close to the house and he would walk up to the door. Just getting in and out of the chair was going to take extra time and I didn't know how he was going to hold up. We went with two of their good friends and talked to all the boys before we left that things might need to be a little slower this year. Things could not have gone better. Jake was a trooper, he and his friend Jack actually lasted longer than Luke and Jack's younger brother Randy! I have to give Todd major props too. About half way through, we realized it was getting hard to see on some of the steps and Jake was getting tired, so Todd would take the chair and Jake up the steps to people's door. (We live in a somewhat hilly neighborhood and some people have a lot of steps!) Some of the time Jack took Jake's candy bag up to the house and Jake waved from the sidewalk. It was so great to see Jake having such a good time and I was very impressed with Jack who was so patient going at Jake's pace. All in all a very good night.

We also got to go to the Air Force vs. Army football game on Saturday. We decided not to take Jake's wheelchair since we had regular seating vs. the handicapped seating and weren't sure what we'd do with the chair. We parked as close as we could and Todd gave Jake a piggyback for part of the way in. Air Force games are always a good time, the weather was perfect and it was a great game (Air Force won 42-28). As we were leaving, Jake decided he wanted to walk all the way back to the car.

I'm not sure what happened but all of a sudden Jake's walking just clicked. Since the botox injections he is able to straighten his left knee, we've spent a lot of time the past few weeks working on his stride. He's been doing what we refer to as the wedding march. He would take a big step with the left foot, then bring the right foot up and even with the left instead of taking an equal step with the right foot. Logically it made sense why he was doing it. When all the weight was on his left leg, he wanted to get the right foot down as quickly as possible to shift his weight back to his right leg. He's been doing a lot of exercises to help strengthen his left leg, weight shifting between the two and working on balance. Well something worked because all the way to the car, he had a great stride. There is still some limp due the brace, but it's the best we've seen him walk since the aneurysm. I was so excited to see how well he was walking I took some video http://youtu.be/M7FgHuvKVoE. (Luke was very quick to take his turn getting a piggy back from Dad since Jake was walking.)

It's been a great couple of weeks and it's been nice spending some extra family time together. I'd be lying if I didn't admit that part of me is looking forward to the kids going back to school this week and all of us getting back into a routine. :-) Jake is also excited to start his longer school days that include lunch and recess. I'll let you know how things go!