Angels Among Us

Anyone who has followed my blog for a while knows that I love the song Angels Among Us. Starting as a young girl I collected angels and I truly believe there are angels on this earth that show us God's love. The chorus of the song is the following:

Oh, I believe there are Angels Among Us,

Sent down to us from somewhere up above.

They come to you and me in our darkest hours

To show us how to live

To teach us how to give

To guide us with a light of love.

Tuesday was a crazy day with both kids having performances spaced an hour apart. I started the morning at Mad's school to watch her in her Christmas performance. I was so proud of her and how far she has come. Last year she did not sing and turned so the audience couldn't see her because she was so nervous to be in front of everyone. This year she sang every word, did her hand motions and enjoyed every minute. I love watching her grow in her confidence and belief in herself.  

A small clip of one of her songs.

Maddy and Mrs. Mitchell

As soon as Maddy's performance was over I rushed to the hospital where Alex was asked to be a special guest in their winter concert featuring some famous country singers including Neil McCoy, Josh Weathers, and our beloved Sonny Burgess along with others. Alex and Sonny had been working on the first few measures of Silent Night. As I looked around the Atrium of the hospital, I saw so many angels who have touched our lives over the past years. From VP's of the hospital, child life specialists, nurses, managers, our girls from the Foundation, doctors even Alex's therapist came to see him perform and support him. I was in tears as I watched Alex play his Violin in public for the first time. To see all that he has accomplished in his life amazes me. And then josh Weathers started to sing Angels Among Us. I cannot imagine there is a more fitting song to describe how we feel about the staff of Cook Children's hospital.

He was only supposed to play a few measures, but he played the whole song...I will post that video on FB because it is too big for here!

Alex with everyone who took part in the concert

Alex and Bobby

Alex with our "Foundation girls"

Alex and Josh

Alex and Raymond

Alex, Sonny and crew

Alex with Sonny, Bobby and his new violin

The rest of the week has been just preparing for Christmas. Yesterday we took nine dozen cookies to our nurses in the hospital. They did so much last year to make our holiday as special as possible while we were inpatient. We wanted them to know they are loved and appreciated.

Our sweet Mia

Maddy with Peaks after delivering cookies

Elfie brought Maddy a new nightgown

Bug decided new year, new haircut. I love it, but he looks so old!

My Zoey update...I spoke to Beverly, our trainer for a bit today. Let me start by saying that I am so grateful  to have a trainer who one: knows what she is doing and two: cares enough to make sure that Zoey is trained completely to do everything possible to be able to save Alex's life. The good news is that her "stay" is completely done. She is staying for two hours off leash with no attempts to move. The not so good is that breaking her fear is a little trickier. Zoey has been timid, skittish and easily frightened since we got her. Bev has seen that play out. We need to break that before we move on with her training. If she is so worried about what is going on she cannot focus on Alex and do her job. It came to a bit of a head today. Bev decided to try and get a Christmas picture to send us. (Have I mentioned I LOVE her). Zoey was SO scared of this snowman. It took Bev over 10 min to get her this close to the decoration. I mean you can all see how scary that snowman is right????

"I'm not going to win, Bev, am I?"

As a reward Bev removed the snowman

But she did need to stay by him for a bit!

So Bev called to tell me where we stand. She has done enough scent work with Zoey to know that she is extremely intelligent and will have no problem picking that up. However, she is stopping the scent training for right now to work on trust and getting Zoey to see that the world is not scary. Please pray for Zoey to catch on so our sweet girl can finish her work and come home to us. In the mean time we will continue to pray and fundraise knowing that when she gets home she will be doing exactly what she needs to. If you would like to help us please continue to share Zoey's Fundraiser. Obviously the longer she is there the more we need to raise. We are so very grateful to everyone who has helped already!

We hope everyone has a very Merry Christmas and spends the next few days making lasting memories with friends and family.

Ali

Where do the weeks go?

I am not sure how another week has managed to fly by. For me this has been a week of reflection. Last year on December 9th, Alex became extremely sick. It was the start of a month long admission and some scary days. On December 13th, Alex underwent the biggest surgery of his life as it was decided without an ileostomy his diseased colon would continue to leak bacteria into his bloodstream and most likely kill him. It was a surgery that was as scary emotionally as physically. I was scared of how my sweet boy would adjust and how life would change. Physically he struggled with the recovery, but emotionally he has handled this change with more courage and grace then I ever could have imagined. In fact we have seen the opposite of what I feared. Instead of a decline in his emotional well being, I have seen a decrease in anxiety and a new sense of calm and maturity that I did not expect. I say it so often, but I am so lucky that God chose me to be the mother to this extraordinary child. He has an ability to touch everyone who has the privilege of meeting him. He maintains a joyful disposition and a faith in Jesus that never wavers. I pray constantly that God uses Alex in this world that so desperately needs some light in the dark. His perspective is one we can all learn from.

Monday I got a long update from Zoey's trainer and also got to speak to her on the phone for a bit. Zoey is doing a great job and doing exactly what she needs to do. She is going to be such a blessing to us when she comes home. The independence and confidence she will give Alex in knowing that she will alert him if her needs more hydrocortisone and the peace she will give me overnight and when I am not with Alex is indescribable.

Zoey and Mazie (one of our friends dogs) who is also with Beverly

We continue to fundraise to ensure we can finish Zoey's training. We are so grateful to everyone who has donated, shared our link and prayed for us. Zoey's Fundraiser

We had a pretty good week otherwise. Monday we were able to celebrate with the Family Advisory Council that I have been a part of for the past 3 years. It is so fun to get our family's together once a year for dinner and an ornament exchange. 

Maddy had a great week at school. She loves every minute learning, playing with her friends and loving on her teachers. She cried on Friday because she was sad that she didn't have school. I love that she is so happy in her preschool and is growing in confidence. Our church has blessed us in countless ways through the years and Building Blocks is just one more example of the love of Keller UMC. 

Alex continued to practice his violin this week and he had another lesson with Sonny as he prepares for a special performance on Tuesday. He is nervous, but excited for this concert. 

We also managed a visit with Erin and Greyson this week.  Alex and I got to love on Greyson and Erin helped me with wrapping presents for Christmas, which was a HUGE help.

Yesterday we were able to attend the Spiderman movie thanks to HopeKids. I knew Alex was excited to see it, but Maddy loved it just as much! She was also excited to see a big Christmas Tree decorated in Pink! Alex and I also got to see a show directed by his Improv teacher that featured many of his friends!

Only Mad needs a tiara to go see a superhero movie!

Please keep us in your prayers this week. Prayers for continued good health. Prayers for the kids on Tuesday as they both have performances that they are worried about.

Ali

A busy week

This week has been really busy (as this time of the year always is).  Let's see...

Monday was a day we were looking forward to and dreading all at the same time! We had to take Zoey to her new trainer to drop her off for the next 1-6 months! It was really hard to say goodbye, but we left more confident then ever that she is in the right place with the right trainer. That feeling has increased all week as Bev has done an amazing job keeping us updated and sending me lots of pictures to ease the sting of Zoey being gone. Zoey has worked hard all week and is making really good strides.

Working on her down stay

Her first work in public with Beverly

Mad had school all week. I volunteered at her school all day on Tuesday for the teacher appreciation luncheon.  Then she had ballet! Thursday Alex had a violin lesson to prepare to play silent Night at the hospital in a week and a half. Friday both kids had appointments at the ophthalmologist. Maddy tried desperately to convince everyone that she needed glasses to no avail. Alex on the other hand did need an adjustment to his prescription so he will be getting new glasses. 

Friday I hit a milestone I have been working towards. I hit 100 check-ins at Camp Gladiator. That means 100 times since March I got up at 4:30 AM. 100 times I busted my butt. 100 times I took an hour for me to make myself better for me, my kids, my husband. 100 times I was supported and encouraged by an amazing community, the best trainer and 4 woman who have been my accountability partners. They have pushed me, complained with me, laughed with me and loved me. It is because of them that I continue setting my alarm day after day.

My Awesome trainer, Allyson who puts up with my chatter at 5:00 AM 5 days a week!

These women are so much more then accountability partners- they are friends in the truest sense of the word.

Yesterday was a "Christmas Day" or as Maddy has said, "the BEST day ever"! We started the day decorating our tree. 

Alex hanging the first ornament

Each year I buy the kids an ornament for the year

Our Zoey ornament!

All done!

After we finished decorating, Maddy and I had to get ready to go see the Nutcracker. I have loved ballet most of my life. It has been so fun to have a little girl who also loves ballet and wants to share these experiences with me! She insisted that she needed her hair in a bun since we were going to the ballet!

For those that don't get to experience it daily...this is what it is like to live with Maddy!

She wanted everyone to see her ballerina bun!

Getting ready to go!

As we head into this next week, we are hopeful that we can slow down enough to enjoy this season, to create memories and spend precious time with friends and family. Please continue to pray for health and also for Alex as he misses his pup!

Ali

PS- For those who have donated to our fundraiser or shared our page, we are so very grateful! If you would like to help us complete Zoey's training, please Click here.

Silver linings

If I was given a choice about my life many years ago, I probably wouldn't have chosen this life....And Yet, this life has blessed us in so many ways. The people we have met through the years (many of whom we probably wouldn't have if life were different) have been the best gift we could have received. This week was spent in the presence of some of these special people who have made our life so much better.


We started our week at the Harlem Globetrotters. It was so much fun to have some time as a family. Thank you to HopeKids for providing us opportunities to create memories.

Tuesday we had a meet and greet at TCU with the students who are in charge of this years Dance Marathon supporting the hospital. Alex asked one of his best friends to join us. This friendship is one of the things I am most grateful for in Alex's life. Ellie and Alex have been friends for years and their relationship has grown closer over time. Ellie loves Alex for Alex and all his quirkiness. She once told her Mom she didn't even really know what was wrong with Alex because they don't talk about it, it just doesn't matter. Everyone needs a friend in their life who loves you know matter what.

Today we had had the chance to tell our story on the radio for the annual Cook Children's Radiothon. When most people think of the hospital, it is with trepidation and fear. Not us. We love our hospital. We love our doctors and nurses. We love the child life staff. We even have relationships with some of the janitorial staff and cafeteria workers. But there is a whole other side most people don't have the privilege of seeing. The people who work behind the scenes. The administration and the foundation who are in charge of fundraising. We have had the honor of working with them for the past 4 years and have grow to love them dearly. They have listened to us tell our story countless times. They have encouraged us, they have supported us, they have prayed for us. Our lives are so much better because they are a part of it.

After the Radiothon, we were able to spend a few hours with our precious Erin. When she walked into our home two and a half years ago we never could have imagined how much she would come to mean to us. She truly is family (as Maddy made sure to tell her a hundred times today). When she stopped working to have Greyson, we made a promise to each other that our relationship wouldn't change. We have held up our bargain and seen each other several times this month. She truly loves my kids more then almost anyone and they love her.

 We continue to walk this journey surrounded by love and choosing joy. Thank you for walking with us. Please pray for my boy  (and all of us) as we say goodbye on Monday to Zoey as she leaves for training.

Ali

If you would like to help us complete Zoey's training, click here. We currently have enough for 2 months of training, but she may need up to 6 months.