Beautiful Heartbreak

 I have shared this song several times over the years- Beautiful Heartbreak (Youtube Video)

I had it all mapped out in front of me,

Knew just where I wanted to go;

But life decided to change my plans,

And I found a mountain in the middle of my road.

I knew there was no way over it,

So I searched for a way around;

Brokenhearted I started climbin',

And at the top I found...

Every fear, every doubt,

All the pain I went through;

Was the price that I paid to see this view;

And now that I'm here I would never trade...

The grace that I feel,

And the faith that I find;

Through the bitter-sweet tears,

And the sleepless nights;

I used to pray he'd take it all away,

But instead it became a beautiful heartbreak.

I never dreamed my heart would make it,

I thought about turning around;

But heaven has shown me miracles,

I never would have seen from the ground.

Now I take the rain with the sunshine,

Cause there's one thing that I know;

He picks up the pieces,

Along each broken road.

Every fear, every doubt,

All the pain I went through;

Was the price that I paid to see this view;

And now that I'm here I would never trade...

The grace that I feel,

And the faith that I find;

Through the bitter-sweet tears,

And the sleepless nights.

I used to pray he'd take it all away,

But instead it became a beautiful heartbreak.

I would never trade...

The grace that I feel,

And the faith that I find;

Through the bitter-sweet tears,

And the sleepless nights.

I used to pray he'd take it all away,

But instead it became a beautiful heartbreak.

Late last week and early this week as I prayed over our choice of school for Maddy, I so clearly saw God moving mountains to align everything and calm my fears. I enrolled Maddy at Trinity Prep this fall with complete Peace knowing it is the right choice for Maddy and our family. And as I once again chose a path different than the one I had planned, I was reminded of this song that I have returned to over and over again. This life God has granted me and the story that is my family is often full of fear, of pain, of doubt, of sadness and yet we continue to find faith and to see miracles and to know a view that is so beautiful and leaves me feeling blessed that I was chosen to walk this unexpected path.

As I left Maddy's new school after a meeting with their educational specialist, I received a call I didn't expect. A few months ago, I filled out an application for a once in a lifetime trip for our family and especially Maddy Moo. It was through Hopekids, an organization that has been such a blessing over the past several years. they provide activities and outings for families with chronically ill kids (free of charge to the families) so that we can make amazing memories and enjoy time away from medical treatment. This trip is outside their normal activities and was to a Ranch in Montana for a week. Two families would be selected to attend a Week of Hope. And so I filled out the application and I prayed over the trip, but did not think we would be selected. As I left the school, I got the call that we were one of the families selected. And so in August we will quite literally see a beautiful new view as we spend a week in the outdoors and meet amazing people and get to do activities we don't normally experience. 

As I ponder this week I am reminded that God is so good, that there is ALWAYS hope, and you can always choose joy.  I cannot wait for August as we once again walk a different path and look for the beauty beyond the heartbreak. 

Ali

Exciting News About Next Year

The past two weeks have been the most "normal" weeks in a year. Our days have been filled with school, ballet, horseback riding and dog training. We also got to go take our annual bluebonnet pictures. It is MUCH easier at this point in life than several years ago!

We also came to a big decision this week. I have struggled much over the past year grappling with how I want to proceed with school for Maddy. After 12 years of homeschooling Alex it is hard to wrap my brain around Maddy being in public school five days a week. We have also seen Maddy truly thrive this year with some extra rest and some dedicated time doing what she loves most. As I spent time thinking about Maddy, her personality and what is best for her and our family, I started to realize I wasn't sure that Public School was the answer. Also, some of our doctors are still not comfortable with Maddy returning to school in August. With all of that going through my brain, I decided to pray for God to make a clear path for me. I reached out to several friends who have chosen different routes. I researched options online and I prayed. Kind of spur of the moment I decided to visit an info session at a small Christian private, university model school. University Model schools meet in person 2-3 days a week and then the kids are home the other days to complete assignments. The school and the families partner to teach the kids. It is a cool compromise between school and homeschool. I left the info session yesterday feeling like it is the PERFECT model for Maddy. Her class will have a max of 14 students. She will attend 2 days a week. If she continues on she will have the same classmates and friends throughout school. They instill Christian values and will provide Maddy the smaller more intimate setting that she thrives in. I am a little concerned about the financial aspect of private school, but I know in my heart this is the best choice for Maddy. Thank you to my Mom and the handful of friends who let me talk through all my feelings and fears yesterday and help me realize it is what I want for her. Every single friend and family member I talked to thought it sounded like the perfect solution. And so with a peaceful heart I applied this morning and Maddy will have her assessment Monday so we can officially enroll. Maddy is SO excited to go back to school and keeps asking when she can start. 

Please pray with us that Maddy finds a love of learning and makes incredible friends at this new school. Pray for me to have peace in this decision and not stress over the money. 

Ali

Pictures Courtesy of Tina W. Photography!

A Much Better Week

 This week was MUCH better for Alex. He is pretty close to his baseline at this point. After many discussions between his care providers, we have come to the conclusion that he had a reaction to his iron infusion. I haven't spoken to his hematologist to figure out our plan going forward. But we are grateful that Alex is feeling better. We took advantage of the beautiful weather this week and squeezed a zoo trip in between all of Maddy's other activities. It feels SO good to get out and enjoy some "normal" activities. 

As our days and weeks go by, I find myself smiling at the life we have. I look around and see all the ways that my kids are surrounded with kindness and love. For Alex, I see it in our pastor making time out of his busy schedule to meet with him and discuss theology (and maybe video games) for almost two hours. I see it in the doctor who emails me every morning for two weeks to check in and see how he is doing. I see it in the friends who play games and chat and distract him so he can stop thinking about how much he hurts. For Maddy, I see it in her PT and Riding Coach and volunteers who go out of their way to get her stronger and more confident and allow to do what she loves with a huge smile on her face and the sound of giggles. I see it in her ballet teacher who changes her schedule so Maddy can not get so tired. I see it in her dog trainer and our partner in class who continue to encourage her and let her know she is doing a good job. For all of us I see so much love and kindness in our friends and family, near and far who continue to celebrate with us during joyful times and offer support during hard times. I am so grateful for the view I see each day as we navigate this crazy life.

Decorating Easter Cookies with Mimi

Always Mimi's boy

Best day of the week!

Zoo Day

Confetti eggs on her Ralph since he missed last week!

Dog Training Class

Thank you for all of the prayers over the past few weeks and for being a part of our journey!

Ali

A rough few weeks for Alex

 I wanted to give a quick update on Alex... Starting about 10 days ago, Alex started to feel really bad. He has had some abdominal pain above his base line, but he has had AWFUL, unrelenting nausea. For those who want more details, his pain is about a 6 and his nausea a 9. We have been in constant communication with our GI and made many changes including doubling one Nausea medication and adding another to make a total of 3. We still do not have it at an acceptable level. We thought it might be a flare of his pancreatitis, but his labs look like "his Normal".  After many conversations we think we have narrowed it down to two likely causes. One is a reaction to an iron infusion he had the day the nausea started. The other is trouble with a change made to his TPN (IV Nutrition) several days before. The doctors discussed admitting him, but Alex begged not to be admitted because it can make things worse as here I can give him what he needs immediately and in the hospital he often has to wait for meds as we wait for a nurse, wait on pharmacy, etc. To make matters worse, Alex really reached his breaking point today emotionally as we had a complication with his port that left him unable to get medications for several hours. Luckily, our hematologist was able to see us and keep us out of the ER. But Alex is desperate for some relief.  We ran labs again today and are hoping they may add some clarity to the situation. 

Always willing to smile for his sister

Iron Infusion

On a bright note, Alex has met almost all of his core requirements for graduation. I let him pick some electives he would enjoy to try and finish out our needed credits. He is loving his classes: Spanish, Business Math, Medical Terminology, Psychology and Crime Scene Investigation with the last two being his favorite!

Maddy is doing great although she doesn't like when her Bug doesn't feel good. They are each others best friends and pals and it worries her when he is sick. I have also made some changes to her schooling as it appears that she will be home with me for one more year until things settle a little more. She is LOVING our new math curriculum and doing really well in LA. We are set for science until next year. She continues to improve weekly in her horseback riding and is constantly learning new skills. Her confidence is better and better and her joy is back 100%. She is also loving her private art and ballet and after a change in schedule to help with fatigue during her ballet lesson it has just gotten better.

Eggstravaganza

Please continue to pray for Alex both physically and mentally over the next few days as we try to control his pain and nausea.

Ali