My Story

I don't know why anniversaries hold such importance in our lives. Some are great and fun to remember and celebrate, birthdays, anniversaries, 1st day of a new adventure, memories of a great trip. Some anniversaries are bittersweet, the birthday of a loved one who had died. Some anniversaries are downright painful, memory of a tragedy.

6 years ago, was the start of a journey that was so life changing. A tree fell, a surreal ambulance ride, trying frantically to reach my husband, learning what trauma team activation (TTA) meant, small empty private waiting room. 

But really that day was not the start of the story. That summer we had already been through a minor concussion and a broken wrist, and general business of the summer trying to get kids to various summer schools  and activities. And one blessed book club about Susie Larson's book The Uncommon Woman.

The small group I met with, following the large group discussion of the book, became so close and supportive of each other. At the end, mere days before the tree, we had a time of prayer and foot washing. When asked what I wanted prayer for, I answered strength. Melissa prophetically heard "More Jesus". God knew what was coming. Strength was for me to do what I needed and rejoice in what I accomplished.  It was a selfish request that was focused on me. I wasn't supposed to do it. Jesus was. Little did I know how I would repeat that phrase "More Jesus", in the coming days, weeks, months and years. How much time I would be spending in waiting rooms. How much Jesus would meet me there in those waiting rooms, and in the dark nights spent in uncomfortable hospital beds.

"My Story"

(click for music)

If I told you my story

You would hear Hope that wouldn't let go

And If I told you my story

You would hear Love that never gave up

And if I told you my story

You would hear Life, but it wasn't mine

If I should speak, then let it be

Of the Grace that is greater than all my sin

Of when Justice was served and where Mercy wins

Of the Kindness of Jesus that draws me in

Oh to tell you my story is to tell of Him

If I told you my story

You would hear Victory over the enemy

And if I told you my story

You would hear Freedom that was won for me

And if I told you my story

You would hear Life overcome the grave

If I should speak, then let it be

Of the Grace that is greater than all my sin

Of when Justice was served and where Mercy wins

Of the Kindness of Jesus that draws me in

Oh to tell you my story is to tell of Him

This is my story, this is my song

Praising my Savior all the day long

This is my story, this is my song

Praising my Savior all the day long

For the Grace that is greater than all my sin

Of when Justice was served and where Mercy wins

Of the Kindness of Jesus that draws me in

Oh to tell you my story is to tell

For the Grace that is greater than all my sin

Of when Justice was served and where Mercy wins

Of the Kindness of Jesus that draws me in

Oh to tell you my story is to tell of Him

Oh to tell you my story is to tell of Him

This is my story, this is my song

Praising my Savior all the day long

Now I can go look at my TimeHop and see those pictures and see Hope that wouldn't let go, see Love that never gave up, and see LIFE. 

Hope

I am learning more and more each day how valuable hope is.  It is so easy as a parent to look at your child and feel like he or she will never learn x, or do y. It must start as an infant and the quest to get sleep and snowballs from there. When you add in special needs, it is easy to get stuck in the day to day needs and feel like it is never going to improve and your child will never live an independent life, or have life long struggles. In my last post I shared some of the hope I saw after Sam's last surgery. That aggressive treatment can have valuable lifelong benefits.

Hope is defined by Merriam-Webster as "to want something to happen or be true and think that it could happen or be true," or " to expect with confidence." The Bible speaks much of hope. I found a wonderful page listing what the Bible says of hope on BibleStudyTools dot com. Two things that jumped out at me was that suffering leads to hope (Romans 5:3-4). Hope is something we are to practice with patience. (Romans 8:25)

I have learned how encouraging hope is through a fundraiser that provided us with a new van organized by a friend at church. I now have a reliable vehicle that starts on these cold days. Next time Sam ends up in a large bulky cast, we have room to fit him into the vehicle (not only interior with easy to configure seating, but through the large sliding doors) and the rest of the family too! Thank you is such an inadequate word for the depths of my gratitude. This hope is giving me strength to keep going.

After Sam's last surgery, I saw first hand how much hope helps. We were able to attend a Globetrotter game not long afterwards. I was amazed at how this simple activity for many, lifted my son's spirits and gave him hope. The reason we were able to do this was an organization called HopeKids. They provided tickets for us.

HopeKids provides ongoing events & activities and a powerful, unique support community for families who have a child with cancer or some other life-threatening medical condition.  They surround these remarkable children and their families with the message that hope can be a powerful medicine. These events and activities take money. One of their annual fundraisers is Relentless.  Relentless is a Powerlifting meet held once a year in Rosemount, MN, where a select few people from all over the world are granted the opportunity to fund raise and compete. These funds help support HopeKids.

Sam has been paired together on Team Hope with a lifter named Jerry. We were able to meet Jerry this weekend and are so excited for this opportunity. Please take a moment to look at Jerry's Relentless 2015 Page, and consider a donation. 

As a quick update Sam is doing fantastic. He has been dismissed from physical therapy for now. We are looking at an outpatient surgery in a couple of weeks to remove the nails put in his ankles to correct the ankle valgus deformity. Compares to the last one this should be easy-peasy!

2 Days....2months later

Two days until surgery. You would think it gets easier the more I do this. It doesn't. I am feeling so panicky lately. I am grateful I know what to expect while at the hospital. I have some idea what to expect for recovery. I have some idea how to plan for my family's needs. I still feel just as scared.

I come today to write a post and try to sort out somewhat what has happened the last two months and find this draft post I started 2 months ago.  Wow, I felt scared, but somewhat prepared for what to expect. Ha! I was so wrong.

It is always hard to hand your child over to an anesthiologist. Each time you do it is just as hard as the first. I did well preparing myself for the day and the immediate recovery period. I asked for help and found a lot. However, I did not expect the surgery to be as big as it was.

 I heard Dr. Healy say overnight for pain control, we might have to break the bone. Well, I have seen overnight for pain control and he usually comes out of it and is in a good mood by 7 or 8 or so and I think we could have gone home. If the bone is broken, well he broke it before and it was casted outpatient- so piece of cake! Sam should be back to school within a week.

This was the longest Sam has ever been under anesthesia. Bone was broken because it was too curved to fit the rod in otherwise. Dr. Healy came out saying he is giving Sam a PCA for pain control. (A button he can push to get meds when he wants.) He will be in a RJ on both legs with a bar between. That is a softer cast/splint/pressure bandage type of thing. Sam was in the hospital for 4 days. On day 3 the RJ was replaced with casts Sam had for 3 weeks.

He could not walk. With the casts he could not fit into his wheelchair and we had a huge rental one. Pain was still an issue. I found out that nurses repositioning him every 2 to 4 hours and a fancy hospital bed that moves and has air moving through the mattress helps to bring down pain levels. We got home and his pain seemed to increase. He needed help for everything. The positioning of his legs in the cast magnified the deformity of his right femur. When he got the casts off and a single one on the right leg, Dr. Healy verified that we will likely need to do this again for the femur.

It was about that point I really hit rock bottom in a burnt out state. We went to a free movie compliments of Hope Kids and instead of thinking of what a fun time that was and what a great movie, Muppents. I came away irritated and grumbly at the hassle of dealing with everything-casts and wheelchairs in a small  4 door sedan, stairs in the house, hassle, hassle, hassle every time I turned around. So much effort to just do a simple movie.

It was here that I should have had more help. I don't even know what kind of help. I just spent to much time wallowing here. I was even beginning to question why I was putting Sam and our family through this. After all, people have quirks and difference, so what if he was a limp?

Sam spent three weeks out of school and a week of spring break recovering before being able to return to school.

At this time God brought in some key factors. I stumbled across a group therapy class called Mad Mom, Sad Mom, Hurried Mom, Woried Mom. It has helped to talk it out. I also talked with someone at our church who has a son, now grown and with 2 kids of his own, who went through a lot of similar orthopedic stuff. Totally different diagnosis, but they know what it is like to deal with spica casts, braces, therapy and such. They even used the same hospital we do. To see the end results of aggressive treatment resulting in an adult living a full productive life was so encouraging. God also brought a dear mom into my life, a former La Leche League leader like myself and wonderful christian.

I began to climb out of the pit and feel more encouraged. Then I heard a song on the radio, I AM by Crowder. It caught my attention because 1) I Am holding on to you-Yea through the storm I can hold on a get through. 2) There's no end to amazing grace-Grace has been on my mind and I have created a playlist called Grace. I came home and looked up the song on You Tube. Wow, was I wrong. "I" am not holding on to God, "I Am" is holding onto me. In the bottom of burnt out self pity wallowing pit, God is holding on to me. When I am to absorbed in my troubles to see His Grace finds me.

Tomorrow we go and get Sam's single cast off and x-rays. I anticipate that he should be able to walk again. He will get a brace that looks like a beefed up shin guard.  Then he should be good for the summer. Then again, who knows what will happen. I have been suprised to many times to know it might happen again.

Four years ago I was given a glimpse as to the magnitude of what we were dealing with for the first time. Sam had broken his right tibia/fibula the previous Christmas Eve. He was not walking well and had a pronounced limp. I had taken Sam to our family doctor and asked for a referral to a pediatric orthopedist. We were referred to Gillette Children's Specialty Healthcare and set up an appointment with Dr. Healy. I was thinking possibly some physical therapy was needed, I'm not sure what else to expect.

It was St Patrick's Day 2010 and Sam was 4 years old. As we took the elevator up to the second floor clinic, Sam asked the woman riding with us about the shamrock she was wearing on her blouse. I don't remember much about check in or the start of our appointment. Dr Healy ordered the x-ray pictured above to check for a limb length discrepancy. Sam still has his preschool body proportions in this x-ray. I was shocked, stunned is more like it, to see all the lesions (tumors, nonossifying fibroxanthoma, lucencies, lots of names will be given to them in the ensuing years) in his legs. Combined with the fact that Sam was in early childhood special education at the time for developmental delay, Dr Healy suspected a syndrome of some type and gave us more referrals, one to genetics and one for a developmental assessment. He cautioned us about the risk of fracture, especially with the top lesion on the right femur and asked us to come back in 6 months. 3 months later it broke.

I left the office dazed. I remember stopping by McDonalds for some food for Sam and I and Daddy who was at home. Trying to explain to Richard what we had taken place was hard. To some degree we are still reeling. We still do not know what this is or how it will play out in Sam's lifetime. Some similarities have been found but not enough to fully identify it. So we call it a fibrous dysplatic condition of bone, more of a description than anything.

What a Day!

This post was started in December. It is about Sam's Gait Lab appointment at Gillette Children's Specialty Healtcare on December 16, 2013.

Sam had his Gait Lab appointment yesterday. It turned into quite a day.

One to Two inches of snow where forecasted for the day. I knew this, but it didn't start snowing until about 20 minutes before we were to leave. I think all two inches fell by the time we hit St Paul. After driving through that I was so glad to have valet parking available!

We made it to the Gait Lab just in time.

The first thing we noticed about the Gait Lab was that it is nice and toasty warm! Since they ask the kids to walk in shorts and no shoes they keep the temp up a bit. Right away Sam was asked to change into shorts and do some walking and running with his UCBs and barefoot for them that was videotaped. 

Then began the measuring. Not only weight and height, but every conceivable measurement on his lower body possible. It was very detailed. Marks were made to measure and those marks were referred back to later in the day. 

In fact the PT doing all this measuring noticed what looked like dried blisters on his feet from his UCBs. So a stop over to Assistive Technology was added to our day. 

Then the markers for the motion capture were glued and taped on. These markers are grey to look at but when a flash from a camera hits them they light up. 

It took a long time to put these all on in the exact spot they needed to be.

Then came the fun.

The magic stick he is holding was used to help point to specific spots on his legs.

The results of this day are contained in a 10 page report. There are three things we are going to act upon. The first is weakness in specific muscle sets in his lower extremities that we are going to address with physical therapy. Secondly, Sam has ankle valgus. This is a condition where the ankles roll in that leads to other problems in his legs compromising his stability. Since Sam is still growing, this can be corrected with guided growth. One side of the growth plate on the bottom of the tibia will be closed with a screw allowing the other side to grow and the angles to correct themselves. The last thing I want to follow up on is the fact that he has loose ligaments.I want to talk with the genetic doctor about this. 

So combine the gait lab information with previous x-ray information of  Sam's right tibia and we have two things to correct surgically. The ankle valgus as previously described and a telescoping rod placed in Sam's right tibia to keep the bone from bowing further and reduce the chance that the lesion will break or if it does, it will minimize the damage done by a fracture. This will be the 10th surgery for Sam and we finally have a date of March 4th.

Emotions

In the last 4 years we have had countless visits to many specialties. Each visit has brought with it so many emotions, in so many forms. I think I have been through the whole shebang and experienced it all, then I come up against something new.

The first emotion I had to come to grips with is the feeling that my child is the most urgent case around and should get in immediately to be seen. The reality is waiting times exist, it is a good thing when your child can wait. I think oncology is probably the specialty that one gets into within a few days. There is this Mama Bear side that comes out when you feel like your child is threatened and needs protection or help. It takes some time to learn to live with this and not let it alienate everyone who could help you by letting anger demand something a doctor's office cannot give you. 

The flip side of this is how to deal with the waiting. There have been so many times that I have had to wait, wait for a much sought for specialist appointment, wait for test results, wait for procedures/surgeries. While you wait emotions and expectations have time to morph and become more than they should be. All your hopes to be able to walk out of the appointment with an answer of some kind, a definitive treatment plan, or a prognosis gets built up during the wait. What usually happens is you walk out with a list of tests to be done, things to look into or even other doctors to visit. 

These emotions seem to be the hardest to deal with, the aftermath of a visit. 

At first it was pity thinking my child had an unfortunate accident and has some pain and healing to deal with. Then the realization that something isn't right, so you seek out a more refined specialist. This comes with the wait and the expectations and hopes build up. When you get to the visit, you "know" what should be done. Then one x ray changes it all and reveals that so much more is going on. You walk out of the office with a list of other  specialties to visit and tests to do. Shell shock. Life has just been flipped upside down. You began to realize something big is going on, just don't know what right now. 

The next specialist is supposed to have the answer. He or She doesn't and  in fact raises more questions. So much frustration and disappointment. 

A test gives an unexpected result out of left field. It really doesn't help when this diagnosis comes with much confusion and misunderstanding from the doctors themselves. Ok we can deal with this even though there is still more to do. 

Then an answer begins to emerge from all the craziness. This comes with a treatment plan and prognosis. Hope.

Then the visit that turns it all upside down and blows that answer out of the water. Oh the aftermath, the anger, how dare that doctor decide that all the other answers are wrong! 

Off to another very specialized specialist. More waiting. Leave the appointment with more waiting, but hope for an answer after a big conference of specialist doctors. Hope again but more guarded.

That hope is dashed with the answer of a lifelong disease, but manageable. As a bonus a wonderful community is found with others that understand. 

Then you begin to see that there are no answers and you just have to wait and see how things will manifest themselves. Wait and see.  Waiting with no timeline is a new experience.

Then emotions begin to be recycled. That unexpected result a few months ago begins to assert itself and cause so much pain. That Mama Bear comes back out and you push to get quicker appointments, but when the answer is brain surgery oh the confusion and shock. That is such a big thing. 

Some anticipation has a slow resolution. The answer is surgery but recovery takes a long time and the final answer is not seen right away.. Patience is developed.

At this point some ability to handle the swings of special needs brings begins to assert itself and when a new specialist says not to an anticipated treatment, it is a surprise but you can deal with it and life falls into a little bit of a predictable pattern. 

I think that is the problem: Predictable. There is no predictability in this life. 

Then comes a visit that throws a new emotion into this, confusion. At least it felt new until I just looked back and saw the word confusion already used, though this time is not so much shock All I know is that I know what I walked out with a feeling that while I know the specific recommendations and plans I don't fully understand it. I need time to think about it and digest the information I received.

This all leads itself how do I prepare for future visits? Will next weeks visit bring a surprise or an in and out, see you next year?

Philippians 4

6 Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God.

7 And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.