Counting Our Blessings

Counting Our Blessings

Thursday, December 29, 2016

Redbasket Link

Thank you so much for your outpouring of love and generosity regarding my last post.  I was in the process of setting up an account with Red and did not have the link yet to give you all.  It is up and running now.  Red Basket is a non-profit organization that allows individuals to donate time or money directly to people or projects that need help. Your donations are tax deductible and 100% of the profits are directly given to the cause.  The link to the page is We have a baked goods boutique and walk/jog-a-thon in the works.  We so appreciate your prayers and encouragement as well.  I was so encouraged this week by a donation that came in from a gal who has been following our story since we adopted Hannah.  They are not connected to anyone we know.  I know there are several of you that have found us in the same way.  You are all examples that our suffering is not just about us but what God is doing in the hearts of those around us. It really is amazing. Thank you for your outpouring of love and support.  We feel so blessed by you all.


Monday, December 26, 2016

Merry Christmas

Merry Christmas Everyone,

As I write this letter I’m overcome with gratefulness.  The Lord continues to show us his love through the hard.  Sometimes it is through his word, an article, a worship song, or a conversation with a friend, a stranger, a family member.  Sometimes its through acts of service or giving by others.  It’s a reprieve from doctors apts, it’s a good night sleep, or seeing your kids thrive.  It’s honestly too many ways to recount.  God is so good.  He reminds us that this life here is so small in comparison to what lies ahead for us.  I want to bottle up this gratefulness that I feel because I know that I’m a sinner and there will be days ahead where I will forget and I will be consumed by my circumstances and the hard.  I don’t want to forget.  I always want my eyes to be focused on the things that are eternal.  The one who promises to deliver us.  JESUS.  The one who came as a babe and took on flesh to bare our sins so we could have eternal life.  Who was born in a smelly stall, beaten, slandered, and nailed to a cross on our behalf.  I hope you are all able to soak in what that means for your life and I hope you all had a wonderful Christmas and a Happy New year.

We wanted to share with you all an opportunity to come along side our family.  This last October I had a really bad fall in our home.  It led to me having a concussion.  I lost my balance just walking from one room to the next.  I couldn’t recover and hit head first into a wall and landed on the hard tile. Walking is already difficult however this shook me up pretty bad and I have been more scared to walk even in our home.  My balance has been worse because of it and it has caused us to consider other options for me.  Our youngest son Jonah has been praying and begging us for a dog for years.  With everything we were dealing with we did not want to add anymore in our lives.  We also couldn’t have a dog that might knock me over.  After the fall we started to think about the benefits of a mobility service dog.  As we looked into it further we discovered what a gift this could be for myself and our family.  A mobility dog comes trained to help people like me walk, pull my wheel chair, help open and close doors, help me out of bed or off the couch, help retrieve items like my phone and keys, call for help, help get me up after a fall and so much more. This thought brought me some comfort as I’m often home alone now.  After some prayer we found a wonderful close by organization and have applied.  We have been accepted but we are 101 on the list and the wait could take years unless we raise the money ourselves.  A mobility dog with lifetime training cost $24,000. We are hoping to do some creative  fundraising soon.  However if you feel led in any way,  to give, to fundraise, and to pray we would be so grateful.  Praying this option of a mobility dog would become a reality for our family.

With love and gratitude,

The Lietzau’s

Friday, November 25, 2016

Thanksgiving 2016

Happy Thanksgiving Weekend!  I’m so thankful for all of you who have so faithfully been following our journey over the last five or six years.  As I reflect back on this year Im so thankful for the ways GOD has sustained us.  We feel so truly blessed.  Noah’s heart remains stable, Hannah’s heart remains stable, and even though I continue to progress in this muscle wasting disease, GOD so graciously shows me the ways he is using it for his glory.  This year God provided us a home in a wonderful community filled with members of our church body who pour over us with love and acts of service time and time again.  God knew in our journey it would take a village and he certainly does provide in those times of need.  Just recently a group of men surprised us and made it possible for us to park our van in the garage.  To most this seems like no big deal in fact most do not even park in their garage.  For me however this meant no more long walks to the front door.  This meant Jason did not have to carry me time and time again in the house, and it gave me more of a desire to get out of the house.  They also took the time to tear down an old patio cover that the city was requesting be removed.  My heart swells with gratitude when I think of the many ways on a weekly basis that people pour into our lives and help lessen the load.  I hope you all know what a gift you all are to us.  Thank you just doesn’t feel like enough sometimes.  You are all constantly on our hearts and in our prayers.  I hope that you all were able to be with family and loved ones this holiday but most of all I pray that you were able to count your blessings.  In this world full of hatred, violence, sickness, and pain it can often be distracted and hard for most.  We often forget that God redeems beauty from pain.  We forget that he is still on his thrown, and most times we forget that we ought to fix our eyes on the things that are eternal.  2 Corinthians 4:18 says, For our light and temporary affliction is producing for us an eternal glory that far outweighs our troubles. 18So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.  

Happy Thanksgiving Friends,


Monday, October 24, 2016

What is Muscular Dystrophy?

Here is a good explanation of What Muscular Dystrophy is.....

Here is a list of things most people with Muscular Dystrophy wish people knew....

For those that are Bored I mean interested lol. in learning more about our particular form of Muscular Dystrophy.  Desmin Myofibrillar Myopathy....

What is the official name of the DES gene? The official name of this gene is 􏰀desmin.􏰁
What is the normal function of the DES gene?
The DES gene provides instructions for making a protein called desmin. Desmin is found in heart (cardiac) muscle and muscles used for movement (skeletal muscle). Within muscle fibres, desmin proteins are important to help maintain the structure of sarcomeres, which are necessary for muscles to tense (contract). The desmin proteins surround rod-like structures called Z-discs that are located within the sarcomere. Desmin connects the Z-discs to one another, linking neighbouring sarcomeres and forming myofibrils, the basic unit of muscle fibres. The connection of sarcomeres to each other to form myofibrils is essential for maintaining muscle fibre strength during repeated cycles of contraction and relaxation.
How are changes in the DES gene related to health conditions?
Myofibrillar myopathy can be caused by mutations in the DES gene Page 2 of 5

More than 40 mutations in the DES gene have been found to cause myofibrillar myopathy. Most of these mutations change single protein building blocks (amino acids) in desmin. Mutated desmin proteins cluster together with other muscle proteins in the sarcomere to form clumps (aggregates). The aggregates prevent these proteins from functioning normally. A dysfunctional desmin protein cannot properly interact with Z-discs, leading to abnormalities of sarcomere structure and problems with the formation of myofibrils. DES gene mutations that cause myofibrillar myopathy impair the function of muscle fibres, causing weakness and the other features of this condition. People with DES gene mutations are more likely to have a weakened heart muscle (cardiomyopathy) than people with myofibrillar myopathy caused by mutations in other genes. In some cases, cardiomyopathy is the first symptom of this condition. 

Monday, October 17, 2016

First Vlog
The following link will take you to a video I made addressing some questions about MD and the equipment I use.  I apologize because after viewing the video I realized I answered the second question but I didn't do a very good job at answering what a typical day looks like for me.

What does a typical day look like for me?  Well everyday is different.  Having three kids I don't get the amount of rest needed which can make me super tired and super cranky.  I have to be aware constantly of my responses. Just ask my sweet family I'm not always perfect at this :(.   Its like somebody trying to function daily on an hour of sleep.  I struggle with getting dressed particularly getting my legs through the pant hole, or putting on my socks.  This is from my legs being weak and not able to stretch or lift.  I have to remind myself to eat often.  It is a chore to eat because it requires so much work and effort of those particular muscles.  Everything needs to be chewed well and broken down because my swallowing muscles are weak and food gets stuck and causes choking and aspirating.  I need to take in a ton of calories because my muscles are constantly atrophying and I can not keep weight on.  I have to concentrate on my walking to avoid falls, I have to rely on others to open cans, lift objects, bend down for me etc.  I have been blessed with many helpers Though and a great team who help out a ton.  When I don't have doctors appointments I  love to meet with friends, get out of the house to soak in the sun, go to Chik-Fil-A, go on dates with my hubby, spend time with my family, and enjoy church.  I hope this gives better insight into my days and the challenges with MD.  Keep asking those questions.  I feel blessed if I could help even just one person. I love educating people and I'm hopeful that more and more research will be done in the future to hopefully make things easier for not just myself but for Noah and kids his age and younger who are dealing with the hard symptoms of Desmin Myopathy.

God Bless,


Friday, October 14, 2016

New Friends

I have been praying recently that the Lord would bring another family into our lives that is walking with Muscular dystrophy.  Someone that could encourage us and vice versa.  Well God recently answered this prayer in a beautiful way.  On Sunday a friend came up to me and began to tell me about a college friend she reconnected with on FB.  She said the family was so similar to ours that she couldn't believe it.  This family had two boys and a girl all similar ages but get this the two older boys have a rare form of MD and the oldest boy just had a heart transplant.  I was stunned and soaking up every word she was telling me eager for more info.  I asked her to send me their blog.  An hour later I was reading about this amazing family.  We have all the same doctors, they are believers, and a homeschool family.  I emailed them right away giving a little information about our family and this started a chain of emails and texts which led to a wonderful meeting yesterday.

I was eager to meet this family soon and so surprised when Jill the mom invited us over this week.  Ian there oldest had just had his heart transplant 3 weeks prior.  I was nervous of germs so only Noah and I went.  They were having a special guest  " Dean Johnson" who is apart of Victory4Youth.  Dean Johnson had heard about Ian's story and wanted to come meet him.  If you remember Power House teams back in the day thats similar to what Dean is apart of.  He ripped phone books in half for us and  bent frying pans, and shared his testimony.  It was an encouraging afternoon.  Ian is an incredible 14 year old who is allowing the Lord to use him how he sees fit.  One of the most encouraging moments for me was when Ian told us all that he told Jesus no matter what he throws at him he made up his mind to smile at it.  He also told us that when he was in heart failure the Lord met him in the comfort of a warm blanket and other ways.  Incredible perspective at only 14.  I really loved this family and I'm so eager to get to know them more and hear more about their journey.  If you would like to learn more about their story their blog is and Ian writes his thoughts as well.  Would you please pray for them as Ian is recovering and has many apts. ahead and medications for his body to adjust to.

God is so good and he continues to amaze me by the way he meets us in such beautiful unexpected ways.

Wednesday, October 12, 2016

Our Life in Pictures

I thought I would share what it looks like to live a life with MD in pictures.  Often times pictures online can give a false outlook on the realities of the disease.  People with MD just desperately want to look and feel normal so we fight against all of the equipment and things that are necessary and helpful to get us through the day.

A picture like the one below at a dear friends wedding can appear to look as though I'm full of energy and able to get around effortlessly but what you don't realize is that, my wheel chair and my husband are a few feet away, and I'm resting in between each shot. I went home before the reception to put my breathing machine on and by the end of this beautiful day I was in a recliner at the reception and every part of my body was sore, my husband carried me to the car, carried me up a flight of stairs, undressed me and put me to bed.  Thats the reality behind this picture.

The pictures below give you all a better idea of the realities of life with Muscular Dystrophy.

The top collage shows the following:
-Full leg braces(KAFO)
-Mid calf AFO braces
-a cane to help with balance loss
-Hand controls to be able to drive when your feet and legs are not strong enough
-cough assist machines for both Noah and I to assist with breathing weakness.  We do this together each day
-wheel chair for longer distance help due to weak leg and feet muscles
-lots of breathing tests

The bottom collage shows the following:
-bi-pap machine use to assist with breathing and poor oxygen
- Transplant statuses due to cardiomyopathy a symptom of MD.  This picture also represents the rollercoaster of emotions and ups and downs in health
-Echo's and lots of doctor visits
- The one with Jason on the microphone represents opportunities to share our story
-The building of relationships with doctors and the opportunity to teach and learn about this rare form of MD
- The daily medications

Then there is the multitude of things  you just can't get a picture of.  The swallowing weakness that keeps you from eating certain foods and tires you out just to chew. The divets in your spine, loss of all body fat, and size of your wrists that make you look anorexic.  The helpers that come each week, to help make dinner, and do laundry.  Family who does all the grocery shopping, errand running, and driving to doctor apts.  The husband and kids who grab stuff off the floor that I can't bend to get, carries things for me, helps me put on my shoes and socks, and carries the bulk of the load of everyday living.  The oldest boy who comes home from school so super tired, gets really out of breath,  and is exhausted by eating.

It's not always pretty but it's the road the Lord has for us and it's the way he is using our family for his glory. I hope this is all helpful in knowing what living with MD really looks like.  As always please feel free to ask any questions and let me know what you would like to see me address on a future blog post :)  Thankful for you all.


Monday, October 10, 2016


I have been encouraged to start blogging again more frequently.  I have become aware that there isn't a whole lot of information or blogs out there that share what its like to live a life with Muscular Dystrophy especially our particular form. There are hundreds of forms of MD and they all present so differently in symptoms that its difficult to find others that can relate.  One thing that almost all the forms of MD have in common is that their is no cure.  The progression is what significantly varies from one another.  This blog will still be a place to hear updates and to learn how to pray for our family but I hope it will also serve as a resource to learn and relate.  I want to start off by showing a timeline of when our journey with MD began.

1977- Melody was born and it was a normal delivery

1988- Melody could not keep up with her peers when it came to physical activity, always came in last for the mile and walked most of it, was nicknamed peanut because I was super small.

1997- Began having syncope episodes which led to pace maker implantation for complete heart block.

- Noah was born six days past my due date.  Complicated birth which led to an emergency c-section.  My lungs began to fill with fluid, my heart rate dropped and so did Noah's. Noah hit all his milestones early and we never saw any signs of MD early on.

- Melody underwent emergency pacemaker surgery to replace a lead wire.

-Jonah was born.  Planned c-section.  Healthy boy.
- I had dropped a significant amount of weight this year after just having Jonah and was now under weight and we started to become concerned.  Got my thyroid checked, blood tests, saw a nutritionist etc. No real explanation.

- Noah starts T-ball and we notice lack of coordination but didn't associate it with anything and never found it cause for concern.
- I had pacemaker surgery to replace another lead wire

- I became pregnant with our third child and miscarried at 10 weeks.

- I began to trip and fall occasionally.  We just chalked it up to me being clumsy :)

- We flew to CHINA to adopt our beautiful daughter who had a multitude of heart issues the major one being poor oxygen due to only having a single ventricle. Double inlet left ventricle, pulmonary stenosis, VSD, ASD and too many others to name.
- 3 days after being home Hannah goes into major heart failure, we were given a 30% chance of survival if they operated or the option to keep her comfortable and she would not make it through the night.  God performed the first of many miracles and she had her first successful open heart surgery.

- I was still falling and hadn't gotten any answers about my weight loss. After being referred to a neurologist we discovered it was a form of MD.  Which one though? Lots of tests, biopsies and doctors visits.

- Noah complains of chest pain a few times.  we don't think much of it but remember being encouraged by Hannah's doctor to get EKG on our boys.  I took the boys and got a phone call that afternoon that I needed to take Noah to the Cardiologist right away.
- We were able to take Noah the next day and I was told that they might have to airlift him to UCLA or admit him to CHOC.  We were stunned and confused. UCLA  agreed to let us take him first thing in the morning.  More tests, trouble with insurance, a switch to CHLA then back to UCLA.
- May 30, 2012- We were told Noah had Restrictive Cardiomyopathy and would need a heart transplant.
- September 19 2012- Noah was put on the transplant list as a Status 2.  Lots of meds, monitoring, caths, and procedures became our new normal.

- Our family goes on a make a wish trip-Disney Cruise to the Bahamas
-Tons of fundraisers
- I purchase my first wheel chair-pink of coarse
- Pacemaker surgery to replace battery

-Genetic testing confirmed that both Noah and I have Desmin Myofibrillar Myopathy a rare form of Muscular Dystrophy.  We find out that both our heart conditions are symptoms of the disease and that it manifests different in every person.
- Jonah is tested and the results are negative- Praise the Lord!!!
- Hannah has second open heart surgery "The Fontan" to place a shunt and a pacemaker implanted.
- Melody finally breaks down and decides to listen to doctors and gets her first set of AFO's.
- Got adaptive equipment put in my car
- Discovered weakness in my swallowing and breathing
- I started being seen at the UCI MD clinic and learned that my breathing numbers were very weak.
- Bi-pap was delivered as well as a cough assist machine to assist my breathing

- Noah moved from a status 2 on the list to a status 7(in active) Praise The Lord!!!
- continued progression of weakness for mom
-Started walking with a cane
- We sold our house

-Noah began getting out of breathe frequently and was referred to the CHOC MD clinic
-we learned Noah's breathing numbers are weak
-Noah receives his cough assist breathing machine to use every day
-Noah gets diagnosed with Torsil Coalition and has foot surgery
-Because of more weakness in my legs I get my first pair of full leg KAFO's
- Bought a new home close to church, friends,school and support

I'm sure I left out some things as it was hard to go back and remember it all. If you have questions for our family please leave them in the comments and Noah and I will be happy to answer them.
 It has been a hard road but we are aware that it could have been so much harder.  We are grateful for all the ways that the Lord has and continues to meet us in our brokenness.  Thankful that he gives us a hope thats far greater than a cure for MD.  He sustains us, gives us strength, and his mercies are new every morning.  He allows us to continually see him working through our situation and for that we are so grateful.

Wednesday, July 20, 2016

What were up to

There have been some big changes and big decisions made in our family over the last couple of months.  After almost a year of searching and praying for God to provide the right house for our family, he answered our prayers.  It was not in the way we had ever anticipated but we are so beyond grateful.  Our good friends Todd and Sheryl McGeorge had been praying for our family as well.  When Todd accepted a position in Idaho they hoped their house would be a good fit for us and IT WAS!!  It was bittersweet news though.  The same house I had spent countless times in being fed, prayed over, and ministered to was going to be our new home and the sweet friends I shared it all with were moving far away.  It was hard to say goodbye.  We miss them dearly and are trusting that God will use them to bless the people of Idaho. A few weeks after signing papers for the house, God began to do a work on our hearts about our kids schooling.  We decided to put both boys in private school and give another year of homeschooling to Hannah.  I feel at peace about this decision and in a lot of ways I’am excited about all of their future opportunities.  I also am grieving the end of our homeschool journey.  I have so enjoyed having them at home and getting the opportunity to teach them.  I will always treasure that time and hold onto those sweet memories.  So thankful for God’s leading.  I look forward to the ways he will use them on their campuses and the way he will use my time as well.

I continue to watch different parts of my body slowly become weaker.  Each new increase of loss is hard but not nearly as hard or as emotional as watching my oldest.  Noah has had a rough year.  He has gone 10 weeks in a cast, has had multiple doctor appointments, tests, and procedures and its wearing on him.  We have really good talks and  I’m thankful that he is able to verbally express his emotions well.  Going through medical challenges is much different at 13 then it was at nine.  He is much more aware of what lies ahead for him.  He has seen his mom get weaker and introduce more and more equipment to our family.  He realizes his struggle to accept and trust God when its hard.  He knows he can’t walk this journey alone.  I HATE that I have to watch him endure it but I KNOW and so does he that GOD is using this an incredible ways.  We talk about this a lot.  You all help him see that by your love and support.  He sees God working in the ways you all care for our family.  Every card, meal, help, etc.  It is all showing him God at work.  Noah had it on his heart last fall to invite his cousin Mason to church camp this summer.  He lives in San Diego and we don’t get to see him as often as we would like so he was excited to hang out for a whole week.  Not only did his cousin get to come to camp but he accepted Jesus into his life, a prayer Noah had been praying for some time.  I’am continually amazed and grateful that the Lord allows us to see how he is working in our lives.  I pray that my gaze would ever be fixed on him.  That I would never miss an opportunity to see him at work.  It’s so easy to get caught up in our circumstances, to buy into satan’s lies of deceit.  I fight against it all the time.  The following words by John Piper conveys my heart, “I don’t want to be a comfort-seeking, entertainment-addicted, security-craving, approval-desiring Christian.”  I’am so thankful that even though we live in a world with constant change including our emotions and how we accept each challenge, one thing always remains constant GOD.

Friday, May 6, 2016


I have been encouraged by many of you to write a post.  To be honest it hasn't been because of my lack of energy.  I have struggled with what to write and how to give an update for awhile now.   I just don’t want this blog to be a place thats filled with sadness, emptiness, heartbreak etc.  I want it to be one filled with hope, certainty, love,  joy, and so much beautiful.  I know you all  just appreciate hearing our vulnerability  so here it goes. It seems like this year has been the most trying for us. Which is crazy because we have had some rough and scary times over the last five years.  Not having our own home has gotten to us all.  It’s hard enough for a person to move from place to place but when you add in physical challenges and everyday stresses it is even more trying.  We have looming surgeries and procedures coming up and we long for the comforts of having our own beds, and our own things.  Please know that we are grateful for the ways God has provided while we search for a home that meets the needs of an unknown future with disabilities.  A home close to community who help shoulder us and lessen the load with their outpouring of help and love.  We were reminded recently of just how crucial it is to have a huge support system.  I spent two hours with a respiratory therapist who told us so many sad stories of people who don’t have good help and support and the effects it takes on their marriages and family.  We are grateful.  Grateful for all of you who pray for us and help in so many wonderful ways.  We are learning how to accept help and learning just how needed this will be for years and years to come.  It’s a hard reality to swallow knowing that you are losing more and more function.  Even harder watching your child process his loss right along side you and even harder watching your wife and child and carrying the load of it all.  It’s a daily surrender to the father for us all.  It’s battling to believe that God is faithful, that he is using this for his glory, that he is good.  Here is a recap of the family and the ways that you all can be praying.

Jason-  Please don’t forget to lift this amazing man up in prayer.  He carries so much on his shoulders.  Pray for strength for him, encouragement to get through the days, and that he would lean on and trust that God is present and cares for him and his family.

Mel- I’am slowly losing more and more strength and physical abilities.  My respiratory numbers are down and I was told it is important to get acclimated to the breathing machine.  It is putting to much strain on the heart.  Bottom line I need to wear it or I could not wake up one day. That was plenty motivation for me.  I will need a pacemaker surgery soon as well.  My pacer has moved and is protruding out causing pain. I’m trying to hold off on this for awhile. They will need to put it under the muscle this time.  It is a little more invasive with a longer recovery time.  Pray that I would not be bound by my circumstances.  That I would have a heart that desires to love and serve God with all I got.  That I would look for joy in the midst of pain.  That I would not be distracted or derailed by the hardships of this world.

Noah- We are thankful that God has continued to protect his heart.  He is still a status 7 on the heart transplant list.  He has his next heart cath on July 18th.  That is the procedure that tells us how his pressures are.  It is the test that determines if he can stay inactive or active on the heart transplant list.  Noah has begun to see a team of doctors at the CHOC Neuromuscular Clinic.  They will monitor his progression of this disease and treat as necessary.  He is having some breathing difficulty and is working with the Pulmonologist to discover what the issues are.  We also recently discovered some problem areas in his feet that will require surgery soon. Please pray he can get this done in the next few weeks so he will be recovered in time for Camp this summer.  It has been a lot more appointments for him and it is wearing on him emotionally.  He sees glimpses of what his future could look like and its been a lot for him to process.  Pray for him as he navigates the emotions of it all and for us as we try and walk through it as best as we can with him.  He recently was baptized as church.  We were so proud of his decision and even more proud of the ways we have seen God working in his heart.  He knows God is working through these challenges but is also feeling the heaviness in ways he hasn’t over the last four years.  He encourages me all the time by his willingness to accept each challenge as it comes.

Jonah- This sweet boy turned 10 recently.  He is our daily entertainment.  He brings so much joy and comic relief to our family.  God knew we would need his contagious joy in our lives.  He has had an amazing season of baseball coming into the playoffs as the second place overall team.  He remains healthy as ever.   He loves the Lord and is often eager to lead his family in the word. He shows such great empathy and compassion and has stepped up to help his momma in beautiful ways. Pray for his heart as he watches his mom lose more function and his siblings go through hard procedures. Pray that he would cast his fears on the Lord.

Hannah- We are so thankful to say that our sweet girl is doing so well.  She goes in every couple months to see her cardiologist and electrophysiologist(pacemaker doctor).  She will have a heart Cath as well this summer.  This is to check her pressures, check the shunts in her heart and to make sure she hasn’t developed any collateral veins that need to be cauterized.  She is a big helper and loves to help wherever she is needed.  She is her brother Jonah’s biggest fan and talks about baseball constantly.  She never tires of telling us how sad she is that she can not play on a team.  We are thankful for her recent decision to put her faith and trust in Jesus.  You can pray that she would continue to grow in her knowledge of what that decision means.  Pray that God would continue to protect her heart.  Pray for her upcoming procedure that there would be no surprises. 

Thank you again for all of your love and support.

The Lietzau’s

Sunday, February 7, 2016

Wish our family had more spoons

I wanted to give you all a quick update on our family and tell you thank you for your prayers.  We have had several doctor appointments over the last month.  Noah's heart cath couldn't have gone any better.  The doctor was very pleased with his numbers and said they even looked better than his last one six months ago.  Noah also had a stress test and the results from that were great as well.  We were  so pleased and thankful and just thanking the Lord for how active Noah has been able to be.  Then all of a sudden out of the blue Noah had a bad week.  He had a couple episodes of getting out of breathe and his heart racing.  He started having really bad headaches which left him wanting to do nothing but lay around for four days.  It was scary to see such a change in him and I immediately feared that this was the start of heart failure.  UCLA was confused by it all because he has had such great numbers on everything.  They did an Echo and that looked the same as before.  They tested for several viruses, they put a 48 hour holter heart monitor on him, and they put a referral in for him to see a neurologist.  He is back to his normal sweet self but we are still left with no answers.  It is so hard to not be in constant fear that your son could go into heart failure at any moment.  His heart is sick and although he looks great, the reality is he has a serious heart disease.  They believe that Noah's skeletal muscles are now being affected by this disease as well.  We have an appointment in April to see the CHOC neurology team however UCLA would like him to be seen sooner and are working hard to get him in ASAP.  We will keep you updated on those appointments.  Please continue to lift him up in your prayers.  He is older now and after seeing the effects of this disease on his momma it is a lot to process.

Hannah is doing great and there has not been any new changes with her health.  She had a good visit this month and we are always thankful for those.  The doctor will see her again next month.

Jonah had his yearly echo and thankfully he remains the healthy one in the family.  He got on a great baseball team this season and continues to bring joy and humor to our family.

Jason continually cares for everyone in this family and I'm constantly amazed by the strength he has to persevere.

As for the momma.  It is a difficult road.  Things keep slowing down for me and I continue to grieve the hard, and I struggle with walking in joy, and hope.  Frustrated that I'm the one who passed this to my boy and sad for the loss and grief he will experience.  I'm emotionally and physically drained.  I long to walk this road in a way that glorifies the Lord.  I'm confident that he is doing beautiful work through this hard road but I find myself kicking and screaming through the process.  I HATE every bit of this disease and how it effects everyone and everything around me.  Their is so much of it I HATE. I try not to stay in that place though.  I allow myself to be real with where I'm at but  I don't want to miss what God is doing because I'm confident and have seen evidence of his handiwork. The thing that keeps me going is the assurance and hope I have knowing this is so small in comparison to eternity with my father.

It is difficult for people to understand the struggle when you don't look sick.  I found this wonderful illustration to be so helpful.  It is called the spoon theory.  I hope it helps any of you who have somebody you know who is dealing with a disease that just wipes them out.

The Spoon Theory

by Christine Miserandino

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
Cartoon image of Christine Miserandino holding a spoon
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

The hardest part for me is learning how to balance my spoons with so many in my life who need and deserve one.  Thankful for so many of you who try and give me more spoons.  Your love and help is an incredible gift that I do not take for granted.

Sunday, January 3, 2016

Make Us A Vessel Lord

I’am filled with such encouragement this morning.  Our service at church was so beautiful and spoke straight to my heart. We had a reading service on 1 Peter.  Both the reading and the worship was beautiful.  I kept imagining myself in one of the towns in a crowd of people hearing Peter speak these words to me.  I kept soaking up every word and was hungry for more. It has been an emotional week for us.  We discovered that Noah is already starting to show some forms of muscle weakness.  It is not very pronounced, and we will find out more details when we see a Neurologist on January 12th.  Still it hit me pretty hard as I thought about my son having to face the same challenges I have struggled to accept for myself.  My heart aches for him and I wish I could take it all away.  Yet I was reminded today how much the Lord works in the Hard.  How he desires to sharpen us, to use us, to bring Glory to his name in the most beautiful ways. 1 Peter 4:12-13 Dear friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you. 13 But rejoice that you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed.  I long to see his glory revealed in amazing ways.  We have several appointments coming up for our whole family.  Noah has a stress test tomorrow at UCLA and then another heart cath and nuerology apt. next week. Hannah has Cardiology apts. as do I. I don’t want to be surprised by what lies ahead for us.  I want to take every single opportunity I can to use it for the Lord.  This year I want more than anything for our family to be a vessel in the hard.  This doesn’t mean that we wont struggle with worry, with joy, with trust.  It just means that we surrender to Christ, we don’t waste our suffering, and we cling to the one who is everlasting instead of the temporal things of the world. What things are you clinging to this year? What are you putting your hope in?

Here are some lyrics to a song we sang this morning that cause my heart to want to burst.  I literally can not sit still with this song.  I apologize to those around me this morning who probably wondered if I was having some kind of seizure. It is often hard at times for me to keep my composure when my heart is so into worship. Thankful for an incredible worship team and for the work that gets put into choosing songs that correlate to the message.  I hope you are just as encouraged by it.  Please keep our family in your prayers as we head into a busy month of doctor apts.  As always we are thankful for each of you.