Counting Our Blessings

Counting Our Blessings

Friday, May 6, 2016

Update

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 www.butyoudontlooksick.com

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.




Tuesday, September 22, 2015

Update on the Lietzau's

Our family started back to school and are slowly settling back into our routines. When school started we were in the middle of a big move.  We sold our home of ten years and decided to relocate to LaMirada.  This was a difficult move for us because we loved our home so much.  We had done so much work on that home and had built so many wonderful memories.  We prayed for a long time about moving and whether or not it was the right decision for our family.  The timing was never right and so we kept putting it off.  Our desire was to be closer to friends and our church community who had a desire to help come along side our family.  My disease has slowly kept progressing over the last few years and we know it will continue.  With several flights of stairs our home was no longer allowing me to enjoy our patio or the outdoors and I would often be isolated to the bedroom which was a constant reminder of my disability. We decided it was time to step out in faith and make the move. It was so hard to say goodbye to our home but God has really made it known in some beautiful ways that this was the right move for us.  When we approached our realtor and close friend about moving he recommended we sell our home first so that we were not contingent when we went to make an offer on a house.  A few weeks later the Lord answered our first prayer and provided a wonderful fully furnished house for us to stay in.  As if that wasn’t great enough it also happened to be on the best street, with many friends from church, and wonderful neighbors who have blessed us richly and welcomed us into this wonderful community.  On top of that our home sold in three days and we were able to get our asking price.  Since being in La Mirada our kids have played outside every day with friends, riding bikes etc.  Many have lessened the load already by taking our kids to classes, offering to pick things up at the store, and have come to sit and visit.  We feel so blessed and are confident that God will reveal our future home here in La Mirada in his perfect time.  We very much covet your prayers.


Noah’s health seems to be doing very well.  I can’t tell you how much joy it has brought me to see him out riding bikes with his buddies.  I don’t take those things for granted because I realize how fast that could be taken from him.  We just celebrate today and thank the Lord each day for sustainig him.  We go back to UCLA next month for a check up.

Hannah gave us a little scare a week ago.  She was complaining of her head hurting and fainted on the way to the couch.  We took her to CHOC and everything checked out ok.  After wearing a holter monitored it revealed that she is having some skipped beats so they will keep monitoring her and she goes back for more testing next month.

As for myself my body continues to get weaker.  Some areas more than others.  My swallowing muscles are getting weaker making it more difficult to swallow and get down food.  We are praying I can be dilligent in making an effort to do the things I need to do to help in this area.  The next option for this is to go to a feeding tube and I would really like to push this off for as long as I can.  Each step is a difficult one.  I’m learning to grieve well and some days are harder than others.  I want to walk this road with Joy and not miss a single second of what the Lord has for me in this.  The other night I sat and watched this sweet boy from church laugh and play with my daughter with such joy oozing from his body.  This sweet boy wears a prostetic on his leg, and on his hands he is missing several fingers.  His balance is off, he has difficulting standing without rocking to hold his balance and falls constantly.  I often can relate to him in so many ways.  This boy brought tears to my eyes though as I sat and watched him play.  Everytime he would fall he would get back up, smile and just keeping having fun. He never seemed bothered by it for one moment.  He encourages my heart.  So often I can get so frustrated with every fall and every hard step, or not being able to keep up.  He doesn’t even think about the difficulty,  he gets himself back up, dusts himself off and enjoys life to the fullest.  May we all be so determined and so full of joy like this boy.




I feel so honored that you all still pray for our family so faithfully.  I hope you know we are so grateful for each one of you.


Thursday, July 23, 2015

Update

I apologize for being so late on this update. It has been a CRAZY week. Not only did we have Noah's big Cath procedure, we had to go back to UCLA on Wednesday for a stress test, we put our house up for sale, and made an offer on a house all in the same week and it's only Thursday. This momma is T.I.R.E.D tired.

Noah's heart Cath went great. Their were no issues and Noah did great. His numbers have increased but are still in the lower normal range. The doctors feel like he can remain inactive for now. They will continue to see him frequently and monitor his symptoms. Because of the increase they would like to do another heart Cath in six months instead of 10-12 like normal. Over all we are so pleased with the outcome.  We wish his numbers would have improved but are thankful he is allowed more time.  Please continue to pray for Noah that he would remain strong and that his numbers would improve.

Why are we putting our house up for sale?  We have thought about moving for the last couple of years but the timing has not been right. Because of the type of progressing disease that I have we know that we will need a house that fits those needs as well as long term care.  We have loved our home and have put a lot of work into it however it saddens me not to be able to sit in my patio because of the number of stairs. We desire to live close to our church community and friends who can help shoulder the Load as things progress and become more difficult. We are praying that God would provide the perfect home for our families needs.

Thank you for continuing to walk along side of us and continually lifting us up in prayer. This morning I was so encouraged by the following passage and it was just another reminder to me that God is in the hardness of our stories and he is doing his glorious work. I hope it encourages you as well.

There are many black dots and black spots in our lives, and we cannot understand why they are there or why God permitted them to come. But if we let God come into our lives, and adjust the dots in the proper way, and draw the lines He wants, and separate this from that, and put in the rests at the proper places; out of the black dots and spots in our lives He will make a glorious harmony. Let us not hinder Him in this glorious work! —C. H. P.

Friday, July 17, 2015

Prayers Please

Dear Friends,

This Monday July 20th at 8:00a.m. Noah will be having his heart Cath Procedure at UCLA.  This is where they put him out and take a good look at his heart.  Back in September when they did this same test we got some AMAZING results.  We were stunned that the doctors told us his pressures were in the normal range.  This is when after consulting with the team we made the decision to make him inactive on the transplant list.  We have no idea why his numbers had increased.  The doctors think the medications have been helping but I give all the credit to our God.  We have been so thankful for this gift of time that has allowed us to have the freedoms to vacation and not be worried that at any moment we could get a call and onto the hospital for Transplant.  If his numbers have declined he will need to be active on the transplant list once again.  We want more than anything to avoid that step.  We would love more than anything for him to have more time, to be able to be a kid, to not have hospital stays, and meds that will hurt his body.  Please pray that the doctors would be pleased at his pressures and that his story would be one that points and gives credit to the Lord.  Pray that we would trust the Lord in whatever the outcome is for Noah. I have had an upset stomache all week and anxiety.  I thought I was doing ok until a few days ago. Pray that we would surrender our wants and desires and trust in God’s perfect plan for Noah.  I know I say this everytime but thank you for continuing to follow our journey and for your constant prayers.  I ran into a few people over the past few weeks that have told me that their kids pray for Noah every night and it brought such joy in my heart.  I pray that they would continue to see their prayers answered.



After waiting three years Noah finaly got to go to Hume Lake Camp this summer.  We all had a wonderful time and we felt so blessed to be up there.  This journey has caused me to not take certain things for granted.  I tried to soak in every moment realizing that it could be taken away from us again.  Thankful to the Lord for allowing us to enjoy moments like these and to create many wonderful memories to hold in our hearts. 


Wednesday, May 27, 2015

3 YEARS


This Saturday will be three years to the day that we were told that our boy had Cardiomyopathy and would need a transplant.  It has and continues to be a journey filled with fear, faith, joy, tears, and so many more emotions.  We have seen God do incredible things.  The fact that Noah is still stable, doing well, and has not had a transplant is a huge gift that we don’t ever want to take for granted.  I know people are often confused by that statement given that all of us prayed for a heart transplant for so long.  Transplant is a wonderful life saving option but it is only an option for so long.  Your body will keep trying to reject the new heart because it recognizes that it is a foreign object and not your own.  The lifespan of a heart varies and it is common to need multiple heart transplants.  The anti-rejection meds they give you wreck havoc on your body causing many more diseases and possibilities for other transplants like kidney, and liver.  There are multiple doctor appointments and hospital stays.  Don’t misunderstand me we will endure all of this if it means our son gets a chance to live.  However we are so grateful that God has given him more time. More time to be a kid.  More time to build memories and travel as a family. Please pray with us that God would continue to keep Noah stable. We don’t know how long he can maintain being stable.  We do know and understand however that we are not in control.  God can still choose to heal his heart, he can choose to take this away completely, he can also choose to make him active on the transplant list again, or even bring him home.  We are not in control so we trust the one that is.  Noah is so excited to go to camp this year.  Something he has missed out on for three years.  After camp though he will have a heart Cath that will check the pressures in his heart.  This is an important test.  If his numbers are good he will remain inactive.  If they have changed than he will need to be put back on the list and face the possibility of transplant.  Being put back on the list will put an end to our vacations and will mean we are bound to our phones, holding our breathe when every call comes in.  It has been incredible to have had a break from that for the last 9 months.


While Noah has remained stable, my disease has unfortunately kept progressing. We recently got the opportunity to go back east with my family for a fun filled educational trip.  We visited DC, Williamsburg, and the boys visited NY.  This trip was wonderful being with my family and I wouldn't trade it for the world, I was immensely grateful for it  but it was hard emotionally.  My disease was smack in my face.  I spent more time in my wheel chair than I ever had, I struggled to get into shuttles, subways, and bathrooms without assistance.  I was unable to participate in some things because of stairs etc.  It is a daily struggle for me both physically and mentally.  I absolutely HATE this disease. I HATE that me and my son share it.  I HATE that he may one day have the same physical struggles as me.  I want more than anything to feel strong and not have to rely on anyone or anything for that matter.  I know that statement may come across harsh but when you struggle to just walk, breathe, and swallow normally it will makes sense.  I HATE seeing it continue to progress and I often worry about what else I will have to give up.  I spend my moments wishing for the days when walking was so much easier and feeling sympathy for those who can’t walk at all. Trying not to feel sorry for myself but at the same time allowing myself to grieve the things that I’am losing. All the while Trusting and knowing that God is doing his work and that it’s all so that the works of God can be displayed.  It’s a daily surrender for me.  

When I sit and think about this journey over the last 3 or four years and the many blessings that have come with the hard,  I truly am grateful.  Grateful for the opportunities to see God at work,  for the strangers we have met who are now dear friends, for the answered prayers, and for all of you who have walked with us so faithfully.  Thank you so very much.  We ask for your continued prayers as we seek to live a life that Glorifies the Lord.