Counting Our Blessings

Counting Our Blessings

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.

Monday, March 23, 2015

A Hard Goodbye

On my last post I mentioned a beautiful Woman Kara Tippets.  She is the author of The Hardest Peace and writes on a blog called Mundane Faithfulness.  This past Sunday she has gone to be with the Lord. Kara had stage 4 breast cancer that had spread throughout her entire body. She fought a long and hard battle and never wasted a single second of her cancer or an opportunity to share what Christ was doing in the midst of her suffering.  I looked forward to reading her blog posts on a daily basis and was always so surprised that she had the strength and the emotional capacity to write.  Kara wouldn't have it any other way.  She was determined to fight through her battle and to bring others along.  This woman has impacted my life so much and I know hundreds of others.  While I'm sad that she doesn't get to enjoy anymore time hugging her husband, kiddos, and many friends who held her hand through this journey.  I smile knowing that Kara is free from pain and suffering and in the arms of her precious Savior. Kara was kingdom focused living a life with life after death in mind.  Oh how I long for that to be my story. http://www.mundanefaithfulness.com/home/2015/3/6/kara-tippetts-documentary Please keep this dear family in your prayers.  I pray that Kara's story would have a lasting impact on her children and steer them on to share with others how their mom  lived and loved well for the glory of God.



Monday, March 9, 2015

Longing to suffer well

I again can not express enough how much your comments and support have lifted me up.  These past two weeks have been rough and busy.  In the midst of some overwhelming news about my disease I was matron of honor in a dear sisters wedding.

It was emotional as she closed one chapter and began a new one.  My dear friend is a mother of five who lost her husband a year ago to Luekemia.  During my sweet friends vows she told her new husband that he was not her plan B.  Oh how I loved that.  God is sovereign over all things and my dear friend knows this well.  She knows that this was always God's plan.  Knowing God is working out his plan through this awful disease is the only thing that helps me walk through it.  This latest step in the process of my MD has brought on a lot of fear.  Hearing doctors say things like ventilators and breathing machines causes me to tremble.  I hate that I allow the unknown to rob my joy and stricken me with unnecessary fear.  I HATE that!!  I don't want to waste a second on this disease.  I want to use every ounce of it for God's Glory.  I follow a blog of this amazing gal Kara Tippet who is suffering from stage 4 brain cancer and is on hospice.  She is the Author of the incredible book I have talked about before called " The Hardest Peace".  If you have not read this book I highly recommend it.  Kara is not wasting one second of her disease.  She doesn't enjoy the pain and wants as much time with her kids that God would allow but she suffers well.  She inspires me to not take anything for granted and to not waste this disease but to live my life for the Lord.  My desire is to suffer well like Kara. My desire is to make Jesus known in all he has me do.  Please pray that I would not let fear overtake me.  Pray that God would be glorified through all of my suffering.

Thursday, March 5, 2015

Guest Post from Marla


Thank you to everyone who continues to love and support Mel, Jason, and their kiddos. Mel asked me to write a guest blog post regarding her most recent appointments. As you know, she has been having progressive muscle weakness with some rapid changes recently. This has affected her significantly in the areas of walking, driving, daily living, and most recently swallowing and breathing. She finally got into the MD clinic she was hoping for.  At her last appointments, she heard a lot of information about the progression of her disease and some of the hard realities that will likely come - in her words - sooner rather than later. Sooner than we hoped. Sooner than we expected. The doctor recommended that she start wearing a Bi-pap machine (which pretty much blows air into your lungs from a mask) to give her diaphragm a break from the constant work of breathing. Unfortunately they learned that this will not improve her numbers or respiratory muscles.  They hoped that this would help increase her energy and give her more strength for the day to day. The Bi-pap machine arrived last week, and Mel has had a challenging time adjusting to it. Not just the machine itself, but everything that comes along with it - the grief that comes from a growing dependence on machines to do "normal" activities, less control of her circumstances, fear of the future and the progression of this disease, greater need for extra help from other people...it is taking a toll on her emotional and mental health. Sadness, fear, helplessness. It is overwhelming.

Please continue to battle with our dear friends as they face the daily realities of this disease along with so many other challenges. Pray that they would taste and see that The Lord is good. Pray that they would rely not on their self-sufficiency but on the abundant grace that is sufficient for them in their weakness. Pray for moments of light and hope in the midst of a dark time. And pray that they would be strengthened to continue to look to Jesus and honor him with each breath and moment they are given.

Thank you, friends.

Marla


Wednesday, January 28, 2015

Guest Post By:Samantha Stowell




Thursday, January 22, 2015

Cause for Celebration

I want to start off by saying thank you so much for the overwhelming response to my last post.  You all have been so encouraging to us.  It feels great to know we are not walking this road alone.

The day after I posted my last post we finally were able to get an appointment at the UCI MD clinic in Orange.  I have to say it was worth the wait and all the frustration.  They got us in the next day.  We met with a wonderful Neurologist who we could tell took the time to review my file.  She encouraged me that I would be well taken care of.  At the UCI MD clinic they take a team approach.  Meaning each time I'm seen at clinic I will see a team of doctors.  Pulmonologist, cardiologist, physical therapist and like six others.  We were THRILLED at this.  I go back on this Tuesday to meet the whole team and discuss a plan of action.  I have already been told that the biggest concerns are my respiratory muscles and heart so they will be monitoring those more closely.  We are so thankful for God's answered prayer in bringing us to this place.  Someone asked me if I was frustrated that we didn't choose them over UCLA.  Honestly it was hard to wait to get to this point but I started thinking about the many doctors I have seen and that now have exposure to this rare disease.  Hopefully they will be able to help other people suffering from this same disease because of their exposure and experience with me.  I look forward to updating you as we learn more about the future plan.


Today was Noah's appointment at UCLA.  We haven't seen the team since his last heart Cath procedure in September.  We were shown pictures of Noah's heart and his pressures and were amazed at how well he is doing. After talking with the team we feel that it is best to make Noah inactive on the list and reevaluate his progress in July at his next heart cath.  Their is risk to this but we feel there are risks both ways and we feel at peace with this decision.  On the list or off the list we ultimately know who is in charge :)  So how does this work?  When a person goes on the list they are given a status.  If you are waiting in hospital you are given a status 1A and are priority.  If you are waiting at home on IV meds you are given a status 1B second priority, if you are able to wait at home on meds you
are a status 2, and if you decide to go inactive for awhile you are status 7A.  Noah is currently at status 2 but will now go to status 7A.  He will not lose any of his time on the list and can go back to active at any time.  Jason and I feel at peace.  The last four months have been hard for us.  We have been worried about getting a call and having to accept a heart when he is doing so well.  We will feel so much better about accepting a heart when he truly needs it.  Transplant is great in the fact that it saves lives but it also causes a ton of other issues and complications so the longer we can pro long it the better for our son.

Please continue to pray for Noah and for our family.  We continue to trust in the one who formed Noah and has him in the palm of his hand.




Tuesday, January 13, 2015

Living Life With MD


I have been encouraged by a few to share my story about living life with MD. To be honest it’s been something I haven’t really felt comfortable sharing.  I know many of you will find that hard to believe since I pretty much live my life like an open book.  I think the reason is because I don’t want to be pitied or made to look weak.  Vain I know. It’s hard to admit weakness.  It is something that has brought so much of my sin to the surface, it has robbed my joy, effected my marriage, family, and friendships, kept me from doing things I love, and dashed future dreams.  It is making me rely on others for help and making me loathe words like adaptive equipment, disability, and disabled.  At the same time this disease has made me compassionate towards others who are fighting battles, it has taught me to let others help, it has made me rely on the Lord more, it has strengthened my faith, made me deal with ugliness in my heart, and made me long for Heaven.


We first noticed symptoms in me about 6 years ago.  It started with weight loss.  I had begun to drop a lot of weight for no explained reason.  I have always been petite but I was dropping to an unhealthy weight and losing muscle.  I also began tripping and falling. Kind of relieved to know I’m not just a clumsy gal. Four years ago after a trip to New York where we did a lot of walking I began to feel as though I was carrying weights in my legs when I walked.  At first I thought I was just out of shape and needed to hire a trainer.  After a regular check up with my doctor, he watched me walk and sent me to a neurologist.  I remember spending an hour and a half with the neurologist where he pointed out all these weaknesses I was completely unaware of.  I had just been compensating for things over time not even realizing that I had lost the ability to do simple things like give a high five, get into the car without using my hands to lift my legs etc.  It was very mind blowing to me and scary because none of the doctors could tell me what and how fast this would progress.  Over the next couple of years I would endure lots of testing, poking, and prodding.  Many doctors could tell me that I had a form of Muscular Dystrophy but none could tell me which one.  Their are many forms and they all effect the body differently.  Most have no cure but the life expectancy and progression of weakness varies in each one.  During all these visits and tests we began to see more and more weakness.  It has been a slow progression but one that is starting to have heavier impact on my day to day life. I can no longer walk very far without the need for Mustang Sally(my pink wheel chair) I wear Orthotic braces to keep me from falling, I now have to have hand brakes in my car because my legs are deemed unsafe to drive.  I have difficulty walking up a step, swallowing,slurred speach due to lazy tongue, opening up jars, using scissors, washing my own hair and the list goes on.  I was desperate for answers and help.  Last year I underwent genetic testing and found out that this rare disease is called Desmin Myofibrillar Myopathy.  Both Noah and I have the gene but it represents differently.  Mine has effected the conductivity of my heart and skeletal muscles and his has presented in Restrictive Cardiomyopathy.  We do not know if he will develop the adult onset of skeletal muscle weakness like I have or not.  It is something I give up to the Lord frequently.  I pray he would not have to endure this on top of living a life with Cardiomyopathy.

One of my biggest struggles with living with this disease is not having a doctor familiar with it.  I have not had luck getting into the MD clinic or finding someone to follow my case.  I’m so passionate about wanting to do everything in my power to help my situation but do not have the knowledge or tools to make this happen.  Please pray that we would find some good doctors that could help.  One of the biggest blessings however has been the loving support from family and friends.  I have an army that pitches in to help and feel so grateful.  I wish it wasn’t needed but am growing in my ability to accept well.   These are big things, and sometimes have been hard to bare but God has been so faithful in his word to show me how intentional he is in our suffering.  It’s all so that the works of God can be displayed. I’m sure there are many of you that are up against it now or feeling overwhelmed.  I know I’m not the only one experiencing hard things.  Whatever your story is whatever your hard is. I can’t stress enough how God is sovereign over all these things. Not only is  He  in control of our trials but he purposes them for our good. Yep he does just read Romans 8 -It doesn’t mean that it takes the difficulty away and that all these things aren’t horrible and painful now and that we should love it and go through life saying everything is fantastic. I just believe that it is nothing compared to what is waiting for us.  Something far better than we can even imagine. An Eternity with our Heavenly father. An eternity with no pain, no trials, no more suffering. Oh how I long for that glorious day.