Thank you to so many of you who prayed for Noah’s Cardiac transplant clinic appointment. Last visit they pushed Noah’s appointments to every six months. This was great news but also the longest he has gone in the five years that we have been going to clinic. This made me anxious for some reason leading up to this appointment. I feel like I can never fully accept the good news without always waiting for the next ball to drop. We haven’t exactly had the most smoothest ride these past six years. We go long enough to take a big breathe and then go straight into the next big situation. I’m always trying to be on guard waiting and preparing myself. That might be a coping strategy of some sort. It brings me comfort when I have all the knowledge and Im prepared. Ha! I’m not sure that’s where God wants me though. If we are always prepared then we operate without really needing him. I feel like I’m able to accept what we have been dealt with and trust that God is working out his plan in each situation and I know with all my heart that there is purpose in it. I just have a hard time trusting that everything is fine and is going to stay that way. It’s like I’m always waiting for it. Waiting for the next big tidal wave to hit. This is how I went into todays appointment. When the doctor came in and said his heart echo’s just keep looking better. My heart felt relief but still not able to fully celebrate. Don’t get me wrong I can’t even begin to tell you how thankful I was to hear those words. I’m so thankful but I still live each day wondering when it’s going to decline. I’m fearful of what could come next. They still want to do a Cardiac MRI to get a better look. I think to myself Is this the test that creates the next tidal wave. Why am I so fearful of what’s to come next? I mean after all the Lord continues to show an immeasurable ways his goodness in the midst of these trials. He uses them over and over for his good. We are just so tired and fear the emotional weariness that comes with each big wave. Each day is a battle friends. Some days we feel strong and some days we just don’t. I always want to be real with where I’m at. It’s a struggle. The last few weeks have been hard. Noah is continually feeling the effects of his Muscular Dystrophy progressing and the doctor appointments for him have picked up. After a wonderful meeting with Noah’s school they helped us adjust his schedule. He comes home at lunch which has allowed him some much needed rest and availability for appointments. It’s hard to watch his muscles start to fatigue and see things that were once easy to do become difficult. God is growing him and will no doubt continue to use him. I want to be a good model for him of trusting and persevering. I Know I can only do this with the Lord’s help. Please pray for us friends. Pray that God would meet me in my weariness. That tomorrow would be a new day. An opportunity to meditate on Mathew 6:33-34. That I would lay my fears at his feet, trusting that he has us all in the palm of his hands. Pray that we would not grow weary, that we would run to Jesus every time. Thank you for allowing us to pour out our hearts and for continuing to walk this road with us. We are grateful for you.
Friday, July 28, 2017
I wanted to check in with you all and give you an update on how we are all doing.
So many of you have asked when we will get our service dog. I wish I had an exact date to share with you all. We are eagerly waiting to be matched with just the right dog that will be able to assist me with my specific needs. We raised all the necessary funds and are on the matching list waiting our turn. We have not been given any kind of time frame which makes it very hard to be patient. We eagerly await the day I can start my handler training and introduce you all to our new friend.
Mel- I’m super thankful to be on the other side of those four surgeries. The wires are securely in place, I’m slowly regaining my strength and energy, and getting back to some independence. It feels good to not be the patient and to be Mom and wife again. It’s great just to be able to do normal things like school shopping or taking the kids for ice cream. My heart is doing good for the most part. I have Cardiomyopathy(weakening of the heart muscle) however my heart is functioning well. Overtime it will get weaker and weaker so we will start me on some preventative meds early to try and keep it stable. My G-tube has been tricky getting use to the feedings and amounts. My weight has essentially stayed the same and sometimes gone down by a pound or so. My Gi is not so concerned with the number on the scale for my weight as what my albumin levels are. If my albumin levels are good then the G-tube is serving its purpose and I’m fine and he is happy. It’s been an adjustment but we are working out the kinks.
Noah had an amazing trip to Japan. He fell in love with the country, enjoyed the people, the food, his team, the culture, and doing ministry. He really wants to go back next year and even grew a heart to teach and live there in the future. Oh Boy! God has big plans for this boy. Noah went to Hume Lake camp this year and it was very hard on him physically. It’s a challenge at his age to have to face his limitations and make hard choices. He tires easily, gets out of breathe, and feels the challenges of doing physical activity. He continues to go to the Muscular Dystrophy clinic and cardiac transplant appointments. We are noticing mild progression but more than that a matureness beyond his years as he accepts whats in front of him and relies on the Lord. He said the other day how thankful he was for the strength God has given him up to this point. He encourages me daily with his amazing attitude regarding his challenges.
Hannah is doing great. Since she is getting older her cardiologist wants to order a heart stress test and cardiac MRI to see how well she is tolerating activity and to see how the anatomy of her heart is doing. It’s amazing that this sweet girl is functioning on a single ventricle and 17 other heart related issues. You would never know it by looking at her. She is full of energy most days and I have to remind myself to be grateful for that energy :) She is looking forward to going to traditional school this year and still has big plans to be a cardiologist.
Jonah continues to bring the fun and funny to our family. He is our constant entertainer. He is a huge helper to mom and can make me smile on even the hardest of days. He has a huge heart and constantly leads our family in bible time.He recently moved up to the middle school youth group at church. Gulp! He enjoyed a week up at Hume Lake camp with the youth group. He had a blast. He is enjoying the summer and looking forward to getting back into theatre when school starts. We are so thankful that God has protected his body and continues to keep him healthy.
Jason continues to be the rock of our family. He carries so much on his shoulders that I don’t know how he does it most days. He works hard both at his job and at home. So thankful for the ways he pours into our children, myself, and others. We are learning to not take little things for granted like slow dancing in the living room:) Am I the only cheesy one that does this? Do you all hear a song and think of your spouse or a loved one? This is my recent song to Jason https://youtu.be/lp-EO5I60KA Ok the first line says "When your legs don't work like they use to before" yep I cried after I heard this one but then he turned around and says well this is my song to you https://youtu.be/w2CELiObPeQ and I was a balling mess. We are sometimes sappy like that and I love it. We are grieving a lot of things. We both don't always do it well in fact it's easy to take the pain out on one another. We need lots of grace with each other and the Lord. It's a lot what we face on a daily basis and sometimes we do it well and sometimes we don't but at the end of the day we LOVE each other and we LOVE Jesus and we have a hope that is greater.
We are thankful for the ways God continues to meet us and provide for our needs. We are grateful for your prayers and the ways you all walk beside us.
Thursday, July 6, 2017
I’m often surprised when out of no where the flood gates of emotions come pouring out of me. Grief is a tricky thing. I’m experiencing a lot of it lately and in many different forms. My particular disease is a slow progressing disease that continues to get worse over time. Which means I continue to feel the losses. The grief is continual and not just for me but for those closest to me. It hits us all differently but none the less can be very painful.
This wasn’t how it was suppose to be. Romans 8:19-23 says; For the creation waits with eager longing for the revealing of the sons of God. For the creation was subjected to futility, not willingly, but because of him who subjected it, in hope that the creation itself will be set free from its bondage to corruption and obtain the freedom of the glory of the children of God. For we know that the whole creation has been groaning together in the pains of childbirth until now. And not only the creation, but we ourselves, who have the first fruits of the Spirit, groan inwardly as we wait eagerly for adoption as sons, the redemption of our bodies. Oh how I can’t wait for this body to be redeemed.
The last 15 weeks have taken a major toll on my body. Four surgeries in ten weeks. The first surgery (g-tube) we felt hopeful that with the proper nutrition it would bring my weight up and give my body good strength. No one expected that three back to back surgeries would follow. No one expected the hard recovery each one would take and I certainly did not expect the emotional toll it would have on those closest to me. I have taken many steps back and it is really discouraging. I’m nearing the end of recovery on this last surgery weaker and down on my weight even more than before I headed into the first surgery. This is all discouraging and many times I allow myself to feel all the feels but I’m also aware that Satan loves to pry on the weak. I try not to allow myself to stay in my weariness. I look at all the ways God provided during these hard 15 weeks, the ways that he met me during my darkest moments, the ways I felt his strength, the ways he protected me, and the ways he brought his people to care for us. This doesn’t always mean that I magically feel better but allowing the Lord to fix my gaze on him and the ways he beautifully works in the hard reminds me that it’s not about me. It puts me in a place where the Lord is available to do his best work. I know with all my heart that there is purpose in my journey. I know that there is purpose in your journey. Whatever you are facing I hope that you believe that God has purpose for it.
Next month my three blessings go back to school. Hannah will go to public school this year. This will officially be the end of my homeschool journey. Another loss. This is a hard change for me but a good needed one as well. The boys have thrived this year in school and we know she will as well. I have wondered and asked the Lord what he wanted me to do while the kids are in school. I have cried out to him that I want to feel purposeful and not just cared for by others, I have confessed my fear of wasting the day away on the computer. I want to feel purposeful. Recently a friend posted information about biblical counseling. I was intrigued and looked into it. After prayer and some conversations with the hubby and friends I have decided to pursue my certification in Biblical Counseling. I’m excited and a bit intimidated by the work but excited to see what the Lord does with this new endeavor. Please pray for us all as we seek to grow and trust in the one who goes before us.
Sunday, June 11, 2017
Friends I’m so thankful for the amount of love and support you have all shown me over the last few months. I made it through number four and am at home recovering. It will be another 6 weeks before I can raise my left arm or drive. Please pray as we adjust and work hard to recover. It has been a roller coaster ride for us over here. What started out as preparing for the fact that I was going going to get my first body piercing AKA G-tube, led to three more surgeries on my heart. YEP THREE MORE!!! It was crazy, unexpected, and a total shock. Not at all to the Lord though. I was exactly where he wanted me and I needed to trust that he would use every ounce of this crazy tidal wave we were riding for his glory. I’m often giddy at the ways he shows me he is. I endured two failed surgeries, 4 paddle shocks to the heart, awful reactions to new meds, painful incisions, and things too embarrassing to discuss on the blog. It wasn’t all roses and rainbows and I would have given anything not to endure it. However I experienced Such joy in having my wonderful Husband by my side, he really is honoring his vows we said at 22 in sickness and in health, sweet friends giving of their time to help step in so my husband could work, people bringing meals, flowers,cards, gifts, caring for our kids, sweet calls from far away family members, and beautiful conversations with nurses about Jesus. Apparently when I come out of anesthesia all my inhibitions go out the window and I become super concerned with every stranger I encounter and them having a relationship with Jesus. Honestly this is where I saw Jesus the most. So many great nurses and hospital staff and opportunities to share how the Lord has worked through our story. This really is what it’s all about right? I long to be fully recovered and have more independence and I’m hopeful those days will come soon. As much as I long for those days I’m praying for more opportunities for the Lord to use me as he sees fit. Crazy? nope. Refusing to acknowledge we have an amazing creator who was persecuted for our sins and took on the ultimate sacrifice on our behalf now thats CRAZY. In the mean time I will focus on how incredible it is that the Lord gave me the strength I needed to endure all of this, how I have come out so much more stronger and appreciative. It would have been so easy to let all of this defeat me, to drag me down, to sit in anger, disappointment etc. If I would have chosen that I would have missed out on so much. None of it is meaningless. It ALL has purpose. I would have missed so much. What is your go to when your pressed in at every angle? Life is so full of hardships if you haven’t experienced any they will be coming. The bible promises it. When difficult times come into our lives and we find ourselves unable to comprehend or to understand, the enemy is quick to throw doubts and questions into our minds. We find ourselves questioning God's goodness and God's wisdom in allowing these things to happen. We may even be bitter and angry with God for allowing this to happen to us and wonder if He really understands. But God's word confidently reminds us that God does understand. Things do not just happen by accident to the Christian with no meaning or no purpose. God is in control. In Romans 8 Paul reminds us no one or nothing can separate us from God's love. Even in the most difficult of circumstances. I hope that whatever hard thing you are facing, whatever is pressing in on you that you can draw encouragement from these words. God is for you.
Sunday, June 4, 2017
Well tomorrow is the day. Surgery will be at 7:30a.m.. Not gonna lie I'm really going into this one kicking and screaming. I just feel tired and don't have it in me to go through it all over again. For whatever reason this is what I'm suppose to do. It's hard to understand why a fourth time. Why another surgery? I trust the Lord and know this has purpose but I really feel like he is putting that to the test. I feel like we have tried to trust well but right now we are being pressed in at every angle. It is going to take a lot of trust in the doctors to get this surgery right and to trust that this is it, and it's going to take a lot of trust to send my boy on a plane this week to Japan. Please will you once again pray for us.
Wednesday, May 31, 2017
Sitting here numb in disbelief that this has actually been my life the past 10 weeks. I was just starting to turn a corner. Hopeful that I was drawing near to the end of my recovery. My weight is up, pain has lessened, energy is up. Then the doctor lays another bombshell on me. Granted it's not his fault, he's just the messenger. After careful monitoring of the new defibrillator they determined that the lead wire has dislodged from my heart and I will need to have ANOTHER SURGERY. Yep if you have all been keeping track this will be 4 in 10 weeks. I can't even begin to tell you the disappointment I feel. These 10 weeks have been some of the hardest our family has had to face and if you have been following this blog for sometime and know our story we have faced some doozies. We are exhausted and weary and this surgery will come at some hard costs. I don't mean financially. Jason will need to give up his spot on the Japan mission trip, and I will have to have a huge level of trust sending Noah, Jason will have to miss more work, Jason along with many others will have to put on their care giver hats, my kids will not be able to rely on me once again during my recovery and they will have to watch me endure more pain and more time strapped to a bed, longer time that I will not be able to drive, Grandparents will give up more of their time and the list goes on. We know and believe God is at work in all of this and that his ways are wiser than ours. Sometimes it's hard to make sense of it all and that's when the rubber meets the road right? That's when all we have is to choose to trust. I choose to trust even when it's hard to keep enduring the pain. I choose to trust even when I'm exhausted and out of strength. I choose to trust when I see the tears from my kids faces as I tell them hard news. Yes I choose to trust. Is it easy? Nope but it's all I got. All I can do is revert back to God's truths. Lean in and let him carry me through. Let him be the lifter of our heads, let him guide my ways. I give it all up to him and I choose to trust. Please pray that we can do this well. We pray for wisdom that we would be faithful to glorify him in the midst of these hard things. Pray for our kids, for our marriage, for all the doctors and staff, pray for no more complications. You all have been carrying us so faithfully and thank you never seems like enough. We are getting through this because of your love and support so thank you❤️
Thursday, May 18, 2017
So we are all set for Surgery this Friday at 3:00p.m.. The last few days have been hard as the anticipation of this surgery is heavy on our minds. My surgeon told me that they will have to test the defibrillator once it is implanted. He also mentioned that there is a chance that it wont work because of interference with my current pacemaker. They believe this was the issue with the last surgery. If this were to be the case they will need to surgically remove my current pacemaker and set the pacer/defibrillator combo. Its hard, tricky, and causes fear for a lot of complicated reasons that are hard to explain.
Our biggest prayer is that the defibrillator would work, the lead will connect to my heart with no issues and all will go better than we could have asked. We are also hoping this recovery will go smoother than the last. It’s been a long 8 weeks and I’m just very ready to be on the other side of things. Grateful for the last few days to feel somewhat back to my old self. Below is a song that I have been listening to this week. Hope it blesses one of you.