Our heart for Moses' heart

The month of January, 2016…aka the month of challenge, or maybe we should call it the month of change.

So much has happened to our family this month that we are living in survival mode. You know, I really wish that I was more consistent at blogging. I wish that every time I updated this wasn’t because we were in some sort of crisis. But, I’m not going to cry too much over that failure. Not a big deal in the grand scheme of things.

Back to the reason for this post.

On December 31^st at 10:40pm, we had the privilege of having Ivory Rose Stone join our family. What a joy it has been to have a little teenie, tiny baby around again. It is so much fun seeing new sides come out of each of us. Hannah is even more of a mom than I could have imagined. I am so proud of her instinct and compassion. She is going to be a fantastic mom one day! I was a little nervous about Izzie. She is my little snuggle bug, so the whole jealous factor was a big concern. She has definitely had her moments but what 3 year old wouldn’t? She loves her new role as a big sister and wants to be just like her big sister. “No Izzie! You cannot bring baby Ivory to mommy.” She’s a little too confident in her big sister abilities right now. Moses has transitioned amazingly! So much smoother than when Izzie was born. It’s fun to see how much he has grown in his ability to adjust. He is doing great at being a gentle big brother! He still has so much going on in that mind of his that we need to remind him to slow down and watch out for her, but other than that, he is good!

Life with a newborn. Fun family changes and lots of sleepless nights. Wow, it’s amazing what you forget about having a newborn! It's really hard! I’m just glad that I have the perspective now to know that much of the hardship will pass very soon. It’s a lot easier to enjoy the hard days this time around because of that mom experience.

God decided that having a newborn wasn’t challenging enough for us right now. He decided that we needed to trust Him more with Moses's little life.

In the middle of January, we had a routine specialist appointment set. At this appointment, we were made aware of an abnormality in an EKG that Moses had had several months prior and were never notified of. We knew that Moses was born with an abnormality in his heart but after 4 years of cardiology visits, we were under the assumption that this was not a major deal.

Well, the wisdom of men is not always right. Our new cardiologist looked at this EKG, had another EKG done, had an EKG done on me, Dan, and our girls and we came to find out that this was in fact a very big deal. A very big and rare deal…rare as in only 100 or so documented cases in the world. Moses has a heart condition that if left untreated could cause sudden cardiac arrest. What?! I can’t believe he has been spared this far! He is a beautiful little boy with a disorder called autism. It has been said that individuals with autism will experience some of the most severe pain because they do not have the adequate ability to communicate their pain and thus, experience much pain untreated. His little body has gone through so much stress already! What does that tell me about him? That tells me that he is a warrior!!!! He is a superhero!!! The fact that he has not died and endured so much without his heart giving out shows me that he is the strongest individual I know! I am so proud of you my boy!! Grown men would have died but you have endured. You are strong, smart, brave, kind, handsome and tall.

This new diagnosis leaves us pursuing new kinds of treatment. He has been receiving therapies since he was 2 months old and now he is beginning a new journey of receiving different kinds of treatment. This includes medication for the rest of his life and possibly, more than likely open heart surgery for a defibrillator. We’ll take one step at a time. Because of Moses's diagnoses, he is literally one of a kind. There is no other child in the world who has been medically treated like Moses. He is blazing a trail. He is exploring new frontier. He is going where no man has gone before. And, he has the support and care of the Creator of it all.

That’s how we are finding comforting in this devastating news. If God is for Moses, who can be against him? God is working all things together for Moses's good. God will not withhold any good from him. God will supply all things for Moses according to Christ’s riches. This knowledge, this good news can make us brave! It certainly doesn’t keep us from bleeding, but it can make us fight this battle till the end. We will not give up. We will not despair! We are infinitely loved and we know this without question because God gave His most prized possession for us, for Moses…His son. God knows what it’s like to see a son suffer. He knows what it’s like to wish things were different. He did this all for you, for me, for Moses. Believing that changes everything! It makes me able to walk through my fears instead of escape them. It makes me able to be concerned for the state of others, while I also suffer. It makes me rejoice in struggle instead of grow bitter. I’m sure that as we journey in this longer, we will see more and more of how this changes everything. Jesus changes everything!

So this weekend, we go into testing. We are being admitted to a hospital to see whether or not medication can help him. We might see him flatline this weekend, but in that flatlining, we will understand how much is too much of his medication. We’ll be one step closer to finding the interventions that will help to save his life in the long run. We are so grateful that we found this now!!! Many people find this out after they die. He has a super good prognosis since we found it!

Please pray for us this weekend, everyday, in years to come. We have a long road ahead of us.