San Diego and Living in a world of unknown

2017 has been a whirlwind of a year. I remember celebrating the New Year in January, we were so hopeful for the newness that was ahead, for the fresh start. 2016 was the year that Moses was diagnosed with a wicked rare heart condition and we were looking forward to falling into a new normal of maintenance. We no longer had to give him medication after 4 hours (waking him up in the middle of the night). It seemed as though we had finally adjusted to this new diagnosis and were thankful to take some deep breaths to lick our wounds. After a diagnosis that rocks your world, you may often only start to see how your family, kids, marriage has been affected till after the doctors visits have calmed down, therapies been put into place, insurance been taken care of.

That feeling of newness, freshness, anticipation of good…somehow I think we should celebrate more often. Not just one day of the year. As Christians, I think we get a taste of that again at Easter. We remember that the old has passed away, the worst enemy has been defeated, the sad is coming untrue.  At least, I know my heart needs a more frequent reminder that I can put the past behind us and move on for the good things that are ahead. It can be easy for me to live in the past hurts, the past pain, the Good Friday of life. So very glad that Friday wasn’t where things ended for Jesus!

In January, we headed into another health battle that is yet to be clarified. Moses' genetic condition is unique. Not rare…as in, no one else in the world has it. The symptoms he is exhibiting with his genetic mutation is starting to be a combination of symptoms that doctors have not seen. This new symptom is manifesting in his GI tract. We have no idea what is going on! Doctors don’t know yet. We don’t know how serious it could be. We don’t know how simple or complicated of a fix it could require. We don’t even know if there is a fix. Lots of ‘I don’t knows.’ Heading into an unknown is tough. No, not just tough. It’s excruciating. With cancer, you have a course of treatment. With Down Syndrome, you have a general understanding of what has been affected, although not to what extent. With Moses, we have been told, that his genetic condition could manifest itself in his kidneys, lungs, brain and heart. This GI manifestation is new from what they expected.

So, how do you live in uncertainty? I’m still trying to figure that out. What I do know is that the more I focus on what I don’t know, the more my heart wavers, staggers, gives out. The more I focus on what I know, the more stability. Have to stay in the things that I know.

What I do know is that God is good. He is for us and not against us. He will make all things new one day. Jesus did not just come to redeem me. He came to redeem the whole world. One day all sickness will be wiped out. One day, tears will never come from sadness again. Many have gone before me who never got to taste the fruition of God’s promises but they did come true, even after those individuals died. I should not be surprised by struggle. God hears the cries of the afflicted. I am not in control.

These are just some of the things that I am sure of. The Bible calls this faith, the assurance of things hoped. Some people don’t understand that faith involves assurance. It’s not a blind faith. It is a hope in the never failing promises of God! And God proved his faithfulness on the cross and throughout the whole of the Bible. Story after story of how God ALWAYS keeps his word.

The hard part is the timing of it all. I think the hard part may always be the timing of it all. We just want resolution sooner rather than later. We at least want it in our lifetime. But to be honest, we may not see it in our lifetime. Admitting that frailty is tough! 

From here, we are still living in the unknown. This is a period of literal testing where we hope to learn more of why Moses is experiencing great distress in his GI tract. So much distress that he had to have morphine during his last hospitalization.

Praise be to God though! We just received word from Rady Children’s Hospital in San Diego that Moses' case was accepted and we received insurance approval! This is truly a miracle since our doctor told us that getting an insurance approval could be very difficult. This was a Red Sea moment! Just one of many to add to our list of God’s faithfulness. We wait for consultations and more approvals. We wait to hear when we will be heading to San Diego, most likely at some point in the summer. We wait to see God provide for the host of needs that will arrive as a requirement of going out there. 

Pray for faith to be strong. Pray for us to see God’s hand as we are walking through heavy grief right now. Pray for us to have wisdom in guiding Moses through these host of new experiences. Pray for us to trust, even though He slay me. Pray for hearts to be comforted along our journey. Pray for insurance to be generous. Pray for wisdom to know our limits and protect and love the girls through this. Pray for good memories to be built through the pain.

Thanks for reading friends! We need all the support and love that people are willing to give. God has us on a marathon and we feel as though we are often “hitting the wall” and yet He says, “Push on. You are not done with this race.”