I am excited to write that this journey we have been on is beginning the next phase. I feel like we have run the adoption marathon and now are beginning an Ironman in Combatting rare chromosome disorder. We know there are going to be blisters along the way but the prize is worth it. We are setting out to fund and find treatment possibilities for our daughter and are blessed to partner with amazing scientists eager to help. We have some great ideas, which of course need propelled by funds. Grants are not going to be readily available for such a rare disease so it is really up to us. So we are working with some of our best friends and community leaders to plan exciting fundraisers and raise awareness and money for this cause. Thank you for supporting us. We will soon have 501c3 status so your donations will be tax deductible. Please share and follow. And God bless these efforts.
I started getting visions of something before Moriah was born. I never understood them clearly but after her diagnosis, I began getting them again. I began seeing something big happening. I spent a lot of time telling God no. I didn’t understand the vision or why me. I didn’t feel equipped to do things I felt God putting on my heart. I would negotiate with God. And I would question, What if I just don’t do it? I know God was asking me to step out of the places I was comfortable and into an unknown journey…with Him. I resisted everyday. I pleaded for God to send help, someone else. And then after a lot of prayer, reading about some pretty cool people in the Bible that didn’t feel equipped for God’s plan, and seeking wise counsel in some of my most prayerful friends/family…I agreed.
This last sentence is so not adequate for the amount of time I spent pursuing truth and putting God on hold, so I will give you an example of how God spoke truth into me when I was so desperately searching for it. At Easter church service of all times, but also the day after seeing a video of an older girl with Moriah’s deletion which hit me hard, our amazing Pastor Rick was talking about one of the visions Ezekial was given, ch.37. Ezekial had been taken out of his home land by the Spirit of the Lord and set in a valley of dry bones, death, loss, mourning so overtaking. And God asked him, “Can these bones live?” Rick reminded us that when God or Jesus asks a question, it isn’t for His knowledge, but to reveal to us. So here, the question is really, “Do you believe?” Do I believe God can breathe His life into ANYTHING, ANWHERE His Spirit is bringing me to??”
I submitted to God’s plans, which I know are better than my own. I believe He can make anything come to life. And with His guidance I prayed for everyday, I started working toward the vision of something that would leave me completely dependent on Him.
As I pursued healthcare and treatment options for my daughter and scientific research on her deleted genes, my eyes were being opened to the needs in these areas. As I was being welcomed into support groups for moms of kids with special needs, I heard their plights and felt their frustrations. And I felt God positioning me to help, in ways I never dared dream.
But just as I let you all in on this, I know their is such a risk. Of failing. Of exposure. Of fears I have never experienced. Of time and money and time. Yes, I meant to put that twice. I am not a known risk taker. I am known as the motherly, planned, rule-follower. And safety is key in all of that. I am safe. I don’t take risks. I make due with what I have and find happiness wherever I am. I would dare say my husband is similar. We have been married, worked and live in the same home for 17 years. You get me? We don’t rock the boat. I don’t rock the boat. I like this trait in me. But God says, (and I am paraphrasing) “let me work through your weakness.” (2Corinthians 12:9) He is teaching me to want more and dream bigger.
He loves me enough to help me grow into something else He wants for me. And He isn’t going to stop until He is finished (Philippians 1:6).
So I am taking a leap of faith. And my husband too. We knew when God asked us to adopt and we accepted His will, we were showing God we could be trusted to continue to follow Him. We knew we would be stretched, expanded into other areas. So the time has come for our next calling. We feel called to start something new… A foundation for Moriah’s rare X chromosome deletion.
When we said yes, we didn’t fully know the plan. We still don’t know exactly how we can help, what raising money will do, but God is teaching us more about trust and His power. He is teaching us to dream bigger, do bigger, love more. He knows the JOY Moriah brings to so many and is X-panding that JOY to reach more. We have a small view of the plan and keep getting more of the picture as God reveals more to us. Stay tuned. It’s going to be good.