Its been a while since I have written on this space- and I mean to a lot, but we seem to have so many plates swirling, that when I sit down to digest, I can’t seem to make myself write about it all. There have been lots of times I have really felt God leading me to share, and many times where I let other parts of my life get in the way of creating space to write. So, here I am… doing my best not to word vomit all over the place. Bear with me as I try to not be long winded, but even in writing this sentence I am.
How we are doing…
The first question I get asked is how is Ansell doing?!?! And the answer right now is, great! She is a thriving healthy 6 month old. She has gone from a 4lb preemie to being the cutest chunky chubby-cheek baby. Yep. That’s my angel baby from heaven. She is happy, sweet, and easy.
We have a check up with our geneticist in mid-January, and at her last appointment all seemed to be well, but her blood work had VERY high amounts of galactose (the sugar that poisons her body) so we have been reluctant to start solids. We are hoping to get blood drawn soon so we can see what our baseline is. Her levels may have been high last time as a result of all the milk she was given her first week of life, since the galactose gets absorbed by red blood cells, which take 3 months to regenerate. Once they regenerate the galactose should be gone. Unfortunately, we don’t know how much galactose her body is making, and with her lack of GALT enzyme function there is no way for even that little bit to be eradicated.
Anse just turned 6 months- and this is the part of our journey I have been a tad fearful of. I am not by nature an anxious person… but the extremely strict dietary guidelines do have me terrified if I think about it too much (which happens regularly, because its naturally part of the conversation when I am promoting GLOW). The facts are simple- if Anse has ANY dairy it can be harmful to her in serious ways… and the thoughts of her crawling around where other kids are snacking can feel overwhelmingly burdensome. It has felt safe in this past 6 months… She has a bottle and she can’t move around to grab other food. But the time is coming quickly where this changes. And I am not ready!
SO, after being asked how she is and the update on her health, the second thing I get asked is how I am doing. Which is an interesting question. It changes a lot… but mostly I am doing well.
Let me start here. When Anse was diagnosed there were A LOT of tears. I shamefully felt like… why me… again. Our first daughter was born healthy, but suffered a traumatic brain injury. Her entire first year of life was spent holding our breathe at each milestone, hoping we would see her achieve success but not knowing if we would, or when problems would arise. Linden is a healthy thriving 4.5 year old now, but we didn’t know days after she was born that she would be. Although with Anse it is different, and on a larger scale, it feels similar. And I believe that God gave us our experience with Linden to prepare us for Anse. He knew all those years ago that Anse would be born to us, and He knew who she would be created to be, and why. I feel like during the process with Linden I was able to learn surrender- which made the surrender easier with Anse. I trust Him. I believe Him. I know He is good, all the time, in every circumstance, even if that circumstance doesn’t turn out to be easy or what I would have chosen. And I don’t just think these things… they are burned into my soul, my inner most person. I praise Him for giving me what I needed well before I needed it… because I believe it prepared me to be the mommy Anse needs me to be, without being anxious or depressed, but instead clinging to God in surrender to His will and purposes.
I say this, but want to be fully transparent- 90% of the time I am trusting and surrendering… but there is the other 10% of the time when I long to have a healthy child. I still feel the sting of not being able to nurse her… I hate that we have to be on guard with all the developmental stages and I hate that we spend more time at the doctor than we would. BUT even in all that I have grieved, I have seen God’s hand and felt His mighty presence.
Another facet of this is she is my third… and I get asked a lot how I handle having 3 kids and the diagnosis… physically, mentally, emotionally. And, some days I handle it better than others. But, ultimately, again, I believe the Lord has been faithful to help me shift my energy into pursuing others who struggle with Galactosemia and advocating for the entire community.
The story behind GLOW for Galactosemia
I talked a lot in my previous post about surrender. And that’s a lot of what the first 2 months were (and life still very much is) about. And in a time of prayer and intentional surrender I felt the nudge. If you are a follower of Jesus you’ve probably felt the nudge before. It’s not an audible voice, but it’s very much a strong prompt to go or do… Like an internal message that blows through your thoughts… And for me it was, ” time to step out in active faith. And where I call you, I will be faithful.” So that’s how was GLOW for Galactosemia was born… on my couch. In tearful prayer.
Specifically when this occurred I was asking Jesus how I should be praying. I felt a little lost. Do I pray for healing? Do I pray for medical breakthroughs? Do I pray for a heart to surrender to a greater purpose? Do I pray for short term or long term? What about the others who have this, who are seemingly invisible? How do I ask others to pray if I don’t even know where to start myself? Lord, can you just take this away? And in the midst of my questions and wanderings I felt very clearly I should focus on the community of those who have Galactosemia, and see Anse as one of many… which then led to the fore mentioned nudge.
It didn’t take me long to start pursuing what GLOW could/should be, and writing down the purposes I believed it is supposed to serve. Things/ideas just kept pouring out of me… and its like I gained this new bravery over night. I was calling people I didn’t know from a website of race directors asking for guidance, I was creating financial documents and saying phrases like 501c3 (AND knowing what the mean), I was learning Photoshop to create graphics and designing a t-shirt… things I have NEVER intended to do. My background is education… I taught high school social studies. And had no idea that the term 501c3 existed.
So from that day, on the couch, GLOW began. It started small… the Lord gave me vision, and continues to give me vision, little by little. And as I wrote out all the thoughts swirling in my brain, I started to piece together 3 distinct goals- 1. Raise awareness, 2. Raise $$, 3. Build community and pursue those who have Galactosemia and/or are affected by the disorder.
My hopes for the future of GLOW
In the short term, we are putting on an event March 4, 2018 for the first time in Knoxville, TN but also have virtual teams around the U.S.. I have created social media accounts (our facebook and instagram) and a website, with the help of our family friend Maury, that allows people a place to go to learn more about Galactosemia and see event details. To further the goals of GLOW I have also created a blog to highlight personal stories of people willing to share their stories about living with Galactosemia, all of which vary in age and live in a variety of places around our nation (and we may even pull in others from other countries). I am using facebook to reach out to families who might want to be involved. But essentially this year is all about getting off the ground and having a successful event that can be something people look forward to being a part of for years to come.
In the long term, my hope is that GLOW will become a non-profit organization that works in conjunction with the Galactosemia Foundation. We would like to continue to raise support for the foundation to help families with financial burdens and would like to see more research funded to better under the disorder. As far as non-profit status, I will probably start that process sometime early summer.
GLOW is for sure more than an event- and we hope to become a full pledged organization by the end of 2018. As an organization, our purpose will be to intentionally love and serve the Galactosemia community through relationship and financial means, working closely with the Galactosemia Foundation to ensure research can be done to make the future brighter for those affected by Galactosemia. Although GLOW will not be affiliated with any church denomination or religion, our purpose is firmly planted in the gospel- that is the good news of Jesus, that it is through His life we have a LIGHT and HOPE that shines in the dark places, and through His sacrifice we have an eternal place with Him in heaven if we only believe in Him and repent. GLOW is His alone- He nudged me to create it, and I feel He has entrusted much in me by allowing me to serve and love this community, even though in most cases we live far from one another.
GLOW has helped heal my grief
Some days in this journey are very encouraging, and others I struggle to feel “successful”. And on the days I struggle I realize one main theme… I am allowing my pride to dictate to me what success in this is.
One day in the midst of a discouraging thought the Holy Spirit brought to mind the feeding of the five thousand. It was very clear to me in that moment the error in my thinking. God doesn’t need anything to provide all He wishes to provide- in our needs, in our understanding of life, in our ability to treat illness, etc. He doesn’t require me to crusade on my own and make a certain $$ amount to then allow research to be fruitful. He only asks me to be obedient. And in that, He doesn’t promise in my obedience to reveal anything medically… His purposes are His alone. And they are good. And they are holy.
I can tell you this. I started this after a prompt from the Spirit, thinking that the purpose was for me to have a way to advocate and love my child. Already in 4 months it has become so much more than that. My grieving heart has found some healing in this endeavor. My soul has found joy in meeting people or reconnecting with people I never would have apart from stepping out and creating GLOW. GLOW has become much more than advocating for Ansell. It is my mission, to love and serve our new community of people in the name of Jesus, but it has already been missional to me- God has used this to help me trust Him more, and to see in real time how His purposes are much higher than our comforts. He is allowing me to be a part of something greater than a diagnosis.
What we want to see is a cure. A way to effectively fight this disorder so that Anse doesn’t struggle. But if there is anything I have learned in my 31 years it is that the struggle is where we meet our Savior most intimately. When we wrestle and surrender, just as Jacob did in Genesis right before Jesus renamed him, we know God in the most intimate of ways. The struggle is not to be minimized or run from. It is to be treasured, even though it may not feel good in the middle of it.
To conclude…
God gave me the vision, and through the execution it has become apparent to me that He has entrusted me with much. GLOW has connected us with remarkable families around the U.S. who share our struggles, pain, fears, and sense of accomplishment when milestones are met with success. I cannot wait until March when the event can finally take place for the first time, and we can celebrate how much God is to be praised in who He created Anse + her peers to be… in how He created us all to be, which is very different from one another. We all reveal more of who God is to each other by all being created in His image.
We appreciate ALL the love and support we have been shown through prayers, financial donations, sharing the event, sponsoring the event, participating! in the event, reading our blogs and website to keep up, etc… I have been overwhelmed with the out pour or our community, and the Galactosemia community, in response to GLOW. We are forever grateful!
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