Isn't she sweet!
Well, my adorable little girl officially has been diagnosed with Basal Cell Carcinoma Nevus Syndrome (BCCNS), also called Gorlin Sydrome. It's not life-threatening, but it is life-changing. There's a mutation in her tumor-suppressing gene, so she's very susceptible to basal cell skin cancer, and 90% of Gorlin patients will develop jaw cysts, among other things. So, we won't be out in the sun from 10 a.m. to 4 p.m. Doesn't that seem insane?! It does to me. But that's our life now, and it could always be worse, right? If you're interested in learning more about this rare genetic condition, you can click the link in the first sentence. It's strange...
my head was prepared for the news, but my heart just wasn't.
I'm still processing everything.
Within the first three hours of finding out, we already had appointments set up for the dermatologist, cardiologist, dentist, and we're waiting to hear about her MRI appointment. Gorlin Syndrome can affect brain development, and the MRI will let us know if something is different; this may shed some light on her developmental delay.
But I'm still processing everything.
One minute I'm fine. The next I'm a basket case. Sigh...
I know that God has a plan, and that He will use this for His glory. But I just have to let it work out in my heart for a while.
Since Gorlin is a very rare condition, I've decided to spend a little time posting about it as we start this new journey. Hopefully we can help, encourage, and connect with other Gorlin families.
Still processing...
I want to thank you all for your prayers, encouragement, phone calls, and emails. They were and are appreciated, more than you know, friends. More than you know. And we'd still love your prayers as we continue to process, adjust, and find our new normal.
God is good. ALL the time.
(((hugs)))
ReplyDeleteI'm here for you sweet friend.
Praising God for His sovereignty in Anna's life and yours. No words of profound wisdom. Just words of love. God has a plan for your precious girl that only she can fulfill, Gorlin's and all.
Praying for your heart as you digest the results, make appointments, gather facts and find answers to your questions.
Love,
Sarah N
My heart has been so heavy for you today. Just know that we LOVE your sweet family so much, and we are praying! And if you need me anything, please let me know!
ReplyDeleteDear Melody,
ReplyDeleteWe have never met in person, but I feel like I can hear your heart every time you write about your sweet girls. Stay strong friend, I will pray that the Lord's peace surrounds you and your beautiful family.
Blessings,
Yvana
Thank you so much, sweet friends, for your encouragement and prayers. I'm so glad that God has brought each of you into my life, whether it be in real life or online! :)
ReplyDeleteMelody, She is a precious gem, and you are in our thoughts and prayers. Thanks for sharing. In time, I'm sure God's plan will reveal itself. In the meantime, cling to his promises and know they are true for you and your wonderful family. : )
ReplyDeleteMelanie, thank you so much for your prayers. I'm definitely leaning on His everlasting arms right now, friend. :) God bless you!
DeleteI don't think trusting in His providence means we have to forgo grieving when something dramatically affects us like this, especially when related to our sweet children, so I encourage you to take the time you need to cry out to God and break down a little. Tears heal. I am thankful that beautiful Anna has a mama who works so hard for her, who probably already has a spreadsheet of plans and resources started. :) (planners cope with lists, eh?) I so enjoy the tone of your blog, even in this hard news.
ReplyDeleteThanks for the encouragement, Danielle. And you're absolutely right, and it's funny, too because I just talked with a good friend about this. I have lots of tears, but I really haven't been alone yet to just breakdown. It's coming. I know it is. And yet, I'm so thankful to finally have a diagnosis. Putting a name to something really, really helps. Thanks for stopping by, friend, and thank you especially for reminding me that it's okay to cry. :)
DeleteMuch love, friend! praying for you and sweet Anna today. Thank you for sharing with us and allowing us to walk with you on this journey. you are loved by me and so many of your blog readers...but most importantly by Him who is before all things and holds all things together. (Col 1:17)
ReplyDeleteWhen the righteous cry for help, the LORD hears and delivers them out of all their troubles.The LORD is near to the brokenhearted and saves the crushed in spirit.
(Psalm 34:17-18) Praying that you feel the nearness of the Lord. Praying that the fact that He hears his children when they cry out to Him brings comfort, joy and hope to your heart tonight.
Suzanne, thank you so much for this. These verses certainly bring me comfort, and I appreciate your sharing them. Thank you also for your prayers and encouragement, sweet friend. :)
DeleteDear Melody,
ReplyDeleteI'm so glad they have given you a diagnosis. The first verse that comes to mind is the one that states, God captures our tears and puts them in a bottle. I love that one because it reminds me we are not alone or forgotten in our journey.
Your little Anna is so blessed to have you as her momma. I'm sure in time you will look back and see how God uses your family during this time and the story you will be able to tell because of this journey.
My prayers are with you as you learn more about this. I pray you find comfort and hope in knowing you are not alone.
Much love,
Crecia
One more thing... I just voted for your blog! I'm so happy that someone nominated you for it. You certainly deserve it, my friend!
ReplyDeleteThanks for your sweet comment, Crecia! And thanks for your vote, too! Ha! I had no idea until a couple of days ago that that even existed! If I had known, I would've nominated YOUR blog! love to you, friend! :)
DeletePraying for your sweet Anna & all of you really! You're such a good mama & you serve such an amazing God. I know you are resting in His truth & loving your baby with even more hugs right now. I'll continue to keep y'all in my prayers as you explore new territory as a family.
ReplyDeleteThank you so much, Beth. I appreciate all of your prayers and your encouragement! Hugs!
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