I am looking at her and thinking, "I'm sorry." I'm sorry we caused this. I'm sorry that we unintentionally made life a whole lot harder for you. I'm sorry that you have had to go through so much in such a short time already...and this is only the beginning.
It's truly amazing the effect that one little error on one little gene can have on the body.
Additionally, as much as I feel like Brenna is our little miracle angel, I am feeling like Connor is our miracle child too, because he beat the odds of inheriting Harlequin Ichthyosis. Out of all of the families that we have connected with who have children with Harlequin - about six that I can think of off the top of my head -there are none who have any additional children. All of the families we "know" were met with the 25% chance of two gene mutations on the first try. That's almost unbelievable to me and makes me feel even more grateful for two wonderful children.
As for the future of our family, my heart is a little heavy because I have always always always wanted a bunch of babies. My best friend Kristin had eight children in her family, and I spent so much time at her house growing up. It was always full of people and laughter and activity, and I loved every second of it and wanted that for myself. (So maybe not that many :) but closer to four or five!)
Evan was always content with two children but said that the door was at least open to more after the first two. Even if we had decided on just two, we figured that the decision would be ultimately made at least a couple of years down the road.
But a 1 in 4 chance of such a severe condition is a gamble you just don't take. Not for your family and not for your future child who might have to live with it. So it feels like the possibility for more children is a door that is not just closed now, but slammed suddenly in our faces.
While I feel beyond blessed to have two beautiful children when so many couples can't have any, I am also feeling a little disappointment in accepting this new reality that is contrary to my lifelong hope and expectations of a bigger family.
However, I know that God knows what he's doing, much more so than I do. And I am sure that these two will keep me busier than I ever imagined :)
I heard about your blog through a friend, and though I haven't commented before, your post today made me want to say the following:
ReplyDelete1. I am praying for your family and Brenna as you meet the challenges ahead!
2. I am amazed at your strength and matter of fact attitude at meeting this. You are a real testimony of trust in God's strength and plan.
3. I am almost afraid to say this, because I intend no hurt, so I hope it causes none. I have read about families who had a kid with Down syndrome adopting another kid with Downs, because some are given up by their birth parents, especially internationally. Harlequin's sounds exceedingly rare, but... maybe there is a child out there with the condition who needs an adoptive family?
Margaret, it's funny that you say that (in #3). My son has a fairly rare complex, and I've said that I would love to adopt a child with the same - who better to care for a child with a rare situation than someone who's already familiar with it?! :)
DeleteI completely understand how you feel about having more. We feel equally as lucky when our child inherited something that was a 25% chance, and our eldest did not get it. We are blessed that we "beat the odds" the first time around, and didn't even know what we had to pass on until the 2nd child was 3.
ReplyDeleteBUT - that does not mean that the door is closed on you having a bigger family. Trust me - I know what having a special needs child means in time, money, etc. But ADOPTION is always an option. You can still have that big family you crave - just in maybe a different way than you planned. Our 3rd child was adopted. And he is a wonderful addition to our family and we can't imagine him not being with us.
Down the road....think about it. Tuck it in the back of your mind. So many wonderful children out in the world already that need a wonderful mommy like you. Don't give up on your dream.
Courtney, words can't describe how impressed I am with the way you are handling all of the new challenges you are facing. I read your entries, and can really appreciate that you are being so open and honest and raw with your experience. I've never met you...we have mutual friends...but you have to know we are all out here pulling for you and your family. I hope you can feel the strength of all of us supporting you.
ReplyDeleteI was born to be a mom...plain and simple. I just knew I wanted a bunch of kids. I struggled to have the one, then found out I have a rare pituitary condition and had to have brain surgery when my baby was an infant. I went through similar emotions as you when I realized that getting pregnant again was probably not an option because of the health risks involved. So, I now have one, fabulous child who makes me laugh a hundred times a day. I considered adoption, but at this point...I'm having the time of my life with my little sidekick.
Sometimes our 'plans' don't work out exactly as we planned, so we adjust. You really are doing an amazing job of working through all of this. Not many people could keep it together like you have, Courtney!! You are doing GREAT!!
Love your perspective! Thanks for the encouragement, and enjoy that beautiful baby of yours!
DeleteI am addicted to your blog. I love the updates because of how much I care for you and your family. It equally hurts my heart when I see some of the struggles you have faced, are facing, or will face. I am optimistic of God's plans for your wonderful family because you are great parents who have pretty amazing children!
ReplyDeleteLet me "Amen" what others are saying about adoption! :)
ReplyDeleteAfter sending three babies to heaven, our amazing son came home on March 2nd. I found your blog through Amy Alderman, and I've been following your journey and praying for your whole family.
Take time to grieve your losses and the plans that YOU had made (been there, done that) but be open to God's plan for your family.
If you want to check out my son's cuteness (I sound like a new mom, don't I?!) my blog address is http://momentsdefined.wordpress.com/
Ginger - I have been reading through your blog...it is wonderful and your son is beautiful!! I absolutely love reading your story!! I saw you wrote something about Athens - is that Athens Illinois?
DeleteKeep the faith: So many things can happen by the time you are ready to have another baby. I know that gene therapy and other scientific options sound far off: a dream, scary, unethical perhaps . . . but you never know. And, adoption is also a great option as well! You'd be a great mom for any child who needs a good home.
ReplyDeleteI follow your journey on a daily basis and prayers come your way daily. I have known the Westlake family for years and they have supported my family in crisis. No one knows what plan god actually has for us in the beginning, but sometimes you can somewhat figure it out. I have come to the conclusion that above all else, I was put here to be a mom, and also to nurture, love and raise other peoples children that dont have that opportunity from birth parents. I have now adopted three children that otherwise had no chance of a life that they deserve. I gave birth to two and now i have nine that call me mom, that is a feeling I cannot even describe. Please dont give up on your dream of a large family, there are children out there that could need you, and in the future you can make that possibility a reality. Dont give up the hope or dream of your big family too soon. One minute at a time, that is my motto, take care, stay positive, and breathe. Prayers to you all...
ReplyDeleteI have been following your blog and am amazed by your strength! You have 2 beautiful children who are blessed to have such great parents!
ReplyDeleteIf you would like to have more children, I thought I'd let you know that there are options out there where you could have your own children with lower risks for passing down the Harlequin Ichthyosis gene. Have you ever considered IVF? There are tests that can be done (CGH) that check for chromosomal/gene mutations that may effect the embryo. It is then possible to use the embryos that are not carriers for Harlequin Ichthyosis for IVF. It may be worth a shot...
Keep your positive outlook :)