“Have you ever wondered which hurts the most: saying something and wishing you had not, or saying nothing, and wishing you had?” — Unknown I am face #1357 of 2000 women who participated in the “I am the face” campaign started recently. I had hoped to post this on Friday, October 15th which is national […]
Category Archives: Amanda
October 17, 2010 - 11:51 am
Amanda,
I hope you know just how much of an inspiration you are to people, especially me. You face whatever life has thrown at you with dignity, grace and strength. You have to me so much, both in and out of the classroom. You make me not only want to be a better designer, but a better human being. Whenever I’m faced with an obstacle (though, these could never compare to what you are facing), I often think of you and your family, the struggles you have and are enduring, and how you keep pushing on, keep moving forward, and I am inspired to just keep going.
I know the days ahead are going to be challenging and the decisions you face are agonizing. I hope you know that you are surrounded by people who care about you and are sending love and prayers your way.
Jeff
October 18, 2010 - 1:06 am
I don’t know if I have posted before. I have been married 10 hrs. We did fertility for 3 years, had an ectopic emergency surgery, tried to adopt for 2 years and then got pregnant. We were thrilled and now have a 3 yr old. Then we did IVF. We got pregnant with twins. One miscarried and the other was later diagnosed with SB. I feel your pain. I have great compassion for you. I ran a half marathon today for my son with SB which I never would have done if it weren’t for him. I am glad you are reaching out. Please call if you ever need anyone to chat without judgement 512-585-0724.
October 19, 2010 - 1:18 pm
Oh, I hurt for you, Amanda. My heart is pounding and my hands are shaking… I can barely type. We never lost a baby. But I do understand the agony of trying and trying for a baby. Then upon finally getting pregnant, we got the SB diagnosis. DEVASTATION. I wanted to crawl into a hole and not come out, ever. But then she was born, and nothing else mattered but to hold and love that sweet baby girl. And she is De-light-ful. Anyone who knows her can not imagine a world without her. I painfully read your words, “after having 3 miscarriages and now still in the midst of deciding whether I should give up on my baby” and “wonder if termination is a wiser option than our baby and family living a more challenging life”…. You’re right, I do not know you. I do not know your pain. I do understand it to some degree. And it is HARD. HIDEOUS. But as a Mommy on the other side of it, living that more challenging life and watching my sweet baby grow into a BEAUTIFUL girl with a determined spirit FULL of life and laughter, I beg you to embrace the challenge. I would bet that you are WAY more prepared to face it head on than I was because of your past history of loss. And what a blessing that strength could be! I again ask that you please visit my website I posted and see our girl. She’s a fighter, a hard worker, and she is PERFECT. Spina Bifida is the least interesting thing about her. And I would love to be in contact via email or otherwise. Blessings….
October 21, 2010 - 1:12 pm
I found your blog following the usual breadcrumb trail from another blog. I do not know if you are on Twitter, or not, but wanted to let you know we are hosting a #pregnancychat on Twitter on pregnancy and newborn loss. The chat will be on October 27th at 3pm. Please consider joining us. Use the hashtag #pregnancychat.
“in the midst of movement and chaos, keep stillness inside of you.” – Deepak Chopra I suppose we all suspected me publicly bringing any of my feelings, especially with this controversial of an issue would end up leading to some pretty opinionated, and at times offensive messages. I have yet to have a reason to […]
Waiting is painful. Forgetting is painful. But not knowing which to do is the worse kind of suffering. Paulo Coelho “Waiting is painful. Forgetting is painful. But not knowing which to do is the worse kind of suffering.” -Paulo Coelho With it being close to two weeks since I’ve formally updated everyone I wanted to […]
by Amanda Kern
5 comments
October 13, 2010 - 10:08 pm
Amanda,
Know that many people are praying for you and your family right now. I know the decision is tough, but you will know what the right choice is for you and your family in the end. Hang in there.
October 14, 2010 - 11:57 am
I love You!
October 14, 2010 - 3:27 pm
Amanda, I’ve been reading your blog recently and offering many prayers for you and your beautiful family! I don’t know how you find the energy to do all that you do, but know that you are an inspiration on so many levels. (And I still credit all my web design skills to you!) May God give you continued strength and blessings.
*hugs from NYC*
October 14, 2010 - 4:33 pm
Hi Amanda,
I saw you on the Baby Center site. This is a horrible choice you have to make, and I’m sending you and yours thoughts and prayers. I don’t know if you’ve looked at http://www.spinabifidaconnection.com this site is not just for parents but for adults who are living with spina bifida as well. I found it very helpful to try to see the future.
You will make the right choice for you and your family. Please feel free to contact me or look at my blog if you have any questions or anything I can help you with.
October 18, 2010 - 11:14 am
Hi Amanda,
My twin boys have myelomeningocele. If you have any questions, please feel free to e-mail me. Hang in there!
“If you focus on what you’ve left behind you’ll never see what lies ahead.” – Gusteau (Ratatouille) As we have been dealt some tough news this week about the baby, I admit the news is only that much more challenging as it came just days before the dreaded month of October. Typically, October has been […]
by Amanda Kern
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“Being defeated is often a temporary condition. Giving up is what makes it permanent.” —Marilyn vos Savant This morning we visited with the genetic counselor at Winnie Palmer hospital. It was both a very informative and overwhelming experience. Though we’ve begun learning so much more about Spina Bifida I haven’t really been educated as clearly […]
by Amanda Kern
5 comments
October 1, 2010 - 5:27 pm
My heart goes out to you and your family, and I thank you for sharing this journey in your life. I also have a question for your. I was wondering if it would be ok with you if we posted your story on our FB fan page in “hopes” there might be some of our fans that has gone through what you are going through right now. Let me know what you think.
Ceci
PS: You took pictures of my daughter Ella back in March. My husband brought here to your house for her little mini photo shoot.
October 1, 2010 - 8:44 pm
Thank you. You are more than welcome to share what I have shared. I’d never post anything publicly that I wasn’t comfortable with others sharing. If it can help someone else someone else – then it makes it that much more worth writing publicly.
October 2, 2010 - 1:39 am
Amanda,
I came across your blog from the babycenter SB board. I have a 4 year old son named Nate who has SB, and although he’s had more doctor appointments in his short life than I’ve had in my 30 years, he’s otherwise a very typical little boy who’s obsessed with Thomas the train, is going to be a pirate for Halloween, steals toys from his sister, has a laugh that is so contagious that everyone comments on it … SB would be the least intersting thing about him, except it has made him a hero. When I was pregnant with him, I told a doctor that a nurse told me there was a boy with SB who ran in her office. He told me, “She shouldn’t have told you that. It’s not true. Your son will not run.” Guess what–he runs.
I just want to give you hope, because when I was pregnant with Nate, I didn’t find any. First of all, it is very, very rare for there to be any additional chromosomal issues found with SB. I don’t know why the docs always have to look for that, but if you’re thinking about MOMS you’d need to do the amnio anyway. But honey, they’re not going to find any chromosomal issues. SB is enough 
but it’s totally managable. Your baby can grow up to go to college, have a career, get married, and have a family. The biggest factor in how well a child with SB does in life is how his or her parents raise them, and it sounds like you’re already a fantastic mom to this baby. Look at what an advocate you are by informing yourself! I’m very impressed at how well informed you are.
I did the MOMS study, and I’m happy to talk with you about it. You can email me, and I’ll even send you my phone number if you want. I actually work at a Spina Bifida Association, so I talk to moms for a living. We had a very good experience, we had fetal surgery and Nate was premature but is doing very well (check out the blog), and I have no regrets. I totally understand where you’re coming from about having other children, and honestly if Nate was not my first I would have had the same reservations. Coming from what I know now, if I had another baby diagnosed with SB, I’d try to get back in the MOMS study, and we’d figure something out with my two kids. It was that good. But it really may not be right for every family. Listen to them, pray about it, and then listen to your heart. (PS, as far as I understand, not one baby has died during the study. The protocols are so much better than they were before it was a study, and it’s much safer.)
You are absolutely right that God chooses special parents for special kids. Getting the diagnosis 4.5 years ago knocked me over hard. But God had a plan for me so much bigger and better than I ever would have dreamed up myself. It hurt getting here, but now I’m a better version of myself. I now know the purpose God has for me here. I have met SO many wonderful people I wouldn’t have otherwise. I would not have chosen it, but Spina Bifida has been a blessing in my life.
October 3, 2010 - 3:30 pm
Hi Amanda. I, too, read your posts on the baby center web site. Your name will be easy for me to remember because my little one with SB goes by the same name. And we’re almost neighbors, as I live in Tampa! All of this is overwhelming, I know. The only way I got through it all was to let go and acknowledge that my fate was in God’s hands. I experienced a double-whammy, a breast cancer diagnosis and conceiving a child with SB at the same time. My Amanda is such a blessing because she is my one and only child. (Chemo has rendered me infertile now.) She is definitely in the best-case scenario group. She is 21-months old, nhas no shunt, and is walking with AFOs. I share my inspring story with the world through my blog, Chemomama. I wish you all the best as you make these difficult decisions. Feel free to e-mail me directly or look me up on Facebook if you like. God bless you and your family.
October 7, 2010 - 12:45 am
Hi Amanda, I thank you for for letting us in to your life, no matter good or bad. You have and your family has been on our minds ever since for the last couple of days, and we are checking your blog every day for updates. We do understand this is a very hard journey for all you and it breaks our hearts that you have to go through this. We also would like to thank you for letting us share your blog with our community. As soon as we post your story I will let you know.
Ps: I noticed I wrote you took pictures of my daughter Ella in March. Oooops, it was actually in June. Yep, that is what happens when you are a mother of three, can no longer keep track of anything.
by Amanda Kern
4 comments