Photographer, Educator, Student, Mother & Wife Obsessed with sharing moments through pictures & words
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 […]
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.
I love You!
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*
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.
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
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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.
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.
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.
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.
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.
Today we got to see a bit of light at the end of this long tunnel we are traveling down. The hospital called with the preliminary results of the amniocentesis and there are no signs of chromosomal defects. As far as the full results, which include the confirmation of the AFP hormone causing the neural […]
by Amanda Kern
4 comments
Amanda-
You have been blessed to be able to have two beautiful, healthy children and you and Jason have done a wonderful job raising them. Even if this child is born with “imperfections”, God see’s what wonderful parents you two are and knows that you will love this child regardless and are willing to give it a chance at life when other wouldn’t. With God’s help you will be able to get through anything.
“As he passes by, he saw a man blind from birth. And his disciples asked him, ‘Rabbi, who sinned, this man or his parents, that he was born blind?’ Jesus answered, ‘It was not that this man sinned, or his parents, but that the works of God might be displayed in him.’ “. JOHN 9:1-3
As a parent of a ‘special’ child, I am familiar with the struggles of wondering why? as well as the question of what is really best for my child. Another miracle baby mom explained to me one day (in her best English) that God needed someone He could trust to send His special child to and I realized what an honor that was. They call Mary blessed among women, but she had to watch her son suffer unimaginably. This perspective helped me be there for my child as I was determined to be and also to rest in the blessing he is. Hope it’s encouraging to you as well.
Amanda- I just wanted you to know how much Im thinking and praying for you and your family right now. I wish that I could find the perfect words to help and encourage you, something that would truly give you comfort, but I find myself coming back to the simple things. My prayers are with you in hopes that YOU will be able to take what YOU truly need from them, not what I want or need them to be. I hope that makes sense to you. Please let me know if I can ever help you in any way.
Hi Amanda, praying for you daily and knowing that God hears and answers the prayers of our heart!! Hugs,
“Tears are words the heart can’t express” ~Unknown There’s no easy way to express how we’re doing after learning yesterday that the baby has spina bifida. The tears cannot be counted nor can they measure the amount of grief and fear we now feel. As I have reassured you all, I will do my best […]
by Amanda Kern
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We’re so sorry, your family will be in our hearts and minds.
Praying for you and your family!
Isaiah 46:4
Even to your old age and gray hairs
I am He, I am He who will sustain you.
I have made you and I will carry you;
I will sustain you and I will rescue you.
Hey Amanda, I just wanted you to know that I’m thinking about you and your family. I hope for the best for you guys.
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Hi everyone!
I’ve been using Cinnamomum Verum, or Ceylon Cinnamon, and it’s become a favorite in my kitchen.
I’ve read that it’s often called “true cinnamon,” and it’s amazing for everything from baking to adding a light spice to my morning tea.
The flavor is smooth and mild, so it’s not overpowering, which makes it perfect for daily use.
One of the things I like most is that it’s safer for long-term use compared to regular cinnamon.
If you love cinnamon but are looking for a healthier, more refined option, definitely give Cinnamomum Verum a try.
Has anyone else here made the switch to Ceylon?
by Amanda Kern
5 comments