Photographer, Educator, Student, Mother & Wife Obsessed with sharing moments through pictures & words
“Never give up on something that you can’t go a day without thinking about.” ~Unknown Exactly one month ago I received the shocking phone call suspecting something was wrong with the baby. In the last month our world has been turned upside down with the news that our baby has spina bifida. It’s been an […]
So glad to hear the good news! Praying for best case scenario all the way!
I don’t think I’ve been this happy in a long time! My heart was grieved over your decision, and I’m so happy to hear your choice. I commit to praying for you and your baby as you continue your journey.
I will continue to keep you in my prayers. God Bless you and the family. We will keep in touch:)
I am so happy to hear this. I commit to pray for you and your baby through your journey.
Okay so I feel like a big Jack Ass! Everything you said not to do I just did when I talked to you. Is it a boy or girl? What is the name? I still like Christopher Robin….Okay I just like to say it. I am faithful that every decision you make will be the one that you are supposed to make. I love you just as much now as ever and you will always be my best friend….Just like Winnie the Pooh and Piglet!
Love you and my sweet little babies and I suppose even Jason…
SHanna
By the way in one of those mind map things this would be a cool pic! I love it!
That’s wonderful news, Amanda & Jason. I can only imagine your relief. I will continue to pray for our little one and will be there to help in any way I can. I love you all.
Amanda, as I’ve read of your trials and tribulations with this and your previous two pregnancies, in retrospect I can’t help but believe the good Lord in all his infinite wisdom found it necessary to “take” your last two babies because He had an extremely special baby to place in you and your family’s very capable hands.
I continue to send you all prayers. Keep the faith…
Wishing you all the best. We will be praying each day until that sweet baby is in your arms.
Adamda, I am so happy that the news is so promising. I will continue to pray for the baby and for your family and for the doctors who will guide and care for you. Love,
Oh hooray! I am so happy for you! Thanks for sharing this. I have anxiously been checking your blog for an update on your decision. You will continue to be in my prayers as you wait to meet your new little one.
That should read…
capable (and loving!) hands.
P
Amanda…I am SO HAPPY to hear this news. God bless you and your family. I know I’ve offered it up before, but if you’d like to meet up at all before your delivery, please let me know. All of the news you’re getting is so promising. I’m so excited for your family and your little one.
So glad to hear that you’ve gotten some good news! Here’s to a wonderful November (my favorite)!
amanda,
I am a fellow sb mommy. I am so happy to hear that you have decided to go full term and welcome this challenge. I have prayed for you. I know from experience that you will never regret your boy/girl. It will be challenging at times, yes. But so very worth it. You wont be able to get enough photos of the smiles your precious child will give. You have a littlest heroes child. 
You do have good news and I am happy to hear that. Will continue praying.
Thank you for your post. I am so glad that you feel some hope and relief. I remember feeling like I had faith, but very little hope. Pregnancy was the worst with ups and downs emotionally. I wish that I could tell myself then, that I was going to be getting the greatest gift of all time. My little boy is nothing but a sweet natured joy. He is the easy one of my two children. I hope that you feel the support of many of us mothers who have been there before you. We are a small tight bunch who do know where you have been. My the next 18 weeks pass quickly.
I had to make thi same decision 15 yrs ago this Nov. 20th and my son has been such a blessing to not only our family but everyone he meets. He can not walk, stand and life is a challenge but God has seen us through. If you would like to talk I would be glad to speak with you.
Karen
Good morning from another SB mommy. I’m thrilled for you that you are getting better reports about your little one. Our third little girl has sb (T10), and she is the perfect addition to our little family.
I don’t know if you’re interested in reading about other SB kids, but if you are, you can read Madeline’s story at my blog. We got our diagnosis March 12, 2008, and she was born on July 14, 2008.
Praying continuing wisdom and peace for you and your family duing the weeks ahead!
Pam
Congratulations on the upcoming birth of this amazing child. I am a sb mom also, and have come to visit your blog through our sb list serve. Prepare to fall head over heals in love with this little one. They are sooooooo smart. Our Lauren (L4-5) is 21 months, the joy of our life, and about to become a big sister! (a very helpful, maybe too helpful big sister i’m afraid!)
Continuing to keep you and your family, including your little one, in thought. Rejoicing at the news of a good prognosis, and the promise and hope of a new little life. He or she will be born in Feb., the month of love and devotion, and on the brink of spring! How exciting is that? It sounds like you’ve dug in and researched and explored so deeply;your direction is truly informed! How awesome for your baby to have a strong and courageous advocate already. And how exciting that the baby’s gender will be a surprise until birth! So much to look forward to. May the winter be a time of peace, joy, and preparation for your family as you get ready to welcome your new cuddlebug!
Congratulations!
Thinking of you and your family always. We miss you and can’t wait to get home. Love, Desiree
hey Champ, I know everything is going to be great for you, your family and this upcoming beautiful baby.
I am here if you still want me to be your delivery photographer
b
Amanda, this news makes me so happy! I know it was a very difficult decision for you and your family, but this baby couldn’t be coming into a more loving family! I think you all will be blessed by these circumstances more than you can imagine. I will be keeping you all in prayer!
Cool! I am happy for you. Congrats!
“Above the storm, the smallest prayer will still be heard.” -Dolly I’ve shared so much these last three weeks and I had always imagined in doing so it would help me, my family and all those who care for our family. Little did I know how much hurt and hatred I’d cause in merely expressing […]
by Amanda Kern
82 comments
i love you all and i know that whatever you decide it will be the right thing for your family. anyone who knows you knows that.love you sister
I stumbled across your website a couple of months ago, as I am an aspiring photographer. I think you are very brave for sharing your story. You have truly touch my heart and I look forward to continuing to follow your journey, as well as checking out your awesome photography! I wish you and your family the best with whatever decisions you make.
Amanda, i am from the babycenter people. I hope i was not one that offended you. I must admit i teared up when i read this and that this post i really think showed you do have hope for your baby and are not simply “looking” for an excuse to terminate. I want you to know your amazing and sacral! thats AMAZING! i know sacral sb babies who have NO problems. I truly believe you have a chance to have one of these babies as you have So many people praying for you! Me included! Feel free to email me at deckarddanielle@yahoo.com. I so wish we lived closer so you could meet my amazing little boy and see how I have not changed my life much since having him. Also Hope’s little notes are just too sweet…I did want to say that I saw in your mindmap where you said you were worried how your kids would feel and from those little notes you get i have a feeling your kids are gonna LOVE their little sister. Stay strong Momma, and listen to God! You are in my prayers tonight!
Thanks everyone. Danielle I’d say the only thing beyond praying you can do is please tell the SB babycenter mothers to stop beating the horse to death…checked my blog stats today which lead me to a couple new threads. Then briefly check the SB community for the first time since Saturday to hear someone refer to me as “mentally unstable”…definitely not “supportive” of an SB expectant mother if you ask me. But everyone is entitled to their own opinion I suppose and I’ll take the hit if it means I’m creating awareness of choices every family should have. And if it isn’t evident, I do still have plenty of hope…I was never looking for “validation to terminate”. I was told while serving in the army to assume does one thing.
Just wanted to let you know that we are praying for a miracle. We are by your side no matter what.
amanda, i am sorry you have such a negative opinion of us sb moms. i have tried reaching out to you and offering you the answers and support you say you so desperatley want, but you seem to think we are out to get you or something. I tried my best to offer you any support at all, and you keep retaliating rudely and offensively. maybe you should look in the mirror good luck to you im simply erasing this from my mind now….its quite obvious you dont want support from ANY sb mom
I have to admit all I want to do it reach out to you. Your post was beautiful and it puts me back when I so understood your feelings and that scary place. Keep the faith and stay looking on the bright side. Saying Prayers for you and your family!
Thank you Lexi we appreciate the prayers. Danielle please don’t take personal offense to that comment, it was not directed to you. However, go back to baby center and read a post someone started titled “My intention was not to offend anyone”. I have stayed away from babycenter until last night when I noticed a link to my blog from a new thread (not from the SB group). I took a moment to visit the SB group for the first time since Saturday and noticed that new thread where the whole situation was beat to death again and now have parents referring to me as “mentally unstable”. Don’t take personal offense to this, however, from a stand point of support…if you were the mother reading these things after truly having good intent I would hope you’d be upset too if you had people saying that and then in the last week being referred to as a long list of negative remarks. Doing this is NOT supportive in anyway. It just belittles someone who truly turned to you all for hope but apparently was hugely misunderstood. Many of the parents still believe I’m misinformed or ill educated…however, if it isn’t evident from this post and the many before, I am far from that. So for me, I am not upset at you all…I just get the vibe that right now it’s best to stay distant from babycenter because the vibe from the past week leaves me unsettled and feeling as though no matter what I say it will upset you all. I thank the many of you, such as yourself for sending positive messages. Many of you have given me hope. I have said this many times. However, this does not eliminate my fears or uncertainty. I still stand behind every thought I’ve shared regardless of what we decide. I think all that was said in the last week was very helpful to myself and others and I have no doubt it will somehow help others for a time to come. I think of all those people in the world who have faced scrutiny and negative opinions for speaking about about things important in the world and though sometimes I wonder if I should remain silent. I think of those people and wonder what this world would have been like if they had remained silent.
hi, amanda. i just wanted to let you know that i’ve been thinking of you. i’m a total stranger, but for some reason your heartwrenching situation has struck me, resonated with me in a personal way. though i post under a different name on bbc, i share the same IRL name as your daughter. perhaps that’s it, idk? perhaps it’s bec. i developed a neuro illness as an adult, idk? maybe it’s just bec. i’m a mom, like you, who loves my dc, idk? maybe it’s bec. i’m also creative (writer) and think and write and talk from every angle to clarify my mind, to figure out what it is i really mean (i think that’s why i “got” the idea of the poll). maybe it’s bec. i thought so deeply about TFMR in my last pregnancy (prematurely it turned out). but i continue to explore this issue, as i’m going to ttc again and i’m of AMA. i think about it constantly. it is the most challenging ethical issue i’ve ever faced; i can’t begin to imagine your own extreme turmoil in the midst of dx. as i mentioned before, i’m not religious, but i’ve been thinking about you and your family in a prayerful way, if that makes any sense. i also saw the bbc mention of the SB day of prayer, so i’ve been thinking especially prayerfully about you, the bbc moms and people with SB in general. i’ve taken this opportunity to learn more about SB, which i appreciate. i feel it is always good to educate ourselves about others, especially other w/ different challenges as i have a neuro challenge myself. i saw on your post that the MOMS study isn’t likely to be an option, nor is adoption;so that leaves 2 directions for you to explore. that you received some hope from your appts. is good, though i know you and your family must feel very cautious, very raw and spent. i wish you peace, strength and courage as you continue, through love and wisdom, to search for direction and answers. thinking of you.
i posted my board name incorrectly above. it’s supposed to be hm.
Sounds like things, even though nervewracking and exhausting with the appointments, went GREAT yesterday. What the doctors told you is FABULOUS news… no present hydro, sacral small opening….. I can’t help but believe God LISTENS. I was one literally on my knees yesterday, prompted by the facebook group. And I will continue to pray.
Oh Amanda my heart is breaking for you! I hope you know that if it was in my power I would turn this all around for you and your family.
All I can do is pray and send my notes to God to make the changes needed if it is His Will.
He has promised us that one day all of this will be done away with…Revelations 21:3 & 4 This scripture has giving me so much hope for the past 39 years. I had to make a simular decision in regards to Colette and I thank God it turned out for the best.I was told that she would have an enlarged head and be an idiot.
Her head is enlarged by pride but for some strange reason we love her anyway,lol.
I do not tell you this to try and change your mine, just let you know that I trully understand that you have a diffult decison to make.
I WILL LOVE YOU NO MATTER WHAT CHOICE YOU MAKE!
Your friend,
Barbara Mitchell
Hi, I had your online class last year. I didn’t even know that you were trying for a baby until just now. I am sorry that you did not get the support you needed from the board you were in. Motherhood and pregnancy does tend to be a hot-button issue (heck, there was an article on yahoo where they were talking about the recalls of Similac, and the arguments between those who breastfeed and those who don’t were vicious). Whatever you got to do, do it. I hope that whatever decision you are able to make peace with yourself (sorry about the clumsy wording). And Danielle, please keep in mind that tone is not apparent on the internet.
Hi Amanda,
I’m also from BC, but live right here in Orlando. Not sure if you’ve seen my comments on the board, but if I can help you at all let me know. I’d love to meet up with if that would help. I’ve met with other expectant mothers and they’ve told me how calming it has been to see my son in real life. We go to the same OB, and probably the same Neuro practice. My son’s SB is L5/S1…he’s doing so great. Just started walking!
Amanda, I know how hard all this is for you. I found your blog thru the Faces of Loss site. I lost 2 boys to prematurity before getting pregnant with my daughter and 2 boys after her. My daughter has a rare form of spina bifida called terminal myelocystocele which occurs in the sacral area. We had no idea anything was wrong before she was born and the first thing we heard was “There’s a problem “- then she cried and I knew we could deal with anything else that popped up. We were told she would never walk without aid, dance, ride a bike or drive a car. She never used a walker etc except after surgeries, she has over 40 dance trophies and can ride a 3 wheeler. She also not only drives a car but doesn’t need hand controls. She is a very loving,talented and intelligent individual. She recently turned 21 and graduated in the top 4 percent of her high school class and fast tracked her Associates degree and was in the top 10% of that class. Only you can make the tough decision you have facing you. I do not fault you in anyway for thinking of all the options. Just wanted to give you a positive look at the possible outcome of going full term. My thoughts and prayers are with you regardless of what your decision might be. Good luck dear
Oh Amanda. My heart continues to break for you. I have been praying for you and have asked many people to pray for you as well. As I said in my comments on a different post, I am a mom of an amazing daughter with SB. I found your blog in a semi random way. I am so sorry that you’re being mistreated by some of the SB moms out there. I know that you just need support and prayers right now. I think this is just so difficult for the SB community because we are all struggling to show that our kids are worth being alive in spite of the things that are different about them. But I have to say that they have no right to call you names! You will continue to be in my prayers.
As someone from “the other side” of this issue, I wanted to say that you are incredibly brave for sharing so much of your process publicly. It is such an intensely personal decision and there are so many factors to consider. Termination is not the “easy” choice, as so many people seem to believe, but it is a different type of struggle. For what it’s worth, our baby’s diagnosis was much more severe (her spine lesion was at T10 or higher and went down into the sacral region, curved spine, already advanced hydro, club feet, etc etc) and I just had a distinct feeling from the beginning that she was never meant to join us in this world. It is the hardest thing I have ever done, and sometimes I feel guilty or angry or bitter, but I don’t ever regret it. I chose to hurt so she didn’t have to.
I hope you can find some peace soon, with whichever direction you choose.
I swear, I cry every time I read your blog. I haven’t caught all the way up, but couldn’t help skipping ahead to see how you are doing now. I realize that you guys haven’t made your decision yet, but wanted to share my perspective. When I had Rachel, we knew before she was born that something wasn’t right, but we didn’t know exactly what was “wrong.” They wanted to do an amnio, but I told them no. In my case, there wasn’t anything they could do for her before she was born, and I didn’t want to be faced with the decision that you are faced with now. I had already terminated a pregnancy out of fear of what might be “wrong.” The pain of that decision has never gone away. So when Rachel’s time came, I already knew that no matter what, she was going to be born. So in that regard, I had it easy compared to where you and your family are right now. I cannot imagine.
Someone sent me the story, “Welcome to Holland” after I had Rachel. It is by Emily Perl Kingsley, and is about parenting a Special Needs child. I think that even where you are in your journey; it is something you can relate to, if no one has shared it yet. Embarrassingly, I can’t at the moment remember how to post a link… don’t roll your eyes at me… I have a lot going on and have brain drain. 
I guess I am telling you about Rachel because a lot of the things you have on your Mind Maps (both) are things that I think all mothers in this position think, whether or not they want to admit it (most probably wouldn’t admit it). Even though I knew I wanted to have Rachel, it didn’t mean I worried about any of the Full-Term things less, and it didn’t mean that I didn’t think about the things that were on your Termination page either. I had my mind made up and I still struggled.
People always say that God doesn’t give you more than you can handle. That saying always made me feel as though I should be able to handle everything in my life on my own. Someone straightened this out in my mind recently. They told me that God gives you enough so you remember to lean on Him.
If you guys decide to keep your baby, there are resources and good people who can and want to help. Things do have a way of working out – just not as easily or quickly as we sometimes like. And if you guys decide to terminate, it doesn’t make you evil. It makes you human. Keep doing what you do best…being you…and then you will wake up one day…and know.
I worked at a special needs school. I remember that essay. It can be found here http://www.our-kids.org/Archives/Holland.html or at Wikipedia.
This comment is not written to attack or to be flippant. I am writing with love and sincerity from my heart. I am begging you, if you decide that your family is not able to raise your baby, for whatever reason, let me adopt her. I will take her no matter how horrible the prognosis. We are a loving Christian family with four children on earth and two in heaven. My husband is a special education teacher.
Please do not terminate.
This comment is not written to attack or to be flippant.I am writing with love and sincerity from my heart.I am begging you if you decide that your family is not able to raise your baby forwhateve reason let me adopt her.I will take her no matter how serious the prognosis .We are a loving Christian family with four children on earth and two in heaven. My husband is a special education teacher.
Please do not terminate.
oops, Sorry about the double post. My computer went wonky on me.
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“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” —Maya Angelou At the end of the summer I received a request for my first Littlest Heroes Photo Session. The Littlest Heroes Project is a volunteer effort I joined this […]
by Amanda Kern
10 comments
WOW!! These are unbelievable and more than worth the wait. You are an amazing photographer and an amazing person. My entire family enjoyed the time we spent with you and I am extremely excited as I have not been able to get Justin to smile like that for a picture in a long time. You have an amazing gift and a loving heart… don’t ever forget that.
WOW! Those are some AMAZING photos! I wish I lived in FL so you could be our photographer! I know what Justin and his family go through day in and day out and I KNOW they appreciate you taking the time to photograph them.
Simply beautiful photography.
These pictures are incredible. You can see the love this family has for eachother…you can see the strength in Justin’s eyes. You have captured moments that this family will treasure forever! You are a blessing for taking the time to really get to know the spirit of this family! Wonderful job!!
GORGEOUS PICTURES!!!!!!! I’d be honored to have you photograph our family anytime…if you’re ever in AZ, let me know Your talent is amazing!!!!!
B E A U TI F U L
These pictures are beautiful. I love this family and love that you took these wonderful pictures for them.
Your photography is a gift – thank you for sharing it.
Wow! Beautiful! One wonderful photo after another! You are a talented photographer, who has given this this family an incredible gift.
Ah WOW. These are gorgeous photos of a beautiful family. Amanda, nice job. Lora is a friend of mine and I am so glad that she and her family got to participate in this photo shoot with you. Thank you for showing them off like the “Rock Stars” that they are to me.
Have a wonderful day.
What gorgeous pictures!! You have such amazing talent you can see the love and the beauty in every single picture. This is one wonderful family and you captured that in every single shot…WELL DONE!!
Awesome! I just love every single one of these photos. You did a wonderful job photographing this beautiful family…and an even more wonderful thing by participating in this Littlest Heroes project.
What beautiful pictures! You have captured the essence of this family! Darling children. Darling parents. What a special gift for anyone dealing with diabetes – or any disease. Thank you so much for lifting up this family’s spirits through your art! Great job!
“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 […]
by Amanda Kern
4 comments
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
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.
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….
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 […]
by Amanda Kern
24 comments