“We do not remember days; we remember moments.” ~Cesare Pavese There’s no ignoring the influence my photography has on my children. They’re not just a subject of my photography but they both have begun to gain an interest in taking photos. Jaylen is still a bit young but enjoys to take photos (a.k.a. “cheese”) on […]
Category Archives: Hope
awww i remember when we did that shoot with Jordan. She was determined to get her pictures in I can’t believe how little Jordan was..time flies!
That is just precious! Way to go Hope!
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“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
79 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.
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!
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 atThanks 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.
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.
http://www.our-kids.org/Archives/Holland.html or at Wikipedia.
I worked at a special needs school. I remember that essay. It can be found here
Please do not terminate.
Please do not terminate.
oops, Sorry about the double post. My computer went wonky on me.
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“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
no comments
I imagine I am no different than any other mother expecting a little one. Though this pregnancy has seemed to be going well, I admit I find myself still 16 weeks into this pregnancy quite nervous and always anxious as each doctor’s appointment rolls around. After all I’ve been through it’s tough to deny that […]
by Amanda Kern
52 comments
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I don’t know who gives kids permission to grow up so quickly but today was one of those days that I found myself realizing just how quickly my baby girl is growing up. Today, my baby girl got braces. Far younger than most kids who end up in braces making me feel as though she’s […]
by Amanda Kern
59 comments
I guess Hpe got her bad teeth from you. Remember how bad your teeth were. We didn’t have the money to put you in braces, When the oone back tooth came out your teeth started to line up. I was sure happy when they did, Hope looks cute.
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