Monthly Archives: September 2010

Initial results from the amnio

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 […]

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September 30, 2010 - 2:25 pm

Jayna - 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.

September 30, 2010 - 4:40 pm

Betsy - “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.

October 1, 2010 - 9:04 am

Tara Hiler - 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.

October 1, 2010 - 1:42 pm

Aunt Deb - Hi Amanda, praying for you daily and knowing that God hears and answers the prayers of our heart!! Hugs,

How we’re doing.

“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 […]

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September 29, 2010 - 9:14 pm

Ed Cross - We’re so sorry, your family will be in our hearts and minds.

September 30, 2010 - 12:25 am

sean - 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.

September 30, 2010 - 8:18 am

Mandy - 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.

My baby has spina bifida

“Today is the tomorrow you worried about yesterday” —Unknown Here is the big news. I will not prolong it. Today the doctor confirmed through ultrasound that my baby has spina bifida. As I struggle to find the words to share this most recent update I find it only appropriate to share the only photo I […]

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September 28, 2010 - 8:53 pm

Kerianne - I am so very sorry to hear your news, Amanda. I feel like nothing I say will be enough. You and your baby will be in my prayers. I hope the amniocentesis brings you answers that help you prepare for your baby’s needs. It must be such a devastating day for you. You are so strong and have such an amazing family that surrounds you. I hope their love bring you comfort. xo

September 28, 2010 - 9:22 pm

Aida - My dear Amanda and family…My prayers are with you. God is with you during these difficult times.

September 28, 2010 - 9:41 pm

Lily - I am so sorry Amanda. I am struggling with what to say but I know I wanted to say something. I don’t know why you have had so many things thrown at you. It seems so unfair. I know I don’t know you on a personal level but as another mother my heart is just breaking. I am hoping for the best case scenario with this child but I know that whatever happens you will handle it with the grace and strength you have displayed in the past.

September 28, 2010 - 10:28 pm

Jaime Scott - I am really so sorry. I hate that you and your family are going through all of this. I will continue to lift you all up in prayer.

September 29, 2010 - 1:20 am

Lorena - I’m so sorry to hear this. There are things in life that we’ll never know why they happen. I know that when we have hard situations in life we want to believe even though we don’t see. The odds of things not coming out right are so high that we don’t know what to think anymore. God is the God of the impossible. Do not lose your faith. You are a strong woman who I admire a lot, I know great things are about to come into your life. You must keep strong for this turbulence you are going through, but believe that God is piloting that plane. When the oceans rise and thunders roar, you will soar with Him above the storm. Our Father is the king over the flood, and you will be still and know He is God. I will have you in my prayers. No matter the news from the doctors, don’t lose your faith.
Be not afraid, only believe -Mark 5:36. God bless you.

September 29, 2010 - 2:58 am

Renée - Dear Amanda, by chance I discovered your message today. I’m so sorry to learn about all that you’ve gone through. My first thought was, please get in touch with the Spina Bifida Association of America, http://www.sbaa.org. They have a wealth of information and may perhaps be able to calm some of your fears. I realise all will only become clear once the baby is born and at the moment you feel that the odds are against you. I guess my best “advice” at this time would be, please don’t try to be overwhelmed at this point by all the possible medical “issues”. You can still dream about all the positive things your new baby may bring to your family.
I’ll try and include a link to a photo that I took at our Annual Conference of a little girl with SB: http://www.reneejopp.nl/100611_ifsbhi/images/img_1727_sm.jpg
I realise there are many different outcomes possible, and I sincerely hope and wish you and your family will find all the strength and support that you need.

September 29, 2010 - 7:52 am

Shanna - I Love You! You are in my thoughts and prayers as you have been since the day I found out we were having another baby. You know I am not a big phone talker but it hurts not to be able to tell you how much I care about you and your family so you can hear it not just read it. I do believe that God only gives us as much as we can handle. You are one of the strongest women I know with a heart that is filled with love for all who you come in contact with. I did want you to know that my mom was born with spina bifida in the lower spine, and was able to lead a pretty normal life. I mean she had three kids one of which turned out perfect (me). Hope that made you laugh. Okay I am going to write in an email instead of on your blog, just in case others don’t get my sense of humour! I love you, I love Jason, I love Hope, I love Jaylen, and I love the precious one you are carrying. Lots of prayers!

Always,
Shanna

September 29, 2010 - 8:04 am

Volker - Amanda, your words are very difficult to read from an emotional stand point and I’m amazed by your strength for writing in such detail. As you and Jason try to get your arms around this life long challenge rest assured that you have a vast support group. What trimester are you in now? Have you spoken to a pediatric neurosurgeon yet? I have access to key opinion leaders so if and when you need the best doctor I would be honored to support you in that effort. Warmly,

September 29, 2010 - 8:20 am

Barbara Peterson - Our hearts are breaking for you all. But you have a strong family – and friends – to lean on, so do it. Lord knows I’ve leaned on you enough times. And you were always there. We love you and are praying His strength surrounds you. Love, Barbara and Bill

September 29, 2010 - 8:43 am

michelle - Oh Amanda – i am lost for words. Please know that I am thinking of you and your family, and sending love xx

September 29, 2010 - 9:13 am

Erica Reynoso Montalvo - Dear Mandy And Jason, Our hearts are with you. We pray for you and know that Heavenly Father is with you. When I was expecting Lili, I was told that she might be born with severe disabilities or die soon after birth. It was the only appt. I went to without Michael. I went into shock. I cried and cried and cried. And then I called Michael. He told me to cry for that day and then to have faith and that together we would receive this baby. To enjoy my pregnancy. And I did. Somehow his words comforted me in just the right way, and I enjoyed the pregnancy. When Lili was born, Mike was right by my side. And I cried tears of joy and gratitude when she was born, a beautiful healthy baby. The medical team did wisk her away to do some tests on her, and she has a couple of health issues that we track, but she has added joy and smiles and plenty of sass (I don’t know who she gets that from!) to our lives, to our family. And I am thankful for that experience. It humbled me, broke me, and made me better. I’ve know two ppl with SB who live rich, good lives, with their own unique challenges – as we all have – but good lives. You are not alone. I think you know that in your core. You will make it through this. You will be scared and sad and you will also continue to have beautiful moments, beautiful days. You are well loved. My best to you and your family always.

September 29, 2010 - 4:58 pm

kari - I came across your blog today. I am so sorry to hear of your news. I am a stranger to you, but I wanted you to know about a couple blogs out there
http://www.spinabifidakids.blogspot.com a great resource for parents
with lits of blogs of parents whose kids have SB
http://www.raisingtoby.blogspot.com my personal story of raising my son with SB
and
baby center has a great forum in their groups with all kinds of mommys whose babies have sb.
I am a christian and wanted to offer you some hope!
will be praying for you even though I dont know you
kari

September 29, 2010 - 7:55 pm

AnnOKeeffe - Tears came to me as I read this. Knowing what you went through last fall, I was hoping you would be spared from further pain.
Parenting is so hard and yet harder when there are additional needs.
Rest assured that you are not alone and that God has all of you in his hands. Often times we are faced with a difficult challenge and left wondering why. But fast forward to the future and it is then that we sometimes see the workings of the Almighty. And yet, sometimes the rewards are not revealed to us.
Either way, I hope that you find comfort, strength and peace in knowing God is with you.

I will keep you in my prayers.

September 29, 2010 - 8:53 pm

Suzanne Moll - Our hearts go out to you and you remain in our prayers. We know what a trying and difficult time this is. Having just come through a life altering diagnosis for our own son we also know how very little there is anyone can say or do, except for be there for you. I remember the whole world standing still for days and days, nothing else mattered or even existed except for our son and our little family. It is obvious that you and your family are very loved. Cameron and I are here for you as well. I’m touched by your courage (even though it may seem more like survival right now) and by your example of faith and love. You are an amazing and gifted woman and an incredible mother. Hang in there. The light, the blessings they do come. I have a favorite quote, “Life isn’t about avoiding the storms, it’s about learning to dance in the rain.” I’m learning to dance in the rain and to recognize the tender mercies in our daily lives. May you be lifted and surrounded in tender mercies.
Please let us know if we can do anything. Our love & prayers, Suzanne and Cameron

September 29, 2010 - 9:16 pm

Melinda Mumford - Amanda I pray that God guides and comforts you all in the days ahead.Have Faith in the fact that “Gods will be done” and we don’t understand but He does.You All are in my prayers.

October 2, 2010 - 11:43 am

jennifer harmon - you are in my prayers.

September 29, 2011 - 1:57 pm

Tara - Amanda, I am very sad to hear the news you have recieved, it’s hard for anyone to hear that there could be problems with their baby but, there is a but….. I am living proof that it may not be as bad as you first think.
I was born with spina bifida a mylomeningecele which is the worst form, I had a few operations in first months of being born. Ok i didnt walk or learn to be dry as quickly as others my age, infact doctors said I probably would never walk unaided or ever be continent. But to everyones disbeleif, I walk, talk and lead a perfectly normal life. I am now 25, buying my first house with my fiance, trying for a baby of our own, been to university and work with children with Special Educational needs.
I know this probably doesnt mean alot to you now as its your little bundle we are talking about but dont lose faith. I hope with all my heart that your story turns into a happy one like mine, my thoughts are with you and your family! x

And now we pray again.

“If you prayed as much as you worried, you’d have a whole lot less to worry about.” ~ Rick Warren As I have sat here in my office getting caught up on my long to do list I was a little surprised to have my phone ring. I’m rarely one to be in my office […]

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September 27, 2010 - 7:56 pm

Betsy - Amanda,
I think a great mom does what is uncomfortable (sharing hard news) when there is even the slighest chance it will help her child. I am sure prayer is a hugh part of the Miracle I call my son & I will lift your own sweet baby up to God hopeful for great things.
Betsy

September 27, 2010 - 10:23 pm

Jaime Scott - I’ll be praying for you and your baby.
“You made all the delicate inner parts of my body
and knit me together in my mother’s womb…
You watched me as I was being formed in utter seclusion,
as I was woven together in the dark of the womb.
You saw me before I was born.”
Psalm 139:13,15,16
All I know is the Lord loves you and your baby and He is with you both through this.

September 27, 2010 - 11:03 pm

Angelique Sm8th - Amanda, I have to believe that Winnie Palmer is the best in the business. I too was high risk with this last pregnancy. The bright side is – you will have more fetal checks, heartbeat opportunities, and ultrasounds than you could have ever dreamed of! You’ll get to this God’s precious gift growing from the inside out!!! This is a special blessing all its own. I remember walking away from my first meeting with the genetic counselor at Winnie Palmer just certain that my baby didn’t have a chance with their continued reassurance that chances were 75% certain that everything would be fine. One of the nurses waliked me through the power of visualization. Through careful prayer and visualizing that our baby girl was going to be born just perfect – the universe responded appropriately. I will believe that this presious gift of yours will have the same beautiful beginnings and make your family a perfect FIVE! If there is anything I can do – please don’t hesitate to call upon me! You are loved more than you know!!!

September 28, 2010 - 9:27 pm

Aida - I will pray to St.Jude for you and the baby. You know you can count on me…I’ll wait.

What it looks like to fail a masters candidacy review

“Success is not final, failure is not fatal: it is the courage to continue that counts.” ~ W. Churchill After spending an incredible amount of time last week finishing all preparations and submitting all of my work for my masters candidacy review I learned last evening that after the hundreds of hours I have spend […]

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September 25, 2010 - 5:16 pm

Lily - That can’t be right! you are one of the most talented and accomplished woman I know. A real inspiration to all of us. What that review board doesn’t know is how you bend over backwards to help your students, no matter how busy you are. Also they don’t know how passionate you are about everything you do. I think that’s one of the problems with an online program. You are so much more than the sum of your projects (although they do stand by themselves). Where do you go from here? Will you be able to tweak a few things for those extra points?

September 25, 2010 - 5:50 pm

Amanda Kern - Lily I really don’t know “where” I go from here. I have only one more opportunity to submit my work for review to continue with my MFA. We can do this at either week 7 of this quarter (just over 5 weeks away) or during the next quarter I’m enrolled, which given the fact that I will take time off to have the baby that will not be until the summer. I will take the advise of my faculty adviser, review committee and any other faculty who care to offer me insight that will assist me in being better prepared next time around. Though to be honest, the subjective nature of this entire process has left me questioning if I truly need to further my design education knowing that I have proven myself in the industry and as an educator. Perhaps there is some other plan that God has that I am still unaware of. But to be truthful I just wish to finish this chapter in my life in order to continue to passionately pursue my career and also my photography & non-profit endeavors. Who knows there may be other big opportunities ahead that will follow once my education is behind me. More importantly I just truly wish to give all this time I’ve been spending in school back to my family. They are the ones who make the ultimate sacrifice in supporting my educational and career goals and as I experience this failure I am reminded and also fearful of how much time slips away from us and before I know it the kids will be grown and I begin to wonder how much I or they will have to remember beyond my time immersed in either books or my computer pursuing my studies.

January 9, 2011 - 12:05 pm

Meg - Dear Amanda,
I found your site today, and could not help but to comment. I failed my 45 hr review last March, and have been working non-stop at improving my skills via any mode possible. The crazy thing is, you are not the first person I have discovered failed just like myself after no indication from professors or advisers. I contacted my adviser asap and explained my situation. I was basically told that I should have known that even though I received As on EVERY project I submitted, I should be better.

So- know that there are others out there that have gone through the exact same thing. I wish you good luck in your future endeavors, and cross your fingers I pass my second time around (next friday). Keep On Keeping On- You can do it.

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