Last time I was at Shriners, one of the doctors asked if I had checked my folic acid levels after having Davey. I responded that I'd never heard of anything like that and had not checked them. The doctor then proceeded to say she had spoken with a geneticist about our family...two kids with spina bifida. The geneticist said that I most likely don't metabolize folic acid properly, so that's why my last two children have spina bifida. In summary, they thought that if I had checked my folic acid levels after Davey, I would have seen that something was wrong and could have prevented Maggie from having spina bifida. As I listened to these burning words, I thought, "Do you know what you're saying?" I turned away, bounced with Maggie, and wiped my tears.
I'm often asked about folic acid. It's an integral part of spina bifida prevention, and I should lecture about how everyone should take their folic pills. But I'm not in the mood. Honestly, I don't equate my children's bodies to a vitamin. But there are still the questions of "what if" and "why". No amount of science or scripture will give me the answer. So I stop asking and find peace.
P.S. I don't think my docs were doing anything wrong. I really like them. They were looking out for my best interest and giving me medical advice. It's just a tough thing.
I'm often asked about folic acid. It's an integral part of spina bifida prevention, and I should lecture about how everyone should take their folic pills. But I'm not in the mood. Honestly, I don't equate my children's bodies to a vitamin. But there are still the questions of "what if" and "why". No amount of science or scripture will give me the answer. So I stop asking and find peace.
P.S. I don't think my docs were doing anything wrong. I really like them. They were looking out for my best interest and giving me medical advice. It's just a tough thing.
Oh Millie, there are so many "what if's" and "why's" it's just crappy and that's all there is to it. I remember after we lost Michael kicking myself for not taking my prenatal vitamins. "What if I had just gagged them down? Would I have him in my arms today?" That thought crossed my mind more than just once. But I absolutely LOVE what you said at the end of this post "So I stop asking and find peace." I have a firm belief that I could have taken all the prenatal vitamins in the world, but if Michael was supposed to leave this life early then it still would have happened.
ReplyDeleteI believe it's the same with your sweet Davie and Maggie and their Spina Bifida. We are all given trials on this Earth, some are just plain harder than others. Our Heavenly Father has a greater plan, even if it just looks super crappy to all of us down here. He definitely knows what he is doing and I doubt He would let Folic Acid be the make or break in this situation. :) Big hugs Mil. You are wonderful and amazing and I just love you to pieces.
p.s. If you need some chocolate you can come on over. I'm eating chocolate chips out of the bag as I type this. :)
Hilary, I never knew that you had some of those same thoughts/questions about Michael. In some ways, I'm glad we ask those questions occasionally because it always leads us back to the same place.
DeleteHil said it so beautifully! I'm certainly one who says we write our own destiny, but Maggie and Davey are who they are because that's who they are. End of story. I can't believe how insensitive that dr was!
ReplyDeleteElsh, I should have been kinder about the docs. I really think they were trying to help. I think their motiviation was to tell me to look into it in case I got pregnant again. Can't wait to see you on Saturday!
DeleteThere is possibly nothing more depressing than the "what ifs". Don't let them get you down. Millie---you were having this baby one way or another, we both know, she was yours from the beginning and there was nothing you could've done to change that:) She is just how she is supposed to be.
ReplyDeleteI know who the Allred family is! What you wrote is so true. Thanks!
DeleteI'm sure those doctors and geneticists are real smart peeps, but they certainly don't know everything! Only the Lord knows all the answers to the "whys" and "what if's". I will not pretend to know what it's like to have a child with Spina Bifida, I do not. Although Davey and Maggies bodies are not perfect, you have given them a tremendous gift Millie! You gave them life. You have given them what they came here to gain in first place, a body. They are so sweet, and are able-bodied in so many ways. I know that these little ones having Spina Bifida is such a challenge on so many levels. I truly do hope that the Lord blesses you with peace in your heart. I doubt that a little pill called Folic Acid would've or could've changed all this.. Loves!
ReplyDeleteThanks Jamee!
DeleteI agree with Jamee. Doctors don't know everything. They certainly don't take into account what Father wants for us. Look at the amazing things that happened because of Maggie. I had an attending physician send me home because he said I was not in labor. This was my fourth delivery. I know what I'm doing. But I followed his orders and went home. That's how Bowen was born in the car. I hate the doctor and think he is stupid. Would I change what happened? Not for a second. That was the most spiritual experience I have had outside the temple. I thank God for that "stupid" doctor.
ReplyDeleteI remember that about Bowen. Yay for stupid doctors!
DeleteNo matter what the truth is about folic acid, the truth is it doesn't matter because we can't change things Heavenly Father has planned for us.If Heavenly Father hadn't planned for your children to be born with spina bifida, they would not have been born with it. Love you Millie!
ReplyDeleteSadie
Hey Millie,
ReplyDeleteWell, I'm now a nurse and it didn't occur to me about metabolizing folic acid. Checking your levels and all that responsibility falls somewhat on your health care provider. Great, now I probably just gave you stuff for a personal injury attorney. p.s. my dad is a great one! ;)
Millie,
ReplyDeleteMedical doctors don't have all the answers. Folic acid isn't even a 100% cure; it's just a theory.It's the only theory they have right now and it isn't even reliable. I took a multivitamin that had folic acid before I got pregnant and during my pregnancy with Josh. Whatdya know he had Spina Bifida. I didn't take any kind of vitamins with my 4 previous boys and whatdaya know- NO spina bifida. Only God has all the answers,and Millie He is honored that you would cherish and care for these two extra special souls. He trusts you with these angels and all the yucky and hard stuff that goes along with this condition. You are to be commended not reprimanded. He will make your burdens light.
Good to hear from you! Thanks for your perspective and support. I know you understand.
DeleteMy daughter Abbie took Folic Acid supplement prior to conceiving baby AVA. Ava has Spina Bifida anyway. Doctor deal with sooooo much, and they are continually looking for a way to "take all the pain away". But they are mear mortals. Handing over the control in life to our Lord, well, that's the true answer to peace.
ReplyDeleteHugs to your family. This is from baby Ava's grandma! Daddy Anthony and Mommy Abbie met you in Houston.
Jackee, it's great to hear from you. I remember Abbie and Anthony and think about them often. Ava is lucky to have you as her grandma. Thanks so much for saying hello. It's so true that our life is in the Lord's hands. And I wouldn't have it any other way. Please tell your family hello from me!
DeleteHi, I am Frances Smith, mom to SB son Conrad. His is 13 yrs old, full-time wc guy, L3, shunt, ACE procedure, bladder augmentation etc etc. We love him! Life is hard! I read about this blog in BYU Magazine. Thanks. I'll definitely be checking in occasionally. We live in St. George. Thanks!
ReplyDeleteFrances, thanks for writing a note to me. It's good to hear about your son, Conrad. It was weird to see our blurb in the BYU Magazine. My cousin called to tell me, and I had to dig mine out of the trash. You live in St. George? So I bet you come to Primarys for all your visits. Good luck and thanks for saying hi!
DeleteYes. We love it here, but sometimes I wish we were closer to SLC for the w/c sports and Primarys. We spent way too long there last summer, it was a bit traumatic, as Conrad's bladder surgery went all wrong. Then came back to St. G and were hospitalized here too. He is doing so well now, thankfully!!!
ReplyDeleteI've been thinking about your post. Because... mostly, Drs DO know what they are talking about. And that is the hard part. And I can totally relate to the guilt (an extra we certainly don't need), and I totally relate to the stairs/stares. There are so many stairs we can't do, and I just laugh about the stares now but when Conrad was little, it was hard for me. Funny the things we can adapt to... Hug the kids! See ya.
Hey Millie. I haven't seen you since our married student ward at BYU but I saw your name and website in BYU magazine today and wanted to say HI! After spending a few minutes on your blog, I just want to give you a big hug. I don't know much about spina bifida, but I do have a son with a rare disease. So I know lots about insurance battles, traveling across the country to the doctor, numerous surgeries, more specialists and doctors appointments than I can count, and having life turn out so much differently than I expected. I am certain that you and Matt are amazing parents to that special clan, and those kids are so lucky to have you. Sending hugs from Wisconsin. Jenifer Lee
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