11 pm on a Friday night. My kid has been asleep for a couple hours, what seems like the only person I talk to is MIA (but probably sleeping), and I just decided to list my wedding ring for sale.
Talk about a fast week. I don't even remember Monday, I thought today was only Wednesday when I woke up. I feel like I'm just waiting for my life to begin. Like I'm stuck in this same lonely boring cycle waiting for something to happen. I am only talking about myself here. I know I have Maggie. I know she is growing and excited and we live every single day through the eyes of her two year old adventurous mind. She does keep me on my toes.
But for myself, where does my life start? My life is going, now, yes. But for whatever reason I feel so behind. I will be starting grad school in the fall (though you'd never be able to tell from the grammar of this post), my girl friends and I are planning a trip to Hawaii for our 30th birthdays, and somehow all the guys in my life are making me insane in all the different ways men make women insane. So from the sounds of it, I am right where a 28 year old should be. But it just seems like something is missing. I can speculate. But to be honest I don't completely know what it is. I don't completely know because I don't completely know what I want with my life. I want a family, I want a good job. I want happiness. I think that's what's missing.
This morning every single stupid meme on the internet was just hilarious to me. I was laughing until I was crying. But I felt empty inside. It's such a strange, weird feeling to laugh but feel...dead. I don't normally feel this way, but today I did. I have this literal ache in my soul for missing a person I never intended to miss, I had to ask my Ex about something which just opened a new can of worms, and I listed my wedding ring for sale. Today I hit every single emotion in the book. And I don't have anyone to talk to about it. (Cue where I miss having a significant other or best friend who is on my side).
At the end of the night all I can hope for is that I can find happiness away from relationships for the time being. That I can learn to be patient when I want nothing more than to curl up with someone and laugh at this ridiculous show I'm watching. That I will find and rekindle good friendships with good women. That at a young age of 28, I won't feel like my life is at a stand still, a never ending cycle of boredom. That I will just believe that in the right timing, everything will fall together exactly how it should.
As for the ring, I have mixed emotions. It's a beautiful ring, but I will never wear it again. So, I hope it sells fast, and that will be the last piece of that part of my life to go.
I know this is sort of all over the place. I guess I used this as my journal tonight. I should probably start writing one of those again. I'm sure that will never happen.
Sweet dreams, blogosphere, Thanks for listening.
(p.s. if you're interested in seeing (or buying!) the ring: https://www.etsy.com/listing/469189227/vintage-white-gold-diamond-ring-size-9 )
Saturday, July 30, 2016
Thursday, July 21, 2016
milestones
The last year has been full of so many ups and downs. My faith has strengthened and wavered, my friendships have come and gone, my dating life has been a wreck, and my sweet girl is now almost 2 years old (this might be the hardest pill to swallow). If you had told me this time last year (and even still some days now) that I would make it through, that I will be okay-- I may have rolled my eyes and said "yeah, okay."
But yesterday I put air in my tires on my own, for the first time. I killed an actually pretty big spider hanging in my living room. I put money into my savings account. Paid all sorts of bills I never even thought of 10 years ago (I now owe only 1/4 of what I paid for my car!). And at the end of the night I tucked my girl into bed, read her a story, said our prayers, and we both went to sleep knowing that we are being taken care of. That we have a good car, a roof over our heads, I can work my job and send her to a wonderful sitter, and if she wants the Minnie mouse toy at the store- I can actually afford to buy it for her.
These are the little unnoticed milestones in the rebuilding of a life. I will admit, there are days when I can't see a light at the end of any of the tunnels, but when I really stop to think-- I had a major life setback, that wasn't a product of my own choices -- we are doing just fine. Given, we are doing this okay because we have wonderful, supportive, and helpful family and friends. I wouldn't have made it through the last year without them, and that's a fact.
At 28 years old I truly had a different vision for my life. But when I think about what that vision was, and while I don't necessarily condone divorce, I see so clearly that D and I were on different paths in life. I will never regret my first marriage, but I can only hope that everyone involved in the terrible destruction that it was will learn and grow abundantly from it.
Today I am meeting with Profit/Nonprofit Administration degree program department head to discuss starting my Master's degree in January. This is definitely a 180 from the degree I so passionately wanted to pursue when I started college. I began in Biology, Marine biology (will always be the first love of my life). When I met D, we decided to move to PA which happens to be nowhere near an ocean (yes, I know there is Lake Erie, but that's not the same). So I switched to Earth Science, which will stay a constant love and interest until I die. This is where having children and being on your own changes everything-- I know some people will say to never give up on your dreams, but Maggie is part of my life's dreams, so I am choosing her over underwater cave diving, standing on the edge of volcanoes, and discovering if the Megalodon shark really does still exist (I'm not convinced they don't). I have always had 3 very different things I have wanted to do in life- Marine/Earth sciences, wedding planning/ owning a hall, and helping others- open a sort of shelter, get on your feet, cater to the under-served people of our city country. So today I meet with these advisers to take the first step in the only one of those three jobs that (seems to me) will give my life some meaning. Something worth while. A legacy to leave behind, a place and a hope that people can believe in. A Dream Center (See this link if you are interested in seeing where my mindset is with this place). I believe there is so much more we as people can do for others, and I believe we need to do it, no questions asked.
One year ago I knew I would make it out, I would find the other side of the grief, the loss, the depression that was so desperately trying to make me sink under. I was more hopeful in the midst of the pain than I am some days now. But now I know, without a doubt, that my life is on the right track for me and my girl. As I take this time to spend it bettering myself and in turn - our life, just getting to know who she is becoming - and getting to know this new me in the mix, I am confident that all the gaps will be filled in with the people and things that are supposed to fill them. I am sure that even when I don't speak to Him for days at a time, or some weeks only to tell Him I'm angry- that God is weaving together our perfect plan. I praised Him through the entire wild and crazy storm of the last 3 years, I need to remember to keep praising Him now, while everything is slowly but surely falling back into place.
So this week marks so many milestones in my life, small and big. I hope this date won't forever be ingrained in my memory as the day I got divorced, and I'm sure it won't. But hopefully I can remember it from now on as the day I decided to change my life from what was, to what can be.
But yesterday I put air in my tires on my own, for the first time. I killed an actually pretty big spider hanging in my living room. I put money into my savings account. Paid all sorts of bills I never even thought of 10 years ago (I now owe only 1/4 of what I paid for my car!). And at the end of the night I tucked my girl into bed, read her a story, said our prayers, and we both went to sleep knowing that we are being taken care of. That we have a good car, a roof over our heads, I can work my job and send her to a wonderful sitter, and if she wants the Minnie mouse toy at the store- I can actually afford to buy it for her.
These are the little unnoticed milestones in the rebuilding of a life. I will admit, there are days when I can't see a light at the end of any of the tunnels, but when I really stop to think-- I had a major life setback, that wasn't a product of my own choices -- we are doing just fine. Given, we are doing this okay because we have wonderful, supportive, and helpful family and friends. I wouldn't have made it through the last year without them, and that's a fact.
At 28 years old I truly had a different vision for my life. But when I think about what that vision was, and while I don't necessarily condone divorce, I see so clearly that D and I were on different paths in life. I will never regret my first marriage, but I can only hope that everyone involved in the terrible destruction that it was will learn and grow abundantly from it.
Today I am meeting with Profit/Nonprofit Administration degree program department head to discuss starting my Master's degree in January. This is definitely a 180 from the degree I so passionately wanted to pursue when I started college. I began in Biology, Marine biology (will always be the first love of my life). When I met D, we decided to move to PA which happens to be nowhere near an ocean (yes, I know there is Lake Erie, but that's not the same). So I switched to Earth Science, which will stay a constant love and interest until I die. This is where having children and being on your own changes everything-- I know some people will say to never give up on your dreams, but Maggie is part of my life's dreams, so I am choosing her over underwater cave diving, standing on the edge of volcanoes, and discovering if the Megalodon shark really does still exist (I'm not convinced they don't). I have always had 3 very different things I have wanted to do in life- Marine/Earth sciences, wedding planning/ owning a hall, and helping others- open a sort of shelter, get on your feet, cater to the under-served people of our city country. So today I meet with these advisers to take the first step in the only one of those three jobs that (seems to me) will give my life some meaning. Something worth while. A legacy to leave behind, a place and a hope that people can believe in. A Dream Center (See this link if you are interested in seeing where my mindset is with this place). I believe there is so much more we as people can do for others, and I believe we need to do it, no questions asked.
One year ago I knew I would make it out, I would find the other side of the grief, the loss, the depression that was so desperately trying to make me sink under. I was more hopeful in the midst of the pain than I am some days now. But now I know, without a doubt, that my life is on the right track for me and my girl. As I take this time to spend it bettering myself and in turn - our life, just getting to know who she is becoming - and getting to know this new me in the mix, I am confident that all the gaps will be filled in with the people and things that are supposed to fill them. I am sure that even when I don't speak to Him for days at a time, or some weeks only to tell Him I'm angry- that God is weaving together our perfect plan. I praised Him through the entire wild and crazy storm of the last 3 years, I need to remember to keep praising Him now, while everything is slowly but surely falling back into place.
So this week marks so many milestones in my life, small and big. I hope this date won't forever be ingrained in my memory as the day I got divorced, and I'm sure it won't. But hopefully I can remember it from now on as the day I decided to change my life from what was, to what can be.
Tuesday, July 12, 2016
Que sera, sera
"There are days I want better for us, and days I'm content. There are days I want to be alone, and days I want to spend every minute with her. There are days I hope she will get to know a complete family unit, and days that the thought scares me- for myself. Motherhood is messy. It's scary. And it's always changing. Being unsure isn't a sign of weakness though, I think it's a sign of strength. Of knowing when to walk away, or when something is good enough to take the chance. Of putting her well being before mine, and making sure she never questions how much I love her" (can you guys just look at those cute little pudgy fingers of hers, those little hands that get into absolutely every. single. thing. she can touch. I wish time could slow down just for this year).
I've sat here for literally 6 hours today trying to think of what to write here, and there have just been 18 million thoughts in my head, but none of them seem good enough to warrant telling strangers and friends about. But what I think I will do is go off of my personal instagram post from this morning.
Not only is motherhood a messy, scary, constantly changing affair-- it can be quite terrifying when doing it on your own. The days I am content are of course, the easiest, but they are few and far between. The days I strive to make a better life for my girl are definitely the most stressful, but also the most surreal. I know I have it better than so many other people, but I also know that deep in my heart of hearts I want this little girl to experience a life so full of love that she will never question if her parents considered her in their divorce. Does that make sense? It really takes a good soul to join the ranks of parenthood- especially when joining those ranks as a step parent. It takes someone who truly knows what that means to step into a roll to do life along side of another parent. To get along with the other families and parents involved, to put the kid(s) first when it's supposed to be about them, and to support the parent when the ex is driving them insane.
While I haven't quite found this person yet, I stay hopeful. I know that not all dreams come true, but I also know that God grants us the desires of our hearts, as long as they are in his will. And I just can't believe that a loving God would take me on the road I have been on, for this to not be part of His will.
Lately I really took all the thoughts I had about my life, and threw them out the window. I met a wonderful man, who was every characteristic I thought I wanted in my life, and broke up with him because I realized he wasn't what I needed in my life. I've very recently let myself get all carried away in the feelings game for a guy, and I would be happy to do life with him, but there are so many different factors that said life seems to be putting in the way of that being a real thing. And if that means we just stay friends, then at least we will have that. And for right now, I am okay with that. Que sera, sera (Whatever will be, will be).
This post could end here, but I am going to address a second issue that sort of plays into the one of finding the right person for you and your family. Ladies, when a man quits pursuing you, let him go. Learn your worth. Appreciate your worth and find someone who values that. Who even if you're being silly, or in a goofy mood, won't call you stupid for it, but will grin and bare your quirks. If you have kids, someone who will be okay with you taking time out of your evening to sit with your child and read bedtime stories-- or even better yet, who will read them with you. Someone who will sit with you when the entire world feels like it's crashing in, take your hand, and be on your side through it all. Someone who truly thinks you are beautiful and that you think the same of. Who uses their actions to show you they care, not just their words. Who picks your mind- that you can have silly, serious, political, philosophical and just plain weird conversations with. Find someone who the friendship is so strong that if the love fades, there will still be years of friendship left. Find the person who pursues you, who makes you sane and insane at the same time, who makes you want to be wild and innocent at the same time. Find someone who compliments you, who grows you, challenges you, and loves you just as you are.
But even more than all of the "wise" words I can impart on you, I say this: never be afraid to take the chance. If it is what you truly believe to be right for you, don't let the opportunities, relationships, or adventures pass you by. Life is worth the living, and the scary, messy, unsure roads only make us stronger.
Que sera, sera.
I've sat here for literally 6 hours today trying to think of what to write here, and there have just been 18 million thoughts in my head, but none of them seem good enough to warrant telling strangers and friends about. But what I think I will do is go off of my personal instagram post from this morning.
Not only is motherhood a messy, scary, constantly changing affair-- it can be quite terrifying when doing it on your own. The days I am content are of course, the easiest, but they are few and far between. The days I strive to make a better life for my girl are definitely the most stressful, but also the most surreal. I know I have it better than so many other people, but I also know that deep in my heart of hearts I want this little girl to experience a life so full of love that she will never question if her parents considered her in their divorce. Does that make sense? It really takes a good soul to join the ranks of parenthood- especially when joining those ranks as a step parent. It takes someone who truly knows what that means to step into a roll to do life along side of another parent. To get along with the other families and parents involved, to put the kid(s) first when it's supposed to be about them, and to support the parent when the ex is driving them insane.
While I haven't quite found this person yet, I stay hopeful. I know that not all dreams come true, but I also know that God grants us the desires of our hearts, as long as they are in his will. And I just can't believe that a loving God would take me on the road I have been on, for this to not be part of His will.
Lately I really took all the thoughts I had about my life, and threw them out the window. I met a wonderful man, who was every characteristic I thought I wanted in my life, and broke up with him because I realized he wasn't what I needed in my life. I've very recently let myself get all carried away in the feelings game for a guy, and I would be happy to do life with him, but there are so many different factors that said life seems to be putting in the way of that being a real thing. And if that means we just stay friends, then at least we will have that. And for right now, I am okay with that. Que sera, sera (Whatever will be, will be).
This post could end here, but I am going to address a second issue that sort of plays into the one of finding the right person for you and your family. Ladies, when a man quits pursuing you, let him go. Learn your worth. Appreciate your worth and find someone who values that. Who even if you're being silly, or in a goofy mood, won't call you stupid for it, but will grin and bare your quirks. If you have kids, someone who will be okay with you taking time out of your evening to sit with your child and read bedtime stories-- or even better yet, who will read them with you. Someone who will sit with you when the entire world feels like it's crashing in, take your hand, and be on your side through it all. Someone who truly thinks you are beautiful and that you think the same of. Who uses their actions to show you they care, not just their words. Who picks your mind- that you can have silly, serious, political, philosophical and just plain weird conversations with. Find someone who the friendship is so strong that if the love fades, there will still be years of friendship left. Find the person who pursues you, who makes you sane and insane at the same time, who makes you want to be wild and innocent at the same time. Find someone who compliments you, who grows you, challenges you, and loves you just as you are.
But even more than all of the "wise" words I can impart on you, I say this: never be afraid to take the chance. If it is what you truly believe to be right for you, don't let the opportunities, relationships, or adventures pass you by. Life is worth the living, and the scary, messy, unsure roads only make us stronger.
Que sera, sera.
Monday, June 27, 2016
Monday
I had a really good blog written out, but then it got to this point where the next paragraph was either going to be super blunt, or super whiny. So away went the whole thing and now you get this:
When people are in need, and there is nothing you can do to truly help, the best thing you can do for them is pray. Whether or not they believe in the same God you do, or at all, sending "good vibes" doesn't mean anything, because generally, people don't even keep the person in their thoughts. Prayer is intentional. It is committing to sit down and think about and pray for this person in their trying time. Being intentional is a great sign of love for other people. And loving other people is one of our commandments as Christians.
God has brought me down a road I never in a million years saw coming. But through that, I have been able to bless more people more often- both in my works and my money. And I have learned, as I hope others do too, that God is doing far more behind the scenes than I even realize. I will never know the amount of fighting for me that has gone on, even when I don't feel like He remembers me at all.
I encourage each of you to find some way to help out, to volunteer time or money to a cause. It doesn't have to be a big production. It could simply be a friend who needs birthday or christmas gifts for their kids, someone who needs help with some groceries, a ride to the doctor's office, a cup of coffee and conversation, or even just a hug.
We never know what someone is going through until we reach out and ask. That person who seems so happy might be going through the hardest time of their life. And the hardship could be of their own doing, or someone else's against them, but no matter what- it is a hardship, and as fellow humans, friends, believers- we need to carry those burdens together, with each other and with Christ.


When people are in need, and there is nothing you can do to truly help, the best thing you can do for them is pray. Whether or not they believe in the same God you do, or at all, sending "good vibes" doesn't mean anything, because generally, people don't even keep the person in their thoughts. Prayer is intentional. It is committing to sit down and think about and pray for this person in their trying time. Being intentional is a great sign of love for other people. And loving other people is one of our commandments as Christians.
God has brought me down a road I never in a million years saw coming. But through that, I have been able to bless more people more often- both in my works and my money. And I have learned, as I hope others do too, that God is doing far more behind the scenes than I even realize. I will never know the amount of fighting for me that has gone on, even when I don't feel like He remembers me at all.
I encourage each of you to find some way to help out, to volunteer time or money to a cause. It doesn't have to be a big production. It could simply be a friend who needs birthday or christmas gifts for their kids, someone who needs help with some groceries, a ride to the doctor's office, a cup of coffee and conversation, or even just a hug.
We never know what someone is going through until we reach out and ask. That person who seems so happy might be going through the hardest time of their life. And the hardship could be of their own doing, or someone else's against them, but no matter what- it is a hardship, and as fellow humans, friends, believers- we need to carry those burdens together, with each other and with Christ.


Monday, June 13, 2016
8/8
It's amazing how quickly one comment can make you reevaluate everything you thought to be right. But what's more amazing is how fickle the human mind is and can be. I will be the first to admit that I daily struggle with my faith, what I believe is right and wrong- not my moral compass, but how I don't see smoking or drinking as a sin necessarily (but when it becomes an addiction is a very real illness), or how I too think like so many millennials (and whatever my generation is called) and don't see it as a problem to not be completely involved in a church. And other questions of life.
So a couple weeks ago when a blast from my past said something along the lines of "maybe you need someone who sees the world a little differently" it really made me question everything. And this week, when a very close friend and great woman of God AGREED with that statement, and said that there's a little leeway for everything, my mind was all of a sudden blown.
I have been so focused on living this by the book life, but I have only gotten myself into situations and relationships that I don't love. I have prayed and trusted and felt led into these places, but maybe there was more to them that didn't get nurtured or understood.
I believe God created us to be people of wander. Of chances. Of second, third and fourth chances. Of Growth. Of change. Of doing. Of creating. Of life.
The definition of life is: The condition that distinguishes animals and plants from inorganic matter, including the capacity for growth, reproduction, functional activity, and continual change preceding death.
So what do you do when the right situation comes along, but 2/8 of the things you thought should be one way, aren't? Do you overlook them? Do you compromise? Do you say "well, it's the perfect job in the worst town" or "Well, he's the unicorn I've wanted in every other way" or do you simply say "it's not the full 8/8."
I have a vision for my life. A goal. I have things I want to accomplish, I have completely attainable dreams. But with those dreams, there have to be people in your life who will push you to accomplish those things. There has to be the job who is understanding and accommodating to the fact that you need to work, but also have a family, or other responsibilities, as well as a drive to better your life. There has to be those family members, significant others, friends, who stand behind you and encourage you every step of the way. I have these things, for the most part. But I also have better opportunities and relationships and friendships waiting out there in the world.
So when do you look at everything you thought to be right and true and good, and say it's time for change, and take the plunge? How much courage does it take? How do you know it's the "right" thing, or do you just sort of say "YOLO" and go for it? (I'm inclined to go the yolo* route these days).
I don't know the right answer here, but I do know that life holds so much more than we think it does. There's an entire world out there that is ours for the discovering, if we'll only take the adventure.
*YOLO- You Only Live Once for those of you not hip to the lingo days**
** yolo itself is years old, that's where my knowledge ends. "It's been lit, fam" (I believe that's a legit sentence hahaha ;)
So a couple weeks ago when a blast from my past said something along the lines of "maybe you need someone who sees the world a little differently" it really made me question everything. And this week, when a very close friend and great woman of God AGREED with that statement, and said that there's a little leeway for everything, my mind was all of a sudden blown.
I have been so focused on living this by the book life, but I have only gotten myself into situations and relationships that I don't love. I have prayed and trusted and felt led into these places, but maybe there was more to them that didn't get nurtured or understood.
I believe God created us to be people of wander. Of chances. Of second, third and fourth chances. Of Growth. Of change. Of doing. Of creating. Of life.
The definition of life is: The condition that distinguishes animals and plants from inorganic matter, including the capacity for growth, reproduction, functional activity, and continual change preceding death.
So what do you do when the right situation comes along, but 2/8 of the things you thought should be one way, aren't? Do you overlook them? Do you compromise? Do you say "well, it's the perfect job in the worst town" or "Well, he's the unicorn I've wanted in every other way" or do you simply say "it's not the full 8/8."
I have a vision for my life. A goal. I have things I want to accomplish, I have completely attainable dreams. But with those dreams, there have to be people in your life who will push you to accomplish those things. There has to be the job who is understanding and accommodating to the fact that you need to work, but also have a family, or other responsibilities, as well as a drive to better your life. There has to be those family members, significant others, friends, who stand behind you and encourage you every step of the way. I have these things, for the most part. But I also have better opportunities and relationships and friendships waiting out there in the world.
So when do you look at everything you thought to be right and true and good, and say it's time for change, and take the plunge? How much courage does it take? How do you know it's the "right" thing, or do you just sort of say "YOLO" and go for it? (I'm inclined to go the yolo* route these days).
I don't know the right answer here, but I do know that life holds so much more than we think it does. There's an entire world out there that is ours for the discovering, if we'll only take the adventure.
*YOLO- You Only Live Once for those of you not hip to the lingo days**
** yolo itself is years old, that's where my knowledge ends. "It's been lit, fam" (I believe that's a legit sentence hahaha ;)
Thursday, June 9, 2016
run down of PKU
So I haven't really written on Maggie's condition. So that is what we will learn about today.
Maggie was born with a rare metabolic disorder called Phenylketonuria, or PKU for short. The definition of PKU from the National PKU website is this:
"Phenylketonuria (PKU) is a rare, inherited metabolic disorder that is characterized by the inability of the body to utilize the essential amino acid, phenylalanine (Phe). Amino acids, usually obtained from the food we eat, are the building blocks for body proteins. PKU is caused by a deficiency of the liver produced enzyme phenylalanine hydroxylase (PAH).
This enzyme normally converts Phe to another amino acid, tyrosine. Without this enzyme, Phe accumulates in the blood and body tissues. Excess Phe is toxic to the central nervous system and causes the severe problems normally associated with PKU. When left untreated, PKU patients who consume too much Phe are at risk of severe neurological complications, including IQ loss, memory loss, concentration problems, mood disorders, and in some cases, severe mental retardation.
Damage done is irreversible so early detection is crucial. When treatment is begun early (within the first few weeks of life) and rigorously adhered to, affected children can expect normal development and a normal life span. PKU can be treated by a diet low in phenylalanine and high in tyrosine. While there is no cure, in recent years a few drug products have become available that can be used in limited cases to mitigate the effects of the disorder. Other therapies currently under investigation include an injectable form of PAH and gene therapy."
People with PKU have to drink a daily formula that is the make up of protein, but doesn't have the amino acid phenylalanine. We call it her milk. She will have to drink it every day for the rest of her life. 4 cans (the size of regular Similac or Enfamil cans) cost about $700. She currently needs around 10 cans a month. The cost and the amount needed only increase as she gets older. There are currently 16 states with little or no provisions for metabolic disorders, mainly PKU (I am currently putting a packet together to send to our congressmen to get this changed). Most states, including Mississippi (who has zero provisions for PKU), will allow coverage of formula through the state healthcare (medicaid) for children- if you fight with them enough. Most states give some sort of tax break or monetary help for the everyday foods. Most all of her foods are only available through online stores and some of the costs are as follows:
1 box of 30 individual snack bags tortilla chip bags: $30
8 oz Pea-not butter: $8.49
2lb bag of baking mix (for pancakes she loves): $12.79
(16) frozen veggie meatballs: $20.49
12 cranberry pumpkin cookies : $12.49
(8) mini plain bagels: $12.49
(4) Veggie burgers: $11.49
Pasta: $10/box (like we get for $1 at Wal-Mart)
Cereal: $7/box
Rice: $9/box
Cake mix: $6/box
She is allowed only 7g of protein a day. In comparison, 1/2 cup of peas has about 4g of protein. So even with her fruits and veggies there are some she can't have.
So the question comes up "Why can't she just have a vegetarian/vegan diet?" Good question! Phenylalanine (PHE) is an amino acid that is contained within so many foods. Bananas have zero protein, but high PHE. High protein foods such as: meat, fish, poultry, eggs, cheese, milk, dried beans, and peas are avoided along with wheats and flours. If she were to eat a normal diet that included these foods, severe and irreversible brain damage would be certain.
"Phenylketonuria (PKU) is characterized by elevated blood levels of the amino acid phenylalanine (Phe), which is mainly obtained from eating proteins. The symptoms of PKU almost exclusively concern the brain, so how does an elevated blood Phe level affect the brain? The brain is protected by a surrounding layer called the blood brain barrier (BBB), which allows some material to cross while preventing others. The brain needs certain material to cross the BBB to allow for normal functioning. One of the raw materials the brain requires are amino acids including Phe for building brain proteins and making chemical messengers called neurotransmitters.
The way Phe and other amino acids get across the BBB and into your brain are by using transporters. This is similar to a bus (the transporter) carrying people (the amino acids) to a destination, each seat gets taken up by an amino acid and the next stop is the brain. This analogy provides a visual description of the main theory of how elevated blood Phe can affect normal functioning of the brain. Imagine that elevated blood Phe in PKU can lead to Phe taking up more seats on the bus, which may cause two things:
More Phe gets transported into the brain
Less of the other amino acids that share this bus get transported to the brain because Phe is taking up their spots!"
With PKU there is only mild (HyperPHE) and high (classicPKU). Maggie girl is, thankfully, mild. This puts her as a prime candidate for a somewhat newly FDA approved therapy drug called Kuvan. Kuvan is a type of Sapropterin pill. "Studies have shown that taking daily pills of sapropterin Iower and stabalize blood Phe level in some people with PKU. Sapropterin is available by prescription and is meant as an additional therapy to the Iow-Phe diet. To determine if sapropterin therapy will work, the physician puts the patient on the drug tor a trial period and evaluates its effectiveness." I am so excited to start this for her, and I hope she will be a responder. If she isn't, we will wait a couple years and try it again. It isn't covered by most insurances right now, but that is also something that can be fought for and sometimes approved. But since PKU is so rare (roughly 20,000 people in the US), it's not on the radar for most insurances and states. But when not approved, BioMarin, the owners of Kuvan, have a fund set up and help for the families to pay for it. The PKU community is so amazing in that no one wants anyone to go without. It's truly a blessing that this community is so "all for all, no man left behind".
We will be starting her trial on Kuvan in the next month or so. She will go from having one doctors appointment every other month, to 5 in one month to monitor if it is working for her or not. So, if you're the praying type- please pray with us that she responds, and if it works, she will be able to have much more protein in her diet! (yes & amen!)
Maggie was born with a rare metabolic disorder called Phenylketonuria, or PKU for short. The definition of PKU from the National PKU website is this:
"Phenylketonuria (PKU) is a rare, inherited metabolic disorder that is characterized by the inability of the body to utilize the essential amino acid, phenylalanine (Phe). Amino acids, usually obtained from the food we eat, are the building blocks for body proteins. PKU is caused by a deficiency of the liver produced enzyme phenylalanine hydroxylase (PAH).
This enzyme normally converts Phe to another amino acid, tyrosine. Without this enzyme, Phe accumulates in the blood and body tissues. Excess Phe is toxic to the central nervous system and causes the severe problems normally associated with PKU. When left untreated, PKU patients who consume too much Phe are at risk of severe neurological complications, including IQ loss, memory loss, concentration problems, mood disorders, and in some cases, severe mental retardation.
Damage done is irreversible so early detection is crucial. When treatment is begun early (within the first few weeks of life) and rigorously adhered to, affected children can expect normal development and a normal life span. PKU can be treated by a diet low in phenylalanine and high in tyrosine. While there is no cure, in recent years a few drug products have become available that can be used in limited cases to mitigate the effects of the disorder. Other therapies currently under investigation include an injectable form of PAH and gene therapy."
People with PKU have to drink a daily formula that is the make up of protein, but doesn't have the amino acid phenylalanine. We call it her milk. She will have to drink it every day for the rest of her life. 4 cans (the size of regular Similac or Enfamil cans) cost about $700. She currently needs around 10 cans a month. The cost and the amount needed only increase as she gets older. There are currently 16 states with little or no provisions for metabolic disorders, mainly PKU (I am currently putting a packet together to send to our congressmen to get this changed). Most states, including Mississippi (who has zero provisions for PKU), will allow coverage of formula through the state healthcare (medicaid) for children- if you fight with them enough. Most states give some sort of tax break or monetary help for the everyday foods. Most all of her foods are only available through online stores and some of the costs are as follows:
1 box of 30 individual snack bags tortilla chip bags: $30
8 oz Pea-not butter: $8.49
2lb bag of baking mix (for pancakes she loves): $12.79
(16) frozen veggie meatballs: $20.49
12 cranberry pumpkin cookies : $12.49
(8) mini plain bagels: $12.49
(4) Veggie burgers: $11.49
Pasta: $10/box (like we get for $1 at Wal-Mart)
Cereal: $7/box
Rice: $9/box
Cake mix: $6/box
She is allowed only 7g of protein a day. In comparison, 1/2 cup of peas has about 4g of protein. So even with her fruits and veggies there are some she can't have.
So the question comes up "Why can't she just have a vegetarian/vegan diet?" Good question! Phenylalanine (PHE) is an amino acid that is contained within so many foods. Bananas have zero protein, but high PHE. High protein foods such as: meat, fish, poultry, eggs, cheese, milk, dried beans, and peas are avoided along with wheats and flours. If she were to eat a normal diet that included these foods, severe and irreversible brain damage would be certain.
"Phenylketonuria (PKU) is characterized by elevated blood levels of the amino acid phenylalanine (Phe), which is mainly obtained from eating proteins. The symptoms of PKU almost exclusively concern the brain, so how does an elevated blood Phe level affect the brain? The brain is protected by a surrounding layer called the blood brain barrier (BBB), which allows some material to cross while preventing others. The brain needs certain material to cross the BBB to allow for normal functioning. One of the raw materials the brain requires are amino acids including Phe for building brain proteins and making chemical messengers called neurotransmitters.
The way Phe and other amino acids get across the BBB and into your brain are by using transporters. This is similar to a bus (the transporter) carrying people (the amino acids) to a destination, each seat gets taken up by an amino acid and the next stop is the brain. This analogy provides a visual description of the main theory of how elevated blood Phe can affect normal functioning of the brain. Imagine that elevated blood Phe in PKU can lead to Phe taking up more seats on the bus, which may cause two things:
More Phe gets transported into the brain
Less of the other amino acids that share this bus get transported to the brain because Phe is taking up their spots!"
With PKU there is only mild (HyperPHE) and high (classicPKU). Maggie girl is, thankfully, mild. This puts her as a prime candidate for a somewhat newly FDA approved therapy drug called Kuvan. Kuvan is a type of Sapropterin pill. "Studies have shown that taking daily pills of sapropterin Iower and stabalize blood Phe level in some people with PKU. Sapropterin is available by prescription and is meant as an additional therapy to the Iow-Phe diet. To determine if sapropterin therapy will work, the physician puts the patient on the drug tor a trial period and evaluates its effectiveness." I am so excited to start this for her, and I hope she will be a responder. If she isn't, we will wait a couple years and try it again. It isn't covered by most insurances right now, but that is also something that can be fought for and sometimes approved. But since PKU is so rare (roughly 20,000 people in the US), it's not on the radar for most insurances and states. But when not approved, BioMarin, the owners of Kuvan, have a fund set up and help for the families to pay for it. The PKU community is so amazing in that no one wants anyone to go without. It's truly a blessing that this community is so "all for all, no man left behind".
We will be starting her trial on Kuvan in the next month or so. She will go from having one doctors appointment every other month, to 5 in one month to monitor if it is working for her or not. So, if you're the praying type- please pray with us that she responds, and if it works, she will be able to have much more protein in her diet! (yes & amen!)
Tuesday, May 31, 2016
It is finished

This past weekend I went on a much needed girl's trip with two of my best friends. We all three lead very different lives, but for the last 10 years we have stayed as close as possible. I don't know what the thread is that keeps us going, but if I didn't have these two God fearing women in my life, I don't know if I would be in the place I am now.
On Thursday afternoon we all met at the airport and boarded our first flight to San Francisco. We arrived at the SFO airport around midnight and drove to the hotel. The next morning we got up and took a bus tour of the city, visited Alcatraz, and had dinner at a wonderful restaurant on the beach. It's fun to say we did our touristy time in SF.
But we all had the most fun on the next leg of our trip. We drove up the Pacific Coast Highway, the long way up, just to see the scenery. It was absolutely breathtaking. We stopped at every stop we could and just got out and breathed in the air. The beautiful weather they had over the weekend really spoiled us. That evening we rode horses on the beach, and drove to a beautiful little spot in Albion called the Lord's land.
Let me tell you a bit about this place. We were looking for somewhere in between Humboldt Redwood Park, and SF. So I remembered that a dear old friend was currently at a YWAM (Youth With A Mission) base that way, so we looked it up and booked a cabin about 8 months ago.
As soon as we stepped foot on that campus, the bickering and bad attitudes between the three of us, for the most part, stopped. Which I can only attribute to the absolute peace that is felt as soon as you enter their grounds. Now, I am aware that nature is not everyone's cup of tea, and I even get super creeped out by the occasional bug or wild animal, but I could live at this spot forever. The welcoming beauty that greets you at every single turn is just so telling of what God had in mind for the property many years ago when it was first built. I have never loved sitting outside staring at trees so much in my life.
I know God plans each persons life individually, but I also believe that He is a big enough God to make some of those paths intersect at the exact moment that is needed for one or even sometimes both of those people. In this case, it was for me.
Had I not done a YWAM school around 10 years ago, I would not have met my friend J (fun fact, our parents did their (it's called DTS (discipleship training school)) school together). J is the reason I knew about the Lord's land retreat ywam base (whatever you want to call it) - and whether he knows it or not, God used his life to help mine, if that makes sense. Therefore the girls and I booked a cabin at this place, and thus completed the healing and renewal of my heart. From the second I stepped foot on the property, I just knew God was completing a work in my heart that I have just been praying, weeping, stressing, and waiting for.
On our last evening of our trip my friends and I met up with J and he showed us around the campus and we got to catch up for a little bit. As we were all talking-my friends said, and it came as a surprise to me, that in the last 3 weeks, I am like a whole new person. I knew that I felt different, happier than I have ever been...ever. But I didn't realize just how evident it was. J asked me some questions that sort of got me thinking and it was walking back to my cabin that night that I really thought about some things and really let go of things once and for all.
Y'all, God has such incredibly divine way of intervening in your life at the exact moment you need him to. He is so intricate in the woven design that is your life's movements and paths. He knows that standing in that parking lot, catching up with an old friend, mixing in my newer ones, completely removed from all those unnecessary stresses of my life, was exactly what He needed to make me listen and see exactly what He is doing for me and where He is directing me. I am living out an entirely new lease on life, and I have honestly never been happier than I am right now.
In the months leading up to this trip I was so incredibly depressed. I felt trapped on a road I did not want to go down, and I firmly believe God did not have in mind for me. I cried and cried daily, I didn't want to get out of bed, I couldn't bring myself to play with my kid, I was just not me. It was the hardest couple months I've had in a long time. But around a month ago I broke up with a really great guy. I did the breaking, I did the hurting, that was a weight I had to deal with. But as things came and got more serious with us, I just felt this huge weight on my shoulders, a seriously dark cloud looming over my head. I couldn't shake it. I tried for weeks to explain away the feeling of depression and doubt I had. I tried to pray it away, but it just got stronger. I thought I had heard God tell me this relationship was the right path for me, the right thing to do in my life- to marry this wonderful man of God. All of that came to a screeching halt when I cried out to God and just shut myself up and listened. God blaringly loud told me NO. I now believe that God allowed me to go through this hard time so that the depression would essentially force me to turn to Him, completely. I had nowhere else to turn. I believe God found me where I was, pulled me up, told me no to the relationship for a very specific reason. This guy is all the characteristics I would like in a man, but he is not the one I am supposed to be with. And I truly believe that with everything in me. It took me a couple weeks to stop feeling guilty and like a terrible person, but I believe I am following in the path God has for me- and I don't believe that that is a wrong choice. And I can only hope that other people too will understand that sometimes God tells us no, even if we don't like it.
I've had enough happen in my life before I even turned 28 to know when God is telling me no, to listen-100%. I am not looking to do life on my own, I need His guidance. And I know not everyone will agree with or understand that, but I can finally truly say that I am walking in His ways, and His guidance and His assurance. And I know that with Him and through Him, it is finished. And I will be just fine.
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