Gotta Start Somewhere; PKU Blog

Reality.
We all have different realities in life.

The truth is, we all struggle and we all are dealt things that make our heads spin, and our hearts break. Some of us have lost children, parent, a best friend, or someone close to us. Some of us have a terminal illness, or have been in an accident paralyzing us for the rest of our lives. We all experience things that will affect us for the rest of our lives. Before now, I've been kind of closed off and refused to talk about the one thing in my life that I have struggled with since birth, but I feel comfortable enough now to share it, and to see my situation more as a blessing, instead of a burden. This is my story.

On April 10, 1990 I took my first breath on this earth at 8:32pm. My mother has described it to me many times as a very sunny Tuesday, and one of the best days of her life since it is the day she became a mother. I was healthy it was determined at birth, with the lungs of an opera singer and an APGAR score of 9 (perfect score is 10). My mother and father were joyous with my arrival. However, 9 days later their joy was shattered as they had to come to terms that something was wrong with me, and would follow me the rest of my life.

Now I'm sure those of you mothers are aware that when your child is born, the doctors will stick the heel of your precious babies often causing you to wince at the thought of someone causing your new bundle of joy any kind pain. But let me tell you, it was that exact thing that forever changed my life for the better. You see, one of the reasons they take the blood is to send it off to see if the infant has a autosomal recessive metabolic genetic disorder called Phenylketonuria (or PKU for short). On that 9th day of my life my parents found out that I indeed had tested positive for PKU, and my wellbeing would strongly be altered if appropriate action was not taken immediately.

The boy on the left has untreated PKU, suffering from Mental Retardation.

For those of you who are lost, and have no clue what PKU is I will fill you in a little bit. Babies with PKU are missing an enzyme called phenylalanine hydroxylase, which is needed to break down an essential amino acid called phenylalanine. The substance is found in foods that contain protein, essentially making the baby have to be on a low-protein diet. Of course, as a baby we don't eat or drink much but formula or breast milk. There are different companies that make formulas that are outrageously expensive, but required for a baby with PKU in order for a child to grow healthy. If a child with PKU does not have this formula, and stay on a vegetarian diet as an infant and during the crucial times of development (until about age 16), then the child can become mentally retarded, as well as having delayed mental and social skills, micocephaly (small head syndrome), hyperactivity, jerking movements of the arms or legs, seizures, skin rashes, tremors, or the unusual positioning of the hands. Luckily for me, my parents sought help immediately and got me started on the right track so I don't have any of those symptoms and I made it through the developmental stages safely without harm to my physical and mental processing. Others that were born before the formula was made available, unfortunately, are not so lucky.
So, at 22 years old, I have officially been off my PKU diet since I was 14. That makes it a total of 8 years that I haven't been taking my formula, and staying on the vegan path and the healthy way of life for someone born with PKU. The main reason I went off diet was because people would make comments to me saying that what I ate was "weird" since most of my things were home made, or smelled funny, or I got tired of having to explain why I had to be so "picky". I remember I was at a friends house, and when I told my friend's mother I couldn't eat what she was serving she said I was spoiled and too picky. Little things like that got to me, as I was quite sensitive and tender during my pre-teen and teenage years. Soon, I started to eat peanut butter and grain products.Not being able to have a simple PB&J was annoying to me, so I started ignoring my better judgement. While they things were not as high in protein as meat or dairy, they were still harmful since they are so high in protein. I would get grounded, spanked, and "punished" simply for eating 2 crackers with peanut butter on it. I just didn't understand why it had to be made into such a big deal... who gets spankings because they ate peanut butter? No one I had ever heard of that happening to, except for me. Life didn't seem fair, so when I was at school or anywhere else, I ate what I wanted. My parents would tell my teachers and my extended family members about my PKU and were asked to "watch me" in case I ate something I wasnt supposed to. Of course, if reported that I was eating "off diet things" I got into trouble. I hated who I was, and my PKU. And honestly, I still dislike my PKU. Even today I will get the occasional "Are you supposed to have that?" It takes everything in me to refrain from smacking that person, in all honesty.

Now that I'm a little bit older, and the thought of someday having a family is crossing my mind, I have decided to attempt to get back onto my PKU diet. What a lot of people don't realize is, that without me being on my PKU diet, a healthy pregnancy is unlikely. I can get pregnant more than likey without trying (fertile family... LOL). However, if I was to unexpectedly get pregnant, my baby could suffer for my maltreatment of my own body. The last thing I want is for my own child to suffer with delayed development, mental retardation, poor head growth (microcephaly), poor overall growth, heart defects, and other structural birth defects simply because I didn't do what I needed to to keep MYSELF healthy. I don't want the person I am with for the rest of my life to have to wait for me to get my health in line in case we want to start a family when we get married. Although, marriage is in the back of my mind for now, I have to start working on my health now, so when the time comes I am ready. So I am taking this time in my life to focus on what's important to me; my family, my career, my chasteness, but most importantly- my health.

I'm in the process of getting back on diet, and I have my formula ready to go. I am currently on Bettermilk and Restore, which are fairly new to the PKU community. I will more than likely be taking KUVAN soon (the $18,000/month pill that allows me to have more protein) to help me along the way. I am having to backtrack and undo 8 years of a hurtful habit I have pressed upon myself. I am scared that I will fail- but if I have learned anything is that I need to take it just one day at a time. There will be days that I do great, and there will be days that I fail. However, I have to keep my eyes on the prize. I keep a picture of my family in my wallet, in my car, and in my room to use as a motivation for the life I want to have someday. If I can't get the self control to do this now, then my dream of being a mother may be impossible. And in all honesty, as hard as I'm working for my career now, I'd give up every other job in the world to be able to have and take care my own HEALTHY children.

Keeping my eye on the prize,
Taking it one step at a time,
and being disciplined and persistant.....

That is what I must do.

And I will.

Blessings on your day,
Madison

Trusting Again.

In our lives we all have things we wish we’ve never said,
and things we wish we never did...

Many of us have said “I hate you” to our parents, in our fits of teenage rebellion. Often we make a judgment of others when our opinion isn’t wanted, or needed.   We say “I love you” to those we don’t love.  We also say things we don't mean to those you DO love. We tell our friends lies, are dishonest to our parents, or fail to tell the complete truth to anyone else. We gossip about other’s lives (which we know nothing about),  and we boast about the things we do happen to know about. We spread rumors that cause a person’s heart to become heavy, not knowing the impact it can have on our own. And we say things every day that someone might possibly carry with them for the rest of their life. Words are just words, or so they say. BUT, words can hurt, because words are powerful.
If you truly know me, you know that I am a talker. I am a very blunt, straightforward kind of person. And even though I may talk a lot, there are a whole lot of things I don’t speak of, and probably never will. There are feelings I’ve felt that I can’t even begin to explain to someone.

It’s scary- utterly terrifying, not knowing why you feel the need to do or say something without any realistic cause…. why you say the things you do. However, I believe that our words are a reflection of our hearts... While, I sometimes say things I don't mean, and regret, once I get the chance to talk to someone- the truth of who I am comes out. I'll tell you of my past, my present, and my plans for the future. I'll speak of my difficulties I've come across in life, and I'll mention the moments in my life that seem like they could've come straight out of a fairy tale. But most importantly, I will let you in on my hopes for my future, and the things I believe that are to come. I'll speak of my faith in the unknown in my life- or my newfound faith in God.
You know, I’ve gambled a lot in my life. I've gambled in my friendships, relationships, and on a rare occasion, my money. I’ve won some, and I’ve lost some. I've kept some, and I've tossed some. But I’ve always been the kind a girl that thinks taking the chance to get what you want is ALWAYS worth it. If you get what you want, you GET it knowing the faith, dedication, and determination you had to have to claim it. You get it because it was what God desired for you, and because you earned it. I call those things  or little moments God gives us blessings.

On the flipside, if you DON’T get what you want, you can always say you tried your very best. If you're gonna fail at something, its better to go down swinging, than to never even have tried. There are moments in my life where I feel that I got a little ahead of myself, and gave up when I should've stuck in there, and finished until the end. Those times are the ones that haunt me, and create the "What If" moments in my life. I've learned though, that sometimes the best thing to do after you've failed is to walk with your head held high knowing you did all you could possible; but it just wasn’t meant to happen. As I once heard someone say, "The only real failure in life, is the failure to try." And I believe that wholeheartedly.

I’m used to not getting what I want, but mostly because I never knew what exactly it is that I wanted.... Now, however, I know exactly what I want, in almost all areas. I know what I want from my career, from myself, my spirituality, and from a future with whomever I'll marry. However, I’m prepared to live without it. I know that I'd be okay without the career of my dreams. I'd be okay without the man of my idreams. But the two things I want that I absolutely cannot live without is my faith in myself, and most importantly, my faith in God.  The things I hope for are not necessities, they are desires. We can live without our desires, but we don’t WANT that.

Truthfully, I want a lot of things for my life. But often, what I want isn’t what I need. I have had to learn to lean and trust God in these times.

God provides exactly what I NEED, when I need it. He provides in HIS timing, not mine.

When his timing is, I have aboslutely no clue. I'd like to think that after I graduate, things will start coming together. I'll be moving to the Carolina's with my mom and stepdad, or at least that's what they've said for the past year- but truthfully, I don't know what is to come. Something could happen, and I never make it there- so I have to be prepared for  may happen- I may move to London or Hong Kong for all I know... lol 

But I DO know, that when God's timing for my life comes; whether it be career, opportunity, relationship, or children related, it will be obvious that this was how I was meant to live my live.

The pain we feel isn’t because of God. God doesn't cause us pain- WE cause our pain. We cause ourselves pain when we are unable to let go of toxic people, nonexistant relationships, or the sins and mistakes we’ve committed in the past. We cause ourselves pain  by selling ourselves short, and thinking we are worth so much less than we actually are. We see ourselves for how those that didn't deserve us, and mistreated us saw us, instead of how God sees us. We cause pain in our lives thinking ourselves unlovable, when often if you'd just wake up and turn around, you'd find someone that would give everything of theirs to be something of yours. We cause pain when we mistreat others, are are self seeking for our personal benefits. And we cause pain when we are given another chance, just to throw it away. Pain stems from regret, guilt, or remorse that we've brought upon ourselves. And only God has the ability to take the pain away, if we trust in Him.

All I want for my life is what God wants for me.  I’ve given up every single thing of any worth to my life to HIM to do as he chooses. Literally, I've ended relationships that were unhealthy, and am clinging to the ones that are healthy. I've stopped a lot of my bad habits, and am trying to get ready for whatever comes my way. For the first time in my life- I’ve let go of MY plans for my life- and am totally trusting God. The concept of trusting God, when I don't trust any other person on this earth is amazing to me. But truthfully, when I was at my lowest, the only person that never let me down was God. When things were going bad at home, and when I lost a friend, God was there. I FELT him then, when I was broken and in turmoil. And I can feel him even STRONGER today, as I lead the life I live. My reality is, He’s the only one that’s always been there for me and never let me down. He's the one I can trust to have my best interests at heart because he KNOWS me better than I even know myself. He knows the true desires of my heart, when  I don't even truly have a clue.

I can trust the words of anyone if I choose, but at some point or another they have and will let me down. God will never let me down. I may not get what I want, but I know without a doubt in my mind that God will provide for me exactly what I need, whatever that may be. All I have to do is to take it one day at a time, keep the faith, and be thankful for what I have in the NOW.

God is the one that knows the future- so I’m letting go, and trusting him with my life, heart, and future.  Not knowing where I stand with people or with situations is one of the hardest things for me to handle. However, I know where I stand with God, and that is all that matters.

As my mother often says, "Let Go, and Let God."

And I am.