For #pkuawarenessmonth I will be mainly focusing on the miracle and wonders of maternal PKU Syndrome. All of my life I was told I would never be a mother. Hearing those words does not make the dream die, it does not take away the wish. It does not take away the hope. It does not prevent you for wishing and praying. As the years melted into each other the want never went away. In 2006 I was told for the first time, it was possible. That it was alot of hard work, that it was not for everyone. Well neither is motherhood, pregnancy or parenting. Hard work does not scare me. When the want is there, you can do anything you set your heart and mind to. I relate to those who struggle with infertility and the want to be a mother but for other reasons. I relate to the heartache and the deep deep passionate and consuming want. I relate to the heart work. Though its not doctors tests , injections and treatments for fertility. Its keeping my blood , my body, my brain and my uterus from being toxic.
For many PKU women , its months and months of planning. For many its returning to diet and treatment. Its many months of preparing the body. For preparing your brain. For many its withdrawing from toxicity of high phe levels and side effects. Its adjusting your body to major food changes, to major life style changes. How do they do this?
With the recommended maternal pku pre conception diet and treatment. It is highly recommend that any women with PKU who wants to have a healthy sucessful pregnancy and healthy baby follow a even more restricted treatment then normal , to get their phe levels even lower into pre conception range and keep them there for 3 to 6 months prior to conceiving and then the duration of the pregnancy. I didn’t have this chance. I did things back wards, looking back its totally way harder. both of my pregnancy’s where unexpected and unplanned. But very very much wanted. I prayed to god, I prayed to my deceased grandparents, I prayed to my grammie in heaven. I talked to her regularity. I dreamed. I wished. I wished on ” the first star I see tonight” when the clock stuck 11:11 am or pm. When I had something lucky. I hoped. I held on. I pleaded, and I bargained. Please god, let it be me one day. Let it be my turn. Bless us. Choose us. I promise I will give it my all. Please let it happen one day. Please change his mind, please want him to want this to.
Both times I found out I was pregnant my levels where very high. I was not off diet, I wasn’t compliant. I made allowances. I ate rice, and mashed potatoes, and corn and hash browns. Vegetable sushi, peas, beans, and sooo much rice.
I indulged. I did not weigh my portions. I did not keep track of my intake. I made allowances, and made excuses. Its to hard, Its not fiesable, its not sustainable, i’m to hungry. Its only me that suffers the side effects. Im not hurting anyone but myself. I will do better tomorrow. I will eat less in the morning so I can eat more later.
Having to crash my levels down with in a week, having to re learn the diet, re learn how to cook low protein recipes, how to measure everything. How to track everything. All at once, plus come off anti depressants , anti anxieties and pain medications all at once. If I could change one thing, I would have done better at looking after myself, managing my PKU and actually planning for my babies I would have. But you know what they say about could have, should haves? and if you change the past you might not have the same present or future. I would not change my life for anything.
For I am a mother.
The fact that my daughter is here is truly a miracle in its self, Life is a miracle, growing, creating and giving life is a miracle. Pregnancy is a miracle, but then add my PKU on top of it.
Now here I am about to bring another baby girl into the world. The weight of it is not lost on me. Through all the highs and the lows, through all the tears and sleepless nights, through all the struggles and all the ups and downs, through the smiles and the I love yous, The way my precious girl looks at me, I wouldn’t trade a thing for this life ive been blessed with.
Its not always easy and sometimes we get lost in the moment and we forget where we have come from and anxiously worry about tomorrow. But its worth it. Its worth every single moment. Id gladly pay for every second through this life and eternity.
There is no bond like that of a mother and her child. The bond I have my daughter is everything I ever dreamed of. I cannot simply express in words the depth of my love for her . I see it reflected back in her eyes and its so powerful. It is deep and beautiful and powerful. The way she holds my hands, touches my face, the words that she says, the joy she experiences , the happiness she is and gives, that she lives and shares. Its worth it all. Now that she is such a fluent talker, her vocabulary really floors me. She talks better then some 4 and 5 year olds I know. She really expresses herself, she speaks her feelings and her thoughts and the wow the stories she tells me. The way she tells me she loves me, and how i am the best swimmer ever! make me burst with pride. How even though she is a very strong willed , independent, vibrant , busy 3 year old, she still needs and wants her mama. She still wants our cuddles and our talks, our hugs and our kisses. I will always give her all of me.
It excites me to hear her talk of her baby sister, the stories she tells me about how she will be a big helper, how she will hold and change ” her baby” and all the things babies do and how her baby is in my belly. How every day she tells me what she wants to name her baby. It makes each day that I struggle with this damn life, this damn diet, and these damn foods worth it.
Each day when I have to test my blood, and drive it to the lab, Each day when I sit down at my computer to record every gram of food I have eaten, when I plan my meals in advance, when i make my food, prepare my formula. I am reminded why. My daughter is why. Both of them. For every high risk OB appointment, every midwife appointment, ever extra ultrasound, trip to Vancouver maternal fetal medicine, every email to dietitians and specialists, every panicked phone call, every kick and roll. Every thing I am doing its to give my children the very best start in life. To ensure their health and ensure their futures. The literately weight of their life hangs souly on me , and what I eat.
They say being a parent is always putting someone else before you, and I do that by watching and weighing and counting every single thing I put in my mouth every single day and more. I do it because I am so much more then me. I am their mother. I am a parent. I am a partner and a wife. This is just one part of my life and my daughters. This is how I give them the start in life they need and my care and my devotion and my love and my hard work grows with them and my role changes. From the day they are made, to the day they are born. To all the years to come, I give them all of me.
If anything having PKU has taught me so many life lessons. It has taught me hard work and sacrifice, it has taught me patience, it has taught me how to be strong. It has taught me how to give, and how to be a voice. I use my voice in hopes of inspiring others. To help even one person know they are not alone. To provide support, to provide education, to spread awarness.
Many wonder why I do this year after year . Why I share my story so personally. Why I am so open, why I blog, Why I volunteer for CanPKU , Why I plan fundraisers and events, and why I post soooo much about PKU.
Well every year that goes by I am grateful for medical advancements , for changes in treatment and new research. For being alive and being healthy. For new born screening and I am proud to be able to use my voice to spread awareness . For each new friend I’ve made through out the year , for each new follower who does not know my story , for each new baby born , for each new diagnosis , for each new family effected , and for each new maternal pku mother…I share for you. If I can help just one new person by sharing , that is one more person who feels supported , one more person educated. And 1 by 1 more people will be aware and pku will be less unknown , less scary and less rare !
Remember, together we are all #PKUSTRONG
Happy PKU Awareness month! thanks for following along. I look forward to connecting with many of you this month through social media. Through Facebook lives, though live questions and answer videos, through Instagram and Facebook. Please feel free to share, write me a question you would like me to answer a topic you wish me to cover!
I am PKU Strong 