Give a Little Love!

When my first daughter was born, while we were still in the hospital, she was nursing and started choking. I ran -frantic- to the nurses station where the nurse grabbed her, flipped her over and patted her back. She started to cry. It was the most beautiful sound compared to the almost silent gasping she had done before. The nurse looked at me and said " ALWAYS be thankful that your baby is crying- it means they are alive". My first born was a horrible sleeper, and then suffered from night terrors and cried often. I was often exhausted but when i'd hear her cry i'd be thankful that she was alive. Now my girls are older and are at the stage I call "active " parenting. I feel like i'm often correcting. But sometimes I get a reality check. When I see how desperately some parents hope for their children to be able to shout even if it is at their sister, or whisper after lights out or write on the wall, or go play and drag mud in the house, or chase the dog I remember first to be thankful that my children are growing up able to do these things. I still have to correct my children - but do it more gently and thankfully these days.

This is Teagan before a prolonged seizure left her without sight, ability to speak and virtually no control over her body.

Over the last two years her family has worked hard to help her extensive brain injuries. They have been working with local healthcare professionals and alternative natural therapies. These are helpful, but the greatest chances are occurring with an alternative treatment she's gotten from MNRI therapy by Dr. Masgutova. On this link is a short video illustrating how far she's come. And how far she still has to go.

http://www.youcaring.com/medical-fundraiser/treatment4teagan/98097

I met her family years ago, long before Teagan's seizure. A Christian homeschooling  family of 4 girls they inspired me to consider homeschooling for my own family.  Their  children are a wonderful testament to the love and care showered down on them. My own children call her daughters the "T" girls - and while they have not had an opportunity to hang out with them in over a year- their memories of them are so strong they still talk about how wonderful they are. Especially neat considering the fact that these girls are considerably older than mine and into their own teenage stuff- but yet took the time to make my littles feel treasured!

After a particularly successful treatment this summer the family is in full swing for fundraising to help raise enough  money to send her again (and again and again!). They've done online auctions, and BBQ fundraisers, bottle drives and selling everything from candles to spices to chocolates door to door. They have been wonderfully successful allowing them to go to the united states for treatment three times already. But now they are starting again. Trying again. And my heart breaks for them. And I wish I could reach out and convince everyone to give $10 or $25 so they can help reach their goal- at least for the next treatment- because it adds up and fuels hope. Hope that maybe one day they will be able once again to communicate with their little girl- hope that people really do have goodness and generosity and hope that  one day their life might resume what we take for granted every single day- normalcy !

I don't know how to get this story out- or how to get help for this family , maybe you can help ? Maybe YOU can donate $10 or $25 or $10,000 to help them reach their goal? And if you cannot right now afford to help, please pass this on, and please get on your knees and pray! Thank you so much.


http://www.youcaring.com/medical-fundraiser/treatment4teagan/98097

For more information
http://www.treatment4teagan.org/

A Mother's Silent Protest

I can feel myself taking deep breaths as I pace up and down in my  kitchen, scrubbing the counters with abandon. If you would watch me you might think I was lacking oxygen, fighting off tears or battling exhaustion but instead I'm trying to combat a little addiction of mine called Facebook. You see earlier today I (somewhat rashly) decided to take myself off of Facebook.

Now I have done this before- taken a "Facebook Fast" - however it has always been for myself for a set period of time. I've wanted to create more time or wanted to re-focus on an aspect of my life. Today though it is different.

Today I am making a silent protest. Silent because no one (save the 12 people who follow this blog) will ever know what I am doing. I am making a protest against the abuse of social media.  Earlier this week teen Rehtaeh Parons died after committing suicide because she couldn't escape the criminal harassment following a tragic rape.  Photos of her during the rape were taken and shared- on social media. And she feared that as long as she would live those photos could haunt her.

Social media is the communication medium for our current generation- they live their lives (to a large extent) based on the influences of social media. In some ways this is not so different from generations earlier when social norms were strictly enforced and those who deviated from those norms would face public humiliation and ridicule. But in some ways it is different. Social media ebbs and flows- not with Biblical standards, or a sense of right and wrong but instead rewarding that which is more different or extreme with more "likes" and  "comments" .  Social media is merely a tool, a technology that we must teach our children to control (rather than be controlled by it) but it is also something that plays into the deepest part of who we are-  we are driven by the need to belong, to find our place - to learn that we fit and it is this quest that makes us so so so vulnerable. On Facebook adults (myself included) struggle sometimes with hurt feelings or frustrations because we feel we are being judged incorrectly or misunderstood or simply not valued. I am so thankful that Facebook didn't exist when I was a teenager.

So today I say goodbye to my Facebook account in a small act of protest. I say good bye to my Facebook account because I am a mother to three wonderful little girls and I don't want them to grow up thinking that what matters is what is on Facebook. And while I will miss my Bible study groups, my homeschooling support, and the photos of friends around the world- I will sleep well knowing that I am doing what I can- as little and as insignificant as it might be.

I pray for Rehtaeh Parons and her family, I pray that Jesus returns, I pray that I can be a good mother and while I will at some point have to navigate the messy waters of social media with my children and teach them how to manage- today I do not. Today I just have to hold them close and be thankful they are ok.

Quotes for today  “We must always take sides. Neutrality helps the oppressor, never the victim. Silence encourages the tormentor, never the tormented.” 
― Elie Wiesel

“To spend one's life being angry, and in the process doing nothing to change it, is to me ridiculous. I could be mad all day long, but if I'm not doing a damn thing, what difference does it make?” 
― Charles Fuller

PKU ~ A Day in Our Life

Last week my youngest daughter crossed a threshold from toddler into preschooler and I spent most of her birthday remembering not the day of her birth but the defining moment when she was 7 days old. Perhaps you've read that story HERE so I won't repeat it but it was a terrifying time for us as a family. We didn't know what PKU would mean for us and for our lives and most of all what that would mean for our precious Carolyn.

Here we are 3 years later. Carolyn wakes up in the morning and comes to snuggle and promptly announces she wants her "milky" but before I'm even up she's off again playing with her older sisters- somedays she's a horse named Cookie and some days she's a kitten named Saraphina. Every day is full of laughter and fun. And most days a bit of mischief too. So after her morning "milky" (her PKUspecial formula that she will be on for the rest of her life) we all sit down for breakfast- she enjoys vanilla flavored cultured coconut milk and raspberries. She also enjoys a specialized PKU porridge that took me forever to figure out how to make (I boil water and let it sit for about 5 mins then add about one cup of water to 62 grams of PKU porridge and stir for 4 min). Some days we special pancakes that come from a special pPKU pre made mix. And some days she has her special PKU toast with Biscoff spread. I was so worried when she was born that she would never be able to sit and eat with us- because she would long for what we were having and not have anything at all. Instead the opposite is true- most days her sisters wish they had PKU because they think that her food looks more interesting than theirs (although when I've ever let them taste something they say it is "yucky" so we now have a stricter no sharing policy and a severe no saying "yuck" policy!). She doesn't cry because she is hungry- she cries because i make her sit at the table to finish her food! After i re-weigh what she didn't eat and log her food and plan what food she will need for the rest of the day to reach exactly her phe requirements and her calorie requirements then our day really begins.

I homeschool our children and the reason I started was actually out of fear. You're not supposed to admit that but I was afraid that Carolyn would not be able to have PKU and thrive in the school system. I was worried she would get a cookie from a parent helper or be bullied because her "milky " smells weird. So I pulled our oldest out of school and have never looked back. We love homeschooling and we're all thriving in so many ways. Today though I don't have that same fear- at barely 3 years old whenever someone gives her anything she asks if it is "low phe" or "high phe" and if they do not know the answer she asks if they have weighed it and if not then she will not eat it. In fact one day I was feeding her and absentmindedly put my spoon from my plate in her mouth and she wouldn't close her mouth- I quickly realized what I had done and took the offending food out of her mouth and she promptly said " I don't want to get SICK mom!".

So our day begins with a bit of reading and puzzles (she can do a 24 piece puzzle at this point) and then either play doh or beading or coloring while I help her older sisters. She does a computer reading program a couple of days a week. She is amazing. She works on writing her letters and colors better and better every week. She is a bit of a handful sometimes- she has lots of spunk and always thinks she is right and doesn't always listen to rules and is sometimes openly defiant. There are times when I cannot find a consequence or a bribe for her to change her behavior and I wonder if that is PKU related. She's sometimes shey- even with us- and I wonder if that is PKU related. I suppose I will always wonder. She is gentle with her dolls and loves them very very much - but she also is in love with tractors and big trucks and likes to wrestle and play farme (which is interesting as we have a houseful of girls who are all very girly and so she's had to find this path on her own). She is the most empathetic child I've ever met and is always there to kiss it better and make people get along.

We have lunch and she's started to eat soup (although she doesn't like it) or sandwhiches with her special PKU bread and lots of veggies or sometimes for a special treat - french fries! My daughter has a tolerance of 250mg of PHE per day. It is one of the lowest tolerances in our area. I was terrified there wouldn't be anything I could feed her- but there really is. Her favorite is PKU pasta and Daiya Cheese Alternative. And of course more of her "milky"!

After lunch she still has a nap- and I generally can gauge her level of PHE in her blood by how well she sleeps both at naptime and during the night. When her levels are high she simply doens't sleep- she'll fall asleep for a few moments and then wake up again- she won't nap and the combination of her feeling unwell from her high levels and her lack of sleep makes her difficult. She's uncharacteristically mean, will destroy things, have tantrums and generally be angry and defiant. Thankfully these times are rare. Most of the time we have a change in levels it is becaue she's been ill. Another PKU mother once suggested that i manipulate the calories and PHE on days she is ill and since then it has been much better. They need more calories when they are ill in order to function.

After naptime we might head out to swimming lessons or go to for a playdate or go shopping. She is very social and while she is sometimes very shy as well she thoroughly enjoys other children - and plays well with them. She 's starting to play real games like Candyland and she somehow always wins.

For supper she eats only vegetables and has her  "milky" so we are always careful to make sure that we all share the same vegetables as often as possible. There are many families who take the stance that their PKU child must learn to be different from an early age so they do not provide the same kinds of food whenever possible. I take the opposite stance. I believe that PKU is a big deal and we talk about it a lot- we talk about how many calories and how much PHE she's eaten and if she wants something that is higher PHE we negotiate on what she'll need to eat that is lower phe for the rest of the day. But her plate looks similar to her sisters whenever possible!

By the end of the day it is time for bed and she pretty much gets herself ready, we read a story and thank God for our blessings and for the fact we live in such an awesome country that provides access to special food and formula to help her thrive.

Hardest Nursing Moment

I had the rare opportunity to talk about my nursing experience last week. Really divulge into the ins and outs of how my experiences were different with each child. And so now that all of these memories have been stirred up I've been reflecting on them. Thinking about what was the hardest nursing moment, the most rewarding, the proudest and the one i'll never forget.

I can clearly remember one night - less than one week as a new first time mamma sitting cross-legged on the bed (yep it hurt but i figured i looked more like the diagrams in the nursing info sheet i had sitting on the bed in front of me. It was about 2 am. My firstborn liked to wake up at 2:09am like clockwork so i'm guessing it was about then. My awesome husband had gotten up and taken her from the bassinet by our bed, changed her and then handed her to me to nurse. And i brought her to my breast. My mantra was "hold it like a hamburger not like a cigarette" and I had an info sheet with 4-5 different positions i kept by the bed. She cried, rooted, latched on, pulled her head back, latched off and on again. And again. then she seemed to find the latch that suited her. But it didn't look right so i pulled her off again and tried. She was practically gagging . I started to cry. She cried. She wailed. She just wanted to eat. I couldn't line up my areola. I was a failure. It took about 20 mins and she finally did latch on again and start nursing. I didn't think the latch was quite right but at this point i didn't care. It was the hardest nursing moment i'd had to date and it felt like it represented my entire career of motherhood- i had the info but still couldn't seem to put it into practice.

My most rewarding nursing moment is not so easy to pinpoint. It wasn't just one moment but a collection of them- there is nothing like a milk drunk baby and my babies would drink and drink and drink until they would roll their eyes back and drift to that far away place. And i would think-" that must be true bliss. "

My proudest nursing moment came with my second born. The scenario was eerily similar to the one described as my hardest nursing moment. She was only a couple of days old. My milk had just come in and she was struggling. She would latch and unlatch. It was coming in too strong and she couldn't seem to figure it out. Middle of the night feed (although i have to say my awesome husband didn't still get up and change her and bring her into bed anymore- he was now on firstborn duty and slept through most feedings) - 2 am. I brought her into bed to nurse and she latched on, pulled off and cried out. She did this again and again. I tried the other side but she seemed to have the same problem. She arched her back. She rooted. She wanted to eat and was getting more frustrated by the moment. It wasn't working. I didn't realize that my husband was awake until he asked me why i wasn't upset. Why wasn't i stressed about this. She obviously couldn't eat and we even have any formula in the house (after the firstborn I refused to keep the "FREE" can of formula in the house as i found it too tempting). He was getting stressed. And I laughed- I said she'll figure it out. My job is to hold her and she and my breasts need to come to an agreement. I wasn't stressed. I wasn't the least bit phased. I was now a 2nd time mamma!

And the moment i'll never forget- wasn't a nursing moment at all. My youngest was 7 days old in the hospital, she'd been diagnosed earlier that day with a genetic metabolic disease of PKU and had to go on 6 bottles of specialized formula per day. The dietitian came to our room (we were hospitalized to stabilize her since we didn't know from birth but only from the newborn heel prick test) and taught me how to make these special bottles. And she sat there while i fed my baby a bottle. I even tear up writing this. Silent tears streamed down my face. And the dietitian thought I was upset because of my daughter's diagnosis and the issues that would come along the way- and while I would spend the rest of my life concerned for her health- i was crying because I was feeding my baby a bottle and it represented the loss of the breastfeeding relationship i so very badly desired.

I'm happy to report that I was wrong. I had the opportunity to nurse her a little bit each day (and we're actually still nursing a little bit each day!) and while it was a different nursing relationship it was still a wonderful one. And I realized that I *could* bond with my baby while feeding a bottle once I let go of the guilt and the disappointment.

But what i want to know is what about you? What was your hardest nursing moment? your most memorable? most rewarding?

The Great Education Debate - Part 2 - What Do I Want My Children To Learn?

I went out for a great dinner with a few friends last month and asked them "what are three traits/characteristics would you like your children to have as adults. " Their answers differed from what mine were. In fact, the more people I spoke with the more varied the answers.

If I only had to pick the top three traits for my kids I'd say I want my children to be; honest, empathetic and have self control. I want a lot more for my children too (including for them to be really good at making suppers LOL!) but those are my top three. What are yours?

There is a lot of talk in my world these days about goals and the importance of articulating a measurable goal. So I started brainstorming about what exactly my goals were as a parent. Afterall if I don't have goals then where exactly am I heading? Somedays I 'll admit i'm just surviving until bedtime, but for the most part I feel like I need a direction. I need a plan. Especially now when they are young and I rarely get constructive feedback about how I am doing. There are no quarterly reviews, no bonuses and certainly no raises and so I feel more comfortable if I can at least have a rough map of where we might be heading- short term and long term.

I'm not very creative so I often piece together what others have already outlined as their goals and try to fit them into my philosophical and religious belief systems. It was through this that I accidently stumbled on a list of things kids should know before they leave home.

It was an interesting list that included everything from how to plan meals and shop on a budget, balance your checkbook, change a tire, and how to write a formal letter. It also included a list of academic objectives that the parents had outlined as being relevant to them (I'd post the list itself but i'm not sure who to give credit to) . I was surprised because some of these things I didn't even know how to do.

And yet if I thought about it- I figure they might be helpful and relevant.

Which brought me to the question- what do I want for my children ?

I want them to have a solid understanding of the Bible- not just to be able to memorize texts but to learn it as a life guide and also a lesson in the history of the human condition.

I want my children to have strong social skills, to be able to navigate through different kinds of situations and be able to read people, communicate well, be empathetic and be able to see the good in people and understand that there is also bad influences too.

I want my children to be content and at peace in their family life, their financial life and their work life. I want them to feel gratitude and humility.

I want my children to participate as part of a family and larger community and therefore give and learn to be self sacrificing and believe that it really does take a village to raise a child and to be happy in general but still recognize their individual value and self worth.

I want my children to be educated- which to me includes the ability to be able to solve problems and seek help when they need it. But I want them to be hard workers who don't just find others to solve their problems.

I want my children to be self confident and technically I want them to read, write, play an instrument and read music, speak two or three languages, have a decent understanding of history, geography, math and sciences. I want them to be able to play a good game of soccer and dance a waltz. I want them to be able to have a conversation with anyone. I want them to be able to amuse themselves and to self reflect.

I also want my child to be able to love and to feel loved - always.

At the end of every day could I look at what we did and say that we did things that contributed to these goals (and I'm sorry to say it but I don't think watching Dora counts for learning a second language even though my 2 year old sometimes spontaneously speaks some Spanish words!)

To be honest, some days I 'm not sure how many of those objectives i've hit for each child. Especially on days when my oldest goes to school and the day seems to be a whirlwind of getting her and the other ones ready and dropping her off at school. Then when I pick her up she is exhausted and often falls asleep in the car. Snacktime, downtime, violin practice (or lessons depending on the day) and then supper needs to be made and then too soon it is bedtime. I'm struggling to spend the TIME with my oldest now that she is in school.

A few months ago all of my children came down with the chicken pox one after the other. We had an interesting time between being in quarantine and having pox parties. But I didn't dare send my oldest to school for two weeks then was christmas break for two weeks.

By the end of that month being at home I loved the fact I had *my* child back. She was the happy, helpful non sassy child I'd dropped off at school in September that had somehow been slowly drifting away. I hadn't even realized it until we spend that extra time together.

I had been expecting her to squabble more with her sisters, but they squabbled less. I had expected we'd all go stir crazy - but we had a lot of fun.

And yet I still didn't think that I would ever pull her out permanently and home school her. That homeschool thing was for crunchy granola mammas of 8 kids in denim jumpers wasn't it?

Yet the more I thought about the actual physical TIME i had with her each week and how much less time i'd have with her once she started dance lessons and soccer lessons and swimming lessons.....I started to be afraid that one day when she was 14 she might turn around and say " oh mom - you don't even KNOW me" and she'd be right.

I love my children more than I ever thought possible- and I've learned (through a lot of trial and error) that if I can "like" my children and enjoy their company then all of us have better days. But now I'm wondering what taking my child out of the home for 7+ hours a day will do to that relationship, and how it might hinder my parenting to/for my child. Sigh.