Happy New Year!

6 Jan

and a be-lated Merry Christmas and Happy Holidays 🙂 We wish you and your family all the best for the upcoming year, may 2012 bring you much love, happiness and success.

The majority of 2011 was full of pure joy and excitement for us – we welcomed our newborn baby girl, we moved into our *forever* home, we bought a Lexus (ha ha), and Steve’s sister came to live with us for the summer. Lauren was learning new things every day, impressing us with new smiles, actions and even words. Priceless moments.

Towards the end of October, we found out that something was wrong with our smart little girl, and by December we learned that she had Krabbe disease. Krabbe disease – a disgustingly unfair disease that kills our children, stealing one motor control after another. Our lives changed we spent the rest of the year learning to be a stronger family than ever, while appreciating every moment with our daughter.

With the close of 2011 behind us I started to think about what my resolution for 2012 should be. It seemed silly to think about at first but with reflection it made me realize that I wanted to come up with a resolution that would help set the tone for the upcoming year.

2011 ended on a tough note and 2012 wont be any easier – But one thing I know for sure is that 2012 will be filled with a lot of love. We love our little Lauren, and we love living every moment that we have with her. This disease has broken my heart and the pain I feel knowing that Lauren will only be in our lives for a short time is immense.

In my experience, I find that the knowledge of a shortened life not only helps one appreciate the small moments, but it can also add a lot of pressure. I often find myself judging my actions, questioning if I am parenting Lauren properly. Am I giving her the best experience that I can? Should I be doing things differently? I’m mommy, I’m suppose to be able to kiss the boo boo’s better, but I can’t. I think that I’m starting to realize that I can’t punish myself for not being able to protect Lauren from this disease.

So my resolution is a two parter – One – Love, Love my daughter and my family. Two – Forgive myself for something that has been out of my control from the start and stop second guessing my actions. Put those two together and I’ve come up with a vague mission to Love the best that I can and accept that I have done my best.


On January 2nd Jenn Munro took some breathtaking photo’s of Lauren and wrote a beautifully heartfelt blog post about the experience. Please check it out when you have a moment



Pictures below courtesy of my wonderful sister in law Marlena, Thanks Marlena!

A Christmas kiss for Lauren from Mommy

New Christmas Shirt from Nonna! Doesn't Daddy look Happy 🙂

Mommy and Daddy out for a winter stroll


10 Responses to “Happy New Year!”

  1. Lillian Mansour January 6, 2012 at 8:05 AM #

    Amanda you are amazing and your husband too. Your life with Lauren is so heart rending and at the same time beautiful. I have to say I cry when I read your Journey with Lauren. I wish you all the love and peace in the New year 2012. God Bless

  2. Tara Asling-Martin January 6, 2012 at 9:31 AM #

    Hello! I am new to following your blog, first of all please accept my deepest condolences for what you are going through and your family, you don’t deserve this. Lauren doesn’t deserve this. Your story is heartbreaking, Its an important one thou, because it makes me appreciate even more, how blessed I am to have my daughter, how blessed I am to be a mom. I am forever grateful for these gifts. Payton was born on Dec 31st, 2010 she is so close to Lauren’s age, it hits so close to home. Payton has completed my life, the instant she was born. Lauren is so beautiful she truly looks like an angel. Everything you write about reminds me so much of myself, and being a new mom. Especially when you said in this post, that you judge your parenting and wonder if you should be doing something different, that is being a new mom. I question myself all the time, and I think am I doing this right, should I being doing anything differently. Best advice I ever got, was you are her mom, you know Lauren, you know what is best. I always tell people to appreciate the small moments, and I will, and your blog will keep reminding me to do just this. Please know that you will be in my daily thoughts and prayers, I hope you and your family can find strength, knowing we are thinking of you. xo

  3. Tammy Wilson January 6, 2012 at 11:50 AM #

    Please know we share these same feelings and they don’t go away. I think daily, “am I doing right by Marshall”. We can only hope we are doing the best we can and not anything less. Emotions will exhaust you and at times consume you. Live in the moment. Don’t hesitate for a second to put off washing dishes to cuddle up next to your precious angel and take a nap with her. I remind myself that I don’t want any regrets or ‘wish I had done….’ once Marshall is gone. Play, laugh, even stroll in the snow. Be sure she experiences her firsts she may not get, eating new things like snow. Know that you are doing the one most important thing and that is ‘LOVING HER’; it’s why she chose you as Mommy and Daddy. Much Love, Thoughts, and Prayers from the M&M Family.

  4. Jennifer Gilbert January 6, 2012 at 11:56 AM #

    I’ve just come across your blog after seeing Jenn’s images on her blog. I’m so very sorry your daughter has this terrible disease, and want you to know that I’m saying a prayer for your family. I know you will treasure all the moments you have with her.

  5. Jesi January 6, 2012 at 4:01 PM #

    Your daughter is one of the most beautiful little girls that i have ever seen in my life, i have just recently discovered your blog and been checking daily to see your new blog, i am a mama of a two year old and your story has made me that much more aware of how lucky people who dont have to experience such life issues as you have had to encouter really are. I can see how you may have questioned yourself and your ability to be the best mommy you can seeing your days with Lauren are numbered however I can really say even not being given the oppertunity to meet you that you are your husband are among some of the strongest people I have ever seen. Its really unfair and unfortunate that your poor daughter needs to go through some of the hurdles she has and the fact that she fights day in and out on a losing battle makes me soo furious that any child needs to endure unfair things such as this, but you guys are doing an amazing job and I love (even though crying the entire time) the blogs that you put up of Lauren, i really hope your husband you and Lauren all have an amazing year, or better yet several years, she is the most beautiful little angel i have ever seen, All the best and stay strong.

  6. ann morfitt January 6, 2012 at 8:12 PM #

    Happy New Year, Amanda, Stephen and Lauren!!! With all that love and playfulness as depicted in those great pics (by Jenn Monroe), 2012 looks like it’s got a kickstart in a positive loyal direction to family, friends and God! As Christians, we are allowed to blame God on upsetting the applecart, that is our inalienable perogative. Jesus was angry with his Father and felt abandoned and let him know this. However, He, thoughout the stations of the cross, Via Dolorosa, with the instinct of His Father, allowed Veronica to wipe his face, and returned it to her with His image on it (known as the Shroud of Turin). The name Veronica means ‘vera’ true and ‘icon’ image, thus ‘true image’ and I thank you for these true images of your family that reflect God, Love and hope throughout suffering. Your family is an inspiration to offer all pain up to the Lord and create room for love whilst on this earth. Love Ann and Aunt Nellie xox

    • ann morfitt January 6, 2012 at 9:39 PM #

      Thx to Marlena for these unique true images of family love and warm hearts!

  7. Janet Loughheed January 8, 2012 at 7:40 AM #

    Amanda, I love your New year’s resolutions, they work for everyone, not just someone in your situation. I hope you and Stephen can tell each other that you love each other as often as you tell Lauren you love her. My prayers are with you

    Aunt Janet

  8. Nikki January 8, 2012 at 9:44 PM #

    I found you because a friend posted the link to Jenn’s blog – I hope you don’t mind that I’ve been reading your story. I just wanted you to know that you and your family are in my thoughts and prayers. I wish you a year filled with love.

  9. Carol Hume January 25, 2012 at 6:09 PM #

    You write so beautifully Amanda. I really admire your courage, strength and love that you share with everyone. My thoughts are with you and your family.

    from Carol (your former RESP rep)

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: