Pennies in a fountain

19 Feb

I’ve had a very hard time trying to finish a post for our blog – the past two months have been mentally trying for our Krabbe and Leukodystrophy community. Since 2013 has begun we have lost six of our beautiful children. Each loss leaving us with a bigger tear in our hearts.

      Madison – Age 6 ½ 
      Adam “JoJo” – Age 2 
      Candise – Age 9 ½ 
      Matthew – Age 2
      Madelyn – Age 1 ½ 
      Montgomery “Gummy” –  Age 4 ½

Although I don’t personally know the families of the children listed above I can say that I know them better than some of my closest friends. We share the same hopes and fears, we have relished in our children’s small successes and we have shed tears together as our children struggle through the journey of this awful disease. Each child although unique is also a reflection of our daughter.

When Lauren was first diagnosed with Krabbe disease I felt as though my whole world came crashing down around me. She had been served a death sentence and I mourned her life, I mourned my smiling healthy baby girl and I prepared to begin a new path with my dying child. I remember thinking that no moment to come in my life could possibly hurt more, and that when Lauren would pass I would be prepared.

As time passed, I discovered how resilient we are. I pushed aside the idea of death and the future and instead shifted my focus to the moment at hand. Lauren is alive, she is present, she deserves to be treated like the living. So began the quest to ensure that Lauren would live with a quality of life. My husband and I learned to look for small signs and moments to rejoice in. While other babies her age were walking for the first time, we were happy to hear Lauren’s voice. While other children began speaking, we would hang on to Lauren’s sighs and the occasional almost silent laugh, a laugh sweeter than any other sound we have ever heard.

We have adjusted to our lives, and the more time that passes the more I fear to lose what we have. Life is not easy, and it is not fair, but I have found joy and happiness in our greatest struggle. I can’t imagine losing it….

My heart is broken for the parents of our Angels, there are no words that can make right of the moment you lose someone you love. I pray that they may find peace.

I pray for a miracle, I pray that God heals Lauren and that He heals Lauren’s sisters and brothers. I Pray for a cure for this disease, I PRAY!

I also make wishes all of the time, i wish on stars, the moon and with pennies. I welcome any opportunity to express my hope.

The other day Lauren and I were shopping at the mall and we decided to take a rest by the fountain. I looked into the water at the cracked tiles that were littered with copper coloured coins. The pennies shone a dull glimmer, and for a brief moment I remembered how magical this fountain had seemed when I was a child. I looked back at Lauren and asked her if she would like to make a wish, she batted her long eye lashes at me (of course I took that as a yes). I grabbed a penny from my wallet put and held it against Lauren’s soft palm for a moment before tossing it into the fountain. I would share our wish but I hear that’s bad luck, I’m sure that you can guess it 🙂

Lauren looking at the fountain while she makes her wish

Lauren looking at the fountain while she makes her wish


8 Responses to “Pennies in a fountain”

  1. Carol Parks February 19, 2013 at 1:30 PM #

    For me, it’s a beautiful moment in my day that I always look forward to when I receive your inspiring photo(s) of Lauren, your little angel. I hope parents of children with Krabbe disease everywhere are inspired by your life with Lauren moments in pictures and words. I continue to pray every day for Lauren and the other children for that miracle or cure.

  2. Silvana February 19, 2013 at 1:43 PM #

    Lauren is beautiful ! I pray to God that she is healed along with the other children who share this disease. I pray the little angles above rest in peace and their families find peace in their hearts. God bless you and your husband for your courage and strength!

  3. Duanelle Hook February 19, 2013 at 2:45 PM #

    I love to see Lauren’s sweet photos. She’s so pretty. I know how you feel about Krabbe. We went through it with our Grandson. We made the most of every day. We had a family birthday on the 10th day of every month. And we took him every where we thought he would enjoy. Zoos, parks, beach, you name it. So keep making the most of every day and take lots of photos. God bless you.

  4. Raphaëlle February 19, 2013 at 4:40 PM #

    Dear amanda I came to your Blog via naeva’s website. I light two candles every night for Lauren and Naeva and all the other children suffering from krabbe disease. I send them all the positive energy I have to keep them as healthy as possible. you and your husband and all the other families are in my thoughts daily and i am sending you all the strength in the world. You are all amazing and your children are blessed to have such wonderful parents! I feel like Lauren and Naeva taught me something essential about how precious each day is and how each of them should be lived to the full, no matter what. Thank you so much to these little angels for this gift! much love from Berlin, Raphaëlle

  5. courtneyocarr February 19, 2013 at 4:52 PM #

    Beautifully written once again Amanda! xo

  6. Terri February 19, 2013 at 5:38 PM #

    Along with our prayers for a cure, Zoe would like to send Lauren all of her pennies, so that Lauren and you and Stephen can have so many more wishes to wish!

  7. Sabrina U February 20, 2013 at 11:16 PM #

    We’re praying with you Amanda. I’m praying for Lauren every single day. We’re also wishing… wishing for her, her friends and their families. I don’t think I’ll ever look at throwing a penny into a fountain in the same way again after reading this post. You remind us all of how these seemingly small gestures can end up meaning so much, and become such cherished memories – thank you. Hugs xoxoxo

  8. ann morfitt February 25, 2013 at 12:08 AM #

    Sabrina’s remark brought tears to my eyes. I don’t know her but she was able to free up my feelings that were welling up as I read your blog. Yes, I will forever think of you, Amanda, and Lauren when I throw a coin in a fountain The northern star guided Mary and Joseph to Bethlehem for the birth of Jesus in a stable. From the sublime to the simple. As Lauren went from strong to weak, that star still shone. I will be wishing on that star that guides and shines on truth and pray to its maker to continue giving the three of you the joy of family love that is so constant and so strong in your 3 beating hearts. You and Stephen have taught your daughter how to love, so the star of truth shines over your household. Yes, and I, too, hope and pray every day for a cure/miracle for beautiful Lauren.You are truly a revelationary writer, Amanda, thx for sharing your soul. God bless you, love Ann xo

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