To those affected by a heart defect:

A Tribute…

May 22, 2008 at 6:12 am by Mom & Dad

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A Tribute

To the girl with whom we shared many songs and many stories,
many smiles, and many tears

Who captured the hearts of everyone she met
and of those who loved her from a distance

To a special baby, a beloved daughter,
and a lily whose bloom was short but ever so sweet

Who taught us to be thankful for every precious day
and mostly, for the glory that is to come

With all our love and longing,
Mommy and Daddy

Posted in Memorial | 6 Comments »

Thoughts from a Mother- One Year Later

May 11, 2008 at 9:15 am by Mom & Dad

Last year on Mother’s Day, I wrote about how much a sweet baby girl, Haven Leigh Johnson, had changed my life. I wrote of how being a mother to this brave, little fighter had taught me what is really important in life. When this precious life ended abruptly just a few weeks later, this mother suffered a great loss. How, some might ask, can you deal with a life cut short? How does a mother handle the loss of a precious child?

“Therefore we are always confident knowing that whilst we are at home in the body, we are absent from the Lord… We are confident, I say, and willing rather to be absent from the body, and to be present with the Lord.” 2 Cor. 5:6&8


The longing I feel for Haven Leigh is not for her alone. Although I long to hold her in my arms, sing her sweet, little songs, and watch her coo and smile, I long ever-stronger to be where she is. Through God’s grace we have a home in heaven; we are heirs with Christ for eternity. While this is beyond my comprehension, my darling daughter knows this eternal hope of glory that we can only dream of. She understands that the affliction we suffer here on this earth is but for a moment and worketh for us a far more exceeding and eternal weight of glory (2 Cor. 4:17). Her life is a precious reminder that the things which are seen are temporal; but the things which are not seen are eternal (2 Cor 4:18). What greater hope could we ask for?

And what greater gift on Mother’s Day than to know that the little girl who we cherished and protected is now home in the glory of the Father. There is a hole here in our hearts, but let us all remember that our longing is not just for the precious baby, but for our eternal home in heaven in the presence of our Savior.

” For the Lord himself shall descend from heaven with a shout, and the dead in Christ shall rise first. Then we which are alive and remain shall be caught up together with them in the clouds, to meet the Lord in the air, and so shall we ever be with the Lord. Wherefore comfort one another with these words.” 1 Thess. 4:16-18

Praise the Lord that we have a hope greater than death, and praise the Lord that Haven Leigh is now safe in the arms of the Father.

Posted in Memorial | 2 Comments »

This site contains the story of Haven Leigh and serves as a source of hope and encouragement to anyone who has or knows a child born with HLHS, a congenital heart defect, or other terminal illness. Here, we show the rewards of nurturing and supporting a special child while celebrating her memory by sharing her story with others.

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