“Incompatible with life.”

“Incompatible with life.” These are the words that have too often been used to describe someone’s precious child. Sadly, sometimes we are left in this helpless place where science has no known cure.We were told this same thing multiple times as we faced the daunting road ahead of an Acrania/Anencephaly diagnosis. If you find yourself in this state of hopelessness where there is nothing more that the doctors can do, I want you to hear some good news…

Your baby may not have long to live, but he/she is most certainly ALIVE.

The beautiful gift we have as mothers, is this reality of the sucking, squirming, developing life inside of us. And one of my favorite experiences as a wife and mother is that moment when the father too can feel his infant child kicking his hand as he rests it on the mother’s belly. This is one of the most amazing moments … When husband and wife and child are all touching and smiling in awe of the new life that has been created … If you have been given news that your baby’s life will not be long or is nonexistent by society’s standards, don’t let his or her life be taken from you too soon.

I remember receiving the news – it is life shattering. I remember driving home from one of our many ultrasounds and feeling my son kick – I didn’t smile, instead I wept, I felt helpless as a mother, as if my baby was reminding me that he was hurt and there was nothing I could do to save him. This hopelessness came along with the shock of learning such news, but it is also in how the message is delivered that makes one wonder if there is any chance at all at happiness with this child. “Perhaps it would be best to just end it now and try again,” as a doctor recommended to us.

I’ve thought about this a lot, why the terminology and typical procedures for children who are “Incompatible with life” seem so often to reek of hopelessness and speeding up the death. I wonder, when we realize we have no cure, that we have no control, is it our basic instinct to use what control we have to end the chaos on our terms, on our time? The death of a child is always too soon. And what we forget to realize is that these babies who have been given a difficult or hopeless diagnosis are alive right now! They most certainly aren’t “Incompatible with life” because they have a heart beat, they are living, growing, human beings, they are our children! Don’t let a diagnosis take that away from you.

Like I said, it took me some time to come to grips and see the great miracle that was my son’s life, but I can tell you I came to embrace, enjoy and deeply deeply love every moment I had my sweet boy alive and with me. Each kick proved just how strong this little person was. Every hiccup, every jab to my rip, every flutter melted my heart to his sweet, deformed body and I came to realize the sheer joy he had brought to our family. What a diagnosis can’t tell you is how this little one will change your heart! How he/she will no doubt change many hearts and cause many to love more deeply and live more passionately. We immediately claim two sons to our family because our second son lived, and I also hope in his resurrection with Jesus where he truly lives. For these reasons I realize that a hard heart is a far more difficult diagnosis than what our son had. His soft, innocent heart knew nothing but compassion and now he knows heaven! I hope you can find these glimpses of hope and love as you live this difficult journey with your child diagnosed as “Incompatible with life.” Don’t count yourself short, don’t doubt the power of unconditional love. You can do this and your baby will help you through it til God calls him/her. Love fully, remind others to do the same, and know that the miracle that is your child’s life exists for a reason and one day, if not today, the Great Physician will heal all wounds.

May God bless you precious little ones! You are in our prayers.

 

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Loss: “O, How everything that is suffered in love is healed again!”

Death will never be an easy pill to swallow – even for those of us who believe and hope for eternal life in Heaven. The lack of control and understanding we have as we watch a loved one leave this world is often too much to bear. I’ve experienced the death of grandparents, friends and now my own child and every time it hits me to my core as I realize this life is passing.

Losing a child has brought about an even greater agony as I try to understand what this life is for if my child never really got to experience it. Truly the only comfort is that the Love of God has far greater plans for His children than this challenging, broken life.

As I write on the topic of loss, my heart has been opened up to the millions of other families who have felt this kind of heartbreak. We are all in this together, one way or another we will have to come to grips with the loss of a loved one. In these posts I hope to reveal that even in loss we gain a new kind of love and perspective, one that is everlasting. I love this quote by Teresa of Avila,

“O, how everything that is suffered in love is healed again!”

 

She gives me hope that we shall be healed again and that Christlike love is always worth the pain. In fact it reminds me of another Teresa, Blessed Mother Teresa who wrote “I have found the paradox, that if you love until it hurts, there can be no more hurt, only more love.” This kind of love is stronger than death.

May these times of loss and life after loss only deepen our love for God and one another.

“And God shall wipe away all tears from their eyes: and death shall be no more, nor mourning, nor crying, nor sorrow shall be any more, for the former things are passed away.”
– Revelation 21:4

One beautiful day!

Loss: Posts

 

 

 

Love: Believes all things, Hopes all things, Endures all things

These Posts are examples thrown my way that sometimes whisper, often shout the meaning of love behind 1 Corinthians, chapter 13. “Love is willing the good of the other…and then doing something concrete about it.  It’s not an emotion, it’s not an attitude.  It’s a move of the will.  To want the good of the other, and do something about it.  That’s love.” Bishop Barron

The Way of Love

“If I speak in the tongues of men and of angels, but have not love, I am a noisy gong or a clanging cymbal.  And if I have prophetic powers, and understand all mysteries and all knowledge, and if I have all faith, so as to remove mountains, but have not love, I am nothing. If I give away all I have, and if I deliver up my body to be burned, but have not love, I gain nothing.

Love is patient and kind; love does not envy or boast; it is not arrogant or rude. It does not insist on its own way; it is not irritable or resentful; it does not rejoice at wrongdoing, but rejoices with the truth. Love bears all things, believes all things, hopes all things,endures all things.

Love never ends. As for prophecies, they will pass away; as for tongues, they will cease; as for knowledge, it will pass away. For we know in part and we prophesy in part, but when the perfect comes, the partial will pass away. When I was a child, I spoke like a child, I thought like a child, I reasoned like a child. When I became a man, I gave up childish ways. For now we see in a mirror dimly, but then face to face. Now I know in part; then I shall know fully, even as I have been fully known.

So now faith, hope, and love abide, these three; but the greatest of these is love.”

1 Corinthians 13

Love: Posts

 

 

 

Life: Purpose, Suffering, Joy, Heaven

This Post Category is meant to express the realities of our messy, beautiful lives! There are moments of joy, suffering and often mixes of both. The purpose of this theme is to help us find purpose in it all!

Life can be easy and difficult, fast and slow, sweet and oh so bittersweet, but all of it can bring about the good if we allow ourselves to ask God for inspiration. I hope these day to day thoughts can inspire you to dwell on the goodness of God, purposeful suffering and the Joy of helping one another to Heaven.

Let us all be inspired by Jesus’ perfect example of a life lived with an eternal purpose!

Life: Posts

 

 

 

Meet Clark Job

This is our second child, Clark Job. He was born to heaven 9.15.2015 and we were blessed to spend 9 beautiful months with him. We made the most of our time and love him as our child. Perhaps we love him so strongly that we gave him a lifetime of love in less than a year. We will continue to love him even though he’s gone.

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We found out about Clark’s deformity around 11 weeks gestation. The cause of Acrania (related to a similar, but better known, Anencephaly) is hardly understood. For Clark, his brain was quite present, but sadly the bone molecules necessary to form the skull did not migrate far enough to complete the top of his head, leaving his brain exposed and his life “incompatible” with the outside world.

Given this helpless situation we chose to do all that we could to love our son and experience his life to the fullest. Many of my posts related to our precious second child were written as a journal throughout his diagnosis, pregnancy and time following his birthday.

Clark lived to term and passed away during labor and we dwell on the fact that he only felt the love and squeezes of his mother as he went to the arms of Jesus. Even now, this innocent boy, never touched by the hardness of this world, shines his light and the love of God to millions and as his parents we are so honored to see just how special God chose our son to be. We hope that by getting to know Clark you will also come to better understand the love that God has for you and the reality of His presence even during our darkest days.

Below I share the album introducing our son to the family and friends who prayed so fervently for his life and broken body. The album would eventually (and unintentionally) go viral on FB being shared over 200,000 times across the world – and continues to be shared to this day. His life and the love we have for him has caused countless others to feel the power of God’s love and the love of a simple family. Thank you for your part in spreading this message of Love.

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We include several photos that show his Acrania deformity, please, if it is too much, turn away and pray for us and the sweet babies like our son who are given such a short time here. These pictures capture our journey in a beautiful way and we are forever thankful to Michelle Nagle Photography for being an incredible light and eternal friend. As you can see our family has been with us throughout this time and loved their brother, grandson and nephew too. We cherish his life and these moments forever until God sees it best to reunite us in heaven. We can’t wait to live a healthy, thriving life with Clark in God!

Life is precious, miraculous, worthwhile and beautiful.

Clark Job Edman – FB Album

Clark Job: Posts