I know there are many parents who are scared when they get the “incompatible with life” diagnosis.  They know that diagnosis equates with “death”….and that isn’t what a pregnancy is suppose to look like.  I am sharing the following because I was scared too. I knew I would be holding my deceased child, and I didn’ t know if I would find the strength to do it, but I knew I had to, somehow.

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“You never know how strong you are until BEING strong is the only choice you have.”

I’m not sure where I first read the above statement, but how true it is. 

I was praying for a miracle but  planning for a funeral–I held onto the hope that I could take Dekar home and be able to care for him and enjoy his little life.  I discussed feeding and care options with nurses and doctors.  I knew it probably wouldn’t happen, but if it did I wanted to be prepared.  But there was NOTHING I could do to get myself psyched up and ready to hold my deceased son!  Nothing!

I remember telling my hospice counselor, Pam, that I wasn’t worried about taking home a special needs child–I could educate myself on that; what I wasn’t sure about was whether I would have the strength to hold my dead baby.  The thought of it terrified me–how do you prepare yourself for that?  She assured me that I already had the strength.  Well, she could say that until she was blue in the face, but I wasn’t convinced.  I don’t know if scared is the right word….maybe anxious better describes my feelings at the time.  I didn’t know what to expect–but I knew it wasn’t going to be easy.

All I could do was pray and breathe.  Breathe in; breathe out.  Each day after the diagnosis I wondered when Dekar’s life would end.  I wondered if I’d be blessed to be able to look into his eyes.  I wondered how I would endure the pain of seeing my son, lifeless in my arms.  How would I have it in me to face death so up close and personal and ALSO endure seeing my husband and other children face the loss, too?  

Would my arms be strong enough to carry death?  The death of my baby?  I knew I didn’t have that kind of strength in me.  But I also knew I had no choice–when it came to that time, being strong would be the ONLY choice I would have. 

Although I don’t know the exact moment that Dekar’s eyes met Jesus, I do remember looking at him and realizing that he didn’t just look like a little baby any more–he now looked like royalty.  In just a few moments time he took on the appearance of a little prince, with facial features totally relaxed, yet appearing strong and stately at the same time.  

I never expected that the last couple hours of holding Dekar would give me the most smiles.  Here I was , holding the deceased body of my son–the moment I was previously fearing and dreading–and I was actually smiling.  He looked glorious to me.  Yes, I cried many more tears, but he looked so peaceful and beautiful that  I couldn’t help but smile.  His appearance, although lifeless, was magnificent and noble.

When the time had come for my last good-bye, I remember handing over Dekar to the funeral director and saying, “It’s okay.” 

 “It’s okay?!”   Perhaps it was exhaustion speaking, but more than likely it was that in that moment I realized that I had been given the glorious gift of fleshing out the verse, “….My power is made perfect in weakness.”

I can still vividly remember that initial conversation with Pam, telling her I wasn’t sure I could handle holding my dead son.  And I now look back and think of how amazing it is that I actually did it, and how it was not all what I presumed it would be.  I thought holding my deceased child would be terrifying, but the last moments of holding him actually were precious.  Although his body was lifeless and his passing was heart wrenching, being able to soak in his beauty is something I would never trade for anything.  Dekar’s presence made me smile, even when I could no longer look into his eyes.

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I feel compelled to add that I recognize that I was “fortunate” to have known that Dekar would not live long if he would be born live at all.   (I don’t like the word “fortunate” to be connected with the diagnosis of a terminal pregnancy, but because of the diagnosis we were given the gift of preparation.)  Although the knowledge didn’t make things easier, it did afford us the ability to prepare in many ways, including having the opportunity to wrap our brains around the fact that we would be holding our deceased son.  Many parents are not given that “luxury” and the unexpected death of their child takes them by storm.  It is tragic and heartbreaking.

We are fortunate to live in a time where infant death and the very real grief that goes along with it is being recognized and not shoved into a dark closet and never talked about.  The NEWSWEEK article “A Vast and Sudden Sadness” covers the subject quite eloquently.  Infant death is a hard thing for all involved and the more people are educated on this subject, the better.

There are many organizations and ministries now that reach out to those who have lost a baby.  Many hospitals now hold grief support groups for those who suffered through miscarriage or early infant loss.  Parents like me blog about their children and their experiences–it all helps in the healing process. 

Now I Lay Me Down to Sleep recognizes the importance of creating memories in order to help cope with the grief of a newborn loss.  These memorial photos are taken by volunteer professional photographers and are true heirlooms that will be forever treasured by the parents of the baby that was taken too soon.   NILMDTS is still expanding and trying to get into as many hospitals as possible–please consider donating your time, talent and/or money to this worthwhile organization.