An Angel's Whisper I Must Address

[Mindy]

During my angel child's treatment, I experienced anticipatory grief. It was very, very difficult and at times "ugly".   When I say "ugly" - I mean emotional, full-blown snot cries and tearful.  I know that I will experience grief again - but I don't want to experience that kind of "treatment road" ever again. I watched my child waste away. (Waste is a nice way of describing it.)

As a mother, I experienced all kinds of personalities and others who "cared" for my child. It is excruciatingly difficult to watch other people "medically care" for your child, knowing that as their mother, you can't "cure" them.  I wanted to trade places. I wanted to jump in the bed and take all - and I do mean all of the pain.  It tore me down and it wore me down.  My heart ached in a suffocating and paralyzing way.  I felt as though my skin was being peeled away and acid was sprayed on my soul.  

The six weeks leading up to my child's death were the most trying. I knew my angel was leaving Earth and I was trying to come to terms with it while also denying their transition. (So complicated and confusing.) 

As a way of calming my nerves, I would walk the floor. This was my way of clearing my mind or reseting myself. One night (1am) I walked upon the nurse's station to hear the nurse and one of the techs talking about how I was "crazy".  (I was around the corner and I couldn't be seen or heard.) They even used my name in the conversation, unaware that I was around the corner.  These are people I respected, liked and even loved.  I entrusted them with my child's life.  As you can imagine, I was devastated.  A couple of days later, again more conversation about my "craziness" in the nurses break room with the door open while I was in the Family Kitchen (directly across from the break room) gathering a small snack for myself.  Again, devastation.  Hearing those who are charged with caring for my child - calling me crazy - I felt helpless and isolated. 

I have many, many other examples of surgeons, doctors, nurses and other hospital staff (in 2 different states) who acted and said things in a manner that lacked compassion, bed-side manner and feeling.  The nurses and tech situation detailed above was by far the most harmful to me personally.

As I prayed and listened in my angel's last hours, I was able to understand that the nurse/tech actions and gossip were due to many things: 1) lack of life experiences 2) they were new to the profession 3) their own stuff.  People are not malicious, they just don't know.  They don't know how to cope.  They don't know what to do.  Watching another being (human, pet, creature) suffer and die is tough - no matter who you are or what you do.  I came to understand the nurse/techs didn't have a way, time or manner to grieve.

Sooo ... I insisted our child's service be near the hospital and at a time that would allow for all of the staff to mourn our angel.  I felt it was the right thing to do. That's what my angel child whispered to my heart.  (Yes, you can also think I'm crazy.  I'm okay with it now.) Our angel's memorial service was full of the people who cared for them during their treatment.  Every single one of them spoke a heartfelt thank you for including them in our goodbye.  (Yes, the nurses and techs attended who "crazied" me.)

I share all of the above because I (along with other families) have a meeting with hospital administration to share our experiences.  I have not, nor will I ever name the staff. It is unfair and does not remedy the situation.  I have spent a great deal of time praying, listening and talking to doctors I know and respect. 

The most important outcome for me - I want to be heard. I want future families to have different experiences. I want future families, future mothers to know they have what they need in a treatment situation - not medically - my child was more than taken care of.  I want future families to never hear the words "crazy" connected to their name.  I want future families to experience support, love and a "present" medical staff.

I know this is a new part of my path.  I can feel my child whisper, "This is it mom! You need to tell them. They need to know.  There is more to do here, mom."  I don't have all of the answers. I get pieces of a puzzle. I get pixels of a picture. But I feel it. Since the day my child was diagnosed, when I cry - I know it's it right.  I know it's right because it's pure.  I know it's right because it's Truth.

I have begun a list of experiences and points I want to make. My prayer, I can share without breaking down. I plan on breathing and pausing when I require it. I will have tissue in hand.

Thank you for reading. I welcome ideas, suggestions, thoughts ---- and always prayers.

Peace & Many Blessings.

[enna]

I am so very sorry to hear of the death of your angel child.  I have no words for the way you were treated as you spent time in the hospital with your child. 

How beautiful and brave that you included all those who took care of your child. I believe that it is a special gift to 'educate' anyone who has the privilege of caring for the dying and to recognize that grief is traumatic. We need to be so aware of those around us to never say anything that may be overheard by a grieving person. We need more empathy and hugs rather than name-calling. I am sorry this happened to you as you were coming to terms with what was happening around you.  

Anne 

[kayc]

Wow.  There are no words for what you went through.  I think that has to be the toughest thing in all the world.  

I am a confronter.  I believe in getting things out in the open because they can't be corrected if they're swept under the rug.  I realize my way is not your way.  You have a kind and gentle spirit, I admire that.  Sometimes I think it takes more to be that way than a confronter, but I don't know.  As a confronter, I often stand alone for what I feel is right.  It can be a lonely road.  I guess it's not that there is a right or wrong way about how we handle things, only our way...God made us with differing personalities and gifts.

I'm sorry you experienced overhearing talk about you when you were already going through the worst and surely didn't need more.  I hope those nurses learn from it.  You are correct that they are lacking in life experience and ignorant of a better way to handle things.

It must feel strange to have the very people that were there for your child, be unkind to you.  I, too, know the power of forgiveness and the strength of its way.

You are a very special person.  I'm just sorry for all you've had to go through.

[Mindy]

4 hours ago, kayc said:

4 hours ago, kayc said:

 

I am a confronter.  I believe in getting things out in the open because they can't be corrected if they're swept under the rug.  I realize my way is not your way. 

In certain situations, I am a confronter.  Unfortunately, for me confronting can mean the situation has backfires.  I have to work at breaking down my anger and then processing to the point of finding my solution or my action.

4 hours ago, kayc said:

You have a kind and gentle spirit, I admire that.

Thank you for this - I consider myself kind. I'm not sure about the "gentle" part.  My friends tell me - "your presence is known".  I want to be heard and I want change.

 

[MartyT]

First, I send my heartfelt condolences to you, Mindy, on the death of your precious angel, and I am so sorry for your loss.

That said, I have only the greatest respect and admiration for you in your intention to speak up and speak out about the totally unprofessional way your health care providers failed you with their careless gossip and insensitive comments, even as you were drowning in grief at the thought of your darling daughter dying. It is beyond my comprehension how people can behave with such ignorance and downright cruelty in a hospital setting ~ or anywhere else, for that matter.

19 hours ago, Mindy said:

The most important outcome for me - I want to be heard. I want future families to have different experiences. I want future families, future mothers to know they have what they need in a treatment situation - not medically - my child was more than taken care of.  I want future families to never hear the words "crazy" connected to their name.  I want future families to experience support, love and a "present" medical staff.

As I wrote in my article, When Hospice Care Fails a Family, when something goes wrong in a health care setting, "the administrative staff and the clinical staff [should] stand ready and willing to meet with the family to discuss and resolve whatever issues may exist. The philosophy behind that policy is simple and straightforward: It's the only way we can fix things that may go wrong. First we need to be made aware of the problem, then we need to investigate what went wrong and do what we can to fix it, so that at the very least it won't happen again to another family." So I applaud your willingness to do this, my dear, not only for your own benefit, but for the benefit of all the families who come after you at that hospital, and I wish you all the best in the outcome.  ♥

[Bebe11]

I am sorry for your loss.  I also want to say that I applaud you for the way you handled the situation.  Your focus was on your child, and you didn't let any drama interfere with that!  I am glad you will get an opportunity to share your experience with the hospital administration.  I pray the administration will know exactly what to do to keep this from happening to any other families.  Good luck to you!  

[Mindy]

Thank you all for your support and kind words. 

Just finished my first conversation with the Family Advisory Group.  Wow!  They listened, they apologized, they took notes --- I feel heard.  There were 2 other people involved (parent of a patient and a patient).  What a great experience! What a blessing for me!  They are making an action plan, they are going to get back with me.  There is more to share - it will happen in time. 

Truly an opportunity - a window - a peace of hope.  All in my angel child's honor - I'm sure their dancing.  This small pixel of peace brings some hope too.

Continuing to look toward the sky, feeling my angels child's presence. Honoring their spirit.

[MartyT]

Wonderful, Mindy. We are so proud of you ~ and I think you've made your angel child very proud of her mom, too. ♥

[kayc]

Mindy,

I'm so proud of you!  That took courage, I'm sure your angel child is with you.