Dealing with Grief

Acceptance is a hard word it is in many cases no mother or father should ever have to well...... accept.

Some of us had to start this journey before birth, some immediately after birth, some not for months or even years. ALL of  US have  tried to refuse to accept this journey saying not us we will be OK, but to no avail.


I know there are 7 steps to dealing with grief and they are attributed to the death of a loved one, but in this case of dealing with a chronic, complex, critically ill child I think it is something we as special needs moms and dads need to look at as a guide to acceptance and healing.

1. Shock & Denial-

Shock at seeing your angel intbated and the doctors telling there is no hope. Denial in the words that your doctors say like brain damage, no quality of life, will never leave her room.


Shock provides emotional protection from being overwhelmed all at once. This may last for weeks.


2. Pain & Guilt -

As the shock wears off, it is replaced with the suffering of unbelievable pain. Although the pain is excruciating and almost unbearable it is important that you allow yourself to feel this pain fully and not hide it, avoid it or escape it. Guilty feelings of things you should have done or even remorse of the things that you did do. The guilt is hard to avoid and in all cases coulda, shoulda, woulda, is always there. Do not fall into the this is my fault pit, because it is not your fault.


3. Anger & Bargaining.

Frustration gives way to anger, you may lash out and lay unwarranted blame for what has happened to your child. Please try to control this, as permanent damage to your relationships my happen. This is the time I feel that you NEED to release of your bottled up emotions. You may rail against fate, questioning Why me? You may try to bargain with GOD  for a way out of this ("I will go to church more, pray more, give my life anything just heal my son")


4. Depression, Reflection, Loneliness -

Just when you think that you have been "wrung through the mill" long periods of sad reflection my overtake you. I remember seeing babies all over town with the same strollers, wearing the same clothes I had bought Mighty Z, even looking like Mighty Z, and I just breaking down in the middle of stores. This is a normal stage of grief. DO NOT be "talked out of it" by well- meaning outsiders. Encouragement from others who have not walked this road really is not helpful to you when you are here.

5. The Upward Turn-

When your baby finally comes home, and you start to adjust to a different life. Your physical symptoms lessen a bit and you start regaining some control of the situation.


6. Reconstruction & Working Through-

This is the time that you start to reconstruct your life.It will never be the same as before, but you began to start to work through things a bit better, your mind starts working again and you start problem solving again.


7. Acceptance & Hope-

During this you learn to accept and deal with the reality of having a chronic,complex, critically ill child. Acceptance does not mean you give up on a miracle, that you stop fighting for your child, that you now have instant happiness.Given the pain and turmoil you have experienced, you can never return to the carefree, untroubled YOU that existed before this tragedy. But you will find a way forward.  


I does not matter in the end what we call our child's disease whether it is Ondine's Curse, CCHS, CP,CF,TM,SMA,MD,MS, or Undiagnosis.

Accepting the child you have been given and fighting for that child is all that matters in the end.

You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world

Take care of yourselves my friends, don't be so hard on yourself. Know that YOU are not alone














01 02 12

To Trach or not to Trach that is the question

I do not think any parent wants to have to make the choice to trach or not to trach our children, but unfortunately many of us have been placed in that situation.


We have chosen one or the other based on nature of the disease our children have. When Mighty Z was born the doctors had no way of telling how bad Mighty Z's disease really was, because they had never seen it before.


Many years later when the doctors were able to test for the disease we realized that Mighty Z mutation wasn't really that high she was a 26 repeat.


We trached Mighty Z when she was 4 months old based on the information we had at the time. Now children with CCHS who is a 26 repeat might not need to be trached.Would have I trached Mighty Z if I had the option 11years ago? No!! I think think that I would have tried BI PAP 11 years ago.



 However looking back on the past 11 years, I do see that it really was in Mighty Z's best interest that she was trached as a baby. CCHS is a very hard, unpredictable disease, and combined with an infant for our family at least it really was the best choice.


When Mighty Z was 3 we placed in her chest breathing pacers.It consists of surgically implanted receivers and electrodes mated to an external transmitter by antennas worn over the implanted receivers.


By the time Mighty Z was 4 we were able to get her trach out.


Is this the best plan? Did we somehow get it right? No I don't think that at all. What I think is that Our footsteps were ordered by God for what was best for Mighty Z and our family.

Not one road is the best one to take..


I think we need have mutual respect and empathy for all the who walk in our shoes, for all the different footsteps that God is ordering for what is best for each family and their Mighty A's-Z's

Thanks Melinda for letting me use your picture01 02 12