The last 30 days

Once again Sickle cell rears its ugly head. Marqus just spent close to 30 days in the hospital. His blood counts dropped . His liver is swollen and full of sickle cells and iron. It has some level of sclerosis. Just as we get our minds in gear for yet another stent in the hospital a reality check comes our way. His friend D 'Angelo dies.
The boys had just talked to each other and had some lunch. D was up and walking around . He had been there a couple of weeks before Marqus.
D told us he had just developed heart failure . I told him Marqus was diagnosed at arouund 4 years old with CHF congestive heart failure.
We planned to have a round table discussion about it when both boys were out.
Then I get a call from Marqus he calls me at work and says Mom D is dead.
I asked him over and over what what do you mean.
Marqus was sending a text so they could plan for later and go to the movies.
He thought D was at home. It turns out the nurse had went into the room to have D sign his discharge and he was dead!! 19 years old so proud of his new dorm room ,so proud but also so afraid of this horrible killer that stalks the body and kills it one little subtle piece at a time.
The killer without a voice the killer without a face without a ribbon the killer that everyone says OH I didnt know Sickle Cell does that!!!
I am grateful that Marqus was so sedated with pain meds that he did not hear the code blue.
We all cried so much. The hopsital took care of Marqus they sent the chapland I had him see psych.

I can not describe the pain I felt I began crying so hard at work I couldn't control myself. I know this was not my son but I can not really tell you about this pain.
I think I need psych. I feel like a cloud of gloom is hoving and I need a strong wind to blow it away. Everything but the business of survival seems trivial.
As mother's day approaches the overwhelming feeling to cry and cry and cry comes back. I cant fully explain this but I will try.

We carry our babies for nine months we know when by their cry they are hurt we look into their eyes and know something is wrong.
We can tell in their voice even over the phone that they are in pain or afraid or sick.

When they have that pain we feel it inside as well. we are moms until the day we take our last breath.

I could feel the sadness of the hospital staff . I am a nurse I have felt this as well when I lose a patient. I feel it now evertime I see a kid come back from Iraq injured sometimes beyond repair. Their moms bring them to the hospital.

I tell them I understand and I mean it . My sons disease is like war in is body. UNpredictable waiting to take his life.
.
Marqus always tells me if he wasnt ill he would be a solider . He would be a good one . Marqus has courage and he is strong.
He reminded me that D is in a better place with no more disease.

I put on my game face go out into the world and do what I have to do.
I think only my dog and cat really have all the details of how hard that is sometimes.
I dont bother folks with my pain they dont really want to hear all our troubles it is a burden and in todays world there are so many struggles.

We pray thats the way to get through.

Imagine.... pain so bad that there are not enough tears to cry. Pain so bad that dying may seem better. Pain that comes on sometimes without warning that has the sound of agony. Your tiny blood vessels are blocked circulation is begining to cease little by little each cell is dying little by little some organ is going to take a hit and fail . Little by little without help
without research, without hope you fade to black.

BREAK THE SICKLE CYCLE www.nih.gov educate all about the disease.
Please please please pass along this and all the other blogs.
Watch for our documentary SICK CELLS . The message has to be heard.
no more "OH? I didnt know sickle cell causes all that?"

Help US.
Thank You for listening