The CCHS Fairy

As you all know, Mighty Z has CCHS (Congenital CentralHypoventilation Syndrome), and since CCHS is a neurological disorder, it affects every aspect of Mighty Z’s body. Simply put, many of the neurons in Mighty Z have repeated, haven’t matured like they are supposed too, and are not going to do the tasks that they are meant to do.

 

Because of that, sometimes Mighty Z’s neurons spark and do the task that they supposed to do and sometimes they don’t. It is almost like faulty wiring in a house.  Sometimes the lights flicker, sometimes they don’t turn on at all, and sometimes every light in the house works. It all depends on the day.

 

The CCHS fairy likes to fly around and strike at any moment.  Just last week we had a beautiful five year old with CCHS running around playing and then all of the sudden her heart stopped and she just dropped like a rock and died. CCHS is a very unforgiving disease.  It comes like a thief in the night with no warning, slinking in just when you think all is well and whacking you when you least expect it. 

 

Mighty Z started passing out in September. First I thought it was some vitamins I was giving her, then I thought it was a medication she was on, and then I realized it was something much more serious.  Mighty Z had been passing out, but she was on her breathing pacers, so at least I knew something was breathing for her. I wasn’t too freaked out until she passed out at school off her breathing pacers. Of course I thought her heart was pausing, a common issue with CCHS.  All I needed to do was have a cardiac pacer implanted and then all would have been fine. However, it wasn’t Mighty Z’s heart: it was something much more sneaky than that.  It was discovered that Mighty Z also has Hirschsprung's Disease.

 

Hirschsprung's is most often diagnosed within the first week after birth.  However, some individuals are diagnosed later in childhood or as adults, though they have had chronic problems their whole lives.  Symptoms of Hirschsprung's include constipation, abdominal distension, vomiting, decreased appetite, cramping, and failure to thrive.

 

How did we miss this? I have no idea; all I can conclude is that I have always known that Mighty Z had sluggish bowels, and her doctors have known this too, but never felt it was an issue. I think we were all so focused on the fact that Mighty Z didn’t breathe on her own at night that her bowels seemed insignificant.

 

If you don’t treat Hirschsprung's disease, stool can fill up the large intestine. This can cause serious problems like infection, bursting of the colon, and ultimately death.  So what do we do for Mighty Z?  What are our options? We are hoping for a pull-through which involves taking out the part of the intestine that doesn't work and connecting the leftover healthy part to the anus. After a pull-through surgery, Mighty Z would have a working intestine.

 

However, we are preparing ourselves for a colostomy or ileostomy. A colostomy surgery is where the doctor leaves part of the large intestine and connects that to a stoma (open hole). Mighty Z would have a colostomy bag. An ileostomy surgery is when the doctor removes the entire large intestine and connects the small intestine to a stoma (open hole).  Mighty Z would have an ostomy bag.

 

I am heartbroken. I know that this is just a bump in the CCHS road; however, I was hoping that the Hirschsprung's  cup would pass my lips.

 

We meet with surgeons next week to discuss our options; we are asking for prayers for peace and knowledge to make the right yet difficult decision on how to keep Mighty Z alive and healthy.

                                      Sweet Mighty Z waiting for another specialist to come in

 Edited by Emily Minich

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The Well

The problem with special needs parents (me included) is that we desperately want to live a normal life, to fit into society.  It’s not so much the normal we crave, but the fact that no one understands the pain and the hopelessness we feel. No one understands the strength, the determination, and the fight we, as parents of a special needs child, must face on a daily basis.



Special needs moms are so alone and we try so hard to wear a brave face at all times, yet in our own minds we are not as brave as we appear to the world.   Let me describe it this way…It is like we are in the bottom of a very dark Well. At first we don't want to get out because it is too hard to climb. We want to resist the fact that our child has something wrong with them. I remember when Mighty Z was in the NICU…in the beginning I didn’t want to associate with the other parents, simply because I didn’t want to belong to the special needs sorority of mothers. When I go up to the NICU now, that is the same reaction I get from the new moms. They say, “I didn’t want to call you because I didn’t want my baby to be trached and I was hoping this would all be okay.” That, my friends, is when we are at the bottom of that dark Well and we just want to sit there for awhile, to believe, and hope, that we will not have to buy the special needs awareness T-shirt.  



Finally, when we start to accept this journey, and we want to start climbing, we are already so weak from sitting at the bottom of the Well in all of the muck and mire, that we can’t even get half way up out of the Well before we keep sliding back down, landing with a great big plop in a heap of tears and pain. But this time, when we are sitting at the bottom, we feel so alone we want to get out of the Well, but we have no idea how to start to climb up and out. We try again -- digging our fingers into the sides of the Well, breaking finger nails, sweating, straining, and begging to get out, only to slide down once more.



This is when one of two things happens. We either slowly and painfully climb out of that Well by ourselves, or a seasoned  special needs mom that has been walking this road for years, stops to  throw down a rope or a ladder and helps to pull us out and starts to teach us how to navigate this new normal journey that we have been thrust to travel down.



I had to climb out of my well by myself and it took years to reach the top.  I navigated how to walk down this hard road by myself with no map, no compass, and no translation book. I got lost along the way, having to double back many times, and I certainly didn’t know this new language of medical terms. Everyday I would have to go home and translate the day’s conversations.

 I think it is up to us as the older (or more seasoned) special needs moms to help the new special needs moms. To give them the maps, the compasses and the translation books. We need to help pave the way, to shine the light – to throw down the rope-- because we all know that a simple rope to help to climb out of the Well is priceless.



The seasoned special needs moms have to teach that this “new normal” is just a different place. It's slower-paced than the old normal world. It may be less flashy this new normal, but after you've been there for a while and you catch your breath, you look around... and you begin to notice that this new normal is full of beautiful smiles, inch-stones instead of mile-stones…it’s filled witha sense of pride and accomplishment that few children feel at such a young age, and maybe most importantly, the deepest love most humans will never feel.



 But... if you spend your life mourning the fact that you didn't get to be in that old normal world, you may never be free enough to enjoy the very special, the very lovely things  about this new normal world that your little miracle opened your eyes to see and experience.

edited by Linda Kruger

01 02 12

A Very NICU Christmas

The reasons I started this blog was 1) to share Mighty Z’s Story 2) To tell you the uncensored  truth of the ups, downs and in-betweens of raising one typical child, and one complex medically fragile chronically ill child. 3) I deeply feel that much has been given to me (in regards to my children, and the journey we are on) and because much is now required of me to give back (Luke 12: 48).

 

Many of you are the ones that truly inspire me to be a better wife, mother, and person. Even ladies who have typical children have stepped in, and shown support in ways that still shock me. My sweet friend takes time when she isn’t working and caring for her own children to edit and pull out of me things that I have buried so deep (trying to protect myself) so that all of you in the special needs world know you’re not alone.

 

One of my dreams has been to make a community of special needs families. I have tried and tried to do this on my own, but it always fell through (Gods timing is indeed perfect). When the group Mommies of Miracles contacted me and wanted me to be the administrator of Texas Mommies of Miracles I was overcome with joy and awe that they would choose me.

 

I was once again scared that this would fall through, but with the help of Mommies of Miracles the Texas branch begin to grow. I have never met so many women who are strong, wise, intelligent, and above all compassionate. These women make me proud to be in this elite sorority of special needs mommies.

 

I had an idea (that I stole from the Ohio Mommies of Miracles group) to bring bagels and cookies to the NICU (neonatal intensive care unit). I threw this idea to our Texas Mommies of Miracle’s. Even though these mothers have children on life support machines, feeding tubes, have seizures, are paralyzed, and other very hard issues. They pulled together and made and bought cookies, bagels, and even bows for the babies to the parents in the NICU at Children’s Medical Center Dallas. Some were not able to come so they dropped off toiletries to other mothers they may never meet.

 

This is the Elite Sorority I belong too, and I am proud to stand next to every one of them.

 

                                                        Merry Christmas My sweet friends

 

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