This is a question that was posed to me by a dear friend Thursday night.  It really made me think.  This friend of mine also happens to be a person I respect in ways she will never understand.  She is a mother who lost her baby girl years ago.  Her daughter was about Kyleigh’s age when she passed and I cannot begin to imagine how her heart must grieve every single day.   Also, seeing amazing women like her and like my other friend whose daughter is currently fighting a battle with Mitochondrial disease, sometimes makes me wonder what I did to get lucky enough to have a daughter who was SO sick and now is SO amazingly healed.  Some days I feel so unworthy of that miracle but I appreciate it no less.

So am I really HAPPY about this latest news?!  Well I guess I should tell you what that news is… Kyleigh does NOT have VACTERLS association linked to MITO.  We are at least 80% sure of that.  Which also means that Kyleigh’s VACTERLS is NOT “incompatible” with life.  Lamens terms… my daughter is going to LIVE!  This VACTERLS will not kill her.  She will grow up.  She will dance and date.  She will learn to drive and go to school.  She will get a college degree and get married and have children of her own.  And that brings instant tears to my eyes.  I am… so incredibly happy that it does not feel real to me.  For so long we lived with this big cloud of “what if” ?  Maybe a large part of me refuses to allow myself to FEEL the way I WANT to about it because every time I do the rug is pulled right out from under me and I end up broken all over again.  This huge part of me wants to jump for joy and tell everyone on earth but I manage to stay here with a quiet smile and reservation.  Somehow it’s like announcing this is saying that God worked some big miracle… which He TOTALLY did and I am thankful for it… but I hate to declare this big piece of news for fear that some day… all too soon… it will go away for one reason or another.  I want to keep this treasure all to myself because telling everyone feels like they are stealing little pieces of it and part of me must be SO selfish to want to keep it with me always.

Lets back this story up a bit and start a few months ago, probably about the time of the last post on this blog!  Kyleigh was experiencing increasing pain (and still is) and was having REAL trouble tolerating the heat of the Indian Summer in Kentucky (which I am sure is headed our away again all too fast).  A friend of mine said “You MUST go to the NIH and meet Dr. Ben.”  Yeah yeah yeah… I thought to myself.  How much more could he possibly tell me that we don’t already know about this kid?  I mean really.  I have become a bit jaded about the medical community.  I have this kid and she has all these problems and no one can fix them (completely) and no one knows WHY or HOW half of them happen… so WHAT’S the point?  I love our Doctors and nurses but I also go through phases of not wanting to have anything to do with ANY of it.  I have a “mommy fit” if you will and decide that the best thing for my kid is just to ignore this whole “sick kid” world and maybe it will all just go away.  But then, I try to assimilate into the “normal” world and it hurts all over again when I figure out that she (we) don’t fit in there either.  Those people just don’t get it.  They look at you with pity or disgust or worse yet, envy because your kid gets privileges that theirs doesn’t.  (I mean really… do you KNOW what my kid has been through???)  That in an of itself is painful and unjust and you just want to shield your child from it.  And then you wonder how on EARTH you can ever allow her fragile little self to go out and willingly be hurt by the critical stares and comments from unknowing people.  You work SO hard to protect her from all this and then everyone just wants you to willingly subject her to someone you KNOW will hurt and will not be easy?  Isn’t this what we have spent her whole life fighting against?  It’s HARD and it HURTS and I just want to sit and pout some days.  Some days I do just that.

So when I have these mood swings we just lay out of hospitals, research, and I hate to admit it but we hang back from our “sick kid” friends too.  That is where we have been and part of my ignoring this blog was ignoring everything on it, in it and surrounding it.  I started this because I needed to tell someone, anyone about Kyleigh and to relieve my mind of the million and one thoughts swirling through it… some days I just don’t have the energy or time to confront this whole thing all over again.

Fast forward to March 6th.  We got on a plane headed toward Baltimore to check in and be “studied” at the NIH.  Glad we went?  Absolutely… anyone with a VACTERLS kid should go do this study!  It really was informative.  It was, however, an intensely tiring week.  We had intended to go over into DC and sight see a bit but we never really did.  Mostly because I didn’t feel good, I was stressed out and my brain and ovaries hurt.  There I said it.  Me… I got in my own way.  Imagine that.  I guess somehow, no matter where we go, no matter what doctors we see, there is always this shred of hope inside you that someone is going to have a magic wand.  You know it’s not true and that the magic wand will likely never come but you still hope and pray that SOMEONE, SOMEDAY will know WHY these awful things happened to your child and most of all will know HOW to fix them.  Every time we go anywhere there will always be this shred of hope that magically she will be better and that all of this will just have been a big nightmare that we will wake up from.  Mostly, we never find that and that too… is hard.

After many scans, x-rays, lab work, ECHO, EKG, and many appointments with specialists, the week ended with GREAT news.  Kyleigh’s VACTERL’s diagnosis is NOT related to Mitochondrial disease which means that it is also NOT likely to be fatal.  This is a HUGE, amazing, wonderful, MIRACULOUS, relief!  I think I am still in shock.  With Kyleigh, we have learned to prepare for the worst, the most difficult, the least expected and often she does not fail to disappoint in those areas.  So every now and then, when you get something that is not even “less than bad” but AMAZING and AWESOME, it shocks you.  So that is where my head is right now.  Shock and happiness.  But the happiness is never untainted in our world.

With every bit of GOOD Kyleigh information, there is always the bad.  And THAT is why it is always so hard just to have your moment of excitement.  Because it is always laced with a million other things that need doing or are are going wrong.  The day before we left the NIH they started Kyleigh on Neurontin.  This is a medication that works with the nerves in your body to help relieve pain.  In 2-3% of patients it is shown to cause diarrhea.  Guess what percent my kid falls into?  imagine that.  She was SO sick all the way home I felt really bad for her.  I had had the instinct just to WAIT until we were home… I should have listened.

So we got to haul through two airports, pooping all the way!  The problem with diarrhea for Ky is that she STAYS borderline dehydrated anyhow… so any little thing like pooping 11 times in 4 hours, puts her over the edge.  Oiy vey… try to fix one thing, break another or two… story of her life.  So now we are home and trying to make SURE it is the Neurontin that caused it and not some random thing she picked up at the hospital.  Today we will start the Neurontin again and see how that goes.

The other news is that Kyleigh’s C-spine is quite messy as well as her T-spine.  We also knew she had improper vertebrae in the T-spine, missing, fused, messed up whatever you want to say but it “ain’t right” is what I do know!  This will make her more prone to scoliosis and back pain.  So we have to watch that but overall this is not a life altering or threatening thing so we cannot complain!

The next thing, and this is rather huge in my book, is that it looks as if, on the ECHO from the NIH, that Kyleigh’s heart patch (a la her first open heart surgery of 2007) has sprung a few leaks.  There is one obvious one but on the ECHO the patch itself is starting to look a little like cheesecloth with tiny leaks all over.  Now, this IS something that we were prepared for.  We knew that she may likely need a “revision” to her heart between the ages of 6-10 but she is only 4.   This is early.  I was not prepared for that.  I was also not prepared for finding out that the ONE part of her body that has been doing GREAT is now malfunctioning AGAIN.  And heart stuff… is scary.  Let’s face it.  Last time I was blindsided and had no idea that I SHOULD be scared.  This time will be worse.  I know what is coming and I know what can happen.  This time I will need more prayers, more drugs and more therapy to make it through should she need another open heart procedure.  We are scheduled to see her cardiologist at 10:30 am to get a verdict on whether we should head off to see Dr. Eghtesady again (this is Kyleigh’s amazing and wonderful Cardiothoracic surgeon in Cincinnati!).  As much as I love the guy… I would much rather keep my butt here at home because as I said before… I am still in the middle of my “mommy fit”.

At any rate.  I am beside myself with happiness.  Anything that does not = death is truly a blessing and a miracle.  At the same time my brain swims in it’s memories of those horrendous weeks spent in the CICU and the pain that Kyleigh was in.  My heart aches knowing that she may have to be up against that AGAIN and that she, again, doesn’t even know it’s coming.  My arms already ache for those hours that she will be lying on that cold OR table and my nerves are already stretched thinly as they can be.

A huge part of me mourns for the life that is continually stolen from my daughter over and over again.  Another part of my is thankful and a large part of me is just as scared as the day we brought her home.  Somehow, even though I have read the guidebooks and own the maps, I am still not used to Holland.  I notice that even the tulips die and that there are more rainy days than sunny ones.  I still long to go to Paris (funny considering Kyleigh’s new bedroom theme!) and I wonder if that stinging pain of that loss will ever go away… sigh.

Say a prayer tomorrow morning if you will.

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