My Papa wrote me a wonderful letter and he gave me permission to share it. There are a few pieces I wanted to take out but Papa asked me to keep them in since the stuff I would take out was about me. Thank you Papa for letting me share!
Papa's Letter
My Dear Cretia
Twenty
four years ago you finally arrived. It
took mom and I quite some time to figure out how to get you here and the
longing anticipation was almost unbearable. But then, there you were and within
a twinkling of a moment, that moment when I first held you in my arms and
counted your fingers and toes…
1,2,3,4,5,6,7,8,9,10, perfect!…. well, I knew in that moment that life
would never be the same. Suddenly I was
the father of an angel. Sure, everyone
thinks that their child is the most precious angel ever sent to earth. But the thing is, no one else (except mom)
had the opportunity to have you in their life like I did, so they couldn’t
possibly know what I knew…. that you were truly the most amazing little girl
ever. We connected quickly you and I,
and even more quickly you seemed to understand that forever more, even your
most minimal of needs would quickly become my most important task. To say I was wrapped around your little
finger would be an understatement. You
were daddy’s little girl, but just as obvious and something you seemed to sense
and quickly learn how to manipulate….. was the fact that I was little girl’s
daddy. And ya know, I have always been
OK with that!
For the
sake of time, let’s jump forward 23 ½ years or so…. Wait, I must throw in a
couple of antidotes. First, it has never ceased to amaze me how someone so
active, fun loving, mischievous, and yes even naughty, could so easily morph
into this angelic being who deserves quick forgiveness and expects constant
benefit of the doubt! It always seemed
so easy to forget whatever it was you had done, and believe me, you done a
bunch….. and wrap you in my arms remembering the angel that you truly are. Something about that “little finger thing” ya
got going, I’m sure. Second, all little
children have grand ideas of what they want to be when they grow up. Common responses are: “The first Woman
President of the United States. A
Doctor. A Nurse. A Veterinarian,” etc. But you, you always had far greater goals and
aspirations – and you never wavered, it was always the same. When asked what you wanted to be when you
grew up you always, emphatically stated “I wanna be a Mommy!” You would say “I want to be just like Mom,
and have a bunch of kids, and I am going to love them and teach them
and……” “Mommy” was always your dream
job.
So 23 ½
years later, you finally got to begin your life long anticipated career. Little Bridger was born (and man that wasn’t
easy!)! But finally, this perfect little
bundle of joy came rushing into our hearts.
I remember thinking “wow! Parenthood is amazing but being a grandparent
has to be about as close as we get to Heaven on earth.” And to watch you and Jake step into your new
role as parents and manage them so admirably, well that’s a whole ‘nother level
of parental pride in my book. You guys
are simply amazing. But you know, it
didn’t surprise me. I’ve always known you
would be an awesome mom. And
Bridger? Well, that perfect little guy
suffered no lack of love and attention from the many uncles, aunts,
grandparents and friends. He wanted for
nothing and our whole world began with the words “where’s Bridger?” Talk about an exciting time. We’ve always been a very close, loving
family, but somehow this little dude managed to intensify this love to levels I
can only describe as exquisite. True joy!
But then….
As if
it is carved into my mind, I remember the day you handed Bridger to me and with
this deep look of concern and fear asked me a question for which I know you
already sensed the reply. “Papa, hold
Bridger. Do you think those muscle
spasms are something we need to be concerned about?” Spasms?
What are you talking about?
Within moments however, I knew.
Bridger suddenly tensed up, bent forward, and whimpered in obvious
discomfort. His eyes quivered back and
forth and his little hands clenched into tight little fists. It only lasted a few seconds and stopped. But then within moments another began, same
bodily reactions, same whimper and discomfort. This went on over and over for
about five minutes. I could hardly bear
to witness it. “No, this is not
normal. We need to get immediate medical
attention. It is something to be very
concerned about.” Little did we know….
The
next several weeks are detailed with raw emotion and perfect clarity in your
blog. I need not repeat the clinical
aspects as you have done so quite admirably, and quite frankly, you know them
far better than anyone. But what you may
not know are the thoughts and feelings that your Papa experienced. I’m sure others had similar rides, but I want
you to know what I felt, what I experienced, what I witnessed…… if for no other
reason than to know that though this has been a lonely, terrifying, helpless,
hopeless journey – you’ve never, nor will you ever travel it alone.
After
the initial diagnosis, and the fluffy, completely inadequate description of
what to expect (medical folks forget that this is “our” first time), I felt
some reassurance that this could all quickly be resolved. You know of my faith and trust in God. I had total faith that God would help our
little guy get through this quickly and this was just a little detour. For the first few weeks I just remained in
this little oblivious world, not wanting to believe that this was going to be
anything but over soon. But the seizures
continued and I watched as my perfect little grandson morphed into this pudgy,
sedated, non- responsive little dough-boy.
The steroids puffed him up like a balloon and he started to look like
the marshmallow man in that Ghost Busters movie. No more smiles. No more giggles. Hell, no more reaction at all except for the
occasional whimper expressing discomfort.
The poor little guy couldn’t even cry.
He just lay there, occasionally moaning.
I began to get frustrated with the slow response to the
medications. The seizures continued and
the still less than informative neurologists just kept throwing additional
medication at him. I couldn’t help but
feel that if the seizures didn’t kill him, the medication surely would.
In
desperation one night I finally decided to dig deeper. If the doctors weren’t going to save my
grandson then by damn, I was going to find a cure. That night I had a rude awakening. The research threw out words like “catastrophic,
mental retardation, possible autism, severe neurological deficit, decreased
life span, and if not controlled quickly, possible immediate death.” What the SWEAR WORD! I had no idea. I was devastated, and angry at the doctors
for not being more forthcoming with information. Turns out, this is such an odd disease that
there is no known “exact cure” for it.
The doctors were simply trying what had on occasion worked in the past. They just didn’t know for sure what the
correct response was. None-the-less, I
was ticked off. I came to find out that
you already knew all this and I was immediately ashamed of my frequent naïve
comments to you, telling you to keep the faith and assuring you that everything
was going to be alright. I felt deep
sadness, and pride, as I thought of the many times you just listened to my
naivety and instead of setting me straight with the facts, simply let me hold
onto my hope. You protected me. Even in the midst of your own fear and
sadness you protected me. I was
devastated by the thought that my little girl was likely in her most intense
time of need, and I did not provide the requisite, objective and supportive
response. I wasn’t there for you like I
should have been and that tore me up inside.
That night of research was a sleepless night. I spent so much of it in conversation with
God, and wish I could tell you that I handled that conversation with
Christ-like humility, but I didn’t. I
was mad to be honest.
I told
God that I knew He didn’t do this to Bridger (I just don’t buy off on the
concept of God doing such things); but that I also knew He could fix it if He
chose to. I reminded Him that we were
talking about Cretia here, our amazing angel of a daughter whose greatest
aspiration in life is to be a mommy.
“Did you know God, that she’s now saying that she should never give
birth again because the odds are high that future children will suffer the same
illness and she is not willing to take that risk? Did you know that God?” I asked Him “why, of all His daughters here
on earth, did Cretia have to be the one to deal with this? She’s our angel, God. No one would provide a happier life for
children than her. Please, just take
this burden from her.” To this point, it
hasn’t happened, but I’m still hopeful.
I think I am a little more realistic now though, than I once was.
As the
illness has continued and I’ve watched your anxiety increase and your weight
decrease (you’re getting dreadfully skinny sweetheart. Please eat)….. my
frustration multiplied. I’ve never lost
faith, but I’d be lying if I said I didn’t get a little angry and a lot
frustrated. The despair I’ve felt as
I’ve watched you, Jake, and Bridger suffer is sometimes overwhelming. It sucks to realize that there is very little
I can do for you. I can’t just hug you,
wipe the tears away, put a Band-Aid and a kiss on this and make it go
away. Papa’s (at least this Papa), are
not supposed to be helpless. When our
little ones come to us for help, we are supposed to be able to fix it! But sweetie, I can’t this time, even though I
really, really want to. I feel like I’ve
broken that trust you gave me the very first time I held you in my arms. I’m bawling my eyes out as I write this. Damn
this just really stinks! I am so, so sorry for your pain, Jake’s pain, and
sweet Bridger’s suffering.
I’ve
had a little time to reflect since writing that last little bit and I am a
little ashamed of my selfish reactions.
This isn’t about me, after all. I
even feel a little self-serving in just the writing of this letter. It is somewhat of a gratuitous, cathartic
reach at peace and explanation. I’m
hesitating on even giving it to you now.
There is some peace that comes in the expression of things, and perhaps
putting it in writing is adequate, without delivery of the actual letter to you. I don’t know.
I do know that the past week has brought a little more hope. The new medication that was started 9 days
ago has stopped the seizures and the process of titrating the other meds off
has begun. Yesterday Bridger was over to
our house while you were at work. When I
got home your little sister came running up to me and excitedly proclaimed that
“Bridger is smiling!” I anxiously ran
into the house for I have so longed to see his smiling face, and sure enough!
He was smiling. I even got him to giggle
a little bit! Talk about tender
mercies! This is exactly what I needed
and gives me such hope.
Regardless
of where this windy road takes you my dear daughter, you are not alone. I’ve no delusion that it’s all just going to
go away. There is much we still do not
know, and much that little Bridger has yet to endure, overcome, and live
through. I do strongly believe that all will
be well. As you know, we have experienced
many trials as a family, and the definition of “well” is often different than
what we might have had in mind. But I do
know without doubt that all will be well.
As a family we will do this thing together. I wish you could still be in our home
regularly as we live together, talk together, worship and pray together. Very rarely does a conversation exist that
doesn’t eventually include discussion of Bridger. There is never a prayer uttered that does not
include you, Jake, and Bridger. Many of
my own prayers have been about nothing but you, Jake and Bridger. You are deeply loved, and we are here for
you…… anytime and all the time.
And
finally, once again, I am very, very proud of you! Like I said earlier, I’ve always known you are
special. You have always been my little
princess and an angel here on earth. But
watching you gracefully endure this challenge with the love and patience of a
Saint, and the protective nature and tenacity of a lioness where necessary, has
validated my opinion, and surely secured your place among those most precious
and worthy of our Father’s presence. You
continue to amaze me and I love you with all of my heart. If it had to happen, I’m glad Bridger has you
to help him through it. No one could
love him more.
Papa
Thank you Papa for sharing and letting me share. It is amazing how deeply tragedy affects us yet brings us all so closely together. I've definitely got one incredible Papa :)
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