To our friends and family who have all been
so supportive,
Here's just an example of the power of prayer
in my own life...most of you know us and our family...we have been on a roller coaster ride with Madison, our baby daughter.
Her delays and hypotonia (no diagnosis yet) have controlled the last six months of our life and today we celebrate her life...
on her first birthday!
Most of you are aware of the bad test results
we recently received, last week...all indications point to a mitochondrial or metabolic disorder. Our hope is that the
tests were done wrong and we are in the process of having them all rerun. Needless to say our faith and optimism have
been tested over and over again. Our poor mustard seed has been widdled away!
Anyhow, in light of the recent results we
have been pretty down and out. The idea of our little girl not having a "normal" life really has scared us...so this
brings me to the point of my email.
Faith...as defined in our Webster's Dictionary...means
trust, confidence - complete acceptance of a truth with cannot be demonstrated or proved by the process of logical thought
- the virtue by which a Christian believes in the revealed truths of God. It is definitely something our family has
been losing little by little...that is until Wednesday afternoon.
Wednesday afternoon restored something in
me that was just about lost. My faith came gushing back in a moment of complete and utter exhaustion. I had been
up most of the night tossing and turning (like I've done for many weeks), destroying all my dreams for Madison...realizing
what type of reality we could be facing. Reading anything and everything about Mitochondrial diseases and comparing
them with the array of bad results we received within the past 10 days. Much worse than I could ever imagine, but yet
somehow SHE is PERFECT!
Anyhow, my story....begins about 6 months
ago....with the acknowledgement that Madison had some sort of developmental delay / low muscle tone problem. It has
been a long hard 6 months, realizing how very delayed she is....others don't seem to understand...they can't believe she is
a year old and can't sit, stand, etc. I feel like I am constantly making an excuse for her. I feel like I am being
judged as a bad mother if I don't offer strangers a medical explanation. Needless to say, my prayers began even before
we officially knew she had a problem. I would pray that she was only taking her time..."MADDIE's TIME" Once physical
therapy started, my prayers began to change...I began setting goals with them "Oh Jesus, just let her stand by her first birthday
and I can deal with this situation much better".
As Madison's first birthday grew closer, my
prayers would change again, I began to compromise them...."OK Jesus maybe standing was a stretch, I will be able to deal with
her problems if she can at least crawl". Realizing...as March steadily approached....crawling wasn't going to be possible...I
completely changed my prayer again..."Oh please, just let her be able to sit for her birthday picture"...then it was, "Oh
Jesus, I'll just be happy if she starts to roll on regular basis (something she had done far and few between in the last 6
months)". Truth is that no matter what, I really wasn't ever going to be happy unless my baby girl was just "normal",
but what exactly is "normal"? Society has instilled this ideal of what is normal and I felt like a failure because Madison
wasn't included in that. I would tell people..."she has some problems...she's not developing like a normal baby".
Truth was that with all the blessings
I had been given...I still wanted more...every negative test result, every little milestone Madison met...I still wanted
MORE! Sure I was grateful, sure I celebrated those milestones but in the back of my mind I still just cried for more,
for "normalcy" I couldn't just be happy with her progress under "MADDIE's TIME". I wanted normal progress, I wanted
a normal life for her, I wanted a normal life for me...no doctors, no therapies and above all no more tests!
Well coming along with my story...10 days
ago...we got a phone call. One that blew our world away...hearing the doctor tell us that we might be dealing
with something pretty bad and Madison's prognosis may not be good. Wow! I certainly began to appreciate all those
negative results we received BEFORE, all the grace we had been given BEFORE! In an instant Madison's lack
of milestones were no longer an issue.
I often imagined what it would be like to
have a phone call like this...one that would destroy us. I've seen many of my online support group family
get BAD news and in my mind I always thought...that could be me...that could be us! At any given moment we could
get that call. It never was! NEVER...until 10 days ago...when my life felt shattered. "Mrs. Rabush", they said
"Madison may have a mitochondrial / metabolic disease"...I only heard bits and pieces from then on out. Worst case they
said "she could die" Best case "perhaps they were false readings, we'll retest"..."she may need a muscle biopsy"..."I don't
know why you are so upset...we talked about this as a possibility"...back in January!!
Prepared...I thought I would be...Prepared...I
don't think any one could be! A lot to swallow over night...absolutely! Did my prayer change again...most
certainly..."Dear Jesus...you gave me this precious girl to love...please don't take her from me...please let me see her smile
each and every day...Thank you for her beautiful smile, thank you for choosing her to be with us" All that little stuff
didn't matter, what mattered was here and now, what mattered was that Madison can smile at me and I feel her love, what matters
is that I can tell she loves us and loves her life, what matters is that we love her more than words can even express, what
matters is that she doesn't care that she couldn't roll, sit or stand...she's just happy being herself. She is our gift,
her purpose may be unknown but she is our gift. She has taught us so many things in her short life...so much more than
anything I've been taught in college, at work, or in a "normal life". She is the greatest blessing we've ever
been given and am I just realizing it now? Couldn't be!?
Needless to say we have had a rough 10 days
so on this past Wednesday (2 days before her big day) - I'm sitting on the couch watching her play on the floor. Normally,
I am with her there on the floor but I was feeling sorry for myself...wondering why we deserve this? Wondering why Madison?
Why does she have to suffer? Wondering about her future...AGAIN! She's looking up at me (on her back) smiling, when she
proceeds to roll over (back to belly something she has only done once before with help - heck she hasn't even rolled from
belly to back, except for a handful of times). Now...she's on her belly looking up at me giggling...like a pro...as
if to say "It's all going to be fine, I'm going to be OK...stop worrying!" So...as if to test her or God (I don't know
who I was really testing)...I flip her back over on her back and a few seconds later she does it again! and again! and again!
Of course, now I'm crying on my knees...thanking Jesus and calling my husband, Scott. I can tell by Scott's voice how
happy he is...this week has actually got him down...he has been the one who has held me together. Telling
me always that she'll be fine...he just somehow knows it? Could it be my husband had more faith than me? He doesn't
even go to church...he knows nothing about having faith!
Madison has been rolling and rolling
and rolling...every day since Wednesday afternoon 2pm. It's the most amazing thing I've ever seen, her big, bright blue
eyes, her big smile...the laughter and excitement she has doing it! Time and time again I put her down...she begins to roll...across
the floor. A mothers dream come true...an answered prayer...yes and before her first birthday no less. Is "he"
in control or what? Does "he" know how and when to answer prayers? ABSOLUTELY...couldn't be any truer than seeing
my one year old finally roll regularly! My faith...restored...OH YES!
Of course, we still have Maddie's pending
retest...and more and more waiting, but somehow all the little milestones just don't seem so important anymore. I know
we have "him" on our side. Accepting his plan for Madison hasn't been easy but I'd never change it, nor do I wish it
to be changed. She is who she is and SHE IS the most beautiful little girl ever that didn't change with some bad test
result and won't change ever! The best part is...she is OUR beautiful little girl. As for my faith and prayers...so
different now...they went from the I wants and I needs to BIG THANK YOU! He ultimately knows what I want and what I
need and he'll get us there on "JESUS TIME". So now we have "MADDIE's TIME" and "JESUS TIME" and together I think our
family will just prosper!
Moral of this TRUE story...even my unimportant,
compromised prayer...was answered! And "he" even gave it to us before her first birthday. God is Good!! Please
take it from me...don't ever let go of your faith! One of the most important things we have as Christians is...our faith!
Life is good...I'm going to go and roll some
more with my baby girl! If you've read this far...please pass this along to someone who needs a lift!! God
Bless and Happy Easter! Thank you again for all of your prayers!
Love,
The Rabush Family
PS. Watch out world Maddie's moving now!!!
