Despite the title,
I promise this is not a politically minded post. I borrowed our President’s phrase only
because I love the concept behind it that it takes fortitude and courage to
hold onto hope, especially when evidence and logic can make it feel foolish at
times.
To quote a wiser
source, the Bible says “these three remain:
faith, hope and love. But the
greatest of these is love.”
I’m really
grateful that the greatest is love and not hope. Because for me, love is so much easier than
hope. In all that we have been through,
my ability to love has only been amplified.
My children have taught me the depths of love and all that they have
been through has only made my love for them fiercer. I have grown to love our families more deeply
as they have stepped in and helped us in amazing ways. I have fallen in love with some of the
nurses, therapists and doctors who have taken care of my kids and taken care of
us. For all the difficult times, my
heart has only stretched to love more people more intensely.
Faith admittedly
has, at times, been more difficult. But,
I have reached a point now where new trials do not challenge my faith
anymore. I have come to peace with the
eternally impossible question of ‘why do bad things happen to good people?’ (to
be clear I ask that not implying that I am the good undeserving person but
instead looking at my completely innocent children who have suffered). I am not going to tell you I have the
answers. But I am at peace that tragic
things have happened to my children but that God is still good. And He has a plan. One that does not always make sense to
me. But that is ultimately for His
good. I have learned that my faith is
necessary to sustain me. I need to
believe in God. I need to hold fast to
the glory of Heaven and the knowledge that this is but a temporary home. It hasn’t been an easy journey but I can say
that through the trials, my faith has strengthened.
And then there is
hope. Hope is the hardest. Particularly lately. Honestly I will tell you that since Max went
into respiratory distress in November, I have been struggling with my attitude and perspective. Mainly, I have been
struggling with a feeling of my hope fading.
For me, hope has always been the belief that better times are
ahead. That this road will become
easier, that my children will get better, and that life will settle into a
sense of stability. In stages, that hope
has been essential and it has sustained Al and I. Our absolute hope that transplant would be
the turning point and the delivery of health to our kids and happiness for our
family got us through the first two years.
And it provided us with the necessary motivation to get the kids
transplanted, when it was an arduous process. And that hope only grew so much stronger
after Addie’s transplant and she really did amaze us with her turnaround. We hoped that the effect for Max would be
similar and that we would reach what I called our ‘new normal’ and that even though their developmental delays and disabilities would
continue to be a challenge, life would be steady and they would be healthy and
happy.
It is not a hope
we quickly abandoned either. I am proud
of Al and I for how stubbornly we kept believing the worst was past and things
were going to turn around. Transplant
was difficult for Max but when he came home from the hospital after nearly 7
weeks, I wrote enthusiastically about our Happily Ever After on my blog. We were excited, even after he had a lot of
hospitalizations afterwards. Our summer
was eventful with Max’s rejection issue and new neurological symptoms. But that did not stop me from writing on my
blog about my fresh start this school year and how it was going to be a smooth
year without major dramas or surgeries.
When I did my 13 presentations for the students at my school, I said
with confidence that the major medical issues were in the past now.
And then that
night, Max took his first ambulance ride.
And I stopped believing that the worst was past. Since then, it’s been a
huge adjustment to the reality that Max has taken a turn for the worse with his
breathing and that we would need major changes at home, including nursing
support, a Bipap machine and many other forms of breathing treatments. In addition to the respiratory issues, Max
has had bad luck and ended up with an infected port- twice and now a clot in
the line where the port was, requiring blood thinner shots and probably a month
of IV antibiotics. We have had difficult
conversations about what we will do if the Bipap ceases to be enough, we have
contemplated the unimaginable. It’s been
pretty awful honestly.
And along the way
in the past three months, I stopped hoping things were going to settle down and
that we could still end up with our healthy and happily ever after. Partly it was just an emotional reaction to
what was happening. And in part, it has
been deliberate. Hope hurts when it
doesn’t deliver. I have felt such frustration that I really thought we were
past these frequent hospital trips and now we are back. Because I so genuinely hoped for better, the
reality has been especially difficult to swallow. So during Max’s January admission, I just
resigned myself that this is how it is going to be. I decided that if I stopped hoping for
different, it would be easier. The
doctor tells me ‘he may make it home Friday, otherwise I am on this weekend’
and I reply with ‘Ok, I’ll see you Saturday.’
I say ‘see you next time around’ to our nurses and doctors because it
just felt logical and emotionally safer to assume that is how it will be. Then, when next time comes, it won’t involve
that shock, that contradiction to expectations.
I let myself stop
hoping. But in the past few days, I have
thankfully recognized that was wrong of me.
After all, the Bible commands us to have hope. And we need hope. Because I haven’t been happier since decided
this is how it is. I’ve actually found
it discouraging to think like that. And
I don’t want to become jaded. Even if it
would be understandable… Even if, on
some level, it might be emotionally safer…
Even if, frankly, it just feels more logical. Despite all that, I want to keep being a
hopeful person. I want to keep believing
that the tides are turning soon! I want
to think that we will now have a nice long uneventful stretch. And I want to raise hopeful children. I don’t want to let them become cynical or defeated or accept a lower level of
joy in exchange for a reduced risk of disappointment.
So, my goal for
myself at the moment is to hope again.
To have the courage, the audacity, to hold fast to the hope that we will
not be in the hospital again any time to soon.
To look forward to a nice long stretch with my family all together at
home. To believe that between the Bipap
and the port being out, that we really could be free from the need for
hospitalizations for a while. To not let
the nagging fear of ‘what next’ consume me.
To not be on the look out for the other shoe about to drop. My goal for today, and for each day is to
risk the tears and discouragement to experience the joy of hope.
So last night we
celebrated. We had a huge dinner. We smiled and laughed and were so happy. We celebrated Max being home and we didn’t
talk about ‘next time’ or how long. We
celebrated him being back with a hope that is a permanent return. We embraced the hope and it felt so healing
and the joy so refreshing.
--Coming Soon on my blog-- I have been writing a book about the first
two years of our journey (through Max’s transplant). I am about 9 chapters in but keep getting
stumped with the motivation and energy to keep writing. So, I have decided I’m going to publish a
chapter every Sunday starting next Sunday on my blog until I finish it. I’d love to one day try and get it published
but right now I just want to get it written and I figure publishing as a I go
will give me motivation and a chance for anyone interested to read along
with! So stay tuned next week for the
start of my book…
