When will it ever end or when will enough ever be
enough?! We try to make sense of
all that she has suffered and all that she continues to endure and we feel like
no one ever hears our plea to make it stop, to let her enjoy what life she has,
to allow us to move forward and feel happy. It seems whatever forces working against her and our family
only seem to seize for brief moments of time until another wave comes and beats
us down. She proves her strength,
we pick up the pieces and regain strength to only have another blow knock us
down. Yes, she is better but it
depletes us each time there is a setback, and there have been many.
We just recently found out that Chloe’s immune system is
somewhat deficient and we are working with an immunologist to find out how to
boost the antibodies that her body lacks.
While in Cornell early September, it was advised by her team that we run
further bloodwork to investigate the reason why Chloe has now had two serious
blood infections. It turns out
that she has very little to no antibodies for three viruses that each child is
vaccinated – Dtap, HIB and meningitis.
Upon these findings, we immediately re-administered her vaccinations and
hope that this will jump start her system and start to produce the antibodies
she desperately needs. We are
unsure if she ever produced these antibodies or if this was the reason why she
was infected with bacterial meningitis.
Babies are protected for the first 5 or 6 months from the antibodies
received through the placenta via the mother. After this period, it is up to the individual’s body to
produce its own protection. In
Chloe’s case, we are unsure her body ever provided her the protection she
needed.
Finding out this news was helpful in giving us some answers but
was obviously devastating at the same time. As a parent, you do everything you can to protect your child
– you follow your instincts, you read books, you follow doctor
recommendations. We vaccinated
her, we brought her to well baby visits, we read and researched (too) many baby
books and still we could not protect her completely. Part of my heart ached knowing that I only nursed Chloe for
a month and I felt that immediate sense of guilt rushing back. There were circumstances that prevented
me from nursing longer but if I had, would she have been more protected? Guilt is the worse thing any parent can
have in situations of having a sick child so this made me ill.
It is still hard to completely accept that fact that there
was nothing we could have done to foresee any of Chloe’s suffering. This is why it is so hard when people,
even ones closest to us, continue to say things like – ‘why did this happen,
why didn’t you bring her to the doctor, didn’t you see it coming?’ I know there are people out there who
think, ‘how could they not have known? or how could they not have done more? or
why did it take it so long for them to see? or why don’t these parents fight
more, pray more, do more, work harder?’ I see some people look at me with their
pity and it makes my blood boil.
We would do ANYTHING for our girls and the new baby. We have suffered
and sacrificed so much than we could ever explain to others. Many of you support us and hear us when
we share our cries and we are grateful for those who understand and sympathize,
not pity. You will never know the
value of those moments of sympathy and empathy you genuinely share with us and
that’s what makes us fight even harder.
Tomorrow we will celebrate Chloe’s three year mark of
surviving her meningitis. We had a
quiet and peaceful weekend planned so that Chloe would come home and we could
enjoy some real family time at home.
Unfortunately, we once again had a delay in our plan. I sobbed yesterday as I ran out of
Chloe’s room in Sunshine and fell into a chair, screaming one word,
“Enough!” Reth, Olivia and I had
driven to Ossining with such high hopes to bring Chloe home. There haven’t been many visits home
this summer or even for Olivia’s bday because Chloe was sick or was exposed to
and potentially carried germs of other viruses from the hospital children. This would have been her first visit
home in a long time and we were ecstatic, especially Olivia. As we packed her bags, we found out
that she had been started on another antibiotic this past Thursday that we had
not yet been told about.
Apparently, one of her caregivers had woken up ill, and after an ER
visit received a positive result for strep. With Chloe’s immune system already compromised, she was
immediately put on an antibiotic prophylactically. As we prepared to leave, a nurse urgently came into her room
telling me to put on a gown and mask and escort Olivia away from her sister as
the final results of a throat culture came back positive for Group A Strep.
Pushing my way past the nurses, I left the room with
devastation. Explicit directions
were given that extra precautions needed to be taken around Chloe until we
figured out how to improve her immune system, so why would they let someone who
works with 20+ children in the hospital be in direct contact with her? We don’t want Chloe to live in a bubble
and be on contact isolation forever but until we have more answers, people who
feel even the slightest compromise in their own health should not be taking
care of her and spreading their germs.
Almost 8 months pregnant and having Olivia at risk was not an option and
we decided to let her finish 48 hours of antibiotics before trying to take her
home so we left with tears, frustration and defeat.
What will it take for us to have some sort of normalcy? Is it so wrong that we want her to be
as healthy as she can be at this point?
Hasn’t she been put through enough? Is it selfish that I want my family
to move forward and be able to enjoy life? When… when will I ever feel that our
life is somewhat back on track? After Chloe got sick, we knew our life would
never return to the way that it was and we expected a long road and have dealt
with those ups and downs but why can’t we also have time to enjoy? I don’t mean to make it sound like
everything has been so bad but times have been difficult. There’s no sense in complaining about
it when people ask so we sugarcoat and work it out but of course, there are
days and months that are just a mess!!
In reality, many of our dreams have been put on hold – our
careers, our dream home, our adventures.
It’s not easy realizing that your life somewhat stopped when a
devastating experience happened, but ours did. Like I said, we’ve picked up pieces and regained strength time
and time again but the effects are forever in our hearts and impact our
everyday life, along with our hopes and dreams. Everything and everyone else moved forward after October
2009 but we have, in many ways, felt stuck. Even with the upcoming excitement of a new baby, a new life and
love coming into our lives, it is still difficult. Making room for baby#3 brings a sense of moving forward and
a great feeling of love and strength but it is scary and emotional. Creating a place where Chloe used to
sleep, emptying her drawers to make room for her brother’s things, unpacking
her old stroller where she last sat and had her last smiling picture three days
before she fell ill, the toys that she never relearned to use, the books she
never reached out for again, the seat where she would playfully beg for more
and more food, the swing where she last sat before rushing her to the ER three
years ago and where she last smiled. Of course there are new things we bought
for the baby and we will make new memories, happy ones for sure, but we can
never forget or push aside what has happened.
There will always be a place in our apartment for Chloe to
come home. She will always be
there and with us regardless of the fact that she sleeps and is cared for in
another home. She is the reason
why we know how to love so much, and she taught me to be the mother that I have
become. She is the one who
inspires us and gives us strength to move forward everyday. She is why we have learned to fight so
hard, to advocate and use our voices.
She is never far from our hearts, our minds, our beings.
Tonight, Chloe and Olivia will have their long awaited
sleepover and it will be joyous.
Tomorrow we will have our family day and enjoy. We will not think about her sufferings
but celebrate her fight. It took
us awhile to get her out today but Reth just carried her to the car as she
winced as the cool autumn air touched her face and smiled as we pulled away
from her nursing home. I finish
this blog as we drive home with her in her car seat, kicking the back of my
chair, happily sucking on her finger and sitting next to her sister. The way it should be…
Much love,
No comments:
Post a Comment