If I had only one word to describe our experiences over the
past 6 months of this journey, I’d have to say “humbling”. We’ve been brought to our knees for different
reasons along this path – and through this, have learned so much about ourselves
and our relationships. I’ve never been
through anything that made me feel more vulnerable (and helpless at times) before.
While it can be painful, it’s also refreshing sometimes.
Medically and physically, we’re amazed every day by the
things that we have to teach Ellie… or that she’s just not able to do - things that were
100% natural for our boys. Ellie didn’t
come with the coordination it takes to breathe and eat at the same time. While she was able to suckle, she didn’t have
the strength to draw back using her tongue and improvised while she ate (smart
cookie). We’ve spent a lot of time with
speech therapists working on pacing her as she ate and helping her learn to use
her tongue to draw milk out. With our
boys, I remember nursing them through the night. This was stressful because (like all new
parents) it required much less sleep than I’d become accustom to. However, with the boys, I totally took for
granted the fact that I could lay them next to me and nurse them… usually
falling asleep in the process and waking up later to a sleeping baby with a
full tummy. I dozed off Saturday night
while gavage feeding Ellie and spilled milk all over myself and my bed… and may
or may not have said a bad word in the process.
Later that night, Ellie was really upset and kicking around while I was
feeding her. She kicked over the pump
full of expressed milk (again… maybe a bad word escaped my lips here). And somehow in her fit, her little monkey
toes snagged her feeding tube and ripped it off of the syringe holding her
milk. Again, a couple of ounces of
fortified milk spilled all over our bed and me.
Oh the smell of formula on linens… mixed with breast milk… which is
sticky when it dries on your skin. Ick!
There are scary things that come along with this too. For our boys, if they were to get sick, they
could vomit… it wasn’t fun, and it still sends a new mom frantically
reaching over to flip over her baby… but with Ellie, she’s a little more
helpless. She used to be completely
silent when she started getting sick.
She’d silently gag (and retract big time), then milk would start oozing
out of her nose. Her airway was
completely blocked, but she didn’t have the muscle tone to cough and clear her
throat. Now, she’s strong enough to gag
and make this horrible sound. Again - humbled
when I realized that I was celebrating the fact that my baby was now strong
enough to audibly gag and cough. Silly,
right? The struggles aside, I have no
doubt that this little booger is going to conquer each obstacle in her path…
even if she has to try 10 times harder than her peers to do so… I just see that
fight in her every day and I know this to be true. I’m just amazed at all of the things that we
never thought of before that can be monumental tasks for Ellie.
The boys love to help out - here Kaleb is offering Ellie her bottle on 10/13
And if one helps, the other has to, too.
I know she's upset here... but I think she's channeling her inner 2Pac
(I just dated myself there, didn't I?)
One of the most humbling experiences we’ve had is learning
when to ask for help. Fortunately, we
have friends and family that have offered so much support along the way. We don’t always have to ask… sometimes people
just act, and that’s amazing. I tend to
be proud (B is even more so), so when people have asked to help out in the
past, I’ve usually thanked them and told them I’d let them know if I needed
anything. I still do that some, but only
when things really are in order. I had
to come to a point where I said, “Okay, when I offer to help someone out, I
really mean it… I’m not just being polite.
I usually want some kind of task.”
So when someone says, “let me pick something up for you” or “I can get
your boys” or “can we pray for you”… I’m learning to accept the offers to help
and be grateful. Pride can get us in a
lot of trouble, right? I don’t know what
we’d do without those who have pitched in to help with our boys, or with a
meal, or sent cards or notes to us, offered hugs and prayers, or any number of
other things. We truly do appreciate all
of this!! As much as it pains me to
admit that we are far from having it “together”, it’s also heartwarming and I’m
so relieved when burdens are lifted for us.
We know that we absolutely could NOT do this without your support, and
we’re humbled by your love.
I’ve also been very humbled in my relationship with my
husband lately. When we first got Ellie’s
diagnosis half way through my pregnancy, it instantly brought us closer together. We’d share our fears and anxieties. We’d cry and let each other be
vulnerable. We promised not to judge
each other for our feelings or questions and we promised to share it all and
unload the baggage on each other. This
was very helpful. Once we came to terms
with everything, though, and especially after Ellie arrived, I became much less
desirable to live with, I think. Brandon
didn’t sign up to have a stressed out, emotional, exhausted wife. He signed up to date a spunky girl who was
full of life and laughter. One who had
all kinds of ambitions and dreams and whom was always up for fun and
adventure. That’s the girl he wanted to
marry. Nine years later, I feel like he
has the opposite. And not only is that
wife tired and emotional, she’s also trying to plan out a rigid schedule and is
quite grumpy some days. This was a hard
realization. It actually didn’t hit me
until last week when I realized that I get frustrated because I’m doing x, y
and z and he’s doing… what? In reality,
I knew he was doing a ton and shouldering a huge burden for me. And somehow, he was still that fun-loving guy
from nine years ago… even if I’d lost my younger self along the way. As much as I hated to do so, I had to hang my
head and admit failure. Ugh. On the bright side, soon afterwards we went
to a wedding (our first outing without the kiddos since we had Ellie). Brandon was his crazy self on the dance floor
and for a few hours, at least, we slipped back into being those young, crazy kids
without a care in the world. And
although his main goal is to embarrass me to death on the dance floor, it’s
hard not to love him for it. He lets me
be a busted up mess, and for this, I’m incredibly grateful… but I’m still on a
mission to revive a little of that 22-year-old in me.
Lastly, but most importantly, I’ve been humbled by how God
has strengthened us through all of this.
We’re not doing anything out of the ordinary here. We’re doing what every parent in the world
does. I like to say “we do what we do”…
because who doesn’t try their hardest to do what’s best for their family,
right? At the end of the day, it’s the
peace that our faith has given us… it’s the strength from the Father and the
hope of healing that gets us through the long days and nights. It’s the knowledge that Ellie is here for a
specific purpose and that she’ll bring joy and hope and life to others. It’s the faith that we have in His plan for
our lives. We know that this adventure
has been blessed in so many ways and we hope that our journey can help others
through similar obstacles. This is what
helps us share our story, even when sharing leaves us raw. It’s the “God moments” we have along the way
that keep us going… and sustain us when we’re especially weak. We know so many people who have been through
so much more than we’ll ever go through… but if we can relate to others through
this, and help them find hope and peace in His arms; then every sleepless night
is worth it.
Okay, maybe this was a little too personal for some… if so,
sorry. Again – as many of you know, this
blog is where I just unload ;). Thank you
again for following along.
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