It’s a strange sensation
experienced by those in grief. The
feeling that the rest of the world is moving along at its normal, fast pace—speeding
by, even—while your entire world has stopped in its tracks. You can’t breathe. But the birds are still flying and chirping,
people are still driving to work and posting silly jokes on Facebook, and life goes
on all around you.
My baby sister had her first baby one month ago. We were all giddy with excitement. The showers had been thrown, the nursery was
ready, and we were eager to meet my niece, Phoenix Roanne, who was so smart,
she waited until her due date to come!
My sister lives in Kansas City (I’m in St. Louis), so I’d been keeping
up with phone calls and texts as to the progress of the labor and when we went
to bed that night, Beth was still at 5 cm and we were looking at a possible
c-section. The next morning, I had an
email from my mom: “Congratulations! You’re an aunt.”
With a smile on my face, I poured a cup of coffee and
sat down to call my mom and get all the wonderful details. But when she answered the phone, she
immediately turned it over to my dad who said, “There’s a problem with the
baby.”
And just like that, it happened. That thing people talk about- how the air got
sucked out of the room.
He went on to explain that her hands and feet were “webbed.” He said the doctors think there are five digits in each hand, but they are so fused, her
hands almost look like pads or mittens.
And there’s something not quite right about the shape of her brow. They’ve taken blood to do chromosomal
testing.
Since Phoenix did not have immediate respiratory,
digestive, or heart concerns, she was allowed to leave the hospital with her
parents after the normal 5-day stay after a c-section. We remained concerned that something had been
missed and that she may be in danger.
After a full month of waiting on pins and needles,
Phoenix was finally diagnosed with Aperts Syndrome. It’s a genetic disease in which the seams
between the skull bones fuse earlier than normal, affecting the shape of the
head and face. It also causes
complicated fusing/webbing of the hands and feet. Children with Aperts often go through 15-20
major surgeries by the time they are 10 years old. The hands and feet are a process themselves,
but the most concerning surgeries are the craniofacial ones. There are many issues that can develop: sleep apnea, hearing and vision loss, intestinal
mal-rotation, brain injury, and many others.
We appreciate your prayers for Baby Phoenix and my
family as we move forward. We’ve been
knocked down by a punch that came out of nowhere, but we know that God was not
surprised. His Word says that she is fearfully
and wonderfully made, and we rest in His promise that He cares for us and He
knows the weight of this
heartache. We love this precious little girl and are sick with grief at the thought of the pain she is going to have to suffer.
Sometimes bad situations aren’t
made “okay” in the end, at least from a human point of view. Sometimes they are just terrible things that
we have to live with and make the best of.
The world keeps on spinning even when we are stuck to the ground on
which we stand, but we are standing on a hope and a peace that He knows and we
ARE in His hand.
Matthew 10:29-31
What is the price of two sparrows--one copper coin?
But not a single sparrow can fall to the ground without your Father
knowing it.
And the very hairs on your head are all numbered.
So don't be afraid; you are more valuable to God than a whole flock of
sparrows.
