Sitting
around with our hands under our bums.
This
must be how we are envisioned by some. We don’t leave the house much, unless we
have to. We are trying to re-gain our grasp on the world outside of our home.
We are trying to do the best that we can in caring for Lily. It’s a delicate
matter, you see. That balance that everyone struggles to find in life has been
complicated and compounded by our specific set of circumstances.
When your
child is sick you take them to the doctor, right? When your child is sick for almost
3 months straight (you’re sick now too) you take them to the doctor numerous
times. Your focus has now been shifted to getting your child and yourself well
again. The therapy institution we take Lily to has signs all over the place
saying, if you’re sick don’t come. So naturally, we had to take almost 3 months
off but the bi-weekly in home visits continued. Our physical therapist bailed
on us back in November at the mention of us moving on to a bigger facility. It
was a headache to get into the place we’re at now but they have an excellent
reputation so I kept pursuing it and it is working out very well.
We had
an in home care coordinator who served as a sound off and served as an
occasional resource. We were scolded for not following through on ALL the
therapies in spite of the request of the bigger facility (sick= stay home) and
Lily’s growth and development was completely over looked. I am not certain to
what measure Lily is being held up against, as there is NO ONE else like her on
the planet and I mean no one. I got confirmation of that via mail that after
searching all the data bases, Lily is the only one with this gene replication.
So she puts a twist on the phrase, one in a million or more realistically, 1 in
7.1 billion. My husband and I have embraced the fact that Lily is going to
develop on her own time table. She will also do things in the order that God
has intended for her to do things. My husband and I of course try to encourage
Lily to push herself in the right directions toward strong development. We are
under the direction of doctors and various therapy professionals. We of course
do research of our own at home on the internet, trying to find new and exciting
ways to get Lily involved in the world around her, as she doesn’t take much
interest in toys.
We have
switched physicians two times now, going on our third. Today, sent via
certified mail, we received a letter. We were asked to move on, basically. That
the patient/physician trust was diminished and that the doctor wasn’t able to perform
doctor duties anymore because of it. And of course our failure to schedule
wellness check up’s, which was one appointment by the way. It’s the one year doctor’s
appointment, the one where they jab you with more shots- which we are skipping
until she is a bit older. Also, the trust relationship has been diminished
because we had only seen Lily’s “regular” physician 3 times out of the 15 times
because her doctor was never there, we always saw the other associate doctors.
Now tell me, how are you supposed to develop a relationship with someone you
never see? But we do already have the wellness checkup scheduled with a new and
different pediatrician, I had scheduled it several weeks ago. Around the time
of her birthday, let’s say the month surrounding her birthday- she was at the
doctor’s office 6 times. But yet, we’re failing to take care of our daughter’s
needs.
The
last time I checked, there were still 24 hours in a day and still only 7 days a
week. And when your child is ill or has a chronic problem, like severe acid
reflux, you tend to those things first and foremost. In the meantime, while we
have been sitting with our hands under our bums, Lily has been seeing the
chiropractor an average of twice a week for all of her ailments. Including;
acid reflux, low muscle tone, flexibility, constipation, cranial pressure,
tight jaw/high arch- the list could really go on. Since she has been seeing the
chiro we have been seeing wonderful improvements in all these areas. You go
where you see results, right? In the last couple of months, Lily has been
reaching out in front of herself more and actually sat up right for quite a bit
of time on her own, while eating her milkies! Lily still gets her enzymes every
day via a syringe. We have more “work out time” than we had before because her
acid reflux isn’t as severe as it was, she isn’t choking every time you try to
do tummy time. Lily loves her face time
with her favorite people, so we’re pretty well locked in most of the day. Then of
course there is the matter of not being able to feed herself yet, so a lot of
time is still devoted to bottle feeding. And my favorite parts of the day and I
think it’s Lily’s too, lots and lots of kisses and cuddling.
We have
tried several foods, semi solids. She hasn’t taken a liking to any of them. But
we will not be discouraged and will continue to try. In a matter of time, once
again, on her time schedule she will take to it.
The
purpose of this of course is to express my disgust and shock even for what is
expected of two people who have very, very little help. We were able to get out
on a date finally, for the first time in over month because our church had a
parents night out! We figured it out in the car on the way back from our date
night that we had only gotten away 6 times over the course of the last almost
14 months. We calculated, approximately that may equate to about 24 hours,
total. Some folks may not understand this blog post. Some may even judge me for
it. I am here to say, my husband and I both are only human. We are only two
people, relying on the strength of God to get us back to our beds for a night
of sleep at the end of the day. That is all we ask for. God, give us enough
strength for the day ahead of us. God, of course has filled us with a whole lot
more than that, patience and love too are the big ones. So, with that being
said, I’m confused as to what is expected of us as two people? Fortunately my
husband has had some time off of work and has been able to partake in the madness
that is our life, more than most working fathers. Otherwise it would all fall
on me but I also know God would equip me for that too. I think it’s silly to
expect two people to be able to maintain a super human schedule, given our
limitations- normal stuff, 24 hours, 7 days, needing sleep and needing to eat
too. Most weeks, we have all of the 5 business days of the week booked as
concerns appointments. Yes, all 5 and on some days, there are two appointments.
Apparently, that isn’t enough.
Since
this has been brought to our attention we are turning our attention to letting
go of the dead weight and carrying on in our journey in assembling the right
care team for Lily. It’s been an uphill hike but God has supplied our strength
and determination to do it. I feel like we are finally getting around to having
the right team. The useless and weak will fall away, revealing a strong and
loving monument of healthcare beneath. I am looking forward to the day, when I
have a list of all the phone numbers printed out for the people we need and for
whatever specialty. There will be no numbers crossed out (as there are now) I
will not have to re write this list time and time again. It will just be the
permanent list. It will be the people who are here to stay, who actually care
not because they have to act like they do but because they really have a heart
for our daughter.
