I’m not sure how to start this blog this morning other than
sharing that it’s the cry of every loving parent’s heart. And I believe,
especially a Mother’s heart, as that is the place I am speaking from.
Our little angel has been sleeping on my chest a lot for the
last several days. As much as it melts my heart into unidentifiable pieces, it
also breaks it too. Lily is sick again.
We are probably approaching 60 doctor’s visits. We have stood
and watched as a doctor has stood over Lily, searching over her body for some
kind of clue as to how to treat her for her newest- whatever it is. Less than 3
weeks ago it was bronchitis, which for her was highly risky, given her set of
circumstances and lungs. If you are unaware, please read my previous blogs
titled; “trisomy 9&12” and also, “the truth.”
Whenever faced with a new illness in Lily, my husband and I
immediately go into this mode. We already know that even if it doesn’t last
longer than a week, it is likely going to be a very long week. Lily requires
above and beyond care while she is ill, as all children do. But Lily is an
extreme child to begin with.
I have had few scattered moments of freedom. Lily has spent
the majority of her time sleeping on me or just within my arms reach. She seems
to have developed separation anxiety of some sort when she is ill. If I walk
away to use the bathroom, get your ear plugs ladies and gentleman because it’s
gonna get loud! My husband of course brings her comfort when she is ill and
he’s quite good at it too. After all, that’s her daddy, receiving from him a
love that no one else can give. Unfortunately, to no fault of his, while Lily
is sick, anyone else’s comfort is briefly sufficient.
Amazingly, she hasn’t had much interest in drinking her
milkies. She seems to have grown an interest in water. Thank God because the
last time she was sick, she stopped eating and drinking all together for nearly
24 hours!
My husband and I have said and will probably continue to say
that caring for Lily is more than a two parent job. My husband has been blessed
enough to have been working part time the last 3 months thus giving him the
freedom to just be Dad more easily. But he’s going to be going back to work
fulltime soon. Which is good for us financially but is gonna make things more
difficult at home.
Over the course of the last few days, Lily has had a high
fever requiring Tylenol. The times that she needed the Tylenol, she threw it
back up both times. Of course it was the one thing she needed at the time but
she just doesn’t take medicine well. We did get her a new antibiotic which she
seems to be handling well. This week, once again we got her into a new
chiropractor, which as of right now seems to be working out pretty well. And I
pray that it continues to. I pray that it helps with her acid reflux and the
pressure on her cranium.
My husband and I both have not gotten much sleep, as most
parents don’t during the course of having a sick child in the house. We do have
an older child and even when she was little and sick, it wasn’t this intense.
Lily as wonderful as she is, we do understand has much cause
to be such a grump all the time. While she doesn’t talk or communicate like most
kids do by this age, she still does communicate in ways that we understand. A
lot of our days are filled with Lily crying and grumbling most of the day. I’m
not exaggerating, most all of the day… After about an hour straight of it,
after doing all that you know to console her, your head begins to hurt really bad. I know while this is going on,
I begin to wonder how on earth she can manage to carry on like this without
stopping. One hour passes into two hours and sometimes more. We have talked to
doctors about this. We have talked to specialists about this. The only help we
have found is at the natural medicine doctor and the chiropractor.
This is something that we have just begun, again. We are
seeing a different chiropractor, one which we believe we can add to Lily’s
permanent care team.
The amount of attention that goes into prepping Lily’s
morning bottles is a bit maddening. Now I know there are those little pill
boxes that some folks have, labeled by the days of the week. Lily’s first two
bottles of the day consist of; lacto-relief powdered milk with filtered bottled
water, vitamin D, coconut oil and probiotics. Then, on the side, she gets an
enzyme mixed with a G.I. revive. There is a lot that goes into getting our
morning started around here.
If we can manage to, we try to sleep in until Lily gets up. But
at least 5 days of the week, one of us gets up earlier to take our oldest
daughter to school.
Lily is not real big on napping during the day. So there is
little time for either one of us to just stop and take a breath or recharge our
batteries. Fortunately, as of late, Lily has been sleeping through the night.
Which, amazingly is still a new thing. She has napped quite a bit this week but
mostly on my chest.
I am sure there are other parents out there at least kind of
like us, we just haven’t met them yet. We don’t really have anybody to talk to
about this stuff either that truly understands. We do know, however, that we
still have a lot of people praying for us. Which we do still need a lot of
prayer. It’s been a long year and we have accepted that it is probably going to
be a long road ahead of us too.
I’ve written these things, as random as they may seem, hoping
that someone who is struggling with parenthood or their special needs child- to
know that they are not alone.
You gotta ask after some time passes what keeps two people
going at what we like to call, brain melting speeds? Two scriptures come to
mind.
Galatians 6:9 “Let us not become weary in doing good, for at
the right time we will reap a harvest if we do not give up.”
Also, the parable of the ten talents. Matthew 25:14-30.
I want to be able to stand before God at the judgement throne
and hear Him say, well done good and faithful servant! God has given us a very special
gift in Lily. Though difficult most of the time and at times “brain melting” we
realize that in order to care of Lily the way we should, we need to seek God, daily!
