The plight of Lily

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!