"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen."
~~Elizabeth Kubler-Ross
Psalm 94:18-19
When I said, "My foot is slipping," your unfailing love, LORD, supported me. When anxiety was great within me, your consolation brought me joy.
I'm disappointed.
Disappointed that we are in a familiar place again. Disappointed at what this place brings to our lives. Nobody likes it. We just go along doing our best to survive it.
Isaac's body is experiencing referred reaction to months and months of chronic reflux. He has scar tissue that has built up in his body from all of the acid from his tummy before and after his artery repair surgery. Over time, this scar tissue has grown and is now causing chronic rhinitis and obstructive sleep apnea. He has begun to sleep with his neck tilted far back, in order to compensate for the lack of air he is breathing in through his nose and mouth. He slept like that for the first year of his life when he first experienced obstructive sleep apnea. There are a few other domino effects that it's causing throughout his body that we are keeping a watch on. He will undergo a ct scan within the next few weeks and another surgery or two, to cut away the scar tissue so that he can breathe easier at night. The ct scan will also revisit an area of abnormality that was found on his brain when he was just a few months old.
It's been over 3 weeks now, that we're going about our day on about 4-5 hours of sleep a night. All of us. It's beginning to take a toll on the household. We do our best to keep things as normal as possible around here, but some days, it's just not doable. I think we all want to scream at times, because we can't believe that we are revisiting a season that we prayed so hard to get out of. One that we lived in for over a year.
Medicine regimens have changed and increased and now we give Isaac 9 different medicines during a 24 hour period. A few of them we give 4 times a day. For a busy toddler, who doesn't know that he is sick or not sick, mainly because this is all he's ever known, this just doesn't fit into his schedule. He'd much rather be playing with blocks or dirt, instead of being held down for another breathing treatment.
We celebrated his birthday this past weekend with family and friends. It was a day that reminded us to take in all of the joy and put the hard stuff on the shelf for the day. The hard stuff? We've seen our share over the past 2 years. On most days, I can honestly say that I get into a groove of "we got this". We've survived worse than this, right? This should seem easy to pros like us. But, when I am finally in the quiet of my van on the way to the post office or to the local supermarket, my tears say otherwise. Frankly, I'm tired. Physically and emotionally tired.
Don't get me wrong, I adore this boy with every fiber within me. I can handle the medicine schedule and the sleepless nights. If I push myself hard enough, I can even wear a smile on my face that no one would even think to guess was fake. But, watching your child suffer and continue to struggle with physical illness, gets old. It doesn't get any easier. My heart breaks because of it. It drains me to empty on most days.
People aren't always easy to deal with either, whether it be the nurses or physicians, or people in the waiting room with us. Isaac has severe anxiety disorder in doctor's offices. He begins to feel it as soon as the door opens and he takes in every medical device on the wall, or even the familiar fish tank that seems to be in all of the waiting rooms. He whines and moans until they call his name, in which he then begins to cry and cling to me. The clinging soon turns into fight or flight whaling and thrashing as he sees the examining table in the room we are assigned to. People just don't get it. They don't know his history unless they spend hours reading his medical folder. They just see a screaming toddler or a very loud obnoxious- misbehaving- thrashing toddler. And really...I get tired explaining to people why he is the way that he is. And compassion doesn't run deep in everyone. I smile through my tired and sweat filled body, while I fight to hold him and do my best to soothe him. They don't know the internal struggle that's going on inside both of us.
Then there are people who know his history.
The people that have seen us walk through the past two years.
I know their heart is genuine for the most part. I know that they love us and our boy. We have seen Jesus in the face of many, many people. People that we would not have expected to bless us, have blessed our socks off at times. Friendships have surfaced that are absolutely a blessing and friendships have faded from the awkwardness of our "situation". People don't always know what to say or do in situations like ours. Situations that seem to last for seasons and seasons. Comments like, "Oh, he's sick again?" or "Oh, you poor guys." or "He looks so healthy. Are you sure he's sick?" or "You just gotta have faith". They ask how he's doing in hopes that you are going to say that he's doing great. And most of the time, I say that he is, because at the time, in the middle of the day, he's fine. When in reality, our nights are a nightmare. I used to look forward to bedtime, but now, it makes me nervous. I kind of hate it. But, people don't want to hear that. They want to hear that he's doing good. They want to know that you are doing good, even though you're not. It's just a weird place to be. I pray all the time that my frustration and discontent in where we are does not reflect from my mouth towards others. I pray that my words are gentle and full of hope and strength. I pray that people see more of Him, and less of me. I pray that I reflect His grace over and over again. But, sometimes, I just need to be real with myself. It's just hard all the way around.
My precious friend wrote a blog a week or so ago. I read it and sobbed and cheered and clapped like a crazy seal. It was as though she looked through the window of my heart and saw all the emotions inside of it. She's in a hard season with her own child. She really put things into perspective when it comes to dealing with others while they are in a hard place. She's pretty amazing! If you aren't following her blog, you should be. There's also an opportunity to bless her family at the bottom of each post.
Yesterday, as I watched my little doodlebug play in the dirt outside, I talked with God. I told Him how disappointed I was to be where we are, again. It's not exactly the same, and I am thankful that our boy's heart and esophagus are healed, but it's a familiar place I just didn't want to revisit. I cried and let Him know what I thought of our situation. And then I sat in the quiet as my tears hit my lap. He gently reminded me of this scripture:
Psalm 34:18
The LORD is close to the brokenhearted and saves those who are crushed in spirit.
Disappointed people have broken hearts. Disappointed people feel like their spirits are crushed.
That's me.
He is close to the disappointed. He is close to the broken hearted. He is close to those who are crushed in spirit. He is close.
God knows that there will be times that our hearts will be crushed, times that we will be disappointed with our circumstance. And He promises to be close to us. He declares it. The word "is" declares it so. "Is" is a state of being. A place of current existence. In the midst of my disappointment, He IS close to me. He exists in the same space as I do. He IS with me. He IS my God.
It's okay for me to feel this way. It's okay for me to not want to be here, to not want to relive this place with our boy. Life is just that way sometimes, disappointing.
The scripture goes on to say:
Psalm 34:19
The righteous person may have many troubles, but the LORD delivers him from them all;
Just because I am disappointed right now, doesn't mean that I don't believe He will deliver us, just like He did before. It doesn't mean I've lost my faith. It's just a place I am right now. It only determines my current position, not my destination.
I know that we will one day see this season as a distant memory. I know what my God is capable of. I know that the Redeemer redeems all things. But, for now, this place is very real to us. It's where we are. It's our normal.
Proverbs 24:16
"for though the righteous fall seven times, they rise again,"
"for though the righteous fall seven times, they rise again,"
Last night, I laid in bed with our little guy as we read one of the new books he received for his birthday. We snuggled and giggled as we read the book over and over again. In that moment, everything was just as it should be, perfect.
I'm disappointed, but it won't last forever.
Psalm 71:5-8
For you have been my hope, Sovereign Lord,
my confidence since my youth.
From birth I have relied on you;
you brought me forth from my mother’s womb.
I will ever praise you.
I have become a sign to many;
you are my strong refuge.
My mouth is filled with your praise,
declaring your splendor all day long.
Psalm 71:14
As for me, I will always have hope; I will praise you more and more.
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