Dose of Reality

July 21, 2014

This is a picture of a typical dose of medication morning and night for Reagan.

Dose of Reality

Reagan gets about 2oz of medicine a day.

I am so tired. But more than that…I’m weary. And I know, that this is just going to be a weary season. It will probably last a really long time, too.

Rob and I listened to a sermon on Sunday at our kitchen table. It’s really hard for us to go to church b/c of Reagan’s schedule, not to mention the random vomiting for the past two weeks (I’ll get to that later). The sermon basically said, there are seasons in life, and you could literally be doing everything perfect, and you will never feel like you’re making any progress, or that anything is getting any easier. Nothing sprouts in the winter, nothing blooms, it’s cold, it’s difficult and you want it to end. But unlike nature, life doesn’t move in three or four month incremental seasons. Moses was in the dessert for 40 years, Joseph was sold into slavery and lived a difficult life for 12-15 years before he became the second most powerful man in the world, under Pharaoh.

And on the flip side, you could be doing everything wrong, not talking to God, not trusting in Him, and your life could be a breeze. If you’re in a good season, whether you’re talking to God or not, cherish the easy road right now b/c it will not last forever. It will not last forever.

Back to the vomit, Reagan has been throwing up for two, maybe three weeks, randomly. She’s also been fighting a cold/virus, no one knows for sure. The problem with her throwing up, is it messes with all her levels and Rob and I have try to catch her up on the formula she’s thrown up by guesstimating how much she threw up, and how long after she ate that she threw up. Sometimes it’s in the middle of being fed, sometimes right after, sometimes 30 minutes, 45 minutes, an hour, two hours. Depending on when, depends on what we do. Another fun piece to the puzzle is determining what medication to give to her if she throws up shortly after being given her medication. Some you give again, some you don’t.

Reagan’s pediatrician has seen her twice, everything is clear, even though it doesn’t sound clear and even though she’s got mucus, it’s not in her lungs or her chest. But after two weeks of congestion, her pediatrician decided to put her on an antibiotic, just in case something was brewing. Two weeks of sickness and random throw up, and 5 a.m. wake up calls (multiple times a week) would make anyone weary.

It’s not just the throwing up that’s hard…it’s cleaning it, bathing her and getting her fed again. And sometimes this happens multiple times a day. It’s hard watching her be fed, and then make that face…the face that says, I’m going to lose my food all over my high chair, all over the floor, all over you, Mom and Dad.

These past two or three weeks, I’ve called Rob multiple times to come home from work to help clean/bathe, etc. He probably left work three times one week to help me deal with this. One day, I decided to try and handle it on my own and texted my neighbor that the door was unlocked and if she was able to step into my catastrophe, I’d really appreciate it. She was there in five minutes. It’s practically impossible to bathe Reagan alone. Someone needs to rinse her and someone needs to hold her…it’s pretty hard to do both…although, we have done it. And…no amount of preparation will help…I could have all the towels laid out, the diaper, the alcohol wipe to clean her G-tube site, but inevitably, something will be missed and then a decision about whether you can leave her sitting on the towel on the floor will be OK, or if you have to pick her up and take her with you to get said missing item and hope she’s not jostled too much to throw up whatever else is left. The best is when we’ve just given her a bath at night and she throws up while we’re putting her pajamas on.

After she’s bathed, the formula has to be replenished somewhat…it’s just a cycle and it’s super tiring. Especially if you are doing it at 11:30 p.m. which we’ve done on more than one occasion. So at that point, we’re getting to bed at midnight and Reagan is waking up at 5:30 a.m. on average. I always say there’s no amount of coffee that can help with how tired we are. B/c remember, we’re not tired…we’re weary.

I feel like I should define the word weary…b/c just saying it or reading it, doesn’t do my feelings of it justice.

1. physically or mentally exhausted by hard work, exertion, strain, etc.; fatigued; tired: weary eyes; a weary brain.
2. characterized by or causing fatigue: a weary journey.
3. impatient or dissatisfied with something.
4. characterized by or causing impatience or dissatisfaction; tedious; irksome: a weary wait.

At this moment while I write, Rob is with Reagan at two therapy appointments. Those appointments don’t stop, no matter how fatigued we get…those appointments are kept.

This is the season of our life. It is hard, we get sad, we get mad, we (mainly me) have outbursts and want to bang our fist into our chest and scream at the top of our lungs up to Heaven, WHY?! Why are you doing this? Why are you making us go through this? How long is winter going to last this time?

The sermon ended by asking us to “remember.” Remember when God showed up last time? Remember when God was there during your last season of drought? Remember when God helped you pay your bills when you didn’t know how that was going to happen? Remember when God reconciled Joseph to his brothers, the ones who sold him and left him for dead? Remember when Joseph ran to his father and hugged him and cried b/c he was so happy to see him. And he was so happy that the last piece of “winter” in his life was made into spring. Remember when Jesus came to save all the lost? Remember when he died and everyone thought all hope was lost? Or was it? Remember when God raised him from the dead? When things looked most bleak, that’s when God showed up and turned everything upside down.

Yea though I walk through this valley of life, I will not fear.
For I know God loves me and that
his thoughts toward me outnumber the sands on this earth.
In these valleys, The Lord is near.
And he has told me that he is preparing a place for me.
No eye has seen or heard, or mind has imagined
what God has prepared for those who love him.
[mini psalm by AM. Psalm 23, Psalm 139, John 14, I Corinthians 2]

Revelation 21:3
I heard a loud shout from the throne, saying, “Look, God’s home is now among his people! He will live with them, and they will be his people. God himself will be with them. He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever.”

I can’t wait for God to wipe all my tears away.


comments +

  1. Kristy Belden

    July 21st, 2014 at 4:11 pm

    EVERY one of your blog posts leave me speechless and amazed at the same time. Your transparency is simply awesome. I cannot even begin to imagine what your days (or moments) are like, but do trust that there are a LOT of people out here praying for your family…for healing, for strength, for courage.

    It’s not much in the grand scheme of things, but I’d love to send over a meal for your family sometime soon…one less thing for you & Rob to have to worry about for one day. Just email me to set up specifics. Big hugs!

  2. Thelma

    July 21st, 2014 at 4:34 pm

    I have no words for consolation–only The Holy Spirit prays and intercedes on our behalf with groanings which cannot be said.

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