How God must've felt

I am a dreamer. I think in my sleep. I cry in my sleep. I have written term papers in my sleep. And, I have brainstormed solutions to problems in my sleep.

Last night was no different. Only I was given a different view or focus of my family's current situation as we watch Megan's tired body struggle to catch her breath as her chest and airway muscles are constantly in motion and we are trying to find the right combination of medications to relieve any suffering she endures.

Another bit of information I think is important for you to know is that I have never viewed the movie "The Passion of the Christ." We were gifted the movie a couple of years ago but I have never been able to bring myself to watch it. I know that the many people I have talked to about it say it is very powerful and followers of Christ are given an entirely new perspective on what exactly Jesus did for us when he died on the cross.

John 3:16 - For God so loved the world that he gave his only begotten son, that whoever believes in Him should not perish but have eternal life.
(from the version of childhood recollection)

That promise is what we hold onto to comfort us and know that our daughter is not going to be gone forever. She is getting a perfect, pain free body where she can eat, sing, dance, walk, play, praise Jesus, and pray for the rest of us here until we meet again.

With that said, I have told a few people lately that "I wish that Megan and I did not have to go through this process. Why couldn't she just fall asleep and wake up in heaven? I don't want to watch this."

Early this morning it came to me in true "Job fashion" (character full of suffering in the Old Testament)- a question. How must God have felt to watch His Son be tortured, beaten, and hung on a cross knowing that he was not going to a place of happiness, complete rest, and fellowship?

Jesus took our punishment for those few days until He Rose Again so that we wouldn't have to endure it for eternity. And, let me tell you, my friends, this - that feels like hell to us right now - is the closest we ever want to get. And, God knows how I feel exactly (actually, He knows worse).

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Sometimes it is about what's on the other side.

Megan had a really rough night last night. After last night's post about our plans for today, everything changed. Megan's respiratory status became unstable. She got a fever, her respirations became very rapid, and she LABORED heavily.

We had to call in the ICU doctors for ideas to give Megan the additional support she needed to make sure that she was comfortable - and we told them we wanted everything she needed at least until our families could get to us.

Today we collectively decided with the doctors that the MRI would have to wait until the respiratory symptoms subside. Then we talked to the hospice people here at Riley. We told them we were still on the fence about what we wanted regarding Megan's condition but that we wanted her to be comfortable.

Then we talked to the pulmonologist's team on duty. They have seen Megan, her x-rays, her sleep study (turns out they saw what they needed without her sleeping), and the reports from last night.

They do think Megan has a virus. It seems this virus has weakened Megan's system to its breaking point. Megan has lost weight and the pulmonologist says it is not because she is not absorbing the nutrition. She is burning it off at a very rapid rate and then some more. She has lost almost eight pounds since her recurrent illnesses began this April. The pulmonologist says that Megan not only has large tonsils, adnoids, swollen throat, and glands but she also has weakened muscles, including her diaphragm which is what is most needed to take a simple breath (or so we think). All of these things may be minor separately with healthy children but with a child like Megan all of them put together are not compatible with continuing a high quality of life.

We talked about artificial means of supporting her and that would just be prolonging the inevitable with no less risk of continuing to fight multiple infections.

Given this information, we are confident that the Lord is directing us to look to Megan's eternal future rather than this earthly mountain we are climbing. For Megan, what is on the other side is what matters most.

Although this is a very hard climb for our family, we feel a peace about the events of the day. When we started the day I asked Ken to type some of his feelings for a start about how to report on Megan's condition. This is what he wrote:

"I pray for guidance, wisdom, and peace.

We need guidance in how we should plan for Megan's care, and her quality of life.
We need wisdom to know that whatever we decide is best for her. And is part of HIS plan.

We need peace to know that we are making the best choices for her. We want her to know that we love her and will see her again."

I feel that this prayer has been answered throughout the events of our day. It has been the hardest day of our lives. The comfort comes in knowing that Megan will soon no longer be in pain and that we will see her again one day.

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In His hands

I just wanted to let everyone know that Megan is in the hospital again. She was admitted last evening. She started having respiratory symptoms on Saturday afternoon and they have worsened since. We already had an appointment with the orthopedic doctor for this morning and instead of going to our hotel last night we brought her to the emergency room. They admitted her with signs of respiratory distress.

As of right now, she is stable respiratory wise. The orthopedic doctors have said they do not believe Megan's pain is coming from any dislocations or her scoliosis but mentioned that it may involve the nerves in her spine.

Ken and I have decided to investigate this possibility of finding a help for Megan's physical pain. One of three things will happen tomorrow when she has an MRI to determine anything about the pain she is enduring with her back and legs.

They have to place her under general anesthesia to do the MRI as she cannot lay still. They did this back in April on her chest cavity (they were looking specifically at her lungs and she came back improved because of the rest she needed). Tomorrow, we are expecting that she will either 1) Repeat the same experience as in April and we will learn about whether we can fix her pain and develop a plan accordingly. 2) She will not be able to be removed from the ventilator and we will need to make decisions about how and when to get her off of it later. Or, 3) The Lord will take her home and give her a perfect, pain free body.

We have thought long and hard about this decision. We have chosen this path because we do not want Megan to suffer and she has been struggling for the last few months, has not been getting better, and her pain has increased. We have placed Megan in the Lord's Hands. We know that He is able to take care of her and the rest of us no matter what happens tomorrow. He is the Great Healer and the Great Comforter.

He's got our little Megan in His Hands,
He's got our wondrous Megan in His Hands,
He's got our tiny little baby in His Hands,
He's got our family in His Hands.

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