Living on the Rock

There are a few perks to a hospital stay. One is curly fries in the cafeteria. Another is HGTV. Recently I saw an episode where a family was purchasing a second home in the Caribbean. They wanted to be able to give their children an amazing childhood- snorkeling, parasailing, beach days, a beautiful view, etc. all a plane ride away. At one point in the episode, as the husband was looking out over the ocean on their new balcony, he said, "This is living on the rock." I almost laughed out loud. 

To be clear, there's nothing wrong with a second home or wanting to give your child a really fun childhood, but what does living on the rock mean? Well, to this man, it appeared to mean living a life of luxury- beautiful views off your balcony, a short walk to the beach, and endless entertainment.

Psalm 18: 1-2 says, "I love you, O Lord, my strength. The Lord is my rock and my fortress and my deliverer, my God, my rock in whom I take refuge, my shield, and the horn of my salvation, my stronghold. And then verse 31 of the same chapter says, "For who is God, but the Lord? And who is a rock, except our God?"

I began this post back in February when Eden was hospitalized for a respiratory infection, her second respiratory infection of the season and her fourth hospital stay since she was born. For various reasons, I didn't get around to finishing the post. 

A couple of weeks ago, Eden was hospitalized again, but this time it was for uncontrolled seizures. She began having seizures several months ago, but they were very short seizures and generally happened infrequently. This time, her seizures were lasting longer and were happening so frequently, that I feared that her little body would not be able to recover. We were told on her second day of life that she would likely not live beyond infancy and that due to the severity of her brain damage we would always need to hold her loosely. This week we were told again by a new neurologist that kids like Eden usually die from respiratory infections or seizures, and that she would be susceptible to any type of seizure at any time for any reason and that any of them could be fatal for her. And should she live to 5 (his words), she would have a very tough road ahead of her. 

So here's what's true and has been true from the beginning: She is a blessing. We love her and she gives us lots of joy. Her life is not in vain. She was made with purpose and intention, and God will complete his purposes for her life. One day she will be made whole and perfect and she will no longer suffer.

Here's what's also true: This is very hard. Not only a hard prognosis, but hard day to day living. Managing doctor's visits, therapies, insurance, medical bills, pharmacies and prescriptions, medical supplies and equipment- that's all surface level annoyance. Hard, but more in the annoying category than in the suffering category. Lack of sleep, lack of freedom and time, having Don and I pass like ships in the night. Certainly not ideal. Hard. But the hardest level yet (apart from a very hard prognosis) is watching your child suffer. Watching her body stiffen and tremble and shake uncontrollably time and time again during seizures was probably the hardest thing we've witnessed to date. We feared that maybe our time with her was coming to an end, and there were many times that I kissed her cheeks or rocked her in the night and wondered if she would still be alive in the morning. 

I've wanted to hide under my covers and cry and maybe even sleep for days, but life goes on and has to go on. There are soccer games and birthdays and end of the year parties and children that need snacks and baths and a baby that needs medication and laundry and on and on. 

So how do you endure and persevere and get up each morning and do the same hard things over and over again? You put your hope in the true rock, Jesus Christ. You believe God more than what your eyes can see. And you trust that his word and his promises are true, no matter what it looks like in the short term. And you don't believe the lie that ease in life leads to happiness in life.

But we are weak and often grow weary, so for those that are praying for us, here is how we would love for you to pray:

• Pray for Eden's comfort and joy. We want her to be as comfortable and as happy as possible for whatever time she has. We began hospice care this past week and will likely eliminate some of her therapy in order to preserve her comfort.
• A note on hospice: we've been told that pediatric hospice is not like adult hospice- so in other words, they don't wait until the very end to come into a person's life. Their overall goal is to keep her comfortable and add to her quality of life and also to remove some burdens from us. We will now get all of our prescriptions and supplies delivered to our house through hospice. We will also have drs and nurses visit her and treat her at home. This will be a good thing! But, it's also hard and I've struggled more than I anticipated this past week being confronted again with the severity of her condition and the reality that we will not have long with her, though the timeframe is still very much unknown. We've also been adjusting medications and she's been alternately super agitated and super sedated. The past day and a half she has basically slept day and night, her eyes are hardly open, and there haven't been many smiles. We will need to try various combinations to find the right mix that makes her comfortable but not totally sedated. I miss her smile and the little spark in her eyes. 
• Pray that God will complete his purposes for her life and that he would get much glory from her life. 
• Pray for our faith, that it would not fail. Pray that we would be strengthened and renewed day by day and that God will give us faith to endure. Sleep is good, help is good, but faith is what we need.  
• Pray that God will complete his purposes for our lives through all of this and that we will submit daily to his will and his plans for us. Pray that as we look to Christ, we will be conformed more and more into his image.  
• Pray for our boys. They love their little sister so much and sometimes watching that love gives me a pang of sadness. Pray that God will use this for their good as well. 

And Happy 11 months to our baby girl! You have brought us so much joy and have ushered in a richness to our lives that we never could have imagined. We love you for eternity. 

Revelation 21:4-5 He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” And he who was seated on the throne said, “Behold, I am making all things new.” 

From one of my favorite songs (From the Depths of Woe):

Therefore my trust is in the Lord, And not in mine own merit. 

On Him my soul shall rest, His word upholds my fainting spirit. 
His promised mercy is my fort, My comfort, and my sweet support. I wait for it with patience. 

What though I wait the live-long night, And ’til the dawn appeareth. My heart still trusteth in His might, It doubteth not nor feareth. Do thus, O ye of Israel’s seed, Ye of the Spirit born indeed, And wait ’til God appeareth. 

Though great our sins and sore our woes, His grace much more aboundeth. His helping love no limit knows, Our upmost need it soundeth. Our Shepherd good and true is He, Who will at last His Israel free, From all their sin and sorrow.

This is also helpful: 

Embrace the Life God has Given You