Out of the Valley

Posted on June 7, 2015

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Out of the Valley

…though I walk through the valley of the shadow of death…

These words are a few thousand years old…or perhaps a few thousand years young, because they still feel so fresh and alive.

The Valley is were we have been dwelling for the past 3 weeks. May 14th is etched into my memory now as the day that our sweet little Contessa suddenly loss the use of her legs and we immediately found ourselves swept up into the eye of a tornado of medical tests. Hours ticked by painstakingly slowly as each test came back negative or inconclusive. And each time a doctor relayed to us that they had no idea, it seemed like my heart sunk a little deeper into The Valley.

In those first days, I came face to face with what it might be like if our little Tessa was taken from us. So even with a crazy diagnosis like Transverse Myelitis, the very fact that it was no life-threatening, made it feel like good news.

I feel like I am a part of a special club now. A club no one ever want to be a member of. It’s the club of parents who have watched a beloved little one in a hospital bed encircled by doctors offering no kind assurances of the future.

Living at Seattle Children’s Hospital for two weeks was like being at the “clubhouse” for this special club. We were even easily identifiable with wide orange lanyards with the words, “ PARENT CAREGIVER” printed on them. So every time we passed another parent in the hall on the way to the cafeteria or heading up for another test, our eyes would briefly meet and for a short moment there would be a glance that all-emcompassingly said, “Your little beloved is here, too. I’m sorry. I hope today is good. I hope he is doing well. I hope the doctors have good news for you. I know your pain. We are in this together.”

The past 3 weeks have left hardly any time for reflecting (or sleeping, responding to emails, etc). While at the hospital, sleep was scarce, as there was a constant barrage of medical staff coming by to check on Tessa. In one day we saw 3 neurologists, a neurosurgeon, an infectious diseases doctor, a lactation consultant, a team of IV nurses, a physical therapist and a regular MD, plus the nurse coming in every 2 hours to check vitals. Everyone wanted to look at Tessa, poke her legs, and ask us a stream of questions. Naps in the hospital were a disaster, and night sleep was just as interrupted…which meant super-overtired baby who was very fussy and nursing poorly. All this = exhausted parents

And then Valencia was almost as much of a mess. Mom and Dad are gone all the time, everyone is telling her that Tessa’s legs don’t work, different family members are tag-teaming hanging out with her during the day and putting her to bed. (This is after we have already turned her world upside down by leaving everything familiar and flying across the world then spending 10 weeks traveling across the country sleeping in different beds, making new friends then saying goodbye the next day.)  Poor confused little two year old! All this = exhausted parents

The needs of our girls + the emotional upheaval of being in the Valley = a tiredness that is going to take weeks to recover from.

In the midst of the Valley, we never doubted that our Shepherd was with us, was holding our little one in His arms. Even in the darkest moments, we survived on knowing that He is good, even if the whole thing felt horribly terrible.

We are no longer in the Valley. We have made it through and are climbing up the slope of the other side. We are out of the hospital, and Tessa is making slow improvement in using her leg muscles. We still have no idea what the future holds for her and what her mobility will be. But the very fact that in the past few days she has begun to deliberately move her whole leg, both of them (though very infrequent), is cause of celebration for us!  The same Shepherd who guided us through the valley, is leading us up the other side. He was He truly has prepared a table before us, and we can say we are experiencing our cup overflowing.

An Overflowing Cup

There is SO MUCH goodness and mercy that have been poured into our cup. I don’t have the time to write all of it (and you wouldn’t likely have the time to read all of it!) so I’ll just relate the big things.

a place to call home

Um, yeah, so we bought a house. I know, you’re thinking, “What??!” We actually started the process back in April. A few older, wiser, more experienced missionaries had recommended it, emphasizing the benefits of financial investment, but most of all a place that our kids could call their, “America home.” We had some help with a down payment, and with a long list of specifics we were looking for started looking around. In a week we found the place, made an offer and after the rigamarole of counter offers, inspections etc. we signed papers on the same day that we were discharged from the hospital. We had NO IDEA just how much come June we would NEED a place to call home, to recover, to rest, to have stability. But our shepherd knew. And He prepared this place for us to come home to when we finished Tessa’s treatment at Seattle Children’s. We’ll post pics and more about the house soon!

gifts received as love

We have felt so loved by the generous gifts of friends and family. Checks in the mail, gift cards from strangers, meals prepared for us, hand written notes from Kenya, and a flood of email and facebook messages have carried us along. Included in this is the generosity of thousands of people who have donated to Seattle Children’s Hospital so that people like us can receive financial assistance. What that means: Seattle Children’s Hospital will cover 100% of our bill after insurance has covered their part. What!?!?! That is crazy to us! **

Friends in the hospital

In addition to being at a phenomenal hospital, we had the extra perk of having people we knew who actually work there.

Claire’s brother in law, Paul, is a Child Life Specialist in the ER. So even though it was his day off, he (along with Claire’s mom) met Claire and Tessa when they arrived by ambulance from their flight into Boeing Field. He was indispensable as a hospital (and ER!) insider, and stayed by Claire and Tessa’s side from 5pm until 5am while John and Valencia were still making their way from Oregon by car.

An old friend, Sarah, who we knew from Spokane, now lives in Seattle and works at Seattle Children’s, and she was able to stay with Tessa for an evening so we could go out to dinner. Spending time away from the hospital, together, on a date (of sorts) was SO refreshing.

We also met a nurse who helped during a particularly horrific IV session (like 6 IV attempts into her limbs, before resorting to a head IV). Through the course of conversation, we discovered that we had a Spokane connection. She is the daughter-in-law of one of Claire’s professors from Whitworth University! Claire related how she wished she had a copy of her old professor’s book on suffering, A Grace Disguised by Jerry Sittser, and the next day, the nurse brought a copy for us to have.

These connections, though perhaps small, to us were grace. They were part of our cup overflowing.

MORE?!

Yes, there is even more grace:

  • This whole thing happened here in the US, rather than Kenya.
  • This happened on our way to camping, not when we were actually in a campground in the middle of nowhere, so we actually we near a hospital
  • The two weeks in a hospital were NEAR FAMILY, so that we had a place to stay, meals prepared for us, help with Valencia, and lots of support.
  • Unlike many other families we met at the Hospital, neither of us are “working” right now, which means that we both are able to commit ourselves to our girls during this time.
  • Free tickets to the zoo and aquarium, so that we could do some fun things with Valencia in the midst of all the crazy

And now, were are planning to spend the next month just RESTING, staying in our new home, taking walks, going on picnics, meeting with friends, and generally trying to be a normal family again.

 

 

**Unfortunately that doesn’t cover our expenses at the hospital in Oregon, or the …big gulp…$50,000 life flight bill (!) But we are still waiting to see how much of that insurance will cover and there is even the possibility that Washington medicaid will help with that expense as well. We are actually feeling a lot of peace about all that right now because we have seen God provide so many times in our life, how can we not have faith that He will again.

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