Finding Joy in the Midst of Suffering

We listen to K-love almost exclusively in our family and pretty much every morning after I drop my husband off at work and am driving to the hospital to spend some time with N, some guy named Jud Wilhite comes on and starts talking about breaking things. He quotes Charles Spurgen who said, “Whenever God means to make a man great, he first breaks him into pieces.” Wilhite goes on to reference 1 Peter where it says that we all suffer trials to purify and strengthen our faith as gold is purified and strengthened in a fire. Wilhite encourages listeners that if we are being broken it is actually a good thing and we should trust the process and not give up because God is breaking us to remake us into someone He can use to fulfill His purposes. And every morning when I hear this, I respond– out loud, “I’m pretty much as broken as I get God! Can we get to the remaking part now?”

This inevitably startles H who starts crying from the backseat as if to punctuate the idea of suffering.

Our family has endured a lot over the last 14 months and the trials just seem to keep coming. I personally haven’t been well since September with colds giving way to sinus infections and a little bit of the stomach flu thrown in for good measure. My dear husband has been battling similar illnesses, chronic migraines and difficulties at work. N has had several colds and bacterial infections on top of the larger issues with her omphalocele and lungs and we seem to be stuck in a state of limbo, unable to really move forward in her treatment.

And there is always the normal life stuff that gets tough some times:

How do I buy a month’s worth of groceries for a family of 3 with $100… 

Do we pay this bill or that bill or buy diapers?

The car is out of gas and it’s a week until pay day…

Can we get assistance?

No! You make too much money!

But our daughter….

No! You make too much money!

But we can’t pay our bills……

No! You make too much money!

The roof is caving in— literally! (and figuratively!)

I pray and pray and pray and ask and ask and ask for healing, for peace for a break and God seems silent and at times maybe even absent. I feel like I understand David when he wrote in Psalm 22;  “My God, my God, why have you forsaken me? Why are you so far from saving me, so far from my cries of anguish? My God, I cry out by day, but you do not answer, by night, but I find no rest.”

But then I look back on the last 14 months.

And I see God’s provision: We have a roof over our heads and there is always food in the fridge and pantry and even though on paper the debts far outmatch the money coming in, we have managed to pay all our bills, handle the repairs,  keep gas in the car, and even paid off three credit cards and spoiled our girls for Christmas.

I see His providence: He has brought the right people into our lives at the right time to help care and nurture us through this season whether it is the nurses, doctors and social workers or unexpectedly moving us to a new church that provided new friends and support that we didn’t know we needed.

I see His grace and His unmerited favor: I spent a lot of the Christmas season feeling very angry about the situation we are in. Angry that we were spending another holiday season in the hospital, angry that I wasn’t getting my way. And that anger led to a weakening of my faith and depletion of my joy, but God showed me His grace. He gave our pastor a word at church last weekend regarding someone who had become so steeped in negativity about their situation that they had let it steal their joy and that God was calling to them to repent and to set their eyes back on Him and I sat there and wept because I knew it was me that Pastor Matthew was talking about and that God still saw me and was still calling me to Him. That He wasn’t going to let me sit in my despair and anger anymore.

I see His mercy: Throughout all of N’s illnesses she is still with us, in the community of families affected by omphaloceles there are a lot of families who aren’t able to say the same. God has not yet answered the prayer for a miraculous healing of her omphalocele or her lungs but He has kept her from having the heart defects, physical abnormalities and other life threatening issues and complications that tend to go along with having an omphalocele. He has saved her life more than once due to issues with her lungs including a mucus plug that occurred after a trach change and caused her to stop breathing completely.

And, as David goes on to say in Psalm 22: “Yet you are enthroned as the Holy One; you are the one Israel praises.In you our ancestors put their trust; they trusted and you delivered them.To you they cried out and were saved; in you they trusted and were not put to shame.”

When the Israelites called out to God to save them, He always came through. It very rarely looked the way they wanted but everything they endured ended up changing them for the better. Which has me thinking, maybe the breaking down and remaking aren’t two separate steps that we have to complete but rather being remade is a natural byproduct of submitting, in our suffering, to God and His infinite wisdom. In doing so we are allowing Him to strip away the pieces of us that are shattered and worn and sharp and harmful to us and others and what is left is who God intended us to be.

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Finding Joy Again

When I first started this blog, my twin daughters had just been born 13 weeks early. One had stopped breathing shortly after being born and was down for 8 minutes before the doctors got her back and we were prepared by medical staff to expect severe brain bleeds and other severe damage from being without oxygen for so long. The other daughter was born with a large omphalocele birth defect which medical staff said would have its own share of severe complications and possible devastating genetic/chromosomal abnormalities and due to what my doctors told me was “every pregnancy complication in the book,” I learned that had barely survived their arrival. I felt blessed and lucky to be alive and that the girls were doing better than to be expected — the daughter that coded?  Despite their best efforts, the doctors could not find any brain bleeds or other significant repercussions from being technically dead for 8 minutes. Much to their dismay, they were also unable to link the other daughter’s birth defect to any larger genetic or chromosomal issues. I was without a doubt confident in the presence of God and the fact that He was at work in my life.

I decided that our story was too good not to share and decided the best way was to start a blog, though I wasn’t sure how to organize it all. Then I was inspired by a pastor friend who preached one Sunday on Joy. He quoted someone else as saying that “Joy is the settled assurance that God is in control of all the details of my life, the quiet confidence that ultimately everything is going to be alright, and the determined choice to praise God in every situation.” I thought: “That’s it! I’ll theme my blog around staying joyful and trusting God in the midst of all our circumstances as we navigate being new parents to twins who were born premature and one with a birth defect.” My whole plan for the blog was to share a bit about what was going on in our lives every week, whether it was good, bad or ugly, but always connect things back to joy, to trusting that God is in control and knowing without a doubt that everything will be alright. This would serve two purposes, sharing our story and helping me keep perspective. It was easy at first, the ideas and inspiration flowed from my heart, through my fingertips and onto the screen. Joy abounded and then intensified after we were able to bring H home after a 109 day stay in the NICU.  Our hope was that N was not too far behind but then the days began to pile up on each other.  And then she got pretty sick and we discovered just how severe the damage to her lungs was. We learned that due to the prematurity N has severe broncopulmonary displaysia and pulmonary hypoplaysia due to the omphalocele. We got several new diagnoses as well: mild pulmonary hypertension, craniosynostosis and we are constantly battling UTIs, colds and bacterial lung infections. Each new thing has made my assurance a little less settled and made home seem that much further away.

When we reached a hospital stay lasting 365 days and celebrated their first birthday in a conference room at the hospital something shifted within me. Today as I sit here on day 420 of N’s hospital stay (now transferred to the PICU) unable to be with her due to illnesses at home, while she fights off another round of her own infections which are becoming resistant to antibiotics, I am feeling less and less of that quiet confidence and more and more screaming fear. There are days and moments within days that it feels next to impossible to make the determined choice to keep praising God.

But I have to….

And I do.

Though some days I am beyond unsettled and fear has me in its grasp so tightly I can’t breathe and praising God in that place seems impossible, I still do it. I still make space to settle myself, even if just for a moment, and cling to the stillness within that knows He is in control. I still drag my weary body to the pages of the Word and read over and over of His love and that love drives out the fear and I still praise Him because He is still with us, protecting us and walking with us and with God, we only have to summon up faith the size of a mustard seed and we can say to a mountain, “move over there,” and it will obey. With God what is impossible on our own, is now possible….

And Joy is renewed.