Monday, September 14, 2015

Dark Skies and Rainbows

     We have the incredible blessing of using a friend's cabin from time to time. A few weeks ago I was itching to get away and decided to venture off to said cabin with Lydia in tow for a four day mother-daughter adventure before Joel would join us for a few more days. I could not wait to get to the water's edge and just relax. Apparently, I forgot that I was bringing Lydia on this mother-daughter adventure. "Lydia" and "relax" have never been found in the same sentence to date. For starters she is a delightfully, strong-willed child. I say "delightfully" because I truly am delighted when I think of what a fantastic adult she'll make. Someday. If I survive raising her to be one. :) Lydia is also incredibly social and loves to have pretty much constant interaction. Playing by herself is something she only feels the need to do about twice a week for no more than 10 minutes. All my hopes of her entertaining herself at the water's edge while I sat next to her and read a book were pretty much trashed within a few minutes of our arrival. We did have a great time splashing, throwing rocks off the dock, touching every tree on the property, and dutifully clearing the deck of each and every spider web we encountered. I din't know she had such a severe dislike of spider webs until she grabbed my hand and pulled me over to the deck railing as she pointed and said, "Uh oh" repeatedly. I asked if she would like me to get rid of the web. Her eyes lit up, she clasped her hands, and excitedly replied, "Ohhhh. OK!"And so played out the next 30 minutes of the day. And I thoroughly enjoyed every minute of it! She really is so so fun to play with.

     Lurking behind all our fun and "relaxation" was that ever present spina bifida. We just can't seem to catch a break from it this summer! Within 24 hours of getting to the cabin I thought she had a UTI and debated about finding an urgent care or driving home. Then the pooping started. I'm not exaggerating when I say that for 2 days my poor baby barely had 60 seconds at a time with no poop in her diaper. I would change her, walk to the door of the bedroom and there would be a significant amount in there again. Lydia was less than thrilled with all the diaper changes. She conveyed her feelings to me with lots of kicks to my face during diaper changes and cath sessions and then added in some hair pulling for good measure. She was frustrated. I was frustrated. She cried. I cried. It was exhausting. Then Joel showed up and life got better as it usually does when he is around! After some lovely days together, we were happily packing up to go home when Lydia started having wet diapers. In Lydia's world, wet diapers=UTI. I drove home thinking about who to call first in the morning and which clinic to drop her urine sample off at this time. Sigh.

     Thanks to my amazing husband I was driving home in a kid free car. It was almost weird to be able to have a complete thought. Weird and wonderful that is. I threw in one of my old mix CDs from the one and only Sara. Belted out "Defying Gravity" from Wicked - a few times. And then, after singing a few more songs I might not admit too, I finally gave in to what I knew I really needed to do with my time - I started to pray. I had been reading in the book of Psalms the day before and had read a verse about "pouring your heart out to God". I knew I needed to do just that. It's hard to start when so much of what will come pouring out is so ugly and so painful. I often feel like people don't know what to do with the heartache I let spill out at times. So I become ashamed of it and try to hide it. But nothing is hidden from God so you might as well spill. I cried out about a dear friend with cancer, a sweet friend whose marriage is ending, and about relationships in my life that are painful and broken and confusing to me. I cried about how much I miss my sister and need her by my side to raise my special child (twice a year visits aren't cutting it). I cried about how lost we feel in Lydia's health issues; there seems to be no solid plan for her in sight. I cried because seeing my baby in pain several times this summer hurt in places I didn't know existed. I cried because my never ending exhaustion seems to keep me from being the person I want to be and keeps me from loving all the broken and hurting people around me like I should. The sky was getting darker and darker as I approached the cities. The almost black hue surrounding me seemed to fit my state of mind perfectly at the moment. And then IT happened... The vibrant colors of a rainbow stretched across the blackness in front of me. I could see almost the entire arch and the beauty of it made my heart soar. I'm sure lots of people enjoyed the rainbow that night, but I swear God put it there just for me. He sent me all those beautiful colors as a reminder that He sees every tear that falls and that I'm not alone in this fight. The darker the skies we face, the more beautiful the rainbows we get to see. God is so good.

     I wish I could say that all has gone well since that drive home. But that just isn't real life is it? Our life seems to be ruled by poop. There has not been a day this summer that Lydia pooping or not pooping has not stressed us out. We started summer with a severe bout of constipation that made her poor stomach so distended all the veins were fully visible and she began puking every time she tried to eat. Broke. My. Heart. Well we learned that severe constipation causes Lydia to get a UTI. When we finally reversed the problem and dealt with a non-stop flow for a day or two - she also got a UTI. Her primary MD, whom we love, exclaimed "Oh my gosh! We just can't win!!!" And that is how we feel when it comes to keeping this girl healthy - we just can't win. As I'm writing this we have yet another culture pending in the lab, that I know will show a UTI. I have lost count of how many times we've been at the doctor's office this summer. The amount of time I've spent on the phone with different clinics this past month qualifies as a part time job. Everyone's consensus is that if we could fix her poop problem, the UTIs would probably go away. Yet, we can't find a consistently effective way to clean her out without extremely undesirable side effects.The last two stimulants we've tried have made her lie on the floor and moan and rub her blanket on her face. I just can't do that to her daily. I read a facebook page almost daily where other SB moms, whose lives are ruled by poop, talk about what works for them. There is a surgery they can do at age 5 to promote social continence that we feel very hopeful about. But we are a long way from 5, and days of 14 diapers before midnight are going to make life difficult for her long before then. Our current GI doctor doesn't seem to keen on some of the things I've read about doing until then. Our primary MD disagrees and suggested taking her to a specialized SB clinic. She sent a referral to one, but they don't have any openings until mid January AND they don't have a GI doctor. Sooo... we just don't know what to do at the moment and we would love your prayers for wisdom. In May, we got nothing but good news from her bladder test and spine MRI. The doctors said we wouldn't need to do them for another year. Now, because of Lydia's continued health problems they want to redo both tests this month. Please be praying for her bladder test on September 15th (tomorrow) and her spine MRI on September 30th. We would love some answers and for some light to be shed on a better plan for Lydia.

All the confusion about what to do have made the skies really dark these last few weeks. But the rainbows have been there too. On a day when I was really discouraged and felt like I was failing my daughter a sweet friend sent me the most encouraging text full of words my heart needed to hear. There are the precious friends who tell me not to worry about bringing anything to our lunch play date when they know we are coming straight from a MD appointment. Joel and I aren't very flexible with our times for date nights since we have to plan around Lydia's cath times. But yet another sweet friend took a late shift at the Korkki Casa and let us go to late night happy hour (where we had a very detailed discussion about Lydia's pooping status. I was desperately hoping that the cute couple next to us, obviously on a first date, couldn't hear us.) And then there is the person who has loved our child and us in ways we can never repay. There are many more I could list - this is just in the last month! If we didn't go through dark times, we would never be able to experience the rainbows found in the depths of God's grace and love played out by people around us. Thank you to all who have painted those rainbows around us.