Monday, October 31, 2011
When He Made Her: Update On Ashlyn
The last several weeks all our time, energy, and focus has been on our precious 13 year old daughter Ashlyn. With you have a big family like ours... usually we feel the constant struggle of making sure each of our 6 children gets individualized and equal, one on one, parent to child time. But our sweet Ashlyn has been fighting an unseen battle and has been consuming our hearts and minds (if not time as well).
About 3 weeks ago, she came down with a high fever, rash, and severe generalized pain. After numerous doctor's appointments, routine tests, and medications (from antibiotics to steroids) nothing seemed to bring any relief. After weeks of feeling miserable, losing over 8 pounds, watching all the 80's movies she could stand with Momma, with a fever of 103.6 and a painful rash covering the majority of her body, we finally hit an all point low last Thursday night and took her to the ER. She was admitted and we have set up camp (literally wallpapering with my little pony coloring pages and "Teen Bop" posters) on the pediatric floor (first at Baptist, now at OU children's). After being inpatient for 7 days, we finally have some answers. She is having an auto immune crisis and has been diagnosed with Systemic Juvenile Idiopathic Arthritis (JIA or JRA). Seeing your child in pain is the most helpless feeling in the world. Combine that with my husband's minor outpatient knee scope a few weeks ago, and the fact I am still recovery from a major back surgery that I had less than a month ago, and we have a recipe for a month straight from the gates of Hades. I have had a pity party or two as I crave my "normal" life back but I know that I know that I know that God works ALL things out for the good of those who love Him and are called according to His purposes. And I know that I know that I know that God is ever so faithful to my family, has proved that over and over, and will again.
Once my very favorite verses in difficult seasons is found in Psalm 56:8 "You keep track of all my sorrows.You have collected all my tears in your bottle. You have recorded each one in your book." The comforting thing about God is He never misses a tear that falls and never wastes our pain. We have cried tears of fear as we watched her get very sick, very quick, and had very little answers at the time. Yesterday we cried tears of relief as we finally knew what was causing her illness and knew the enemy we were fighting. About this time yesterday I went into the bathroom and cried tears into a hospital towel (and yes He collected those too) to muffle the sound from my daughter. But I'm done trying to be strong for her.... I give up, I'm not strong enough, but we are being renewed and sustained by He who is STRONG ENOUGH for the both of us!! And her strength combined with His is an unstoppable force.
Yesterday she began initial treatment of steroids, anti- inflammatory medications, and a medication called methotrexate (its a chemo drug that has intense side effects like hair loss but Ashlyn's dosage will be so small that her treatment's side effects aren't that extreme). Today we starting a new intense treatment called pulsing steroids (basically increasing her dosage from about 10 mg to about 10,000 mg). Please pray that she tolerates it well and it will be the breakthrough we need to get her feeling better!We are praying that she may be well enough to go home by this weekend and then return to school in about 2 weeks.
But as I am looking at the baby girl in bed the next to me, who I have seen cry out in pain more times than I can count the last several days, I know that she is the toughest of the tough.
As I have been on the verge of tears several times today, God is speaking truth into my soul and reminding me what I already know about this little girl who I adore more than anything I have ever adored in my life. I know that God has numbered the hairs on her beautiful little head and He knows what exactly she is up against
("And the very hairs on your head are all numbered. So don't be afraid; you are more valuable to God than a whole flock of sparrows" ~ Luke 12:7)
God has reminded me today that despite her aching body and our questions about what is going inside of her, HE KNOWS HER INTIMATELY because he created her. Just as Psalm 139 reminds me... "For you created my inmost being; you knit me together in my mother’s womb.I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be."
I wasn't there when He made her (well technically I was but we won't go into that) but here are some of the things I marvel about the creation of this precious girl in the bed next to me:
1. Her Compassion: This has been evident for as long as I can remember...I daily catch glimpses of her compassion but here are some of the big examples that stand out.
*One day when she was about 3 or 4 years old, I remember walking into the family room where she had been watching TV and her little face blotchy from crying hysterically. When I questioned what was wrong, she pointed to the TV where she had been watching a St. Jude's telethon. Her heart broke for the sick children she saw. She insisted we do something to help and wanted to send some of her toys to "help them feel better". For years later whenever someone asked her what she wanted to be be when she grew up, without any hesitation, the answer was always an adamant "I am going to be a doctor at St. Jude and make all those kids better!"
* After a unexpectedly being forced to say goodbye to a foster sister she loved as her own several years ago, she was heart broken so badly I wasn't sure God would ever bring healing to heart. Jake and I decided that we could not longer foster children and put her compassionate heart through that again. But shortly after the adoption of her Haitian brothers, we insisted that we resume fostering again. She said that they (the foster babies) were worth getting our hearts broken again. As I watch her now playing with our current 8 month old foster baby, in efforts to protect her heart I try to remind her that Baby Z is not ours. She knows in her head that we may likely end up in the same ugly place of goodbye but that is the thing about compassionate people.... we think with our hearts and not heads.
*Another example was when we decided to become full time missionaries to Haiti, it was a family decision (we didn't want to be one of those parents who dragged their children to the mission field). So we presented to them the idea and a realistic picture of what sacrifices this move would bring. We wanted them to pray about and really really consider it before committing. Within minutes, Ashlyn said "I don't need to think to about it. This is what God is calling us to do and people need us there. I'm going with or without you guys!" Our first trip there, my heart swelled with pride as I watched her play with children at the medical clinics where we were working. She quickly became Haitian children's favorite "blanc" on the block. She spent time working triage with me at the clinics and at night, we would debrief about some of the patients we had saw that day. I watched her cry as she realized they spent all day waiting to be seen by a doctor (many of them for the first time in their lives), cry over a newborn baby so dehydrated and malnourished she was on the verge of death, and cry over all she was seeing with her own eyes for the first time. Again all the talk about becoming a doctor to help sick children resurfaced but St. Jude would have to share her time with the children of Haiti.
* Another example was just last month, I had a date day with her and we went to see the movie "The Help". Because we are both "ugly criers" we made it to the van before we both burst out in tears (and literally cried the whole twenty minute ride home). Through her tears she verbalized her frustration over Christians acting not very Christlike (the movie was set in the 60's at the dawn of the civil rights movement in Mississippi, during the weekly bridge club that main character attends with several "christian" friends discussion centers around their belief that all homes should have separate bathroom facilities for the "colored" help). Somehow with the stellar education, Ashlyn has received she was naive to the civil rights movement and things like the KKK. Words seemed to fail me as I tried to explain that dark time in our nations history. So we just cried together. that conversation led to another one in which Ashlyn expressed how she couldn't imagine her life without her Haitian brothers and despite some blatant and some subtle prejudice and criticism we have received, she encouraged me that no matter what anyone though of our decision to adopt and foster, we would never regret our decision. She said "Mom you know how you and daddy are say/ pray that you are raising us kids not to survive the world but change it? Well don't worry, we are!" She also informed me in that conversation that despite the chaos and sacrifice our big family requires that she plans to have 11 kids (3 biological and 8 adopted or fostered). Once again my heart melted at her compassion and desire to change the world (I also kicked up my praying for her future husband/ baby daddy of my future 11 grandchildren).
I have been told that I am a compassionate person but my compassion pales in comparison to hers. I love that when He made her he added extra doses of compassion!!
2. Her Chattiness: When Ashlyn started talking, she went straight from one or two word sentences to entire paragraphs. I have been exhausted since the day she began talking. When she was in preschool, we had a 45 minute commute everyday from Norwich to Wichita... I have a vivid mental picture of her sitting in car seat, kicking her little legs back and forth, and chatting about everything from random questions to "why did those bad guys have to kill Jesus?" Question after question and sentence after sentence all day long, followed by the same phrase "right Momma, right?" Also at that same time, my dad would frequently take her and Drew from Wichita to Denver to visit my sister. Most kids would nap (especially in the boring stretch of western Kansas) but not our Ashlyn. She could chat the entire 12 hour drive.
(Somehow in the car we always have our most in depth and memorable conversations. That is why I love the verse in Deuteronomy that talks about talking about the Lord when you are on the road... "And you must commit yourselves wholeheartedly to these commands that I am giving you today. Repeat them again and again to your children. Talk about them when you are at home and when you are on the road, when you are going to bed and when you are getting up.")
If you have spent anytime with her daddy, it doesn't take long to see where the chattiness comes from. His profession is one that requires him to talk (and have a captive audience one day a week). Somehow I see her in a similar profession one day... one in which she is paid to talk to people all day.
Also like her dad, she can be loud and very outspoken about things she is passionate about and the injustices she sees in our world. Even at the tender age of 13, she models Proverbs 31:8-9 better than most adults I know. ("Speak up for those who cannot speak for themselves,for the rights of all who are destitute. Speak up and judge fairly; defend the rights of the poor and needy.")
Although it can be exhausting for an introvert like myself, I love that when He made her He made her chatty!! Her chattiness is the overflow of a heart that just loves people. God has used her chatty self to bear witness to others around her. She loves talking but she really LOVES TALKING ABOUT JESUS!!
3. Her Love for Children: She is a magnet. Children of all ages are drawn to Ashlyn and she her face literally glows when she is around kids. She can name each and every child/ infant that walks through the doors of CHCC. She eagerly jumps at every opportunity to help out in the children's ministry at church. Every Sunday morning, she wakes up to go to church with her Daddy at an ungodly hour just to help wherever she can even if it's just to help with her foster sister or babysit other children whose parents are on the worship team. She loves to babysit and usually tries to insist on providing it for free (or to raise money to go back to Haiti). I love that when He made her He created her in His image (Mark 10:13-14 and Genesis 1:27)
Although I was not there when He made her, the evidence that she is fearfully and wonderfully made is overwhelming. Compassionate like her Momma, chattiness like her daddy, and an unexplainable magnetic attraction for children like her Jesus. Despite all chronic illness, she is flawless.
My heart melts every time I hear her sweet voice call me "Momma" but I am confident that the very heart of God melts every time she calls Him "Savior God"!!!