There is a light

I have never woken up to so much sun light in my life. Our bedroom had two huge windows that, even with the blinds closed, could  not contain the power of the sun as it announced a new day in Cincinnati. Even when I discovered that I could pull heavy curtains over them they still shouted loudly......another day is coming! Get up! Manage.

And what will this day bring. Perhaps a family will be all smiles because they are going home! Or maybe there are fun activities and great food listed on the board of the dining hall. Maybe you will see the first smiles ever on the face of parents who are told they will leave this weekend after 5 months! Their son is finally making his own blood after 13 years,  bone marrow transplant, and the loss of both of their jobs! Maybe today Cori's friend Maggie will be discharged after complications.

There was a day that brought all of these things and more. There was a day I first saw one couple smile. And there was a day when I met one of the most remarkable women I have ever known. Her child was the cutest, most animated  little stinker ever. He just KNEW Cori wanted to be his friend. We had passed in the hospital playroom so he was bold. To my surprise I saw Cori lift her dress to show him her old colostomy scar. Then he ran to his mom to ask how long HE had been on a catheter, hoping to win the bragging rights over Cori. Later that night I saw Cori kiss him on the cheek. I had to do the PC thing and correct her, but day after day, night after night, they "hooked up". And that meant I got to know and love his mom. I was to have many encounters that were in answer to my cries for God to get real with me. How much more real can  God be than to give you someone to love? When her ride finally comes for her and we hold each other and cry............Is there ever a time God is more present?

One day the light went on in the parents of the 13 year old. He got to come to the RMcD House. Then his  blood pressures went off the chart and he fell back on his bed in seizures. And he went to Intensive Care. And the light in their eyes went out. 


There is a light above the chapel at the Greater Cincinnati Ronald McDonald House. 



Wes met a compelling case this weekend. Normal little girl doing well. Starts having seizures. Nothing works. And they have to remove the left lobe of her brain for her to live. 
And the girl with bolts in her upper and lower jaws,  halo across her face. The 4 year old who looks two with no hair. The Chinese 3 year old with the same condition as Cori. 


Another Mom, baby has to have three transplants the first months of her life. Back every year for 7 years. Nutrition from a tube from her backpack.


I went to bed very late one night with worries about Cori and Ava and what a load my absence was putting on everyone in NC.  I told God I could not do this, especially with Ava having Spina Bifida plus a likely diagnosis for other systems like Coris's plus documented developmental delays. I needed God to be real and lead me, especially about Ava, about these procedures, about Cincinatti, about everything. 


 That evening a mom I had talked to and never expected to meet got a room opening at the RMcDHouse. And I met her daughter with all the medical issues Ava will have.........I sat across from this beautiful 5 year old and I saw Ava.  And I began to believe that we could do this.

The next day Cori had her hardest tests. Multiple blood draws to determine kidney function. Before our first appt a lady asked me if I was her mom. Just then her Chinese daughter's name was called...Malia, Cori's middle name. And all morning long Cori's procedures followed Malia's. The we had time in the waiting room while a father took care of his Chinese daughters. We introduced ourselves and our children. Parents with Chinese daughters always ask what province the girls are from. I easily guessed that one of his daughters was from the same province as Lily. 



But what caused me to quake was that the one having the same testing, with the same initial wrong diagnosis from China, was not only from Cori's province, but was from the same orphanage where AVA waits for us today.


I hear you, God.  


And we came home knowing why there is a light and what it means..


If the light comes on it stays on for 24 hours to honor the RMcD child who has passed away. It came on three times this week. 


Our child will most likely not die because of her condition. But she surely would have before adulthood in China. I do not want to spend my next two or three years in Ohio, but if that is what Cori and Ava need, we will. Kicking and screaming.

Perspective

We feel so unworthy to be in this beautiful house with 80 other families, having volunteer groups bring meals every day, all the while knowing that members of our church family are lavishly feeding the ones who remain in Asheville. And we feel unworthy when we see what other parents are enduring....the bone marrow transplant families who have been here since January....and know they have months to go. The little boy who was only three when his bone marrow went to save his older brother's life. The 13 year old whose body is just now making blood....and his parents who both lost their jobs to bring him here for the only cure possible. The 2 year old Chinese little one undergoing open heart surgery. The 5 year old whose milk costs $16 per 8 ounce container and is spoiled if he will not drink it in an hour. The 5 year old from a home school family with minor heart and limb issues, spina bifida, whose surgery removed a kidney, discovered a second colon that has to be resected, who now has two drainage tubes at all times. The families here from Macedonia, Romania, Italy, and all over the United States.....desperate to make life last or improve the quality of life for their precious children. Quiet strength under extraordinary stress....heroic folks that are never mentioned in the news. And our little one who still cannot sit comfortably, where every diaper change hurts...especially since they shaved off some of hr pubic bone and she still has the catheter, who asks why she needed a new bottom and why she still needs diapers, whose skin has rashes and burn like marks from all the tape to keep things in place, who will come home for a time even less continent and clean than when she came, and who faces many more trips here with no guaranteed results. And finally, for those of you who do not know, our hearts are a little heavier than you might expect because we know of another little girl who will need this hospital and the one of a kind surgeries offered here.... We are adopting another precious daughter from China who has a similar condition to Cori plus spina bifida. We hope to travel in the spring, but the process has bogged down so many Times that we cannot be sure. Her name will be Ava Lauren. She will be three October 1. So, life is full....of sorrows, of fears,mof joy, and of new perspective on what it means to give thanks at all times, what it means to trust God with everything, what it means to take one day at a time......and on what true heros really look like.

Wednesday

Sorry I have not updated regularly. It has been busy! Cori has done SO very well! She barely needed any pain medication, got back to walking,progressed to daily trips to the playroom with her rolling tower for her pumps and catheter bag. She painted enough wooden animals to populate an ark, did a dozen puzzles over and over again, and beat me time and again with Candyland's Castle. How in the world will all of those animals fit in the trunk of our car when it is time to go home? Diaper changes are painful as well as proper care of the foley catheter, but she bounces back. One if the highlights of the day is our nightly Skype call to home. It is so wonderful to see all the faces and voices we love and miss. Despite daily requests we still have not seen anyone from urology. Dr. Pena personally asked the urologist to come by yesterday.....no show still. Yesterday Dr. Pena examined the surgical site and declared that she could have a normal diet starting right then!! Jello was the first order of business, followed by an orange Popsicle. Apple juice, eggs, m&ms and raisins finished out the night! She was SO happy! This announcement three days earlier than we had expected, was followed by the news that she will be discharged TODAY! Last night she asked me if I wanted to sleep with her in her bed, a request I had made last week. When I told her I would wait until tonight when we were back at the Rinald McDonald House she beamed. At 9 pm she was given ex-lax. It is essential that we avoid impact ion and keep things moving smoothly every day. But last night's dose was too much. She cried in pain from all of the sensitive cleaning at 5:30 am. So I pray I can get the dose right for her every day. I sm also worried about managing her urine bag and catheter by myself for another 8 days until it is removed. Needless to say, but it is hard to turn my worrying mind off at night, especially as my head hit the pillow last night. There are so many "what ifs" I can keep quiet when things are busy, but their voices cannot be drowned out in the dark. I am making my restless mind yield these pests to prayer, supplication, and thanksgiving for all God had already done. Trying to camp out on gratitude and leave fear back in the trunk of the car......with all of those wooden animals! Wink wink.