First note to Cori's little sister, Ava

Dear Ava,
After nine months of frustration, the paperwork to adopt you has finally been mailed to China. It makes absolutely no sense that so much should be required to adopt you, but that is the way of this world. It is just a little clue to how valuable and precious you are, that so much work goes into you becoming our forever daughter. YOur Daddy has worked through many difficulties and frustrations to get this priceless package in the mail.

We have two gifts to send you right away. One is a t-shirt with a picture of your new family on it. It says that we are coming for you, little one.

The other is a soft blanket, fuzzy on the outside, silky on the inside, with a tiger head attached. It has your name embroidered on it.

Our hope is that, like your friend from the videos, you have been transferred to a foster family so you can keep these tokens of our love as your own. We know that is not always the case.
We have asked our agency for a full update on you, your health and development, and new pictures or videos.
And tonight, in celebration that our documents are finally on their way to China, I began your quilt. Jena. Lily, and Cori all have quilts I made while waiting for them. There is fabric from Jena's quilt in Lily's, and fabric from Jena and Lily's quilt in Cori's, and there will be fabric from all three of your Chinese sisters plus fabric unique to you, little one.

Your birthday is October 1, an auspicious day in Chinese history. We will send you a cake and a square of the quilt along with pictures of those who are waiting to call you daughter and sister. And we will hope beyond hope for pictures of the occasion.

Ava, little bird in many languages, sweet melody in Persian, we ARE coming.

We will never leave you. We will defend you. We will bring the softest pajamas and the prettiest clothes and the most open hearts.
A sister will be waiting at home that can tell you about your surgeries. Two sisters wait that can tell you how loved they are here. A Daddy will not be able to sleep until you and I are under his roof. Three big sisters will be like mommas, and two brothers will growl and chase you while you scream in delight.
Day and night will come and you will be where you are destined to be.
Day and night will come. And come. And come. And you will be held, comforted, protected, adored......taught, dedicated, appreciated.
We will learn of you and from you. And we will never be the same. We don't want to be the same. We welcome you to teach us and stretch us.

Oh, how long these months have been and will be....but YOU are surely worth the wait.

Love,

Mommy

New normal

New  normal....We used to skip her nightly enema on Fridays so we could go out. New normal. That is not an option. Whatever changed in her anatomy since surgery will not tolerate one single day off.

Renal ultrasound performed and sent to Cincinnati Children's. Too a week to arrive and another week to read. Her kidneys are not swollen. Now we have waited 10 days for the scheduler to tell us when our next appointment will be. This will be a sedated scoping of the urethra to see if she can be cathed for urine. If yes, then we will be on a three hour schedule plus two new meds to hopefully expand her bladder capacity. There are no promise or projected stats. This is a  hoop we must jump through to progress.

Another hoop will be a week long stay to do a laxative trial. Massive laxatives at night and sitting on the pot in the morning, driving to the hospital for xrays of the bowel to see if it has emptied. Then bakc to your room. No outings are recommended. If she fails this week they will declare that she is enema dependent. But they have already told us she is an unlikely candidate for bowel continence.

Bottom line: You cannot get the urine port until you have tried to expand the bladder via intermittent cathing plus two drugs. You cannot get the enema port until you are proven to be enema dependent. Both ports need the appendix.

Both programs have wait times around 6 months.

Lest you think Cori is suffering, although this shoot was pre-surgical, I can assure you this is who she is every day! Except for about 2 minutes per day with rectal dialations and another 2 minutes for the start of the enema.
If we got to make our own dictionary, Cori's face would be side-by-side with her sister Jena's face under resilience entry. Lily would be in the definition of a Chinese blond.

And what will Ava be?

It has been a long time, but it went like a flame

Cori and I got home  mid/late June. I have always looked forward to summer, but this was not a year with a "summer break". Cori came home as she left. No one would EVER know how serious are her issues! Her newest Just Ducky catalog picture is on their Facebook page. Made just weeks before her total reconstruction surgery.
Wow. I just said tonight that when it is August on the calendar I will freak out. Never has there been less of a break......but Corin Malia Wright thrives.

Last Thursday her evening cleansing ritual went south immediately. If she is too full or the infusion is too fast.....whatever....she spent 15 minutes crying and 45 minutes either vomiting or beating her own head because of the pain or blowing every cell of her body to our bathroom wall.  We have had a few enemas go like this, but since our stay in Ohio/Cincy, we are now on a yahoo group where everyone shares everything. We learned to pay strict attention to the formula and infusion rate. But there was no way to fix this horrible adventure. She slept for 90 minutes after in the middle of the day.

There is a line in a movie I have romanticized since 1985. I was expecting Jessica and cried so much my nose bled. (aside: pregnant women get a pass here). So I would not let my daughter's watch it, ok. Don't judge me! I had no kids! But the Meryl Streep character tells the poorly cast love of her life/Robert Redford, that she has learned a thing.  "I've got this little thing I've learned to do just lately...When it's so hard I think I shan't go on, I try to make it worse. I make myself think...... When I'm certain I won't stand it, I go a moment more. Then I know I can bear anything.".  Two books about what women and orphans endure in China are in the mail to me. Going to advocacy blogs where I have seen the same children for years......then the blessing of rejoicing over faces who now have families! And I have to do this to keep Ava real...to keep the pain sharp enough for her and other orphans that we keep on when the bills mount above our heads....that we keep on when medical despair sets in re:Cori. (How precious did that grace appeared......if you wanted to put a face on grace, perhaps it would be Cori? Unmerited favor in Just Ducky clothing. Irony abounds.

Let yourself imagine the sacrifice you would endure for your mate or kids. Then take it another step. Let yourself imagine what you would do to ransom your mate or child from death. Then imagine you had never born or married or seen someone....and you could not ignore a God that asked you to do the same for a stranger.
Married to the most AMAZING MAN! He could be driving a new car, playing golf on Fridays and Saturdays. But he is SO content to take his girls out in clothes that embarrass me, to McDs, to Home Depot or the tire store, then have them trail him ALL day long....mowing, steam mopping the floors, blowing their mess out of an old van, running to the yard so Katherine can tell us how much she misses her little sisters while she is in Guatemala.....and how I wanted to make him stop practically beating her on the back as she hugged him and cried to leave....
But that is her daddy. That is her Abba.
My example did not show up until God gave me this man.
If Grace is an ocean we're all sinking.

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.

Thursday...

Yesterday was full of challenges. She had to go through the insertion of the PICC line in the morning. No matter how good the hospital and the child life team, it still hurts and is foreign. It also maeans many voices, including those of her trusted parents, all telling her that everything is fine. But she is not feeling fine! So the rest of the day she does not trust these oft repeated assurances. By far the hardest part for Cori was her precious dad, whom she calls, "Dada", having to go back to NC. By early evening she knew he really was not coming back, and her room had new nurses promising her that nothing would hurt. We have often remarked that she has the MOST expressive face we have ever seen....and I watched that faces crumble and crash as she told me that she wanted her Dada. Calling him on the phone just produced more sorrowful tears squeezed from her perfect almond eyes and more tremors of her baby doll lips. We were able to complete a Skype call later in the evening. It was her dad she called out to first, despite having to look past her silly smiling sisters. At one point she expanded the screen so that only his face showed. Over and over she ran her little hand, complete with pulse ox monitor, around the edges of the IPad as if she could really touch him. She rested well except for the cycles of beeps and alarms. Morning found her on her tummy in blissful peace. The pain team has removed the I'V pump since she has seldom needed I t. Now the nurse will administer when she asks. She played with the iPad for a long time, took another tummy nap, and is now watching Dora and asking the child life team for puzzles and paints. My dear friend Renae has been with me since yesterday. Cori showed her all the iPad apps she loves and has mastered. She will have to get up and walk a bit this afternoon and have more attention to her stitches and foley catheter. As her mom I am most anxious to get a consult with urology as soon as possible. Please pray we can put these questions about her future surgeries to rest in our worried minds. I have not been able to upload photos from my iPad. I apologize. I will try to figure that out soon.