Happy Birthday to Anna!!

My baby is five.

It's hard to believe sometimes, especially after everything that she's been through. Every birthday is a celebration, not just of her being with us, but also of the progress she's made the past year.

Anna's birthday party will be small and we'll celebrate it with my parents on Super Bowl Sunday. We also sent cake and ice cream with her to school today as a treat for her and the other kids.

A day of extreme joy and sadness

First, let me just say: We're going to China!!! I'm excited to say that we received our Letter of Acceptance (LOA) from China today; all we're waiting on now is our Travel Approval. Our adoption agency has told us that, assuming everything goes OK, we will travel to China to get Julia in the next four to eight weeks!! I'm hoping for the shorter end of the time frame, of course. In the meantime, we have to start finalizing our paperwork and getting our visas in order. There's going to be a LOT to do these next few weeks as we prepare to travel. Our LOA will get to us from the agency by Monday. We then sign it, get it back to our adoption agency and they will send it on to the CCAA (China Center for Adoption Affairs). By the time it gets to China it will be the end of the Chinese New Year and hopefully the Travel Approval will get processed quickly.

On a more somber note, for those of you who don't yet know, we've been at the hospital with Anna since last night. She's been battling a bad stomach virus and finally we needed help from the local children's hospital to stem the vomiting and keep her hydrated. I'm happy to report that she seems to be doing much better today and we should be discharged tomorrow. There are also two other "mito" families at the hospital at the same time and my thoughts are with them as well. The child of one of those families is in very serious condition and it pains me to think of this. I honestly feel that I have nothing I can realistically complain about when I know they're going through such a hard time right now. Our situation seems like nothing in comparison but times such as this always keeps my priorities in order and reminds me how much I value and love my family.

We're at Children's Healthcare of Atlanta at Scottish Rite. It's such a phenomenal hospital and it's worth the long drive from our house in order to get Anna the great care she receives here. One of the great things about CHOA is that not only do they treat the kids great, they also try to pamper the parents (well, as much as is possible at a hospital). We truly value having such a great hospital fairly close to us.

Congrats to all of my online adoption friends who also received their LOA today!! We'll be travelling together soon enough.

Update: Anna is feeling much better now. She was discharged from the hospital on Friday and seems to finally be over the virus.

No different than you

I saw this in a recent edition of the FOCUS newsletter. Recently someone said to me how strong Jason and I are for taking care of Anna the way we do. When I saw this in the newletter I started to cry because it was so similar to the way I sometimes feel that I could have written it. Thank you to Lisa Ringenberg for writing it. But, here it is:

No Different From You ... by Lisa Ringenberg (FOCUS atlanta group)

One day, I was over it, you know? I’ve heard the same thing too many times when what I really needed was a hug or something (a big cry probably!). I ended up writing, as I usually do, and this is what came out. I thought I’d share it, because I am sure that people hear this same type thing when going through a divorce or losing a job or whenever we wear our brave face. I think sometimes saying nothing and just sitting with the person is a gift that is worth its weight in gold. We are all “over it” sometimes and just need a good cry, right? 99.9% of the time I really am just fine; I know you won’t think less of me for knowing the real truth. I hope this somehow serves you too:
You say “Special children are given to special parents.” I am no more special than any other parent. Truth is, sometimes I feel like not running this race and I am barely hanging on. I do not have super powers or special abilities to make this load any easier than if it happened to you or anyone else. My burden is the same as it would be for anyone else, I just don’t bore you with the details. Truth be known, many parents given the same circumstances as me, walk away.
God didn’t pick them as special parents, now did he? I am no more special than anyone else.
You say “I don’t know if I could do what you do.” I don’t know each day if I will be able to do what I have to either. Can I bear hurting her one more time, or staying in the hospital for another week? I don’t know either, but the last time I checked, I had to. My only other choice
is to lose my daughter to someone else who can step up to the plate, so I have to. There is no choice here. I don’t set out to be super woman everyday and see how much I can endure. I don’t want to play this game or live this way, I don’t choose to, I have to, there is no choice.
Do you really think there is a choice involved? Many, many mornings I wake up and think I can’t do this anymore. But I somehow do. You say “You are always so strong.” No, I am not. Saying so makes me realize that you do not know me. I cry, and I hurt like you would never imagine. I am sick with worry and fear and my own life has passed me by while I was hanging onto every day with my kids. Hoping for just one more day with her. I cry alone, I cry out loud, sometimes I shed just a single tear to make a little more room for some other emotion. There is no one who can make this better, I am alone, I am scared, I am not in control and I am beyond sad. I am not strong. You should know that if you think I am strong, you just haven’t seen me break down yet. I am not super-human, I am not above it, I am not beyond it. I am like you and it hurts like hell sometimes. Actually, more often than you probably could imagine. Whew, that feels better!

Madison Ringenberg will be 6 in January. She is moderately compromised
with DiGeorge syndrome and Tetrology of Fallot. We are preparing now for
her 3rd open-heart surgery.

For more information on FOCUS (Families of Children Under Stress) please go to http://www.focus-ga.org/

You know you parent a special needs child when ...

You compare ER's instead of grocery stores.

You compare your child's oxygen saturations.

You view toys as "therapy."

You don't take a new day for granted.

You teach your child HOW to pull things out of the cupboard, off the bookcases, and that feeding the dog from the table is fun.

The clothes your infant wore last fall still fit her this fall.

Everything is an educational opportunity instead of just having plain old fun.

You cheer instead of scold when they blow bubbles in their juice while sitting at the dinner table (that's speech therapy), smear ketchup all over their high chair (that's OT), or throw their toys (that's PT). You also don't mind if your child goes through the house tooting a tinwhistle.

You fired at least 3 pediatricians and can teach your family doctor a thing or two.

You can name at least 3 genes on chromosome 21.

You have been told you are "in denial" by at least 3 medical or therapy professionals. This makes you laugh!

You have that incredible sinking feeling that you've forgotten SOMETHING on those few days that you don't have some sort of appointment somewhere!

You get irritated when friends with healthy kids complain about a sleepless night when they're child is ill.

Your vocabulary consists of all the letters OT, PT, SP, ASD, VSD, IFSP, etc.

You keep your appointment at the specialist even though a winter blizzard is raging because you just want to get this one over with.....you waited 8 months to get it.....and besides, no one else will be there!

Fighting and wrestling with siblings is PT. Speech therapy occurs in the tub with a sibling.

When potty training is complete, you take out a full-page public notice in the Washington Post.

When the Doctors/Specialist/Hospitals etc. all know you by your name without referring to your chart.

You keep a daily growth chart.

You calculate monthly statistics for the number of times your child vomits, and did this for more then one year.

You phone all your friends when your child sits up for the first time, at age two.

With a big smile on your face you tell a stranger that your four-year-old just started walking last week.

Her medical file is 25 inches and growing.

You have a new belief...that angels live with us on earth.

There's busy, and then there's busy

Have you ever had a week when you wonder how you’re going to fit everything into the week? That’s us. Every week. Some weeks better than others, but I digress.

First our jobs as police officers comes with its own demands. Unpredictable schedules, odd days off and working late just come with the job.

Then we have Anna’s therapies. Every week she has preschool Monday through Thursday from 11 to 2, plus she has physical therapy, pool therapy, music therapy, occupational therapy and speech therapy. Some people shake their heads when they hear about her schedule, but do you know what? It really wouldn’t be much different if she was a typical kid. Instead of pool therapy she would have swim lessons, and music therapy might be a day at Gymboree instead. So, it’s all relative.

Doctor’s appointments. No explanation needed there.

Adoption paperwork and planning is kicking into high gear, and I’ll address that more in depth soon. Speaking of adoption, Julia might have issues of her own and we’ll meet those challenges head-on.

So, we’ve been extremely busy lately and sometimes I wish for a few days when I don’t have to do ANYTHING. But do you know what? Last week Anna was able to stand alone in the pool for two minutes at a time, several times, during pool therapy. It’s all worth it.

So when you're so busy that you want to scream, I hope you find your gem amid all the madness.

Julia's room!

After a lot, and I do mean a LOT, of discussion we've finally settled on a pattern for Julia's room. We wanted something that will be pretty but not too babyish, and I think this will be perfect for her. Hopefully the order will come in this week and Jason will start painting (and he is so excited about that. Not. ) I will post some pictures when everything is finished.

Update: The bedding set came in today!! It's even more beautiful than it looks in the picture! Hopefully we (and I actually do mean "we") can start painting this week.

Redefining "lucky"

Ever since we got matched with Julia I've heard many people tell me how lucky Julia is. I don't blame them for saying so; if I hadn't been around the adoption community as much as I have I'd probably say the same thing. After listening to what many adoptive parents have to say I'd be more inclined to say how unlucky my new little girl is. Jason and I are the lucky ones.

Let's examine this a little more closely. We have a little baby who, in her first year of life, has been abandoned by her birthparents. She's now with a foster family who, I hope, love her (it is not always the case with foster parents.). In a little over a month she's about to be ripped away from them for reasons unknown to her. See, we've been waiting for her, and for a very long time. But the reality is she has NOT been waiting for us. Then, she will be taken away from the only place she has only known, a place where the smells, sounds, foods and faces are familiar to her. She will be taken halfway around the world by virtual strangers to a place completely foreign to her. As she grows she will have to learn to trust that this set of parents will not abandon her or turn her over to another new set of parents. She will also have to come to terms with the fact that she was abandoned and will probably never know the reasons why. I only hope I can help her work through these issues along the way.

It worries me that many people will tell her how lucky she is. As she grows up I don't want to her feel like she "owes" us for adopting her or that she "should" feel grateful to us. I only want her to appreciate us in the way that a child should appreciate his or her parents, regardless whether it's a biological or adopted child. And, the parents should also value the child in the same way. No one "owes" family anything. If she thinks "I love my family" the same way I do, then I've succeeded.

So is she lucky? Well, I don't think so, and that's just my opinion. But I know we are.

The night of "The Call"

Some say that blood is thicker than water. I say that love is thicker than blood.

Many of you know by now that we seemed to be in a perpetual wait to be matched with a child. Based on the timelines I was hoping we'd be matched by the end of 2008 but on the other hand it didn't seem real since we'd already been waiting such a long time. But, it finally did happen and it caught us completely by surprise. Here's how it went down:

Gwen: So, it was the middle of the week and I was at work assisting with a homicide investigation. It was around 5 p.m. and I'd just returned to the police department and was waiting for other detectives to get back so we could discuss the case. Jason called me and said, in a very low, odd tone: "We have a baby." I was busy and I thought he meant he picked up Anna from the babysitter. He said again "No, WE HAVE A BABY." I finally realized what he was trying to tell me and I began jumping up and down in my cubicle. Jason emailed me Julia's picture and the paperwork from our agency while I tried to recover from my shock and called family. Luckily my supervisors were VERY understanding and they let me go home so we could celebrate.

Jason: I was home with Anna when I received a call from a CCAI representative and of course I knew right away that it something important because there was no other reason for them to call. I was worried that maybe something was wrong with the paperwork. It didn't register at first what she said. She said "Hi, this is CCAI, I'm looking at a picture of a beautiful little girl that needs a mommy and a daddy." I hate to say it, but I don't remember much after that. I remember she told me the basics, such as her date of birth, and the fact that she has a cleft lip and palate. I also remember her asking if we were interested in her, as if there was any doubt. She agreed to email me the pictures and information and I told her I would call Gwen and tell her.

_______________

We submitted our Letter of Intent to adopt Julia to our agency and it was sent to China on December 10. We received PA, or Pre-Approval, from China on December 29 and we are now awaiting the final Letter Of Acceptance (LOA) from China. A few weeks after we get LOA we will receive the Travel Approval and we will go to China from one to three weeks later. We hope to be in China at the end of February or beginning of March. We won't know the exact dates of travel until we get the Travel Approval. It's a lot of hurry up and wait, but let's face it, we're dealing with government agencies.

Once we get the dates we'll finalize our itinerary, which I will share with you of course. While we wait we are preparing Julia's room and learning about China and Julia's province. Julia, meanwhile, is being cared for in a foster home in Henan province. I'm very grateful to this foster family for loving her until we can get to her.

Here she is!! Our second little lovebug

Introducing Julia ...

Dang Xi Zuan,

soon to be

Julia Xi Zuan

DOB 12-24-07

Waiting for us in Kaifeng, Henan province

"Not flesh of my flesh, nor bone of my bone, but still miraculously my own. Never forget for a single minute that you weren’t born under my heart, but in it."
Anonymous

Our first little lovebug, Anna

On January 27, 2004, Jason and I were blessed with a beautiful little girl. Everything seemed as perfect as I hoped it would be. Most people don't prepare themselves for the possibility that medical issues can sneak into the picture, but that is what happened with us. Anna is perfect all right, but she did come to us with a very serious medical condition called mitochondrial disease.

When she was five weeks old she began having small seizures and thus the long, arduous process of tests, tests and more tests began and lasted for several months. We visited a pediatric neurologist who steered us to a geneticist in the Atlanta area. This geneticist, Dr. Fran Kendall, wanted Anna to have a muscle biopsy as a final attempt to figure out what was causing the seizures. When Anna was 8 months old the biopsy results came back to show that Anna has mitochondrial disease, complex 1. In short, the mitochondria in her body don't produce enough energy for everything to work as it should. Depending on the location of the defect in a specific person's mitochondria, the symptoms can vary widely. Researchers are finding out more about mitochondrial disease including the likelihood that it's related to other major diseases such as Parkinson's, Alzheimer's and even autism. For more information on this disease go to www.umdf.org.

In Anna's case, her defect has resulted in seizures, developmental delays and sensory issues. We're fortunate that overall she's been medically stable and she keeps progressing. She's a very happy little girl and she loves going to pool therapy and music therapy. The seizures are difficult to handle but we do the best we can.

Many times it's difficult to juggle the various therapies and the fact that Anna's prognosis is unknown is sometimes hard for me. But Anna has also bestowed unexpected gifts upon us. It's easy to love the child who sails and excels, but for the child who struggles the depth and quality of love ends up being breathtaking. Anna has stretched me the furthest and taught me the most. She has taught me about bravery and perseverance, strength, grace and humility. When I look at her I see the courage of a fighter and the heart of a hero.

Welcome

Family and friends,

Thank you for choosing to follow along with what I believe will be one of the most amazing experiences of our lives. We will be bringing home a child from China who, although we didn't have a face to the name until recently, has been in our hearts for many months and we are so excited to finally bring her home. So, I decided to do this blog for a couple of reasons. First, I hope it will make it easier for you to follow along during the trip to China as I plan to give daily updates and photos whenever possible. This blog will also give an opportunity to share information with those who don't get to see us very often and aren't familiar with what brought us to this point. Finally, even though this blog will focus on the trip to China, I'd also like to share information about Anna and spread awareness about mitochondrial disease. I hope you enjoy the blog.