Conference Time

I am kind of dreading, and kind of looking forward to, the events of this weekend. Beginning Thursday evening, we will be attending the Noonan Syndrome Conference 2011 in Chicago.

Our son, Carter, was diagnosed with Noonan Syndrome when he was about 24 hours old. In the immediate hours after Carter was born, we were blissfully ignorant that anything was wrong with Carter. It wasn't until the pediatrician did her rounds that morning that Carter's heart murmur was first detected. I was all by myself when my sweet little baby was whisked away because something was wrong with his heart. (Casey had stepped out to get breakfast or something). You can imagine my shock. We quickly learned after his echo-cardiogram that he had pulmonary stenosis.

With this diagnosis in hand, the geneticist was called. She was a gracious, helpful and kind woman, but all I could hear ringing in my ears were words like "dysmorphic features, webbed neck, low-set ears, concave sternum" and "Noonan Syndrome". She warned us against researching this on the internet just yet. She wisely counseled us to just focus on our baby and not go wild with worry.

Carter looked perfect to me. This mama saw nothing dysmorphic about her baby.

Okay.

We successfully waited until we got home, and then Casey hopped online. I couldn't look at all the information just yet. All I needed to know was, would Carter die from this and would it be so noticeable that he would be made fun of by other kids? Sweet relief passed over me as Casey relayed that he could have a normal life span, but he could not reassure me that he wouldn't be made fun of.

We attended our first conference when Carter was nine months old. The conference was a swirling blend of emotions for me. Carter had not yet been touched by many of the issues others were discussing. Would Carter have those same scary symptoms some day, or was he "milder"? We met adults who never even knew they had the NS until they were adults- their lives relatively untouched by the syndrome. There were teachers, a doctor and business owners all with NS. There were others to whom the more challenging aspects of NS had not been as kind.

Which camp would Carter fall into?

At the conference, we were able to meet Dr. Noonan, the amazing cardiologist who first identified Noonan Syndrome as a distinct syndrome (it had formerly been confused with Turner Syndrome). She actually held Carter and confirmed what we already knew, Carter had Noonan Syndrome. I knew it, but it still hurt.

Today, I embrace the challenge, but it still knocks the wind out of me sometimes.

Carter is six now. He has had six heart surgeries. He has a pacemaker. He has seizures. He wears SMOs. He has physical therapy at school and extra after school. He has occupational therapy and speech therapy. He has a bleeding disorder. He has a teacher's aide. He wears glasses and hearing aids. He is quite short for his age. He has life-threatening food allergies. He didn't start walking until he was three (anyone remember how adorable he was with his walker? how utterly proud he was? how about before that when he scooted everywhere on his bum? adorable!). He has hyper cardiomyopathy and arrhythmia issues. He looks more like the kids on the Noonan Syndrome website than his own family.

Having Noonan Syndrome has been no blip on Carter's radar.

To this year's conference, I go as a much wiser mom. I am wiser because of the experiences I have gained raising Carter. Medical experiences- oh yes! I know more about cardiology than I ever, ever wanted to know. I have also gained a much deeper, more compelling, wisdom. You see, I know what a miracle looks like. I know what sacrificial love feels like. I know the brokenness of not being able to fix my baby. I know the awe of watching a doctor save my child's life. I know the gratitude I have for my friends who saved my sanity, my husband who held my head up, and my family who called out to God when I did not have the words.

I will go and I will learn new things that will help me parent Carter better. I will share my stories with parents who get it. I will cry because it hurts to have to be there. I will laugh with these sweet children because they are laughing despite it all. I will be inspired by the adults who didn't give up. I will hug a doctor because of the sacrifice she makes for our children.

And, I will return home as grateful as ever for my boy, because he is Carter, and he is perfect to me.

A Divine Appointment

One of the highlights of our vacation was a divine appointment with a sister in Christ whom I had not met before. We met at the top of one of the Warren Dunes when we offered to take pictures of each other's families. Of course we were drawn to each other because one of her children was adopted, and of course she noticed our family couldn't not have been formed merely by birth.

In the way that can only happen between women, our conversation moved immediately to deep matters of the heart. She shared something so beautiful with me, I pray it will never leave my heart. She told me about her struggle with infertility and how God moved their hearts towards adoption. In the weeks following her husband's return from China to pick up their little one, she gave birth!

She shared how many people asked her if they would stop their adoption process once they found out they were pregnant. Her response, "no! that would be like an abortion!". I don't know that she actually shared that verbally with anyone, but that is how she felt in her heart!

She shared how the verses of Isaiah 58:6-12 have taken on a new depth and richness. These verses talk about when you spend yourself on behalf of the poor, your healing will quickly appear. She knows that when she and her husband heeded God's call to take care of the widow and the orphan, she was healed. She knew it wasn't simply a matter of, youknowifyoudecidetoadoptyouwillrelaxandgetpregnant. She placed her whole hope in God, obeyed his precious call, and she was healed.

I know this is not every woman's experience and I do not believe adoption is the prescription for infertility. I do know God heals in all kinds of ways. Our adoption journey did not start from the desert of infertility, but through this divine appointment on the top of a sand dune, I began to see the ways God has healed me, changed me, grown me through our two adoptions.

I am beyond grateful to my God who heals both parent and child when he weaves family together through adoption.

We're Back!

Thanks, Sheli and Beth for filling in for me while I was gone. You two bring me so much joy and I continue to stand in awe of the God who drew us to each other.

We had a GREAT trip. Everyone stayed healthy, we had great weather and lots of bonding time. I came up with about a million things to blog about while we were gone, but for today, I'll just have to leave you with some pictures that express our time together.

lessons not yet learned

i think of myself as a pretty strong cookie ( as strong as a cookie could be). so when we decided to embark on the adoption roller coaster and by roller coaster i mean the highest high and the lowest low i thought i could handle it. i was quickly proven wrong. i tend to forget how much i hate roller coasters. like i would rather eat gum off the sidewalk than go on a roller coaster. but we as a family prayed about this. sought advice of amazing friends and we knew we were meant to bring home two more little ones from east africa. and then we got on the roller coaster. let me tell you this is a rough one. some days we love it. we love to tell people the story of how God brought us here. we love to share the mission of amazing organizations like project hopeful, ahope, samaritans purse and world vision. we love to hear our children pray at night that their brother and sister feel the love of Jesus around them.
and then the roller coaster gets rough. like i want to puke from too much cotton candy rough. we see others get babies come home. we see courts close. we see others complain. we see friends wait years for a word of their child. we see adoptions fall through. we hear the racism from those around us. i read too many blogs of families united. i read too many facebook updates and adoption time lines and compare.
and then i realize. this is our roller coaster. not anyone elses. no need to compare. no need to puke. no need to worry. God has it. He has always had it. and i need to learn these lessons.
lessons on not reading all the blogs. lessons on not comparing. lessons on praying. lessons of being on my knees for the children here and there. lessons on being a witness to those around me. lessons on being willing to stay on the roller coaster.
http://shelimassie.blogspot.com

Intertwined (another one from Beth)...

My friendship with Erika is a tale of good things coming out of bad things. It’s also a story of our lives being slightly intertwined since before actually meeting each other. I moved to Aurora on the heels of a broken engagement, not knowing a soul. Fast forward a few years, I was going to a great church, I was married, and had just had my first baby. Our first babysitter for Sara was a sweet teenage boy in the youth group we were leading, who turned out (I found out recently) to have had a crush on Erika back when they were in elementary and middle school respectively. Small world, right?

It gets better. I wrote a book about ten years ago and the book cover photo was taken in a local backyard. The backyard of a friend of Erika’s mom. Erika’s mom bought my book, just because of the cover being shot in her friend’s backyard, and gave it to Erika who was a new mom and living in Minnesota at the time. So, Erika read my book before knowing me in person.

Move ahead again, and Erika and her husband find themselves visiting the church I had been attending for about eight years by that point. I saw them the first time they visited, and fearing they were too cool for our congregation – and that therefore they would leave – I walked across the aisle, introduced myself, and then introduced them to the pastor, hoping to lock them in, so to speak. At that point, she didn’t know it was me, and I didn’t know she’d read my book.

A few weeks later, I invited her and her family over for dinner, and while eating, she told me that she had read my book already. I believe I said, “Wow…you know way more about me than I know about you…” and we laughed. She went on to tell me that she was signed up for one of my talks at the upcoming Hearts at Home convention.

We’ve gone on to live so much of life together in the past ten years. Jesus has intertwined our hearts in ways we never would have imagined had someone told us the day we met all that was ahead for us. I may have ended up here because of a broken heart but I am beyond grateful for Erika and ten years of knowing her and having her be one of the truest, most constant people in my life ever.

Now you can really come home, E…

http://elisabethcorcoran.blogspot.com

yet another friend,,,,,

so while erika is beaching it up......she trusted me to write on her blog. ok maybe not so much trusted as just gave in to my begging. whatever the reasoning i am pleased with the outcome.
this week marks a pinnacle moment in our relationship. you see i am not a forever friend of erika. i don't remember her in braces. i never rocked out to rem with her when they were cool ( although they never stopped being cool). i wasn't even a member of her fashion forward wedding party. i regretfully never even got to be prego with her. nope. nada. none of it.
you see we met at church. boring right? stop yawning and just hear me out. you see i approached her. i am sure you expect me to say i probably approached her because of her adorable family, her gorgeous smile...nope. she had cute hair. that's it. she had adorable hollywood chic hair and i wanted to selfishly know where she got it cut. that is how shallow our relationship started.
that was almost five years ago. and things never looked the same.
i am doing a bible study right now " seeking a heart like His" -beth moore ( or as i like to call her bff) and one of the points she makes is ..."maybe you are not where you want to be but you are not where you used to be".
and wow i am so not where i used to be. you see five years ago this is where i was...
*new church( hated being there)
*left church i loved ( all my support was there)
*prego with fourth child( big fat whale and depression that was going to swallow me)
*fulltime job ( added more stress than one human should ever have to have)
* new house ( ok . new to us. but built over 100 years ago and that is always fun)
* no sense of community( lonely. so sad. and did i mention lonely?)
*begging my husband to switch jobs ( i am a michigan girl....love the beach...)
and now its five long years later...
* new church...is home. love everything about it. couldn't imagine my life without it. and i met erika there....
*not prego ( thank you Jesus...but we are adopting two more kiddos from east africa...call me crazy...that makes six. yep six little mouths to feed, love, hold, kiss.....
*working at home. writing. ( and loving every minute of it)
* community? i have the most amazing. loving. changing the world because of Jesus kind of friends. i have been to africa with them. served the hurting and the poor with them. i have a group of women in my life that i adore and love more every day...
*husband at same job ( and its ok. its really ok. God wants us here)

so although i am not where i want to be (africa- that's a whole other story) i am not where i used to be. and although i still struggle with the loneliness and my kids not all being in the same country right now. i know that i will not be where i am now five years from now. and i thank Jesus every day for that.
and i thank Him for the adorable girl that came into my life five years ago....
and anyday that she's like to come back from the beach....
http://shelimassieblogspot.com

Guest Post from Erika's friend, Beth

I just finished reading Let Your Life Speak, and in it, author Parker Palmer says, “The Spirit continues to call me and many others to more openness and vulnerability, more shared humanity and mutual healing, even - and perhaps especially - when the subject is so difficult that words seem to fail.”

When I was a little girl, I thought friendship was about matching your outfits and sharing your dolls and sleepovers and how many notes you got stuck in your locker by the end of the day. I also used to think of friendship as a luxury, an add-on. Great if you have it, but no big deal if you don’t.

I’m not a little girl anymore, and I no longer have little girl problems. And because of that, my view of friendship has shifted and changed and enlarged and, at the same time, taken on a very narrow focus. I’m not just looking for someone to play with, someone to share clothes with…though that’s all good and fine. My life now requires something more out of my friendships. I am a woman who is looking to build a family around me, a family of my choosing. And I am stunned and amazed and humbled to say that I have.

The women in my life - Erika included – are my sisters. They are my home. The harder life gets – mine and my friends – the deeper we go together. The better life gets - all of ours – the more there is for us all to celebrate. In the dark, they hold my hand and point me back to the Light.

Life would not simply be boring without my friendships, it would be poor and shallow. I would be weaker than God wants and needs me to be. I would have no one to share my stories with, my triumphs, my hard lessons learned, my faith questions and faith revelations. And of course, my clothes.

Much love to my girls. And Erika, you can come home now.

http://elisabethcorcoran.blogspot.com/

I'm Outta Here!

Today I am a guest blogger at the We Are Grafted In site. This site has been an invaluable resource to me as an adoptive parent and I know you will love it too!

I will be leaving the blog-o-sphere for week while my family and I GO ON VACATION! This is our first ever "normal" family vacation as our last one was a trip to Disney with Make a Wish (how cool was that?). Michigan- here we come!

In place, I am leaving you something even better! You will get to hear from two of my best friends. I am excited for you as these two ladies are rocking mamas with hearts full of Jesus- so check back!

Fireworks

Can I tell you how much fun it was to take Therese to see her very first fireworks display?!

She was squealing and laughing and kicking her feet.

She said, "Look, God is doing this! He is coming out to us!"

And that line caused fireworks to explode in my heart.