CHD: Single Ventricle Heart (Probably more than you wanted to know!)

I had a reader* (on my family blog) ask a question the other day that I figured some others may be wondering. I also think answering it could potentially help educate others about single ventricle heart disease, and education is POWER and could mean another child going from orphan to a son or daughter. So here goes.

Way back in March, a team of volunteers from Love Without Boundaries traveled to Guizhou Province and visited several orphanages. In one of those orphanages, they found a little baby girl who was not doing well and who appeared to have heart disease, which was apparent in her blue-tinged lips and other signs I'm assuming involving her breathing and possibly her fingers and toes (clubbing). By April, LWB was given permission to seek evaluation and possible treatment for this now 14-month-old baby girl in Shanghai. They also in April pleaded with supporters for funding for several children including a little girl they had given the name Keely. Within weeks, this little baby girl was receiving a much-needed, open-heart surgery in Shanghai. I wish I could share a face*book post link, but if there is a way I haven't figured it out! Anyway, LWB posted many updates on their face*book page about the little girl they call Keely when she was in Shanghai receiving surgery for her heart

She received what is more commonly called a glenn shunt. This link is a very layman's terms description of the Glenn shunt. It has pictures. If you are really adventurous, I have found youtube videos of the operation and I'll be honest: I have watched them and find them absolutely amazing and fascinating. The Prez thinks I'm a bit off, but I really found watching them helped me understand it a lot better and to see a surgeon working with such a tiny heart—amazing and miraculous.

**If you would like to see the link, I do have it posted on my family blog. I do not have it posted here because it is graphic. I just want to be careful and not offend! I find it fascinating and informational, but I realize others may not. You can also google you*tube and glenn shunt to find it if interested.**

After the Glenn shunt in early May, this baby girl was now receiving more richly oxygenated blood to her head and upper body. Still, the lower half of her body and lower limbs are still receiving very blue (oxygen-poor) blood. She needs another surgery, which is called the fontan in order to COMPLETE the fontan circulation.

To answer Trish's question, yes, LWB provided her with a much-needed and life-saving surgery, but she needs another surgery. She needs the full fontan circulation completed. This surgery she had in Shanghai though not only gave her a better chance for the full fontan circulation to be completed, it greatly improved her quality of life and her chances of being adopted. If I'm being completely honest, the Prez and I found a huge amount of relief and peace in knowing she was given such an incredible gift and chance. Our first daughter didn't receive this surgery and time took its toll on her little heart as she waited and FOUGHT to live. I still get totally overwhelmed when I think of what our Li'l Miss ENDURED. We watched her coming home video again today and I have a snippet of video with her labored breathing ... every single time I am overcome when I remember seeing her suffering like that. NO CHILD should have to suffer like that.

Our little girl, who is the same little girl known as Keely with Love Without Boundaries and who we will meet in 15 DAYS!, has single-ventricle cardiac disease just like our Li'l Miss has. Well, their defects are somewhat different but ultimately they both were born with one formed ventricle instead of two, and both needed the fontan in order to live the most full life possible with current medical advances. There is no cure or heart repair for single ventricle disease, but the glenn shunt and hopefully following that the fontan will give our waiting daughter the chance to lead a full life. She also has been diagnosed with dextrocardia, which by itself can by a totally non-issue, but with a complex defect such as single ventricle it certainly complicates matters. We are also unsure of possible other defects because we have received some conflicting information. Rather than pursue a lot of clarification, we decided to move forward because clarification was not going to change our decision to pursue her adoption nor was it going to significantly affect the fact that we will not know her surgical options until she is home and can be evaluated by a cardiologist and particularly through cardiac catheterization.

This page from Cincinatti Children's Hospital is one that I find extremely helpful for a laymen like me to understand our daughter's heart defects. You can click through and read about treatment options and various considerations.

Trisha also wondered why the urgency if our daughter already received life-saving surgery and if she is "doing well" as was stated recently on a post about her. While she is doing well right now, ideally she needs the fontan circulation to be completed (the lower vena cava to be rerouted to bypass the pumping chambers of the heart and flow directly by pressure into the lungs) and for it to be done sooner than later. While neither of these operations is considered curative, the optimum outcome for her would be a completed fontan circulation.

It is important I think to note here that the fontan operation is a last resort. It is not optimum, but it is what is available to better a child's life and give them a chance to live a life without being on oxygen hopefully and to experience everyday things that many of us take for granted. But ultimately, the fontan bypasses the pumping chambers of the heart because the defects are so complex that this is BETTER than allowing the blood to flow through the heart. I still have a drawing our amazing Dr. B, the surgeon who performed Li'l Miss's fontan and who will perform Li'l Bit's as well God willing she is operable, gave us as he explained in a way we could understand exactly what it was he would be doing to our Li'l Miss's heart. I saved it for her to have someday. I will never forget sitting in her hospital room that night, the night before he would operate on her heart, and hearing him tell us the risks, him having to ask us to sign the consent and his obvious grace toward us in that moment, and ultimately him saying as he stood, "It is in the hands of her Maker." Yes it is. Even today, that is it. Our Li'l Bit's heart is in the hands of her Maker.

On that same page from Cincinatti Children's Heart Encyclopedia, you can read this:

For a heart with a Fontan reconstruction to work well, there are a few crucial features that must be maintained. These key factors must be kept in mind when planning the medical or surgical management of children with single ventricle defects from the first day of life onward.

The single ventricle must not be overworked for a long period of time, in terms of either having to pump too much blood or pump at too high a pressure.

The pulmonary arteries must grow well without stenosis (narrowing) and must remain low resistance (or be very relaxed). If the pulmonary arteries are narrow or if the resistance in these vessels is high, blood will not be able to flow into them without a pump, so the Fontan will not be successful.

Lastly, leaky or tight valves may adversely affect the function of the ventricle or the flow of blood to the lungs.

I bolded the parts above because this information is crucial to understanding why the urgency and also why what LWB and its supporters provided is so amazing. Not only did the shunt operation she had done buy time so to speak, but it GREATLY INCREASES her chances for a successful and complete fontan circulation by hopefully protecting her lungs and pulmonary arteries from high pressures that could make a fontan impossible.

We know personally how NOT getting the glenn shunt adversely affects a child. We saw with our own eyes how sick our older daughter was. She was 35 months old and never received the glenn shunt which our Li'l Bit has had done thanks to LWB and its supporters.

As far as the urgency it is mult-faceted. The ideal time for completing the fontan is two to three years of age. Not only that, the longer our daughter waits for the full palliation, the more chance she could become ill and not be able to fight it and also the more chance her heart is being overworked (and could be enlarged), and finally the more chance irreversible damage is being done to her lungs and/or pulmonary arteries.

This is an excerpt from the Cincinatti Children's page:

The third and final stage in the reconstruction of a single ventricle heart defect is the Fontan completion operation. This operation is usually performed at 2 or 3 years of age, based on the child's size and clinical status.

On that note, the optimum time for a child in the US to receive the hemi-fontan, or glenn shunt, is by six months of age. Our daughter received it at 14 months of age. We don't know what happened with her heart and lungs and pulmonary arteries while she waited so long. What we do know is that she survived for all of that time, that she made it through the surgery and that she is doing well right now.

I also want to add that children with single ventricle heart disease are very susceptible to infections, to *regular* childhood illnesses being much more serious for them, to the lack of oxygen causing secondary problems such as poor brain development, learning disabilities, damage to the lungs which could be irreversible. While the surgery LWB provided most likely improved our daughter's oxygenation from the 40s or 50s to the 70s or 80s, this is still not ideal. A normal heart will function in such a way that the body will receive blood with an oxygen saturation of 99% or better. So, 80% oxygen saturation is certainly better than 40 or 50% saturation, but is not something ideal for the long term. It is very possible our daughter could live with just a hemi-fontan and at 70-80% oxygen saturation, but we are hopeful that she can receive the completed fontan circulation and hopefully 95% or better oxygen saturation. For reference, Li'l Miss had oxygen saturation of 40% when she came home and 70-80% after her complete fontan repair. However, due to her case of having no partial fontan done, her surgeon felt it necessary to leave a fenestration (a type of pop-off valve if you will to allow pressure releases) in her heart. About a year after her fontan operation, the fenestration was closed surgically in the cath lab. Since that time, Li'l Miss has held steady with oxygen saturation of 96-99%.

I want to touch on something I am often asked about: life expectancy. I copied this from that Cincinatti Children's page as well because it explains what we know so well (and also a lot of what we just don't know):

After a successful Fontan surgery, the reconstructed single ventricle heart has achieved its maximal efficiency in terms of ventricular work and near normal oxygen levels, but its capacity for work will usually not match that of a normal heart when examined using sophisticated testing.

The limitations children experience due to their heart defect, though, can vary greatly. At one end of the spectrum there are children with Fontan circulations who have participated in competitive sports such as swimming and gymnastics.

Other children may have significant limitation in their capacity for exercise. Most children fall somewhere in between the extremes.

Most children are on a blood thinner called coumadin after their Fontan to prevent clots from forming in the Fontan circuit. When a child is on a blood thinner, you must take extra careful to avoid falls or head trauma as they are at increased risk for internal bleeding.

How long a heart with a single ventricle reconstruction can function is not known. The first children to have a successful Fontan operation are just now 30 years old and many improvements in surgical technique and medical management have occurred over this time period.

Late complications including irregular rhythms and heart failure may occur. Some speculate that most single ventricle hearts will not function efficiently beyond 30 to 40 years, but improvements in surgical technique and medical care may increase this age significantly. In some cases, if the ventricular function deteriorates significantly, heart transplantation may be considered. Because of the possibility of late complications in patients with single ventricle anamoly, continued regular follow-up with a cardiologist for the life of a patient is essential.

So in all honesty, we don't know how long our little girls born with single ventricle disease will live. But who of us does know? What we do know is that they are amazing people and they deserve every good thing life has to offer, including a forever family. We also know our Li'l Miss has brought great joy and love to our family and occupies a place in our hearts that we never knew needed filing, and we don't doubt our Li'l Bit will do the same.

We hope she is able to have the completed fontan circulation. We hope in the Lord ultimately for her future. He is the only Hope we have.

*I am cross-posting this from my blog. There are so many children who wait with single ventricle heart disease. I hope by sharing more, others will come to a place of feeling led to take that leap and bring one of these amazing children home. In that regard, please email me (cljjs (at) yahoo (dot) com) or leave a comment if you know of children who wait with single ventricle heart disease. I'd love to advocate for them.

Who Are You Waiting For?

Are you waiting for a referral?

Are you waiting in the Waiting Child (SN) program or the traditional (NSN) program?

Are you waiting for what seems like years? Or perhaps you have been waiting for years?

Do you know who you are waiting for?

A daughter younger than two years old perhaps?

Or maybe she could be three or … possibly … four … maybe?

How about a son … or not?

These are questions all parents have probably at the very least mulled over, maybe even revisited again and again if waiting for years for a referral from China.

And these are all questions that at times honestly perplex me.

The biggest question I would love to ask everyone who is waiting for years for a referral is this: Who Are You Waiting For?

Let me assure you that I have never asked a waiting parent this question. I suppose in a roundabout way I am asking anyone reading to consider it now. Obviously in a blog, no one has to answer or even feel the need to answer. On the other hand, comments are always open and welcome here so a discussion could always come about … and that is most often a good thing.

Let me throw out some hypothetical assumptions here. I am basing these on conversations I have had over the years with other APs, many of whom are astounded when they actually meet our "special needs" children and learn that all three of them fell into the "hard to place" category.

Hypothetical #1: You are one of a majority of families who are NOT open to a child with multiple needs. A child who was born with complex heart disease and cleft lip and palate.

That would be entirely too much. Now, let me stop here and say let's assume insurance is not a deciding factor and also that you qualify in every way for these hard to place children. But assuming you have excellent medical coverage and all requirements are met, you are just not open to a child with those "severe" needs.

Let me introduce you to our child who was born with complex heart disease and cleft lip and palate. I am going to show a VERY RARE glimpse of our Li'l Miss on video. She is singing a song she penned herself, and she sings it often to Jesus. In one line, she sings:

Lift up Jesus Christ, He loves you sooooo much.
Lift up Jesus Christ, He made you so wonderful.

Does it get any better than that? Wow. I admit to just about losing it when she sang it for me the first time. I already mentioned she made this song up herself. Did I mention she has complex, single-single ventricle heart disease? Yes she does. And no, we don't know what her life expectancy will be, and honestly we don't dwell on that and didn't even consider the question when deciding to move forward with our second daughter, also born with single-ventricle heart disease.

Why? In short, they all deserve a home and a family. And if you met her, I can almost assure you that you would never ask the question again, "What about life expectancy?" which is the #1 question asked of me by parents wondering about bringing home a child with complex heart disease.

Now let me be clear in saying PLEASE ASK QUESTIONS. I love to answer, and though my answer may not give you any peace or reassurance, it is honestly how the Prez and I feel. It DOES NOT MATTER what their life expectancy will be. We adopted her and will adopt her little sister not because of how long they might live, but because they ARE living and they need a family … and I think we need them just as much or maybe more.

Our daughter is 6 years old. She has been home for 3 years. She has SEVERE language delay in the area especially of articulation, but did you hear her singing? I might be just a wee bit proud of her. She WORKS SO HARD. She had significant hearing loss for more than 4 years until tubes were finally placed and her hearing is now excellent. She has endured 8 surgeries since she came home, and does so with bravery and courage that most of us will never know.

She is AMAZING. If you met her, you would not believe she has faced so many needs and endured so much. She is our daughter. Why do I share so vulnerably here?

On the shared list today, multiple children with needs EXACTLY like our Li'l Miss wait and wait and wait. Maybe you haven't ever felt like you are waiting on a child like that. Maybe though you are missing out by not pursuing one of those children.

Hypothetical #2: You would never consider bringing home an older son because there are too many risks and older children can never bond anyway, and if you did go there you would definitely only consider a girl anyway.

Enter this charming young man.



I know he is charming, because he is my son. My 3rd son … well really 2nd … except he came to me 3rd … but he is our 2nd oldest. I know it confuses my brain sometimes too. I know how you feel because I was definitely not open to an older child … and definitely not open to an older son … and definitely not open to bringing an older boy into our home with younger children. No way. That is what other families do. Not us. Besides, that is irresponsible and just asking for trouble.

Except he hasn't brought us trouble or made us irresponsible parents. In fact, he has brought more joy and love and grace into our home and our parenting. Not only that, we are immeasurably more blessed for having stepped way out of our comfort zone and done the thing many think is taking it way too far.

He is the most loving and compassionate guy you'll ever meet. He loves with his whole heart, which I should add is not perfectly formed. He was also born with heart disease, and though a PDA seems minor enough, his was not repaired until he was 10 years old in China and while we awaited our LOA for his adoption.

So, I know you may fall in that majority who says, *IF* I was going to adopt an older son, he would have to be healthy. But let me tell you, our son is HEALTHY as an ox. He does anything he wants to do sports-wise and he is smart and funny and just adds another layer of love to my heart!

So, my advice: don't assume you couldn't adopt an older son. Maybe an older son is just who you have been waiting for all of this time. Many of them wait on the shared list right now. Today. And a LOT of those boys are healthy, and some others have "needs" like our son did, but don't let those needs define the child. Look past them and do your research and talk to experienced parents. And then decide. But at least consider an older, waiting son.

Hypothetical #3: You do not need a son. You want a daughter. You are not going to change your mind because this is your dream and that is that.

This is a tough one.

I know this may not go over well AT ALL. I am well aware of that fact.

But sometimes the tough stuff needs to be said. And sometimes we just gotta say it.

I have been blessed with four amazing sons, 2 by birth and 2 by adoption. When we had our 2 birth sons 4 years apart, I remember being thrilled both times to hear the ultrasound tech say, "It's a boy!" I mean, absolutely thrilled. There was no disappointment in me or my husband whatsoever. Why would there be? Both boys appeared to be healthy, growing as they should, and due right on schedule.

That was enough. A son. And then another son. Icing on the cake!

And then came China. And our 2nd adoption, 4th child. A son? Really God? Are you sure?

But I knew. Without a doubt. He was calling us to THIS CHILD, the one I just spoke of above. The older boy. Who happened to be on our agency's designated list at the time.

And so we moved forward, and once we did I never looked back. What I would have missed? I can't even fathom now.

Enter son #4. REALLY GOD??? ARE YOU SURE???



Oh how winding our path was to this Li'l Dude you see pictured above (and whose upper lip finally seems to have expelled those last remaining "dissolvable" stitches). I can only imagine the Lord knew how much He needed to grow my love for this little guy BEFORE we met him … and grow it the Lord did!

When we met, I quickly realized his immediate needs were great. Far greater even than I imagined. And I imagined fairly realistically. And yet, less than a year and a half home, he IS rocking it out! I tell you he stood up on the stage at church Sunday night in the preschool program and acted the part of a CAMEL. Now he didn't have all the right moves precisely down like his sister and the third camel, but he stood there and he didn't run away or act disruptive … and he definitely was one of the two cutest camels on that stage!

He is now reading some too. AMAZING. Did I mention he was born with heart disease (TOF), cleft lip and palate, is deaf in one ear … oh and he lived in an orphanage in China for 5 years?

Yeah. He was waiting for YEARS for a family too. Did I mention that? Why?

I think probably because he is a BOY, he was older (4 at referral; that is OLD for a little boy waiting), he has multiple needs, and … uh, oh … and undisclosed need. That is way too much.

And yet, when I look at the above photo, I just see my little surprise. That is what I call him: my little surprise! He grins that big grin and says, "I LUBBBB you, Mommy" and my heart melts all over again.
Who Are You Waiting For?

If you are waiting, perhaps even years for a NSN referral of an AYAP girl, maybe it is valid question. Maybe it is not. Only you can decide that for your family. I will tell you this though.

Our first LID was December 14, 2007.

12/14/2007.

We are still YEARS … yes, YEARS … away from a referral with that log-in date. Since that date, we have brought home our … three waiting children … all hard to place … all NOT fought over … all NOT part of the "new shared list" each month … and yet all equally amazing and a blessing to everyone they meet … and most importantly, treasures uniquely created by our Father God.

Our Li'l Miss …

Our "Larry" (one of our 3 stooges ;) …

Our Li'l Dude …

And our Li'l Bit … waiting for us in China …

… and born with a single ventricle heart … and EQUALLY deserving of a family … and we feel completely overwhelmed in a good way that God is entrusting us yet again with one of these special babies!

Who Are You Waiting For?

Feel free to check out our adventures in life as a family of seven … soon to be eight … at my family blog, Room for at Least One More.

A Valid Question Further Explained

My Mom called before 8 a.m. wanting more details after reading this post.

I don't *think* she was mad when I refused to answer a specific question.

Let me just say my Mom is one of the coolest and most awesome ladies I know, but man it feels good that I have the confidence to say "No, Mom, I'm not going to tell you."

She tried hard, but the point of the post was to just say this: The Prez and I do NOT feel called to adopt a healthy child.

There.

I said it.

Let me say, THERE IS NOTHING WRONG WITH ADOPTING A HEALTHY CHILD.

I truly believe that.

But God calls us all individually. And He has called us to this: special needs adoption.

And it seems like He has called us specifically to adopt children with heart disease and more than that, children who are "hard to place."

Oh, I REALLY DON'T LIKE that term.

But it is out there. And unfortunately, it is true.

All 3 of our children who were adopted WERE hard to place. Man, that hurts my heart. BREAKS it nearly.

Our first child by adoption: Li'l Miss was only 2 1/2 when her file was put on the shared list, BUT she had unrepaired heart disease (4 listed defects including transposition of the great vessels) and unrepaired cleft lip and palate. Many people are just not open to taking that step, to adopting a child with all of those needs, especially together, and especially complex heart needs.

I have said this before but the #1 question I get asked by far when counseling people considering adopting a heart child is this: "What about life expectancy? Will her life be shortened?"

Well, I don't know. Do any of us? I do know that she had a fontan operation and that this is cutting-edge in the scheme of heart repairs and no one knows, but Li'l Miss had a heart working over-time for far too long, and damage was done. But when I watch her living life TO THE FULLEST not just every day, but every moment of the day, I wonder if those same people could see what I see ... would they even ask the question?

And then our Li'l Dude. Well, he was 4 AND A BOY. Two strikes there. Most PAPs don't want a son (1 out of 8 adoptive families will CHOOSE a boy; the other 7 choose a girl no matter if there are any children yet or not) and if they do, why would they choose an older one when so many little babies are waiting with no one waiting on them? And did I mention Li'l Dude was born with tetralogy of fallot and cleft lip and palate? And he has some other defects, namely hearing loss in one ear and will be wearing a BAHA soon on that ear.

And Larry. Well he was 9 years old sitting there on our agency's individual list. I remember skipping by his picture and bio myself. I mean, really, a 9-year-old boy? I don't think so. But if you could see this child and his loving ways, and his HUGE heart and his smile and his curiosity and trust? He is just precious, and his heart is special too! At the time we submitted LOI, he had a very MINOR yet unrepaired heart defect. Turns out, he got really sick and had open-heart surgery in China. Oh that really was not what we signed up for, but we signed up for HIM. And we are so glad he is home with us.

I guess what I'm trying to say is I see so much chatter about how tired of waiting families are month after month, how "small" this shared list release was, even our agency {whom I love} has jumped on the bandwagon of branding that quite frankly leaves me a bit fumed.

Is God really calling the majority of families to special needs adoption, and then calling them to adopt ONLY the children who everyone else wants to adopt? Would He really do that?

I am just asking the question. Believe me, it has been rolling around in my head for MONTHS. And I do mean rolling like a bag of rocks or something. It really keeps me awake. Where are His people and why don't they want the ones no one wants. I know people are not going to understand if the Prez and I willingly go to China to bring home another sick child. If we do, we will do it because we know and have peace that God has called us to that child.

Many, even believers, question us on that--why would we do that, why would He ask that of us again?

BUT WHY WOULDN'T HE??? And why wouldn't we???

Didn't Jesus go to seek the sickest among the crowds? Didn't He seek out those who needed help the most? Didn't He go to the ones everyone else had turned away from?

Does anyone else want to join me in praying more believers who are called to special needs adoption will step out and consider the children who are not sought? The children whose futures may be very uncertain? The children who are passed over month after month? The children who are labeled with diagnosis that make us uncomfortable?

Is it possible that is right where God wants us? Uncomfortable?

I know this post is out there, but I just can't contain it anymore. I wish the Prez and I could adopt more than one again. But we can't for many reasons, but there are SO MANY waiting who seem to be forgotten. Or too hard. Or too risky.

BUT GOD.

When The FEAR Sets In

I have so many ideas for post topics in my head.

I have even started many times only to hit DELETE--DELETE--DELETE.

I just can't get the jumbled thoughts on paper or the blog-o-sphere.

I think it is due to pregnant/paperchasing brain.

Or maybe I just don't want to put it out there. Yet.

So.

We are adopting again.

Our Home Study is final, approved and on its way to us.

Next step. Send off I800a application tomorrow.

What? Wait a minute.

This is supposed to be going s-l-o-w-l-y.

Why is it that paperchases that you want to go at mach speed take F.O.R.E.V.E.R.?

But the one you say we will just take our time.

It takes one month for all of the paperwork to be D.O.N.E. except the I800a.

Which are averaging 60 days right now.

Not great.

But they have sped up since we started a month ago.

So, what does all of this mean?

I do not know.

I know it has this Momma wondering what is UP?

And I do mean UP. As in UP THERE.

Because I know God knows.

And while that leaves me feeling at peace, I admit to having some freak-outs with Him as of late.

Yesterday, I had to take the Li'l Miss to her PCP. I KNEW it was strep throat. She acts the way she was only when she has strep.

As the doctor was finishing the lowdown, my phone rings. I glance down and see (703) ... .

And my heart literally starts pounding.

I couldn't get outta there fast enough.

Li'l Miss looks in the sticker basket at Ms. C's desk on the way out.

Even though the sign says "1 sticker please", Li'l Miss gets 2 EVERY.SINGLE.TIME.

Because Ms. C spoils her. But there was but 1 sticker left.

"Come on, Li'l Miss, we gotta go." [thinking in head: why in the world was our agency calling???]

"But, Mommy!, I need 2 stickers. There is just 1 left. I NEED 2 STICKERS!"

Ms. C. has been cornered by a pharmaceutical rep. I wait momentarily and then as kindly as I can, I say, "Excuse me, Li'l Miss needs to talk to Ms. C."

Rep. obliges ... sort of. We get the 2nd sticker and head out the door. I can't get to the van fast enough.

Why is our agency calling???

Tap, tap, tap. Me dialing back the number.

"Hello, This is XXX."

Me: "Oh my goodness. Thank goodness it was only you."

Social Worker: (as she laughs) "Only me?"

Me: "Oh well you know. I just thought it was someone calling from Corporate. I am NOT ready for THAT CALL yet."

SW: "Oh, I see. No, just me calling to ask you to do this. I forgot at our last meeting."

With this adoption, unlike our last 3 adoptions, I just don't feel as hurried.

I know we are where we are supposed to be. That I am sure of.

But a long wait for a referral sounds great to me right now.

Maybe that is weird.

But it is honestly where I find myself today.

I know one day that phone will ring with the 703 number on the caller ID window.

And my heart will start racing.

And the person on the other end will say, "We have a referral for you. She is ... ."

And all will seem right with the world.

And I can't wait. Even if that takes months. Or longer.

Dealing with the Undisclosed Need

Let me preface this post by saying that in all reality, hearing loss is NOT a total shock (or it shouldn't be) when a child also was born with cleft lip and palate. In fact, I asked the audiologist we saw today and she confirmed to me that many of her patients have cleft lip and palate. Our ENT has told me as well that the same time mouths are forming in utero, so are the ears inside and out. It is NOT uncommon for the two to go together: cleft lip and palate and hearing loss.

But.http://www.blogger.com/post-edit.g?blogID=1812829745872292085&postID=9068717545572524380

I always said when looking at the checklist. You know the one if you've ever had to fill one out: the special needs checklist. Sure, agencies have varying ones, but they are all about the same. Check the Yes boxes for needs you are open to and if you're not open to a need, just leave the Yes and Maybe boxes for that need blank.

Our agency puts one this way: Deafness/Hearing Loss

And The Prez and I, we didn't even check the Maybe box. Much less the Yes box.

Then you realize when your child comes home and is faced with hearing loss—permanent and congenital hearing loss—you are all of a sudden not only open to the need but you find yourself on a mission to learn all you can at a supersonic pace.

You see, our Li'l Dude—he can't hear in his left ear. Much at all. He is hard of hearing at best in that ear. The image below shows his hearing levels in each ear. The left ear—in blue—shows he can barely hear a vacuum cleaner. The audiologist explained in a noisy place, he wouldn't even hear that. Voices or talking … he can't hear that. Birds chirping … no. A baby crying … barely maybe.


After his CAT scan of his ear and the follow-up ENT appointment, it was time to swallow hard and move forward. The ENT explained to me that our Li'l Dude's left ear was malformed inside. He explained to me things like nerves in the wrong places, fused bones, cochlear just fine … to be honest, after being at the hospital for 4 hours with Li'l Miss's bi-annual cardio appointment before the ENT follow-up and trying to digest it all … I was spent.

That was a couple of weeks ago though. Now I have moved forward and onward. Talked to some other Moms of children with BAHA devices, hearing loss and mainly I've accepted that this new diagnosis does NOT change who our little boy is and who he will be.

While this is yet another set of appointments and specialists we will add to our repertoire of hospital visits and all that involves, I am yet thankful we have options. And while this does affect our Li'l Dude, this need does NOT define him.

Today, he tried on a temporary BAHA device. He seemed to really enjoy the difference. The audiologist did a brief test with his right ear plugged. She then performed a series of hearing test on his left ear with the BAHA on his head and without it. The difference: AMAZING and profound.

Our next step is scheduling a surgery date with his ENT for the procedure. He will have a small screw-type holder deal implanted on his head. This will be where we will attach the BAHA. The photo below shows a child wearing the same type of device our Li'l Dude will wear. Since he is already 5, he is a candidate for the permanently fixed BAHA. Here is a picture of what it looks like when the device is attached (goal is to wear during all wake hours; off only to sleep, bathe, swim).



We also confirmed today that the audiology team agrees with our ENT that a traditional hearing aid would first of all probably not lend much help to our Li'l Dude in improving his hearing and secondly, would most likely not stay in his ear. That leads me to what brought about in part my panic in China.

I have never talked in much detail about it, though I reference it in this prior post here on NHBO. I immediately noticed our Li'l Dude's ears looked *different* when we met him in China. I remember distinctly thinking to myself: we didn't sign up for major hearing issues and his ears just look weird. What I didn't know then is what to call the look of his ears: ear canal stenosis. I knew the word stenosis meant narrowing because of our heart journey with Li'l Miss but I didn't know it could apply to ear canals.

I know this sounds terrible and it feels even more terrible to type it out, but it is the truth. I was so worried about his ears and what the outer look might mean for the inside of them. Thankfully, the Prez more or less told me to get over it and we'd deal with it when we got home. Today, at our 12-month post-placement visit as we told our SW about the latest medical development concerning Li'l Dude's hearing, the Prez and I remembered aloud how panicked I was and how adamant he was that no matter what, our Li'l Dude who we had quite frankly fought so hard to adopt WAS COMING home.

It was not so much that I doubted this fact or even considered questioning it. The Prez and I agreed early on in our adoption journey that when we said no matter what, we meant it. So that part was easy. We had agreed we'd not make a decision in China we might one day regret and would forever doubt. But those ears, they sure nagged at me. To top it all off, Li'l Dude was dealing with the nastiest and meanest ear infections we'd ever seen. And he didn't talk at all. For 2 solid weeks. I doubted he ever would.

Now I figure not only was he in shock, but he most likely couldn't hear anything or at the very least muffled voices that sounded funny. Fast forward nearly one year from the day we met—June 21, 2010—and Li'l Dude is speaking in sentences and even paragraphs! While we understand a lot of it, most people don't.

We are hopeful that his speech journey and hearing journey will only improve with the addition of his BAHA device. And while I once thought his precious ears looked weird, I now see them as just about perfect! You will maybe be able to see the canal stenosis our Li'l Dude has in this photo below of his right ear: in his case, the ear is formed completely but the ear canal itself is extremely narrow which in itself often affects hearing.



In Li'l Dude's case it affects both his ears, but the bigger need involves the malformations inside his left ear, which the ENT says happened in utero the same time as the clefting occurred.

And my advice for those adopting cleft-affected children: please be prepared for the *possibility* that hearing IS affected as well. We are at 100% for that one as both of our cleft-affected children have hearing loss. Li'l Miss though seems to have turned a corner with that since her tubes were placed. Li'l Dude also had tubes but his hearing didn't improve. Now we know why: congenital malformation of the ear inside and out.

As we enter the world of an undisclosed need, I am most thankful for Moms who share so that I can go into this unknown territory better able to handle the unknowns we face and the endless possibilities our Li'l Dude has for his future!

SN: CHD and CL/CP

I see this label often on the shared list and advocacy sites.


It hits close to my heart to see it.


I don't think as I used to of the FEAR.


Of the what ifs.


Of genetic syndromes.


Of shorter lifespans.


Of lower intelligence.


Of open-heart surgery.


Of speech delays that may take years to overcome.


Of unanswered questions.


Instead I think of the JOY.

Of melting popsicles running down their arms as they savor every last sugary bite.

Of giggles and squeals as they play in the ocean waves and on sandy beaches.




Of running and swinging and sliding and jumping and running some more.





Of beautiful wide smiles that remind me of just how hard they fought to live when they had no one to fight for them.






Of a little girl fishing on the banks of a river with her princess pole.


Of a little boy creating a truck and camper out of LEGO bricks all by himself.



Of hugs and kisses coming at me from all sides and "pick ME up" because yes, they do both want to be "Momma's baby."

Of little girls dancing and twirling for their first ballet performance.



Of watching their delight in the seemingly simple art of blowing bubbles.


Of knowing that, while the art of blowing bubbles is anything but simple for cleft-affected children, they WILL blow that bubble out of that wand.




Of seeing the label "SN: CHD and CL/CP" and knowing what might be for the ones who still wait.

The A Word in Adoption

Abandoned.

Webster's defines abandoned as "given up, forsaken." And Webster's defines forsaken as "to renounce or turn away from entirely."

The questions have begun crashing in for our little girl. My Mom asked me if I thought her overhearing our talks with her older brother about his China Mommy had brought this about more quickly than they might have come. We don't really hide these discussions from her; in fact, we are very open about his continuing relationship with his foster Mom. But our little girl didn't have a foster mom in China; I'm not sure she quite understands that role. Somehow I think her questions were coming regardless. And sooner than later.

When can I see my China Mommy?
When can I talk to her?
Why can't we go to China and see her?

And that one stopped my heart for a moment. I had prepared and planned for this question. And yet the words failed me. Finally I mustered the simple phrase We don't know who she is. And she cried. And I cried.

The truth is that I don't know who she is or if we could ever find her. I do know this though.

Much worse things than abandonment could have befallen our little girl. And yet how does she reconcile the fact that her first mother (China Mommy she calls her) is not her Mommy?

I don't know.

Each night the grief comes at bedtime. It is so very much for a little girl of five years old to process. As she cried the other night asking me what did her China Mommy look like, I told her this: I imagine she must be very beautiful just as you are so very beautiful and I imagine she has a beautiful singing voice just like you do.

She cried more and begged me for a photo of her, to SEE HER. I have never wished to be able to do the impossible more than in that moment. I told her I didn't have a photo and had no way to get one at this point as we don't know who she is. But I told her to ask God to give her a VISUAL IMAGE as she slept that night. I also told her that I believed she had seen her China Mommy as she held her tightly after she was born. Our little girl looked up at me with a tear-streaked face and said, "But how do I remember?"

I thought for a moment and just told her to search in her heart. She thought for a moment and then lay down on her pillow and closed her eyes. The next morning she told me God had indeed given her a visual image of her China Mommy and that she wanted to draw it on paper. Then as quickly as she grabbed paper and pencils, she decided to play with her five-year-old brother and his cars ... and left the paper and pencils on the table.

Last night was no different as she asked for her China Mommy at bedtime. Except for this. There were no tears as I reminded her that she could look within her own heart for that connection to the woman who gave birth to her, who CHOSE to abandon her when there were other alternatives.

After reading this book (MUST READ in my opinion), I am of the conclusion that abandonment in China is far more of an adoption plan than many well-meaning but uneducated westerners might think. After finishing this book recently, I have been particularly burdened with thanksgiving for the woman who did not practice infanticide herself or allow anyone else to do this with our three children from China, all of whom were abandoned by their first parents. I have also been overwhelmed with the knowledge that children just like our children from China are daily aborted before they are ever born or perhaps worse are killed upon birth.

You see, abandonment may be a word we don't want to speak out loud, but in my mind much worse fates await many children even today all over the world including the US. While I am in no position to personally understand our little girl's feelings or those of the mother who abandoned her, I am in a position to help our daughter sort through her feelings when she feels the need to confront her loss and abadonement.

Let's Talk About Labels

Every month the excitement quickens.

Every month the chatter on groups and the *official* website for all things China adoption takes on a new level.

Every month a few announce their joyous news for a referral of a child from the shared list. And that never gets old: to know a child who was once an orphan now has a family ready and willing to bring him or her home as soon as the paperwork trail is traversed.

Every month people express disappointment that more *matches* are not made. Some even express disappointment at the lack of young girls' files released or at the magnitude of needs for those whose files are released.

And every month ... every month thousands of children continue to wait for their turn.

Every month the same children wait and wait and wait.

Many of those children are listed with multiple needs. Many of those children are boys. Many of those children are girls older than three. Many of those children have more than one listed need.

And the questions are valid: Do they have syndromes? Do they have a chance for a *normal* life? Do they have a chance to have a *normal* lifespan?

Unfortunately I suppose those are not really questions that can often be answered. At least not from the other side of the world.

Here is the thing though.

We are talking about children.

Not an order we place.

Or even the perfect match.

Does anyone else feel a bit or even a lot uncomfortable with the use of the word *match* when it comes to the lists of children available and the referral of children. I much prefer the word referral not that my opinion matters. It is just that the word match conveys all sorts of things in my mind at least. Things I'd rather not have conveyed in my mind.

I mean, we are talking about children.

I know I already said that, but you see I have three children who were adopted and they don't fit the most desired criteria. Or even the manageable or moderate categories really. And they certainly came with way too many labels for many people to even take a second glance. And not many people would even consider looking at their files. Because of the labels.

And yet they are the most wonderful children and they really are a blessing. I just don't see them as a burden or as the potential to be a burden or ...

Less than.

But I have come to terms with the fact that many people do.

Even in the adoption world.

See many children waiting on the lists right now as less than. Many of those children have the SAME needs listed that my children did.

Complex heart disease, unrepaired.

Unrepaired cleft lip and palate.

BOY.

10 years old.

CHD, repaired, CL/CP, unrepaired.

And the list goes on and on and on. So many children with those needs who wait and wait and wait.

Our daughter. Adopted with unrepaired complex heart disease and unrepaired cleft lip and palate at 3 years old. She was born with transposition of the great arteries and one ventricle in her heart among other defects. And she was also born with cleft lip and palate. And she was waiting at 2 1/2 years old with all of these needs having never been repaired in any way. And she weighed 18 pounds and her eyes are assymetrical and her fingers were clubbed. And her head didn't fit very well on the growth chart. And she may not have a long life.

Our youngest son. Adopted with repaired heart disease and repaired cleft lip and palate at 5 years old. Born with tetralogy of falot, preemie weight, with cleft lip and palate. Listed for adoption at two years old after receiving open-heart surgery and cleft lip surgery in China. After visiting missionaries pleaded with his SWI to put him on the list for adoption persuading them someone would want him. As his paperwork became older and older, he continued to wait with so many labels and so many unknowns. So many questions no one could answer. Turning three years old, then four years old. Still waiting. Oh and did I mention ... a boy. Not a girl. And his age. And his head measured small and so many markers for a syndrome. And the life span question. No guarantees there.

Our second oldest son. Adopted with repaired heart disease at 10 years old. Listed at eight years old. A special need in and of itself. A BOY. Still listed at nine years old. And with unrepaired heart disease. What about damage to his lungs? Or about the possibility he was abused? Or the fact he is a boy and not a girl? And he was nine years old. And still had unrepaired heart disease.

Too much.

Too much risk.

Too much at stake.

Too much time.

Too little time.

Too much unknown.

Too much lost.

Too much left unanswered.

Too much.

Too old.

Too risky.

Too major.

Too complicated.

Too much.

On the other hand.

Our children are WHOLE people who bless our lives and our family and who are just as normal as the next child.

They give us hugs and kisses. In being their parents, we are given an incredible opportunity to place our faith in the Creator God over and over again to meet all of their needs and ours as we take care of them.

We have a different perspective than we did before on what really matters.

More appreciation of the here and now.

More respect for those who may not be *normal*.

More of an understanding that *normal* is all about one's perspective.

More children in our home to love and who love us back.

More blessings than we can count.

Yes, more doctor's appointments.

And more laundry.

More prayers.

More tears.

More food to purchase.

More smiles.

More laughter.

More people to tuck in one last time before I crawl into bed.

And did I mention more laundry?

And most of all, more and more thanksgiving.

That we did not see them as the many labels they had attached by their names.

Or by the ones that might apply to them once we got them home.

Thankful that instead we are their family.

Thankful to know that medical needs, syndromes, and physical limitations are in fact minor in comparison to the immeasurable holes in our hearts that each one of them has uniquely filled.

Our Second Oldest Son. Today.





Our Youngest Son. Today.



Our Daughter. Today.

If you are waiting for the perfect *match*, please consider that maybe your child is already waiting for you ... perhaps with a label attached.

A Journey to an IEP

Wow.

Shock.

Joy.

Sadness.

R.E.L.I.E.F

Developmental Delay.

How should I feel?

I'm not sure, but the overriding feeling today is RELIEF.

We have a starting point, a place from which to MOVE FORWARD.

On Thursday, my baby boy, our little five-year-old son will begin a new journey.

Complete with an IEP (Individualized Education PLAN).

Back in September, our Li'l Dude was *screened* by our local school district.

Let me back up. In March 2009, our Li'l Miss at age 3.5, was *screened* and found to be inelligible for ANY SERVICES. She was given N.O.T.H.I.N.G. She was not delayed at least moderate in two of the five areas or delayed severely in any one area. She was found to be delayed only in expressive speech delay.

Oh if I only I had known what I know now.

You truly do LIVE and LEARN.

Now I am proud of our Li'l Miss and the progress she has made. And in a way in which I try to be humble, I am proud to say I've been the one by her side pushing and praising and pushing her some more. She just began speech therapy through the school district in late April-May until school let out and she began again in September. Other than that, I've been her teacher, cheerleader, trailblazer seeking answers and avenues for support.

And it has been hard. And rewarding. And at times frustrating. At times leaving me wondering and without answers. At times very lonely. At times so proud I could burst.

This time, though, when I was told our Li'l Dude needed *more time because he was just adopted* ... I fought back. I didn't sign the paper. Did you know you can refuse to sign it? GASP. But you can. You ARE your child's best advocate. I was afraid to protest last time. This time, I knew I had to protest. For Li'l Dude's sake.

I don't mean I literally fought, though some of you may be trying to picture that. I mean, I pushed. And pushed again. Until they listened.

I sat in an uncomfortable meeting demanding more evaluation, more answers, more explanations for why a little boy who is 5 and already eligible for kindergarten in our state and yet is admittedly very delayed in some areas ... does not qualify because he needs more time?

Honestly hasn't he had enough time. Being ignored. Being deprived. Fighting for himself. Fending for himself. Being lonely. Being overlooked and underestimated.

He doesn't need more time to show us all his inner will. He doesn't need more time to fall further behind his same-age peers. He doesn't need more time to get frustrated when other five-year-olds don't understand why he screams at them when they don't understand what he is saying. He doesn't need more time to wait for help because he doesn't fit into their mold of the *typical student.*

I didn't go it alone though. I called our State Education Departement. They were VERY HELPFUL. EXTREMELY HELPFUL. In fact, after my call into them amazingly I got a call back offering a FULL evaluation. Yet I had asked for this just days before with a firm no. Hmmm.

I also took a companion with me. Nothing like moral support when you are seated at a table with 10+ people, all of whom seem to be on a team against you at times. All of whom are professionals who assume you most certainly are not.

While The Prez would have tried to move mountains to get there, he honestly does not have the time to miss any more work and continue providing for his family. He is the boss and when he is out ... . He has missed so much work between Li'l Dude and Li'l Miss's surgeries, our trip to China, and doctor's appointments all around. The truth is I knew of another advocate who would be great to have by my side: my Mom and Li'l Dude's Grammy. I mention this to say KNOW YOUR RIGHTS and know that you can bring an advocate with you even if your spouse is not able to come or you are single or any other number of circumstance. Whatever you do though, don't go it alone in an IEP meeting.

Grammy has stayed by my side in both meetings, and she and Papa took care of the others while Li'l Dude and I went to the four different individual full evalutions for occupation and physical therapy, speech and language evaluation, and finally his psychological assessment. The two meetings had the same end goal. In one we pleaded our case and laid out our desires. And the one today, we mostly listened and they laid out the plan.

And a plan it is.

Li'l Dude will receive one-on-one speech services twice a week with a lady whose name is very uncommon but oh so special in our family. Some of you may be able to guess HER name. Not only that, she is genuinely delighted to help Li'l Dude move forward in his communication goals, and she just seemed so sweet and kind. She also has EXPERIENCE in helping cleft-affected children who lack expressive speech. Something that is crucial.

Li'l Dude will ALSO receive adaptive therapy because he does not adapt at an age-appropriate level at all. AND he will receive physical therapy for gross motor delays twice a month and maybe more. The physical therapist is also interested in helping him find his place and seems genuinely caring and concerned.

Developmental Delay (due to his adaptive and physical delays) and Speech Articulation Delay. That is the official code.

Official or not, we have all known it since the day we met him in China.

And yet, we ALL agreed today the scores he made on the tests are probably not accurate. But they are what they are. In *most* sublevels in the five main areas, his percentile rank looked something like this: <1. As in, less than the 1th percentile out of 100. Peers. The same age.

So it is with a mixture of sadness and joyfulness, I am actually relieved.

Relieved to know that I succeeded in getting our Li'l Dude the help he is due. Relieved in knowing he will receive these services FREE (we are currently paying $90 per hour for Li'l Miss to receive speech therapy). This is a blessing to receive the services free. A huge blessing.

Relieved to know when one fights back and pushes and lets others know I'm not just a bystander willing to take the pat answer ... things CAN happen.

I am in agreement that perhaps, if somehow he had not been in a poor Chinese orphanage for so many years ... perhaps we would not be where we are today. With a child who now has an IEP and who does have the *developmental delay* label.

I don't like labels either. But you know what? I also don't like knowing I've not done all I can to help him reach his potential, even if that means asking for help. Asking the hard questions. Looking at the hard facts. Accepting where he is today: delayed.

And yet relieved to know we all agree his potential is impossible to see because the sky truly does seem like the limit. One lady likened it to a baby bird who instead of being pushed out of its nest had somehow been trapped in the nest as it grew, unable to spread its wing and try them out, even if at times it fluttered clumsily to the ground. He instead of learning and growing, had been trapped in one spot for far too long, with so many inner longings trapped inside, lying dormant for far too long.

I have to imagine her illustration is not too far from accurate. Our Li'l Dude is so anxious to spread his wings. So willing to try. So amazing in how FAR he has come in a little less than four months home.

This is our first journey into an IEP. As our Li'l Dude settles in for the ride on the special little school bus that will come right to our house and pick him up and bring him home each of the four afternoons he attends, I will be settling in for the ride that is the life of a Mom whose child has an individualized education plan.

Adoption Reality #2: Special Needs Do NOT Define Children

This post is a bit of a detour for me from my original plan for my #2 Adoption Reality. I feel the need to share this though, and to add a disclaimer that these Adoption Realities I'm sharing are MY realities. They may not be the same for all of us, but for me this is how I see it and have experienced it as we've stepped out and been blessed through the miracle of adoption.

I read on our agency's blog that there are so many children available on the shared list with heart disease. There are also girls and boys available with cleft lip and palate. Just waiting. And then there are those children waiting … who have both needs. Those are the ones for whom my heart truly aches.

You see, two of my children were born with heart defects and cleft lip and palate, and another of our five children was born with heart disease. He had another marker that made him hard to place … he is 10 years old.

I know many of the children who wait with heart disease have complex conditions and/or have secondary conditions listed as well. I also know many of them are older with repaired heart conditions and perhaps unrepaired as well.

Our 10-year-old son was born with a PDA and had open-heart surgery in China a few months before we traveled to bring him home. We brought him home in June and in August our ped. cardiologist pronounced him healthy and to be treated as such with no restrictions. PTL!

Our 5-year-old son, who also came home in June, was born with TOF (tetralogy of fallot) and cleft lip and palate. He was seen in August as well. It appears his heart has some other issues going on, which is not totally a shock but we were definitely disappointed for his sake. And still, we will move forward one day at a time. We will be taking him this Wednesday for an exploratory and possibly invasive cath. After that, we'll know if he will need another open-heart surgery. We are praying he does not. If he does, we'll face it when the time comes.

Our 4-year-old daughter, who came home in Sept. 2008, was born with transposition of the great arteries along with several other defects and cleft lip and palate as well. She received open-heart surgery on Sept. 30, 2008, and has had 4 other surgeries since she came home, 1 on her heart and three for her cleft repairs (lip and palate).

But what is all of this really like?

I hear people say so often: we couldn't do that; you are special; you must be superwoman, etc.

The answer to all of that is we are not special and I am definitely not superwoman though some days I wish I had her superpowers! In all seriousness, we couldn't do it either without the Lord's help.

Most days though are really not that different for our three children born with heart disease, ranging from minor to complex. They run, play, skip, swim, dance, etc. Some of them take daily meds, some have to face unbelievably huge surgeries and they do it so bravely. I admire their courage every day.

We do spend more time at doctor's offices than we used to, we do have to schedule around our children's surgeries and we have to endure those alongside them, we do have to make sacrifices in order to care for our children's needs financially, but we are blessed immeasurably more by their love and the joy they bring to our family. We know that our family is different now and that many people do not understand why we would choose to adopt children with known medical conditions. We really do not have any grand answer other than to say the Lord led us to each one of them.

We like all other parents wish for a long and fulfilling future for all of our children. We however do not dwell on the what ifs as we've learned that each day truly is precious and that nothing in life is guaranteed. As we heard the news earlier this month that our 5-year-old son would most likely have to face open-heart surgery this fall we were heartbroken and saddened, but we also know we serve a mighty God who has shown His great love for our children and our family.

I really do pray every day for all of the children who wait, especially those born with heart disease and cleft lip and palate. I know they don't have a huge chance of being chosen when they have those two needs listed by their name. And that breaks my heart when I watch our two youngest sleeping soundly in their beds or riding their bicycles down our driveway or working a puzzle together.

I know that many doctors and specialists say they are too risky or there must be something serious going on inside their bodies like a syndrome. And often that is true, they do have a syndrome.

Yet having a syndrome does not mean a child is not worthy of love or finding their own forever family to love and cherish them, to choose them.

As of the other day according to our agency's blog, there is a smiling little 9-month-old boy who is waiting for his family. He was born with a cleft lip and palate and a heart condition, but I believe he was born to also know the love of a Mommy and Daddy and maybe brothers and sisters too.

I believe he was born not to remain an orphan, but to be chosen as someone's son, as someone's somebody.



I know there are other children just like him waiting, whose needs seem like too much to handle. I also know the BLESSING of being Mommy to children just like them too, and I can't imagine our life without all of our children in it.

PLEASE if anyone has read this far and has any specific questions about heart disease, I would be happy to answer any I can from a parent's perspective. I do not mean to make it sound rosy because many days are very difficult. But many more days are just normal, fun, carefree, crazy, and love-filled!

Adoption Reality #1: When Your Vision Is NOT Your Reality

Bear with me for a few lines while I share with you about this post and hopefully a few more to follow. I mentioned in my last post on this blog that I was taking a break from posting at my personal blog … and I still am. For now.

I received so many beautiful comments and a few really smacked me in the face if you will … all with the best of intentions and all ones I REALLY needed to hear. Several sweet readers reminded me that people need to hear about the realities of adoption. Wow. So VERY true. And these readers hoped that I would not forget that and would continue to share honestly and openly as I felt led. I really do appreciate their encouragement and felt like I needed to quit wallowing so much and share on here in a way that would hopefully help someone else after me.

I decided it is just not in my nature to keep it all to myself, and honestly I've been still and I do feel God wants me to continue sharing and being a voice for those children who still wait … in a way that will hopefully help future families who may face an unexpected need or a shut-down child or a child who is completely and utterly out of control. Or I may be able to help a Mom, who like me, is feeling completely overwhelmed with her new reality and perhaps even a bit disappointed in herself for feeling this way at all.

I think knowledge and education and UNDERSTANDING are so vital, because without it how can any of us navigate much of anything that is hard work?

I *hope* to do a series of posts here on No Hands But Ours as I am inspired. Honestly I don't have a schedule laid out or even a rough draft of topics, however I do have a few that I'm allowing to soak and a few that are just itching to get out!

Without further ado, I will jump right into Adoption Reality #1: When Your Vision Is Not Your Reality.

The day The Prez and I met our two sons in China, June 21, 2010, I was in total shock. And that reaction honestly shocked me.

First of all, I had stared at photos of our two sons for more than a year for our older son and nearly a year for our youngest son. I had VISIONS in my head … and tucked in my heart. I had studied the photos, read every line of every little morsel of information I'd been given about each one of them, talked to people who had met each of them, studied the photos again, and of course carried the photos with me everywhere I went.

I had the visions. I had it all figured out. I mean, I had done this before. As The Prez says, This wasn't my first rodeo. Oh but I had so much WRONG … in my vision of our youngest son. My vision of our older son was and still seems to be fairly accurate, but I had so much more information given to me about him by those who know and love him … and by other children who knew him in China. And while they all shared such similar thoughts, no one but me knew what the others had shared … so I felt it was fairly accurate and spot on. And it has been so far.

But our younger son … the information I did have was from people who met him for a brief time and several years prior. Of course he had changed and grown older … and lived that much longer in an orphanage without a Mommy and Daddy and a family to love him unconditionally in a HOME.

Some of you may remember he came to us with a large bandage on his head and just removed stitch scars (as in they took him by the hospital on the way to meet us to have the stitches removed). When we met him, he was silent, still one minute, trying to climb out of a 15th-story OPEN window the next, SILENT, unaffected by his caregiver's departure and SILENT. No crying, no words, no mumbling, no care in the world if we hugged him or not, talked to him or not, nothing in terms of a reaction really. The only reaction we got was with his little Fisher*Price camera. Meanwhile, our older son was everything we imagined and just the sweetest, though I now see that he was very scared and sad. I knew it then but I wasn't able to read his facial cues and nervous habits then … I suspected he was feeling all of this and he was but I couldn't say for sure on that day in that moment.

But our younger son. He just went with the flow. And that scared me. Now that I know him and his personality so much more, I now know he was in shut down mode. He had traveled a long distance, and he had no idea what was happening to him.

I had emailed back and forth with our agency coordinator about our younger son because we discovered what we thought and a doctor thought was a separate special need than the two which he was listed with: cleft lip and palate and repaired heart disease. I'll share more about that someday as we are honestly still not sure what is going on or if he in fact has another need, but alas our coordinator asked me how are YOU doing? to which I replied (and hence the subtitle of my post): My Vision Is Not My Reality Right Now.

And she understood with that simple phrase the state of my heart and the state of my current existence. I know this may shock many others that I was having such a hard time in China with our younger son, but honestly he was so WILD and uncontrollable in one instant and totally forlorn and silent the next and just … not who I had imagined him to be.

BUT, big BUT, he is still the same little boy for whom we begged God to allow us to adopt.

It was me who needed to get my heart righted, not him who was not right. A BIG difference.

I have to give God the glory for bringing to pass His perfect plan for our trip. I don't know that I ever shared on our blog that we were within a couple of hours of booking flights for the Prez and our 11-year-old son to go to China in April for our 10-year-old son when a door was unexpectedly and quickly shut. I realized very quickly in China that MY PLAN of them going in April for our older son and me going ALONE in June/July (whenever paperwork was done) would have been a disaster. Oh how God loves to PROTECT us and to bring about our best interests. While I was coming unraveled at the seams in China, the Prez was as cool as a cucumber and in complete PEACE about our new normal. And he was CERTAIN all would be fine, whatever that fine was. I took great comfort and REST in that, and praised God for bringing us to China together to bring home our sons.

As our time in China drew to a close, I was thankful. Yes, there was sadness over leaving the boys' birthcountry, over not having that BREAKFAST BUFFET every morning, over leaving dear friends we'd made along the way, over having The Prez WITH me 24/7 to help me find our new level of normal … but mostly I was just ready to come home. I missed our other two children and they missed me. And I just wanted to come home and navigate my way through the first days home, the myriad appointments (still working through those), the hard work of attachment and bonding, the laundry … finding my way as the mother of FIVE children. I know too some that sounds like such a small number, but to me it sounded HUGE. And still does many days.

I think I'd be lying if I didn't admit to enjoying the build-up to an adoption, the faith-filled reliance on God to bring it all to pass, the friendships you build with others who are waiting with you … the abandon to the unknowns … all of it really. And then it happens and you realize, THIS IS IT. This is what we've been praying and waiting and longing for … for the past 15 months ... with those photos in hand and visions in my head.

This.

And it hit me like a ton of bricks this time. The REALITY of our new normal.

Now I want to be honest in saying our younger son is a beautiful little boy who loves match*box cars, noodles, squealing and smiling, and riding in any type of vehicle anywhere … whether it be motorized or not! He is a ball of energy, an accident waiting to happen, a little peanut who disappears like Houdini (and thinks it is funny to keep hiding when Mommy is frantic to find him), a younger brother to three older brothers and a *big* brother to one very confident little sister, who happens to think he needs her constant advice and direction. ;) He is also very affectionate, can be demanding, a little bit ornery and very much knows what he wants and when. And given a sword, a stick or just about any other object, he becomes a ninja warrior ready to take on his next foe … or his little sister. The sweet little boy I had envisioned had turned into a big boy with his own likes, dislikes, quirks and smirks, moves and a groove that did not necessarily fit into my order of how things are supposed to work.


Yet in the midst of all of this, he is the same little boy for whom we longed so deeply back in February when we received the devastating news we would not be allowed to adopt him along with his older brother. He is the same little boy who charmed visiting missionaries in 2006 and 2007 and who bravely endured life in a poor orphanage in China watching countless children go home while he waited for his chance at a family. He is the same brave little boy who endured three major surgeries in China alone without a Mommy and Daddy by his side.

And he is my precious son, my fourth son, my surprise blessing.

I don't doubt he will continue to fill our life with surprises and that we'll be surprised along the way just as we were earlier this week in the cardiologist's office. We knew our son's tetralogy of fallot had been repaired in China more than three years ago, and we knew he seemed to be thriving despite living in a poor SWI as an orphan. We also knew the reality of not knowing for sure, of not having any medical updates, of taking a leap of faith on a file dated more than two years prior, of the seriousness of his heart defect and the possibility that his heart was not as healthy as we had hoped.

Our cardiologist thinks our son's heart has a serious need that needs to be repaired as soon as possible. A need that can only be repaired with open-heart surgery. We have an upcoming cath on September 1 where we'll find out for sure, but it looks like open-heart surgery is in our … and our son's near future.

This was certainly not the vision I had imagined for his first few months home with us, but it may very well be our reality. And as I think of that possibility, my love for him swells even more as I just want to whisk him away from the realities he may soon face. But as we continue on I urge others (and myself) to remember that while visions are good, we all need to prepare our hearts for realities that may in fact not match up with our visions.

And I'm challenging myself and perhaps some of you to step back and take a fresh look at our realities … and thank God again for those realities in our lives who bless us in ways we never ENVISIONED!

In my next post, I am planning to share about Adoption Reality #2: Bonding Between Siblings.