it's all from the waist down

Fu Gao Mei's legs, sent in an update from China

(The post below was written a few weeks ago on my blog, Tell Her This).

Yesterday was our first spinal defects clinic, where we met with her entire 'team', including her neurosurgeon, urologist, pediatrician, orthopedist, developmental psychologist (or was he a psychiatrist??), physical therapy, social worker, gastroenterology specialist, and her nurse practitioner who connected us to all of these people. It was here we discussed and learned about her condition, and the complications that have arisen from it, and how to manage them head to toe (or more aptly in her case, waist to toe).

We walked away with so much information it may take me some time to process all of it. Thankfully they are sending us a full written report of all the aspects of her care that we reviewed. I was impressed with this comprehensive approach and am grateful we are able to use this facility rather than the one here in our town (they don't have a spinal defects clinic anymore, unfortunately). It's nice that the members of the team are talking to each other, keeping her goals comprehensive while they each focus on their area of expertise.

Here's what we know.

The neurosurgeon suspects she has a myelocystocele as there is still a pocket of cerebrospinal fluid (a fluid filled cyst) at the base of her spine. From what I've read, it won't be possible to know definitely if this is her actual diagnosis. She also has tethering of her spinal cord, which for the time being we are just "watching". I am considering a second opinion as apparently the tethering is pretty significant. And though we are certain her brain is not affected, we will do a base-line MRI in the next month (scheduled now for end of March).

The orthopedist wasn't overly concerned about immediately addressing her contractures, but I disagree. Call it instinct, but I feel the sooner we begin working on correction, the better. She cannot wear any shoes since none of them stay on- and while the social aspects of this are absolutely relevant, I'm more worried about the practicality of foot covering :O) We've had our coldest winter in years and it's been a struggle keeping her feet warm. Not only that, but she's really active and is out on the jungle gym with her peers, not to mention crawling everywhere- so shoes will better protect her feet from injury. I got the feeling (as much as I find this doctor to be incredibly nice) that he believed my main concern was whether or not Ellis could wear "pretty shoes". At any rate, Monday at P.T. I will begin talking to her therapist about how I go about beginning the process of serial casting (this was recommended by 3 people we met with yesterday, surgery being a last resort). ** Clarification since you see the photo above, she does not have a clubbed left foot, she is possibly missing tendons on the ankle or they are ineffective. You can see her right foot is contracted pretty severely (points downward), often referred to as "foot drop" **

We learned from the developmental specialist what we already knew: she's shy. He suspects she may be the type that is so "brainy" that she will lack in the more "normal" range of social skills, though he's not that concerned. I was as shy as she was. I have no worries at all. Once she opens up to you... well, you're IN like Flynn (not QQ! Though I swear I would have stolen that name if didn't belong to such a great friend's kiddo). We also learned that we are her primary speech therapists, and hearing it from that perspective really opened up how important my role is- not just as her mom, but as her teacher.

With the GI specialist, we talked about potty training and we'll make that a part of her routine in hopes of achieving "social" continence, since she has a neurogenic bowel (though sometimes she does tell us when she needs to "cho cho"- I'd say 60% of the time or more).

Physical therapy made sure we were connected with the right people here in our town to begin serial casting. They checked how she was doing in general and basically talked about her improvements since we've come home.

Her urologist (who I absolutely found to be thorough, concise, & patient) talked about the results of all her testing last week. This is what we were most anxious to hear about. And the news, well, it was disappointing, but not something we can't manage. First, she doesn't void on her own at all. A neurogenic bladder, unlike ours, is cone shaped and rippled with muscle along the outside. Due to the interruption of nerve signals from the spina bifida, when her bladder begins to contract to "go", her urethral sphincter closes- which is common with her condition. Normally, as we void, that sphincter automatically relaxes. So, at most, she leaks urine. We will begin intermittent catheterization within the next week or so (we go back for a separate appt next week). **update: We've been cathing now for 2 weeks** It's necessary she be cathed in order to prevent infection from non-sterile urine being present in her bladder (which is what happens when you have urinary retention or residuals that are very high after voiding). Since she's had 2 known very severe infections (UTI's) with a big bug, and then one less severe bug, along with many high fevers, this is crucial. And she'll learn to cath on her own, probably fairly quickly I suspect since she is a "can do" kinda girl :O)

As for her kidneys, well, we knew she had some reflux into her left kidney, but not how much. We were told it was a Grade 3-4 (which is moderate to high). Not so good. I asked about the amount of damage that can be caused by that- especially in light of the fact that she's never been cathed and likely has had this issue for the 4 years prior to coming into our lives. He said there was still a lot of "healthy" tissue and that he didn't suspect she would ever need dialysis. However, what damage has been done is irreversible.

We also learned she has hydronephrosis of the right kidney (and this kidney is smaller than her left kidney). What was baffling to the doctor was that her ureter appeared normal, so there is a chance that there is some other cause of the swelling- a primary obstruction that is not related to her bladder. For the time being, we'll assume it's her bladder due to her history, and with daily medication and catheterization, he hopes to see improvement on her next renal ultrasound in 3 months.

She'll not only be on medication to help relax her bladder (so she can hold more urine, preventing the back flow), but also on a low dose antibiotic indefinitely to prevent and treat colonization with various bacteria. This wouldn't be necessary if she didn't have a higher grade of reflux into her left kidney. Thank goodness this amazing daughter of ours is such a trooper at taking any and all medicine, even the worst of it, in fact.

We have our challenges ahead and will one day be facing surgery for her bladder, but probably not until she's school aged. We were informed that she will probably face detethering of her spinal cord at some point, if not multiple times, in her life. She may have to have tendon releases done surgically if the casting isn't successful. And depending on how well we can manage her bowel, there also may be a procedure in her future for that.

But every single bit... all of it... will be worth it to help our perfect little girl live a life that is independent, and as fully functioning as possible.

She'll be guiding us most of the way, I would imagine. She has that way about her.

Yesterday, as we were leaving the clinic, I asked her:

"Did you have a good day today?"

M-n-M: "Yep"

Me: "Is everyday a good day?"

M-n-M: "Yep".

I'll take that to the bank with her any day of the week and twice on Sunday.

taking down the "adult adoptee" post

In the interest of this site, I took down the post about the "adult adoptee".

I would like to say that I am no expert and as I said in the original post, "maybe I'm naive and am missing a valid point".

for those of you who know me, you know that I am the first to raise my hand and get in line, eager to learn. i love that adult adoptee sites exist and that there is so much literature for me to delve into... i'm eager to understand.

i am for adoptee rights and understand much of their perspective. i stand by my belief though that ultimately we do have a choice in how we move, breathe, and live in this world and that what we suffer has the power to transform us - if we let it- for the better.

i appreciate the heated discussion. i'm glad we're talking to each other. i don't think it's necessary to be disrespectful. i'm just one little human in a large, complicated, puzzle. like you- all of you who commented- i struggle to find the right balance for my daughter and want to give her the best opportunities possible. i want to embrace every part of who she is- grieving, joyful- no matter what. i want to understand what she may face as she grows.

thank you for letting me share a bit of Hopgood's story with you. as i said in the post, i realize her case might be rare... but it's good to know there is a wide range in the human spectrum of our life experiences.

i hold no ill feelings toward anyone who slammed me. what's the point of being here if not to hash out our opinions? i just hope we can come to a common ground without continuing to flame one another, and realize that we're all just muddling through this in the best way we know how.

i'll be the first to hold out my hand.... and I apologize for offending anyone. i will never claim to understand the challenges the adult adoptee faces, i'm not one. but again- i will continue to try to bridge that gap as much as it can be bridged.

the best laid plans

I was married for 6 years to the man I believed to be the absolute love of my life. We had a good relationship, although looking back, I see so clearly the flaws that were ignored (in both of us) to keep that relationship afloat. Four years into our marriage, we decided to adopt- and since he was of Chinese descent, and China was the place I'd wanted to adopt from since I was 17, the choice was obvious. Three months shy of that infamous "call", he dropped the bomb. The "D" bomb, that is, asking for a divorce. In July, 2 months before the calls came, I phoned our agency and canceled that adoption. To say this was the most painful period of my life is actually a gross understatement.

Never once did I truly think I'd adopt on my own. I mean- I joined the singles-adopt-china group, you know, just in case. I kept up with my original DTC group, even celebrating with them (as bittersweet as that was), on the day they got their referrals: September 3, 2005. I wondered on that day what my girl would have looked like. Who was Gracen? What happens to her now? I fantasized about how it might have felt to get that "call". And for 2 years, I continued to blog surf, (creating my own blog in fact- under the guise of honoring my mom who died 7 months after ex asked for the divorce). It wasn't an adoption blog because I had no plans to adopt on my own.

Except that I couldn't leave the darn thing alone. The yahoo sites, the websites, the research, the contact with other single moms who urged me forward in answering the big question: could I? I decided I'd leave it open, knowing I needed time and distance from all that I was suffering. I needed "me" time- to grieve, to seek solitude, to come out on the other side.

Only, it didn't really happen that way.

Just one year after the divorce, much sooner than my "plan", a wise person at CCAI advised I apply now (the end of 2006) rather than waiting another year as I'd hoped. Their reasoning? "The wait times are already up to 16 months and climbing, so you'll still have time to work through all that you have had to face". I had a lot to grapple with: the loss of the marriage, my daughter, my mom. But I said... okay, okay. Not what I'd envisioned but that is a lot of time. Plus hey, I can always... back out! And what a blessing CCAI's advice was, since the doors were closed to singles just 4 months later.

Three years ago on this very day, I was granted the singles slot I so desired with CCAI. Since I'd worked with them the first time around and they were absolutely amazing in handling the cancellation of Gracen's adoption, I wanted to be with an agency I felt close to and trusted.
And they proved the second time around to be worthy of that choice.

When I was married, I brought up the topic of adopting a child with special needs once during our wait. He said he wasn't ready for that, that he'd consider it if we adopted a second time. So, there in the back of my mind brewed another option. Though, being single, I decided there was no way I could handle adopting a child with special needs. Except... well, could I? On my own? Because truthfully, deep down, I wanted to share this with a partner. Since day one receiving that singles slot, I hoped for that. For me, I was a "single mom to be" by circumstance, not really by choice. And I wasn't willing to "wait" for the right guy to come along to realize this dream, even though I felt numb and paralyzed during that second paper chase. In truth, it just seemed like I was going through the motions at the time.

I put the special needs topic on the shelf for almost a year, but much like coming into this process on my own, it kept popping up. In my head, my heart, and on my computer- of course. I'd find myself reading all the blogs of those who had adopted children with medical needs, and I constantly went through CCAI's medical conditions checklist... you know. Just looking it over. Just in case.

And in January of 2008, almost a year after my LID (4.4.07), some kind of crazy fire ignited inside of me. I mean mad crazy. It was as though I went from considering this idea to feeling it was absolutely imperative. My MCC needed to be completed that day, right then, that very minute, and be on its way to my agency immediately. Because somewhere, deep down, I knew she was here already, in this world. I even blogged that- and that I sensed she was "a bit older" (also something I'd never once considered, and still didn't despite that prediction)! I was still clutching my baby dream: that precious moment when a rather tiny bundle is placed in your arms and everything stands still in that room. All the other cries during those precious first moments fading into the background- it's just you and your new little one. I even had the song picked out for this moment, that was going to be featured on the DVD I planned to create for her one day.

And on the night I turned in my MCC... I saw this amazing shooting star. Some of you know that story. It burned for so long in the sky that it changed colors. It was brilliant. And it brought fresh tears to my eyes, because I hadn't seen a shooting star since the night of my mother's death, January 17, 2006. I knew it was a sign that I'd made the right decision, that God, the universe, my very mother- were shining down on me, giving me their blessing.

At one point, I ran into an old friend after a special mass at church. She hadn't seen me since the divorce and was so excited at how much I'd "changed"- I thought she was just thrilled my hair had grown out, but she pulled me aside and said, "Oh no Kris. You just look happy. I sense your greatest joy is coming". And I just balked. How could she know? I asked: "OH! Did someone tell you I was adopting again?" and she, wide eyed, replied, "NO! That's fantastic. But Kris, I have to tell you, it's even bigger than that. God has great plans for you".

In October of that year, I reunited with my old best friend from high school, Garth, and we rekindled that friendship. It's been a whirlwind romance and I was (and am) happier than I'd ever been. With anyone. He was open to this adoption and jumped in with both feet and met me exactly where I was. He's an amazing man.

And then "our" wait started, though now I was certain it would be significantly shorter since I was adopting a waiting child, and was convinced we'd be parents much sooner than either of us were prepared. We both recognized that we needed to nurture this "new" (and yet, old) relationship. But at the same time, after 5 years of waiting (if you factor in Gracen), I just felt ripe for this next chapter of my life to unfold. But God knows better and the wait for this little one, yet to be named at the time, extended well over a year.

And that long awaited "call" ... it never came. Because, you see, once again, I was being consumed with a new obsession: checking the children who are listed on CCAI's website. Those that are more difficult to place, that have complex or multiple medical needs.

And on one particular day- May 13, 2009, to be exact- not long after coming to peace with the wait, I became restless again. So restless in fact I was (yet again) looking at my medical conditions checklist and debating about certain needs that as a single, I wasn't so sure about, but with a partner, I wondered if we could manage together. I had even drafted an email to my contact in the waiting child department that day (though I never sent it), inquiring about spina bifida and letting them know it was a need I was considering.

When Garth got off work that night, he stopped over for dinner and I brought it up with him. We decided we'd sit on it through the weekend. And since I had been checking our waiting child yahoo site and CCAI's waiting list of children ALL day, I gave the computer a break and we enjoyed a wonderful evening together, the topic of adoption tabled. For like... an hour or two tops. At least until after dinner, when I found myself saying, "I just want to check one thing. One last time. I'll be right back"... and headed to the study and my second best friend: the computer! Only to find this message on the CCAI waiting child yahoo board: "I can't believe how many children are on the website! Over 20! Hope they all find homes"...

What? But there were only a handful just a few hours ago...

Of course I was compelled to look, and quickly logged into CCAI's website. Scrolling down that page, searching each face, but without any expectation: there she was. I couldn't even speak. There she was. And I whispered aloud to the room, to anyone who would hear- my dog- my cat-"My God that's her. It's Ellis".

I clicked on her file and saw her date of birth: January 17, 2006. The night I saw that first shooting star, around 4AM U.S. time- 3 hours after my mom died. I yelled for Garth to come and look. And her information had obviously not been fully translated, it was so sketchy. Just her name, birth date, and needs: "repaired meningocele, brittle bone disease (later found she did not have this), obstructed leg movement, large hairy nevus".

And as we read each one, I'd say "Okay. We can handle that, right?" until we landed on obstructed leg movement. What did this mean? Is she paralyzed? Can it be... UN-obstructed? I looked at Garth and then rambled off, almost to myself, "If she's in a wheelchair, I'm not sure I can deal with that- I mean, that takes serious resources and special equipment in our house and we have a 2 story house and...".... he just looked at me, softly replying, "Really? Well, one thing at a time. What do you want to do?" and naturally, I called my big sister. My go to person. Who was so excited she could barely contain herself. So we asked for the file, which came the very next day.

The first thing we opened were more of her photos, and these are just a few that were sent to us:

The tears came. It was immediate, that rush of feeling- was it love? Not yet. But it was that seed that had already been planted being watered. Look at her bright, beautiful smile. Look at her! SO full of life! But could we do it? Meet her challenges with her?

It took a little over 2 weeks. We wanted to be her advocate. We aren't rich, at all. We live paycheck to paycheck and have a fair amount of debt. But over and over, even on the days we were leaning toward saying "No", our hearts just kept saying Yes.

And so, yes it was. An exuberant, terrified, triumphant YES.

And instead of getting that long awaited call, the one where your agency says, "I am looking at your daughter and she is so beautiful" or "We have your daughter for you!"... we had the privilege of making our own call- the one that said we know this is our daughter, and that we can't wait to adopt her.

Was it the way I had envisioned it for so many long years? No. Has anything turned out the way I expected? Hell no.

It's just turned out exactly... perfectly... the way it was always meant to be. And she is the best kid. The easiest, happiest, most courageous little girl I've ever known. With just the right amount of stubborn- which will serve her so well in this life. And all those extraneous factors that seemed like challenges? Not nearly as challenging as we imagined. You find your groove. You realize you too are so much stronger than you imagined. And that it doesn't take any energy at all to love. You are filled as soon as you spend an ounce giving all that you can to this girl you are blessed to call your daughter.

The day before we left China, in front of the consulate, just after the swearing in, Garth- my long lost friend from high school, got down on one knee and proposed. How fortunate are we each to have found one another. How blessed I am.

Tomorrow I turn 42. And I already have every single gift I've ever wanted. Right here. In our home. And not at all the way I planned:

This family.

lesson in love

I knew I loved you last night when I was returning to bed, and found your legs dangling out of yours, half way to the floor, and scooped you up to move you back to your pillow and for a moment, watched you sleep in the glow of the streetlight peeking through our blinds. Or 7 hours earlier, when I whispered for the third time, "gai shui jiao la" (it's time for bed) until you drifted off peacefully without a sound. I knew it last night when I was cooking dinner listening while you and Baba quietly scribbled a masterpiece on the living room floor- making art and building bonds. And yesterday afternoon, when you squeezed me tight around my neck in that toddler bear hug. I knew it on Monday when they drew your blood and repeated that TB test, and I watched your tears fall. I knew I loved you a week ago (my god, was it only a week?) when you first reached out and touched me, willingly, with your hands, first my nose, then my eyes, lips, neck, chest, shoulders- as I named all my parts.

I knew it when my heart was clouded with fear in China. Yes, even then. When you first smiled, and giggled, and made those funny faces just days before we left the country that birthed you- your first home. I knew it when the only thing you wanted was indicated with the determined thrust of your whole hand- a hand that pointed and demanded, "take me outside, out of this room- back to where I came from". I knew it when I broke down too, exhausted, after you grieved for hours, even though my heart felt only the fear of getting through the next moment. I knew I loved you when on that second day, I already recognized the tell-tale sign you were tired or falling asleep- that little flex of your left foot. No yawning, no rubbing your eyes, just that little foot slowly rising and falling. I'd smile with you in my lap knowing it wouldn't be long before your body would give in and I'd feel your head against me- something you couldn't do in those first days awake. I knew it each time you'd shake your head "no" when we'd call ourselves "mama" and "baba".

I knew I loved you when you screamed for those who nurtured you for the first years of your life. Even when your grief overwhelmed me and I wanted to take you back so you could have a moment of relief from your pain, I held you and told you how brave you were, how courageous and beautiful and strong. You could barely hear me over the sound of your tears, but you heard, I think, the love under my fear.

I knew I loved you the first time I saw you, walking into that civil affairs office. Even though I was numb. Even though I'd never been a mother before. Even though you were not at all what I expected yet everything I've hoped for- I knew.

You might wonder how.

Well, I've learned that love is a choice, sweet and perfect little one. A decision and a commitment. It's not at all a feeling. You, most of all, have taught me that.

And how I am coming to love you. How my heart is blooming under your spell. You, who I call daughter. Ellis Gao Mei.