52 Weeks of Family: Week 22

Mila:

What a drastic difference this week was from last week...and hallelujah for that! You were peaceful and engaged and at ease. A weight had been lifted and I don't even know what the weight was or how it got there to begin with. I secretly wonder if your dental procedure was a big trigger for you? If waking in pain and in a strange place was just too much for your tender heart? If the one person you are learning to trust 'did that to' you and it pushed you back into "gotta protect myself" mode?  I want to promise that that will be the last time something scary happens, sweet heart but I can't guarantee that. I can and will promise that you will have a Mommy at your side no matter what. Your heart can learn to trust that---Mommy is always here, even during the really yucky weeks when you are doing everything to push people away. And Mommy is still here during the good weeks when you are opening your heart up again.  That's what mommies do. That's what YOUR mommy does.

In an attempt to redeem a meltdown experience at a local park from last week, I took you back but to a different area with wide open spaces and no looming trees with dirt paths. You saw the docks on the lake and ran to see if there were any fish...like, literally RAN; this isn't something that you do.  We spent a half hour just watching the water and different men fishing from the dock. I had no idea this would be something you would enjoy. (I made a mental note to see if we get the Fishing Channel on our satellite...you know, for my 14 year old daughter?!)

You also really enjoyed seeing the fish at a special event at the local aquarium. Again, I did not see that coming. You had no interest in the touch tank (which I expected) but you happily roamed from tank to tank looking at the different sea-life, even correcting me when I miss identified an elephant seal ?!?!  (Do they have a lot of elephant seals in Albania?!) 

 I think what made me most proud was how you responded when an over eager volunteer put an otter pelt too close to your face. You immediately stood up and declared "Mommy, scared. All done" and waited for me to escort you out. You didn't meltdown or storm off. You calmly told me what you were feeling and trusted that I was going to respond in a way to make you feel safe---in this case we left the area. That was a HUGE moment of growth, honey.  We are getting the hang of this. 

Isaac:

Your response at the special zoo event was slightly different...and classic Isaac, I must admit. While quietly listening to the zookeeper about the bald eagle she was holding, you raised your hand to ask a question--and because it was in sign and Isaac-speak I had to translate the following: "Yes, um, my son would like to know if the, uh, you know bald eagle, knows the words to Jingle Bells"  I looked to you to confirm this is actually what you wanted to know and you nodded your head vigorously. "Yes, ma'am. Can the eagle indeed sing Jingle Bells?"  Sadly, the eagle did not know the words to Jingle Bells and because you asked the same question of the ferret handler and the barn owl person, we can confirm that 100% of those animals are not familiar with the age old Christmas classic, Jingle Bells.  I have ZERO clue why this question was so important to you but I was proud of how you sought an answer to a question that clearly was burning a hole in your head. 

Does not appear to have the face that hums a Christmas jingle frequently. 

Probably wondering if those crabs can single Jingle Bells. We didn't have a chance to ask.

Isaac, you are a hugger. You are just a physical kid in any manner, but you speak HUGS fluently. That is not a language your sister has felt comfortable with and that has been a struggle as you seek ways to communicate with her, so we have had to talk a lot about ASKING if Mila wants a hug and being okay if she says no thank you. Being the flirtatious kid that you are, you found a work around: you open your arms up wide, flash your award winning smile and declare "Come here, Sista. I hug you, ok?!" and then you go in with a sneaker-hug...and it works every time.  Your sister melts into you and then I melt from across the room.  Good job, buddy. You are winning her heart. 

Me:

I've been re-reading Hinds Feet on High Places, something I do every 10 years or so, and was reminded again just how often I need to lay down my own will before the Lord--my will for myself, my will for my family, my will for our future.  My own understanding of how to walk my children through healing and safety is never going to be enough, and honestly not really my primary purpose. I have been given the role of handmaiden/helpmate/little shepherd girl on their journey to the Lord but I don't get to choose their path, their hurdles or their healing. When I do lay down my will, I get to see the Lord at work in their lives and it's pretty awesome. 

World Down Syndrome Day 2019

News flash...I have two kids with Down syndrome. Count them...TWO.  Most people look at me like I'm bonkers, one stranger not so graciously asked "are they BOTH yours?" You could see her brain short circuiting:  TWO. AT. ONCE. SO MANY CHROMOSOMES. CANNOT. COMPUTE.  But then one woman, a Chinese-American mother of a seven year old with Down syndrome stopped me short with her question.  It was honest, and raw and from a deep place within her:  "But...why?"

I truly was not offended, but my heart did ached for her.  I could feel her pain when she saw our two Asian babies next to each other. She was still grieving the 'loss' of her 'normal' child; and not only was I celebrating my 'less than normal' child...I sought out a second one.  She didn't yet see the joy, hope & promise set before her in the child and all her chromosomes playing at her feet.

Is my life different than the average family's?  Yup.   My kids have struggles in life that other kids don't, but they also excel in areas that many typical children struggle with.  We emote well and joy comes easily; we give deep hugs and blow kisses to strangers in the parking lot. Depression and fear is not a part of our lives--sadly, both becoming more and more frequent in neuro-typical children.  In this fast paced society, those extra chromosomes have forced my family life to be thoughtful and evenly paced.  It is indeed a gift.  We celebrate EVERY victory--from remembering to say 'excuse me' (or "beep-beep", in Isaac's case) after burping to reading a sight words at school or successfully getting on an escalator without getting eaten alive. We take nothing for granted, because for generations and generations before us no aspect of our current life was expected: "He'll never have any quality of life. It's better if you just put him in an institution and move on with your life. You can always have another baby." was standard medical recommendation.

Is it more work?  Maybe. Some days it's a hard YES, but most days it's just maybe. Because here is how I look at it:  Michael Phelps is an incredible athlete. There is no questioning it. Swim records and awards as long as my arm...as HIS arms!  Simone Biles is also a stellar athlete. She continues to crush long standing gymnastic records with power and style. Both are matchless Olympians and have trained for hours upon hours upon hours to hone their natural skills with such quality.  However...Michael Phelps has a TERRIBLE floor routine and probably couldn't cross the balance beam with his giant feet-flippers if it were on the floor. And I suspect Simone Biles's 100 meter fly will NEVER even make the community pool leader board.  The point is you can't compare these two amazing athletes. Their bodies are different, their styles are different, their training is different. My kids are Michael Phelps in a Simone Biles world. What comes naturally because of that little extra chromosome is, in many ways, exactly the 'wrong sport' for our world. So yes, it is a lot of work to figure out how to get educators and health care providers to speak Backstroke to me when they are professional experts in Back Hand Springs. Close but no cigar.  That's why I'm the mom cheering on the 200 meter butterfly in the middle of a vaulting competition! We always stand out *just* a little. The trick is making sure that my kids don't loose who they are--they don't have their natural inborn swimming skills squashed--while they are learning to also work the high bars and pommel horse with some measure of grace that comes so easily to everyone else around them.  (Truly, a more accurate Olympic analogy would be traditional gymnastics vs rhythmic gymnastics...'cuz it would totally be my kids in the corner twirling their ribbons on a trampoline!)

So the question remains "but...why?" from the hurting momma who doesn't understand why I chose this life.  Because somewhere in our earthly history Satan planted the lie that lives that hold that little extra chromosome weren't worthy to exist.  One little chromosome. Something so small our brains have no unit of measurement to compare it to. That one little minuscule speck is the only thing that separated my children from a life of value and honor that is afforded every other human on this earth by virtue of their birth. Because we are ALL created in the image of our Heavenly Father and that has nothing to do with how our bodies look or brains function.  The Spirit that breathed life into me breathed life into that little extra chromosome. Because the Love that died for me, died for my children and the millions of chromosomally enhanced people like them.  Who am I to say 'no' to something as beautiful as Down syndrome?

So on this day, 3/21, we celebrate the little bit of extra that makes my Michael Phelps family stand out in this Simone Biles-Bart Connors-Mary Lou Renton world. Come jump in the 'pool' with us! 

52 Weeks of Family: Week 21

Mila:

There is no two ways about it, honey...you and I did not have a good week. If there was a boundary, you pushed it; if there was a button, you pressed it. And to top it off, I apparently tripped all of your trauma triggers this week. I don't know if it was the time change or a jet lagged response to your dental procedure or what, but it wasn't pretty. God bless us, one or both of us cried every day this week. I'm hunkering down for the long haul; the first year home is hard, but months 6-9 are rumored to have their own special flavor of hard. It was different for your brother. He spent the whole of his first year in and out of the hospital, but I've talked with other families who have described the nebulous place of Out of the Honeymoon Phase but No Light At The End Of The Tunnel during the first year home.  I have to remind myself just how not normal this new life is for you---people just don't go walking in the woods for fun where you grew up and being asked to stand on a chair to fix your pants was strictly forbidden (I assume).  I take these things for granted, honey.  I'm sorry. I can't promise I'm going to get it all right, but I do promise to course-correct when I (finally) do see we are going to fast or headed in the wrong emotional direction. 

In happier news, you got some new puzzles this week and are loving them. It doesn't take you long to figure them out and have progressed from 24 piece up to 48 pieces by yourself! 

Your little accent is coming to fruition as well. The English "W" sound isn't present in Albanian so you've adapted your own little drawl around it, which I kinda hope doesn't go away. <3 And you've some how invented a verbal umlaut that flips short Os and Us into long Is. I have no clue how you do it, but it's cute! 

Tomorrow = Tomorr-ah

Sunday = Sign-day

Monday = Mine-day

Isaac:

You buddy, LOVE your sister. You want nothing more than to love her and copy her and be with her at all times. You haven't figured out yet, that she is 14 and most big sisters don't want little brothers IN their space all the time.  (It is indeed both annoying and precious).  The car has become a good place for the two of you to bond...both confined to your corners of the vehicle...usually over music (your current shared favorite is the Mary Poppins Returns soundtrack) and sometimes over one of you being silly to get the other one to laugh. 

You clearly picked up on the stress of the week and decided the best way to get my attention was to dust off some long forgotten behaviors from the archives. Uggg. Buddy, that worked, well played.  Here is the deal, son, yes, sometimes my attention is split, but there will always be enough love for you. I promise. You are growing and maturing and I am confident that the Lord waited to bring your sister home until your heart was ready to share your momma. You were ready!  And I'm not going anywhere <3 (I plan on reminding you of this daily when you are a teenager and want nothing to do with me!)

Me:
'Twas a rough week so the timing of being able to attend part of the REFRESH conference this week was perfect. Worship, the Word and people literally walking around handing out free Cokes and candy bars?!?!  Heaven, right?!  To the fine minister of Christ who handed me a Reeces Big Cup and thanked me for being an adoptive parent...I've written you into my will!

52 Weeks of Family: Week 20

Mila:

You had a great week at school and responded to your dental surgery AMAZINGLY well. I was prepared to baton down the hatches after your procedure but you surprised me and bounced right back! 

I'm learning that your compassion comes when you feel needed, or perhaps when you have the authority to love (if that is a thing).  I've asked you a couple of times to do something to help your brother this week, helping with his coat or pushing the stroller or getting into his car seat and you JUMP at the chance to lead with compassion.  Maybe Acts of Service is how you show your love?  I didn't see it mentioned in your handbook *sarcasm* so you'll have to forgive me for being so slow to figure it out!    There have been a couple of times Isaac has needed to apologize to you (for some sort of little brother offense), and his apology often comes in the car.  This is what I hear from the front seat:

Isaac: sista? I sorry. (signing sorry at the same time for extra emphasis). Eyyyyeee you (I love you).

You: Oh, I wuv you too. (I can hear the eye rolling from the front seat)

I want to hold on to those little conversations FOREVER <3 

There are some areas that I am still desperate to win your trust; to convince you that your heart can lean into mine and I will lead you safely. I bang my head against the wall but apparently you just aren't ready.  I was begging the Lord to show me how to help change this when He softly reminded me of even after nearly 40 years of walking with Jesus I too still have areas that I haven't submitted to His Trust; I just don't know if He'll keep me safe; what if He doesn't? I'll need to have my own back up plan; to trust my own instincts; to see with my own eyes. That little heart convo led to my own tears while you were having yours.   You and I, Sweet Girl are going to figure this out together while letting Jesus lead us both. 

Isaac:

I was so impressed with how well you handled your sedated dental procedure this week.  You've had multiple surgeries and procedures and waking up from sedation has always been a nightmare. Your separation anxiety has always been at it's highest when waking up in a strange place surrounded by strange people. I recall being rushed into the PACU after one procedure and six adults holding down your tiny 25 pound panicked body as you were waking up. It was beyond heart breaking. Each procedure since, we've worked to make that post-op time as limited as possible.  Fast forward to the last 6 months; emotionally, you've grown tremendously!   And this week you easily left my side to go into the operating room and returned to me peacefully. The PACU nurses reported "It was so cute!  He opened his eyes, stretched his arms out above his head like he was waking from a good nap and asked 'mom?'. We told him you'd be here soon and he was totally fine.".  That is such a big deal!!  Well done, buddy. Your heart is growing and feels safe. 

Fearless riding of the grand carousel rabbit!

  Burning off some energy riverside in the sun!

Me:

I was blessed with a couple of deep heart to heart conversations with different adoption friends this week. Oh how I needed that. It's a precious gift to have people who 'speak your language' and who can finish the sentence "God is good, but this is hard" before it fully leaves your lips.   I also got to spend some time outside, in the dry, and in the sun. My body (and Vitamin D levels) needed that!  Trees, water and sun. That is it's own love language in the Pacific Northwest. 

My two goofballs helping me walk this road of faith.

Dental Day

Today was the big day for my kiddos' mouths, Mila specifically.  My sweet girly had never been to a dentist prior to coming home in the fall. We have a great pediatric dentist that was prepped and ready for her history and has been eager to help bring Mila to health.  Consistent with her extra chromosome, Mila has had a delay in most of her adult tooth eruption, but also none of her baby teeth have fallen out which has made for some creative crowding in her mouth.  Today, in addition to her first full (power) cleaning, she had all her remaining baby teeth removed and fillings put in all the right places.    Since Mila was already scheduled, Isaac was scheduled as a convenience to place some preventative fillings in some of deep-deep groves of his baby teeth.   

I was so thankful to our missionary friends in Albania who sent Mila a video quickly describing her procedure today so she wouldn't be scared. We watched the video a couple of times today and she was ready! No fears. No tears. 

This kiddo is a pro in the surgery suite.

He was telling his sister all the ins & outs.

Off she goes!  Drunk on sedatives and singing Let It Go. (Turns out she is a chatty drunk!)

Waiting for his turn as only Isaac can.

Isaac's turn... 

Just in time for Mila's return from the OR:

Only took playing "Let It Go" on repeat for an hour & half  to get this girly ready to go home. All the staff were singing along too.

Opening his post-op surprise, but stilled pretty loopy. It took him several hours, even after we got home for him to wake up. He was on his own personal tilt-a-whirl and it was pretty funny!

They are both sound asleep warm in their own beds with fresh healthy smiles ready to go for tomorrow. 

52 Weeks of Family: Week 19

Mila:

You've had a really peaceful week. In fact, I can't think of one meltdown at all. Progress!  Although, you've been yelling at your brother more, you are also quicker to resolve issues and have even--dare I say it?!--reached out to him in kindness several times this week.  I changed my strategy a bit to help you learn to show your love for him (even if you are still yet developing it)---do you want to help make Isaac's lunch?  You do?  Yeah!  That will show him that you love him!    Can you put Isaac's folded clothes in his room?  Yes?  Good!  That shows him how much you love him!   This has flooded over into YOU finding ways to love on your brother...and you like 'getting caught' anytime I see you being kind and generous with Isaac. *wink*   We'll keep working through this. Any movement forward is a win in my book. 

You are also still trucking through your own neuro re-organization and right on schedule for a 9 month old (we met 9 months ago).  This week you identified a stuffy to all your own to self sooth with.  Up until now you haven't even blinked at a doll or stuffed animal (outside of your Elsa Barbie), but something clicked this week. It may seem odd to get excited about my 14 year old cuddling with a stuffed bear, but this is actually HUGE. You are feeling safe enough to not need many of the stimming behaviors that you developed through life long institutionalization. It is a bitter sweet celebration as we have to first acknowledge why those behaviors are there to begin with---and that is heartbreaking---but we can celebrate that your sweet heart is healing now. That is the victory!

You are also starting to tell me when you are full and actually leaving food on your plate!  This is a victory as well!  It didn't take me long to realize you would literally eat anything and everything put in front of you, and that is not good. For months I've been giving you smaller portions and always asking if you want more, and you always say yes, which means I always give it to you. Making sure your brain knew that food will ALWAYS been available when you need & want it was far more important that any potential calorie issue.  And except for bananas (your absolute FAV) you have yet to ask for specific food.  Leaving food on the plate feels like a phenomenal first step.  You have also turned your nose up at a few items this week---also a really big deal!  Your body is learning not only that food will always be available, but you can have food you enjoy.   Cheeseburgers, yogurt, bananas, turkey sandwiches and anything chocolate are high on your Yes Please menu. *wink*

New Mila-isms
What happened?! = new open?!
A Whole New World (theme song from Aladdin) = underwear (imagine this being sung...loudly)
Yogurt = oh-gurrl
Tomorrow = t'marrah (with a deep southern slang that you did NOT get from me)

A celebratory hamburger after getting three immunizations. Such a brave girl!

Isaac:

The expected snow missed us by 200 miles so we've had some cold but dry & sunny weather...which means OUTDOOR time!  I put you to work one day washing the car windows; you took the liberty to do some touch up work with Windex on other areas of the car...and you did a very good job <3 

I feel like the following scenario describes you to a T:

You've been trying to learn how to ride your scooter for several years and just don't have the coordination down yet, but we keep trying!  After falling off several times, you brought the scooter to me:

Isaac: Momma. Bwoken. Fix it?

Me: Umm, buddy. I don't think it's the scooter that is making you fall off. It's not broken... 

Isaac: Hmmm.  I know!  (throws his finger from his thoughtful chin position up into the air with a wild Ahhh-ha! and then runs off)

This is where I find you next...

...in your white medical lab coat, taking the scooter's vitals while wearing an oxygen mask! hahahaha. I can't make this stuff up.  It seems I may have been sending you mixed messages on how we fix bodies vs. fixing things. I'll promise to clear that up at our next staff meeting. 

Me:
I haven't been sleeping well. Too tired to type...