high impact

You know that feeling you get when something finally comes with clarity into your mind, and you think "how on earth could I have possibly lived this long with this in the fuzzy background and only just found focus about it now?"

I had one of those moments last week.

High impact kids impact each other.

Not exactly rocket science, is it?

I have known with full clarity that high impact kids impact me.  And, honestly, I've known they impact each other too.  But it really came into focus that there are times when their needs just seem to multiply among each other.  (They heal each other, too.  We see it all the time.  I can write about that on a different day.)

When parenting high needs kids - whether medical needs, trauma background, developmental disabilities, or just quirky kiddos - you spend a lot of time managing the moment and not a lot of time reflecting on the big picture.  Life is often lived in survival mode.

We have six kids right now.  And I think it's safe to say that most of them need some pretty intense, medically-attentive, or special-needs-style parenting in this phase of life that we're in (and don't even get me started on the vague fears floating around my brain late at night about the psychological ramifications for the one or two others - depending on the day - of being the "easy" kid).

At a developmental assessment last week for the baby, we learned what we have suspected since our very first days with her.  There is tangible impact of what was probably a traumatic pregnancy, possible prenatal drug and alcohol exposures, and living as a very hungry baby for her first ten weeks.  The behaviors we see, the slew of accommodations we make just to manage simple things like eating and sitting, the high-pitched screaming, the mad dashes to exit social settings before full meltdowns, the biting, the inability to focus for any length of time on an activity (even eating and sitting) are all very real.  And, honestly, if she were our first and only baby, I think we would be doing just fine.  But she's not.  She's child number six in our home.  And it is a daily challenge for each of us.  The impact of her needs is felt by the other children - and so we work not only toward healing for her but on healing for her impact among our others, some of whom are already starting at a deficit in their need for healing.

And I realized why we are tired.  Because we aren't parenting each of our children in isolation.  We are not working toward healing with one child at a time.  What it takes to bring one child forward may very well involve setting aside the needs of another child - or even seeing them take a step backward.

When Greg and I went to Santa Fe a couple of weeks ago and had so very many quiet hours in the car (we didn't turn on any music or books on tape - a road trip first for us - we are desperate for quiet), I cried as I recounted to him a part of the book "The Poisonwood Bible" where the mother tries to explain to her grown daughter why she had seemed to really be present for only one of her three daughters during their childhood.  She says something along the lines of "you parent from the bottom up" - meaning you only have enough mothering to give to the child who has the most need.  And from a pragmatic, moment-to-moment perspective, that is true (the baby is crying - she needs a bottle, the boy spilled milk - help him with a towel, the daughter has a science project due - get some posterboard).  And it has felt true for me these past months (this child is falling apart, that child needs that medication filled right now this very instant today, this one needs a tube feeding, and I don't think that tiny one has stopped screaming in days).  But Greg reminded me that it is not true beyond the immediate moment. He reminded me that His strength is sufficient, that it is made perfect in our weakness, that ultimately we are parenting His children by His call and with His resource.  Honestly, that just made me cry more.  But it has stuck with me.

So I'm trying to give myself and my kids a little more space.  I have written in red ink at the top of five consecutive weeks on my calendar "NO APPOINTMENTS."  That is somewhat impossible around here (cause, for example, last week we had six), but it is a reminder not to schedule any appointments that could be put off for those five weeks (which start in eight days - hooray!).  I am letting the big kids sleep a bit later.  I am taking a break from crawling around behind the baby, trying to get her to eat what a baby should be eating.  We're having spaghetti for dinner a little more often.  We utilize respite care for the baby.  I had our groceries delivered this month.  I bought each child over the age of two their own special case of soda that is all their very own.  I am at the Taco Bell drive-thru (their favorite) much more often.  My bathrooms are dirty.  I'm late to appointments (in fact, I completely forgot an appointment as I was writing this post and had to rush out the door in the middle of writing after my wise oldest child reminded me where I was supposed to be).  I drink a lot of Diet Coke.  And I'm trying to let go of thinking that "rest" is just around the corner.  By lessening all expectations of myself that don't directly relate to parenting my kids, I am hoping to create space to lessen their impact among each other.  It's definitely parenting from the bottom up.

But it's trying to find a place where I can parent from the bottom up for all of our kids at the same time.  We'll hit a breather soon - things will shift and we'll find that elusive equilibrium again for a bit.  But for now, I just anticipate impact all around, and we do what we can to cushion it.

this girl

Since I have spent quite a bit of time this morning on medical things for this girl, I thought it might be a nice time for a quick update on how she's doing.

First of all, doesn't she look great?  This was taken last night after her first "wash and press" hair appointment.  It took 2 1/2 hours!  She'll wear it like this for a week, and then we'll go have it braided.  We were kind of amazed - her curls are so very tight that we had no idea how long her hair actually is!  She's loving this new style, and we'll probably incorporate it in before each braiding appointment - we learned recently that it makes the braiding itself much easier (braiding appointments have usually taken about 3 hours - curious to see if this next one will be shorter with the pressing beforehand).  If you had told me I'd still be learning how to care for African hair after six years, I don't think I would have believed you.

With the new year and nine months behind us since her last major surgery (and a number of dilations since that time - about every 5-6 weeks), we have decided to take a new approach to managing her esophagus.  While her surgeon would like to try another major surgery, we are very hesitant to do that at this time and have decided against it.  The next surgical option for her would not only remove even more of her esophagus, it would require "reconfiguring" her stomach - with no guarantee of success and, in fact, a very high risk for failure and further complications.  Having gone that route twice now, we aren't hopeful for a surgical correction.  And with each surgery, the technical aspects become more intricate (her surgeon describes the inside of her chest like "concrete" from all of the scarring and fusing that has happened from prior surgeries).  And with the significant complications of her last surgery (nicking and having to tie off a thoracic duct, a leak from her esophagus into her chest cavity, pleural effusion, pneumonia, further stricturing, no improvement in her overall situation and actually a step backwards), we aren't ready to attempt that any time soon if not absolutely necessary.  And, truth be told, neither is she.

So for now, we will increase the time between her dilations to 12 week intervals (she is at 10 weeks right now since her last).  She can generally swallow for about 5 weeks and then the ability to swallow deteriorates from there.  This means that she will probably spend about 7 weeks of each interval relying on tube feeds, first for partial nutrition and then for full nutrition.  Before this, we have never relied on the tube for more than 3 weeks at a time (except for post-surgery times which have been a bit longer).  This is our first time attempting this, and she has lost about 9% of her body weight in the past 6 weeks or so - which is why I spent time on medical management this morning, consulting with the nutritionist about a change in formula for her feeds that will have a higher caloric density.

There are a couple of great things, though, that make this seem like the right time to make this shift.  First, she is now able to do her own tube feedings - this means that she is in control of her "food" and can eat when she is hungry - she doesn't need to rely on someone else for that.  And she can manage it when she is away from home - this has always been a challenge, both in a school setting and just in regular life situations - things like sleepovers and playdates have been impacted by not having someone present who could feed her.  And this seems to have helped her to make the big emotional jump needed to "letting go" of food when she is unable to eat.  She is also old enough and understands enough about her situation now to take a truly active role in making some of these medical decisions for herself - we laid out the surgical option as best as we could, and she has decided that she doesn't want it, at least for now.  She knows that if she changes her mind in the future, we can explore it then.  That is also a big step in being able to muster the emotional fortitude she needs - I think she feels so much more ownership and control of things.

So, overall, after six years of dilations and surgeries (we recently had to request a full list of her "hospital encounters" for some paperwork we needed to submit - and there were over 80 of them!) - she is still in pretty much the same boat.  She can't swallow without medical intervention.  She can't "eat" for more than a few weeks without medical devices. But we feel like we have reached an even place where we aren't dreading or preparing for the next surgery - we feel like we are in a place for now of "managing" instead of hoping to "fix."

So that's the esophageal scoop. Other than that pesky swallowing tube, she is ridiculously healthy and continues to be an amazingly happy, joyful kid (other than when those pre-pubescent moody spells hit every few days).  She is looking forward to camp this summer, possible public school next year, and soaking up time with the baby before little miss D transitions to her new home (eventually).  She has made big academic leaps this year and just finished her longest chapter book ever (Little House on the Prairie)!  She continues to tell us she plans to be a chef - which she proves by being very bossy whenever the younger kids play restaurant.

And, forget all that other stuff!  If I asked her the most important piece of information to share, I'm pretty sure it would be that there are only 25 days left until she turns eleven!

post-publishing-note: poor writing and grammatical errors abound here.  please excuse this tired blogger (who has abused the word "tired" beyond what is reasonable in this post).

I might be almost ready to blog again.  But I'm not really sure.

So a quick update on life for today, and we'll see where we go from here.

Last I was here, Mia turned 14.  Parenting 14-year-old girls is not for the faint of heart.  It is one of the most simultaneously terrifying, impossible, and enjoyable things that I engage in every single day.  I really like her. In fact, she just gave me a pile of mini Butterfingers and Baby Ruths!  But I don't think she likes me blogging about her too much anymore.

Noah turned 12.  So far, parenting 12-year-old boys isn't much more difficult than parenting 11-year-old boys.  Thank goodness.  He is getting ready to travel on his first missions trip (with Greg) this summer - to serve alongside a church in Costa Rica.  His favorite things are currently legos and roller hockey.  He is funny and can often be found exhausting his mother with facts about many, many things that she knows nothing about.

Lila Jaso is still 10.  She is the most joyfully-baby-competent kid I have met.  She comes in my room many mornings asking if she can get the baby out of her crib.  I have said many, many times - and it is absolutely true - that we could not foster a baby if we did not have Jaso.

Avi is 9.  He still tells us he'd like to be an architect and a farmer.  And if there were any way to move to a farm, for this boy, I would do it.  So much energy - he loves gardening and already has ideas in mind for this years' garden.  He also loves roller hockey and scored both of his teams' goals at his last game.

Little Miss P joined us in the fall and turned 5 in November. She is our long-term foster daughter - born in Uganda as a Rwandan refugee and arrived in the United States in October - the girls and I picked her up from the airport while grandma watched the boys and Greg was away on a business trip - we only had a few days' notice about her arrival and Greg was already away.  Although, she is not adoptable based on her refugee status, she is likely to be with us for the very long term, and we think of her as a permanent addition to our family.  She is funny, smart, happy, easygoing - really a lovely addition to the crew.

And Baby D is also still with us - just turned a year old.  She was within 24 hours of being moved to her adoptive home the weekend before Christmas - but there was a change in her case, and things are still in process without any firm idea yet of what will be decided.  So she is likely to be with us several more months.  And she is a force!  She came to us last spring without a voice - an undernourished, failure to thrive, tiny, sunken-eyed baby who slept 10 hours at night even though she was desperately hungry - she simply had no belief that someone would come to her if she cried.  But she has most definitely found her voice, and we are working now to help her to use it somewhat more appropriately.  : )  She keeps every single one of us on our toes.  She's a spitfire!

If I had to sum up the past six months in one word - it would be tired.  I'm really, really tired.  I think I have been at my very most depleted in many ways.  As our biggest kids get older, we realize how very much parenting time they need - it seems to be like parenting toddlers again.  Honestly, each of our six children needs so very much from us.  It is a lot.  I get really tired.  I want to be filled with joy and certitude, but many days, the overarching theme is just "tired."  I feel like I am coming back up out of that. But at the same time, I want to honor the fact that adding any child to a family (even a super easy adjustment, as P's has been) rocks the boat and leaves an enormous wake - and it takes everyone time to find equilibrium again.  We have added four children in the past 18 months (and seen two of them go home to their mom).  It is a lot. And it comes now at the same time that we walk forward into the teen years with our oldest children - and the ongoing medical management and decisions that are ever-present for several of our kids.  Much prayer, thought, and conversation is going into what that means for our family in these next couple of years.  We are committed to foster care and feel that God isn't done with us in that arena.  We continue to seek Him for what that means for our family.

I could go on and on.  But the baby is now awake and needs to be changed.  If she takes a good nap again sometime soon, maybe I'll be back.  : )

fourteen

Our girlie turns fourteen tomorrow!

 

It is so, so, so enjoyable seeing our girl grow up, find her interests and passions, try new things, think through things in her own way. 

She is funny, brave, stubborn, artsy.  This past year:

• she and I traveled to Costa Rica together for her thirteen trip
• she started to teach herself Swahili
• she traveled on her first missions trip - doing street ministry among the highest HIV-infected population in North America
• she started saving for a trip to Uganda (we don't know when or how yet, but we are praying God will give her the opportunity to go and serve and learn there)
• she began volunteering in the kids' program at a church plant in our area that serves refugees and immigrants - working with kids from Nepal, Burma, Rwanda, Sudan and more

She has also argued with her mom and dad, fought with her brothers and sister, gotten frustrated with fussy babies, and fallen behind on schoolwork.  She loves her youth group and being with her friends.  She spends far too much time with texting, Facebook, Instagram, Pinterest, and finding great cover artists on iTunes (but I let her because then she can teach me how to do all of those things).  She loves to ski and hates jellyfish, loves sharpies and hates grammar, loves coffee and hates cucumbers.

 

 

We think it's all awesome - every bit of it - because we are so very blessed to have her in our lives.  My heart hurts when I think of how little time is left until she launches out into her life as an adult.  And my mind reels at how many experiences and how much growing is ahead of her in these next few years.  It is truly like watching a flower blossom - in time-lapse photography. 

"Mia" means "mine" and I like to pretend that's true sometimes.  But she's not ours - she is a unique creation of God and belongs to Him - we are so proud of her and so excited to witness what He continues to do in her life.

hello again

Hi again!

 

Still here.

 

So I made this old blog somewhat of a clean slate.  I still have all of my old posts - I just decided I was ready for something new.

I have a love-hate relationship with blogging.  I love to process my thoughts through my fingers on a keyboard.  I have found that it's the only way I can really write anymore.  The time and physicality of writing by hand are officially beyond me.  But I find I don't really actually do the writing and the processing if there isn't the accountability that comes with having a blog - with the idea that someone, somewhere might read what I took a few minutes to sit down and write.  But therein lies the rub - because when life gets overloaded - as often tends to happen around here, the accountability of having an unattended and ignored blog hangs over me.  So I go back and forth on which I actually crave more - a place to process my introverted, tumbling thoughts or the freedom from the expectation that I should be writing here.

And then there are the connections that blogging brings.  Some of my dearest friends were blog friends before they were real life friends.  My life has gone in directions I never would have imagined because of the influence of other writers out there who shared a peek into their lives through their blogs.  I really miss that.

I have no plans for what I'll write about - it will undoubtedly include God, faith, adoption, foster care, HIV, esophaguses, homeschooling, parenting, and my amazing kids.  But it will most definitely not include chickens, because Greg says he really doesn't want any of those.  I'm glad we've got that bit settled.

So here we go again - I'm a little excited!