Friday, January 31, 2014

Grace, sleep, baby kicks, and rainy days....

I always wrestle with how to "sum up" life here in mere words and in a brief amount of time.

I also know there is such a wide audience of readers....those who are much more experienced than we are...those who just wonder "how" we do it...those who hope to adopt...those who are the support for those who do adopt....those who know us in "real" life....and those who I wish I could sit down and have a cup of coffee with but will never actually meet....those who pray for us...and every category in between....

I wrestle with how to paint the full picture - the struggles and the joys.  I don't want to paint the rainbow of colors - even the gray and black of the storm clouds that travel through - without showing each color.  Some days are very grey - some days burst with color - most days are a mix of both, like a swiftly moving weather system overhead.  Some days the dark clouds may be dominate for the entire day - but I only give them a brief mention.  Other days, maybe the sunshine is brief - but dramatic enough - relief enough - from the storms that can roll through, that it is worth dwelling on.

Today, as it pours down rain outside, it is one of those days with swiftly changing emotions and ups and downs inside.  We are praising God that Hope has slept through the night for FIVE days.  YES, this is a stop and enjoy the sunshine colors thing!  Of all the challenges when we add a new precious life to the mix - whether by birth or adoption - the lack of sleep is the hardest.  Now, just to clarify, I am not talking about "Oh, we didn't get our full nine hours of sleep" - because we haven't gotten that (or close to it) since The Testy Chef came home almost 16 years ago.  There have been times that we have rejoiced over getting 2 hours of sleep IN A ROW because that was so rare.  With such an abundant amount of kiddos, you can bet that someone is up almost every night.  Mimi has never been a good sleeper - beginning with needing to feed her around the clock; to just nights when she decides that she doesn't need to sleep after 2 a.m.   Then she goes back to sleep at 6 a.m. when I need to be up and moving.  We are just thankful when we can open our eyes in the morning and they are not too gritty from lack of sleep!  So, I should probably mention that 2 of these 5 nights, Mimi has been up...but 3 nights of sleep...WOW.  SUNSHINE.

I guess it is only truthful to report as well that the "waddle" has begun.  Yes, the dreaded pregnancy waddle.  I noticed it walking into a doctor's appointment on Monday.  It is still at the point that I can work at NOT waddling, but only for a little while.  I have a tough time with my back and hips with my pregnancies.  I must say that as I have been better about no gluten and dairy, I have not put on the same amount of weight with this pregnancy, but all of the sudden the last two weeks I can feel the weight.  Little Man is a very busy little one - many kicks and gymnastics going on all hours of the night and day.  Some moments 16 more weeks seems like an eternity....other moments, it is not enough time!  My favorite new "old" quote is "The days are long, but the years are short."  AMEN!!!  Some days seem like they will never end, but I blink and the week is gone again.  I will be forty this year...where has the time gone?  Oh, to have back those years with the perspective I have now.  (Okay, now I am sounding old too!)

Hope is still doing well during the day.  There are times that she does thinks that we all cheer over!  Glimpses that there is much more going on cognitively than we had assumed.  She follows me with her eyes as I move throughout the day and is concerned when I leave the room or the house for an appointment.  This a very important step with bonding....that she even notices people around her and that she is focusing on me in particular.  She loves to be held and is anticipating the rhythms of our life...when it is time to eat, when we rock-a-bye at night, when we all sit together, when it is playtime.  Again, to "paint" the full spectrum - some days it is very, very difficult to see the amount of damage that has been done to this little girl.  It is one thing to know and discuss the results of "institutionalization" - it is very different to see the effects of it even on the tiniest areas of a little life.  Things we don't even THINK about in "normal" life.  Some days, I have to focus on the little joys because the big picture looks so bleak with such damage...other days, I cannot believe the progress I see in her.  (Recognizing the progress that seems "huge" to us, yet may seem not worth mentioning to others.)  Long term, I am confident she will move and walk.  I don't know about speech - there are such huge gaps and missing pieces.  These huge gaps have nothing to do with her diagnosis - and everything to do with 5 1/2 years of nothing.  No interaction, no love, no touch....nothing beyond the basics.  Yet, I also know we would have never believed Mimi would be where she is now...and recognizing the power of our Savior.  I don't know what He has in store for her.  We love her as she is now....everything else is just frosting on the cake.  How do you sum up a human firework?  An explosion of colors!  She just never. stops. moving.  She is still just full of life - it bubbles out every crack.  This week though, we have moved beyond the expected "honeymoon" stage.  She is feeling very comfortable.  Her tummy is feeling full.  Her "love tank" is full.  So we have moved on to the next level.   I welcome it as I see it as part of her journey - but it is also hard many days.  She is getting picky about food now - so we throw it, squish it, spit it out, torment with it, ignore it, refuse it, demand specific things.  I put plastic dishes on the shopping list this week as we throw those too.  With a child who has been with us from birth, these things would be dealt with much differently - but with a little one who has only been here for 7 weeks, it is not so straight forward.  How to correct without undoing all the progress so far?

She also is a tornado in her ability to destroy a room in short order.  The rest of my treasures go to AWANA at church on Thursday nights.  I stay home with the 4 girls (Mimi, Grace, Hope, and Serenity).  I am home alone for about 2 hours, during which I need to feed 3 of the 4.  So I am limited in how quickly I can get up and redirect the "tornado".  Last night she managed a complete destruction of the family room as I was in the living room (just around the corner).  I chose to laugh instead of cry and couldn't wait for the other kids to get home to see their reaction to what she had done in such a short amount of time.  Even as we laugh though, it is something we are going to have to figure out.  If we only had the 4 girls, I would put everything up and away (not to mention we would have a lot less stuff!) so that we could control the chaos.  But we need to enjoy life as a family...and do home school...laundry, etc.  We need to enjoy the days, not lock them away.  Another subject for prayer and patience....

And finally, our little Grace.  What a treasure.  What a gift we have been given.  SUNSHINE!  I had been dreading the trip to the orthopedist as I thought her scoliosis had gotten much worse in the last 7 months.  I had completely forgotten about her hip, how did I forget that?  Praise God, her scoliosis looks unchanged, if not better as she is relaxing and stretching with the Botox and therapy.  HOWEVER, her hip needs surgery...soon.  The doctor was thinking April or May.  Ummm, Serenity will most likely have her surgery/surgeries - which are critical - in April.  And, oh yes, Little Man is due in mid-May.  Hmmm....  So her hip surgery will be either the end of Feb or beginning of March.  She will be in the hospital 3-4 days and will be in significant pain.  Oh, that brings tears to my eyes.  She will then be in a half-body cast for 4 weeks.  The doctor said the two worst days are the day right after surgery and the day the cast comes off.  Little Grace had such a hard time with the g-tube placement, I am struggling to even think about this.  She will need to have the other hip done in the summer time (it is not as bad).  On one hand, I am very thankful that we have time to get it done before Serenity's surgeries and Little Man arrives.  On the other hand, I just am sick over her being in pain.   I also know that these next weeks will be very, very full. 

So much to pray many, many areas that we will need His grace and provision.  My time is gone this morning to type.  Need to go take care of a few "rain storms" and rejoice over some bursts of sunshine, too.

To God be the glory, in all things!

Sunday, January 12, 2014

A Quiet Moment

I have a moment of quiet here this evening...I cannot tell you how often I think, "I really need to update the blog!"  But when I look at my list of "to dos" there are too many there in front of blogging!

We had our first appointment at our fabulous Children's Hospital about 2 weeks ago.  It was a VERY long afternoon, but very worth it!  To save some time, here is a "cut & paste" of an email I sent to a friend...

"We finally arrived back home around 6:30 p.m. (left at 12:45).  I was ready for bed!  It was a long, exhausting afternoon but very good overall.  We met first with the doctor who will be the “case manager” who got very excited (as only doctors can do!) after seeing Hope’s extra toe and came back about 15 minutes later with a HUGE medical book and a bigger smile to tell us that Hope had a very rare form of her issues.  There are “only 13” in the medical textbooks.  As I said, something only a doctor could be excited about.  (We know Mimi’s chromosomal deletion has only 3 cases in the textbooks – but we know she isn’t in the textbooks, so we doubt the numbers a bit.)  I wrote down the medical term, but there is very, very little said about it other than the extra toe.  So not sure how helpful it is. ;-)

The cranio-facial surgeon was very, very friendly.  One of our big concerns was that Serenity (and Hope to a lesser degree) had missed so many “windows” of time in which she was supposed to have surgeries done.  But he indicated that the “plan” was slowly being changed to wait until the kids were slightly older (in the 3-4 year old range) to restructure the skull.  He said all of his previous patients with Aperts who had surgery at a year old, had to have it redone at least once.   But those he waited until they were slightly older did not have to have a repeat.  That was such a huge relief.  As we suspected, her cleft palate was not completely closed.  They will also detach at least her pinkies and other pointer on her left hand.  It sounds like they do not necessarily detach the two middle fingers as they are usually more misshapen and not as necessary.  Then they will move onto the mid-face surgery.  I think the skull will be in between the palate and the fingers, but they are still deciding the best plan. 

With Hope, it sounds like he will actually wait until she is 7 years old!  What a relief!  I think that year and a half will be so good for us all.  He also said that she is a perfect candidate because she does have 2 fully formed nostrils and has the excess skin between the skull split on her forehead that will provide the “material” to make her nose.  I can’t tell you what a relief this was.  Ahhh, deep breath.  He also indicated that neither of their conditions necessarily guaranteed cognitive handicaps – although the damage done, especially to Hope, from the institutionalization will have a massive impact on their long term progress.  No surprises there. 

They will also both have their hearing tested and they will probably do a sleep study on Serenity.  They did agree with me that if she is having that much trouble breathing at night, she is probably burning all her calories up that way.  They did bring in a nutritionist for me to talk with.  After hearing what we were already doing, she was full of praise at all we were doing.  It was a good “pep” talk for me – but at the same time, I always have to wonder what type of people they deal with day-in and day-out that our family seems so amazing?   She gave me a few more ideas at getting calories into Serenity (basically butters, oils, and a drink that is 45 cal per ounce).  I was really worried about Hope but she was amazed by what we had done/were doing.  She feels like it is just fine, other than adding a vitamin with iron.  Umm, okay.  I guess I will trust her on that for now.

Overall, everyone we saw was full of praise and amazement.  I am very uncomfortable with that, but also do appreciate the confirmation that we are doing it “right”.  Next will be the appointments for the CT scans for each girl and then we will meet again with the main surgeon and other surgeons they may bring in.  At least I will probably have a few weeks to build up the strength to do it again.   They felt that Serenity’s surgeries were very necessary, but not “critical” in their timing in the next few months.  They were more than happy to work around the delivery of the new baby, etc."

We are still waiting on dates for the CT scans, but I am assuming we will hear sometime this week.  

So those are the "doctor" details - how about the "every day life" details?

Serenity is still just a ball of energy.  She is so busy, so happy, so excited to be with people, we are laughing all the time.  What a gift we have been given!  We have started putting little tiny pigtails in her hair - they are so funny.  But she just adores them!  

She loves to carry around a little mirror and look at her "sprouts" and gently touch them.  She cries when we take them out to redo her hair.  She enjoys each of her brothers and sisters in unique ways.  One she wants to snuggle with, one she wants to lead around, one she wants to play Legos with (yes, Legos!)...and the list goes on.  We know she is getting tired at night when she finally finds me and wants to sit on my lap.  

She is extremely smart in so many ways - but so delayed in funny ways.  But I am realizing so many of the delays are simply because she has never been in a "normal" home/family environment.  She does not know what it supposed to happen, how you are supposed to act, what to expect, etc. because as wonderful as her institution was, it was still an institution.  The people there are doing wonderful things, but it still doesn't change the fact it is not a family.

In the quiet moments at night though, as I rejoice over her precious little person, my heart just hurts to think that such a beautiful child - inside and out - was destined by her country (and I am learning, by some in our country by their attitudes) for an adult mental institution (code words for "hell on earth").  It would be so tempting to think that she was in a "good" place.  Maybe she didn't need to be rescued....but I realize so deeply that that would be such a distorted and wrong perspective.  This beautiful person would be locked away for life because she was not like other people.  What a treasure we have been given.

My sweet Hope.  I am just not sure how to adequately describe her struggles or the depth of the damage done to her.  I know that some reading my blog already don't understand why we would choose a child so significantly "damaged" and I don't want to give them anymore fuel for their mocking - but I also think it is very important for people who really do care to know the struggles in her little life. 

There are times that her little soul, her little personality, is so buried under learned "nothingness" from how she was neglected, ignored, abused for her entire life that I have to remind myself of the little glimpses we have seen.  The loves she gives to her dolly, the sweet smiles she gives at rare moments, the true laughter that pours out before she can catch it and turn it back to "nothingness" again....When she gets worried, scared, overwhelmed she either screams for all she is worth or just becomes "blank" - blank eyes, blank face, little movement. It is actually very deeply disturbing that a child can do this - that a child has learned to do this to save themselves from the adults around them.

When my soul was most broken over her, I read this post by another adoptive mom.  It gives glimpses of what these children have gone through.  Her adoptive children can talk.  They can tell her of the things done to them.  Even though I knew this in general, I really think God let me see specifics, because it helped me to gain a greater measure of compassion and patience for my precious girl.  Even though some of the things she does seem to make no sense to me, there are very real reasons she does what she does.

For example, when she first came home we knew she was hungry.  Her tummy was growling, it was breakfast time, time to eat!  Right?  So I would mix up her Gerber food with cereal (the very few flavors she likes) and try to feed her.  The moment I picked up the spoon, she would start screaming and swat it away.  I would just keep working with her until several bites finally went in her mouth.  Then she would relax and eat the rest.  The same thing would happen with her drink.  As baffling as this was to me, there was probably a very real reason to her behavior - the food she was fed at the orphanage may have been nasty, hot, cold, putrid.  It may have been forced down her too fast.  It may have choked her as it went down.  We assume, as loving, caring people, that someone would never do this to a child - but the truth is shattering.  These children are abused continually, except in rare cases like Serenity.

Our biggest struggle right now, as we are just working on the very BASICS of life with Hope, is her sleep.  Or more accurately, her lack of sleep.  She is exhausted all the time.  She has only slept through the night twice at the hotel in her birth country and once in the 4+ weeks she has been home.  The rest of the nights she screams and cries.  For the first 3 weeks, it could be for the majority of the night.  We tried everything we could think of - lights on/lights off, music on/music off, talking to her/not talking to her, feeding her right before bedtime/feeding her earlier...the list goes on and on.  A little over a week ago, I moved her out into the family room so we could lay her in her crib at night with family life still going on around her.  I am also sleeping in the big recliner next to her with a small lamp on so she can see I am there.  When she does start to scream, I pull her in my lap and rock her until she goes to sleep.  Sometimes I have also fallen into an exhausted sleep at this point and we just sleep in the chair for a few hours.  Sometimes I can lay her back in the crib.  It is very slowly getting better...think "minutes" more of sleep, not hours at this point...but still improvement.  I am used to not getting long periods of sleep as Mimi has been up and down all her life (but is thankfully doing MUCH better these last couple of months).  But with the pregnancy, this is harder on me to do.  Right now I just can't think too far ahead - like when I am needing to feed a newborn at night - I am just thankful for some sleep.  

But even in that, she is scared.  I know she thinks when I lean over the crib that I am going to hurt her.  She screams and moves as far away as she can.  She screams as I pick her up and pull her on my lap.  It is only after I start rocking and singing softly that she begins to relax and stop screaming.  I cannot tell you what that does to my heart.  NO child should ever think they are going to be hurt for crying - NO child should EVER have this fear.  EVER.  So as she drifts to sleep eventually (sometimes 20 minutes later, sometimes 2 hours later) the tears fall silently down my cheeks for her.  Oh, my Savior, how the world needs You.

My "moment" is gone tonight as I have to get my treasures ready for bed.  More will have to wait for the next moment in time....

Until He comes - to Him be all glory, honor, and praise.  

I know that there are many reading this blog right now in order to mock our family and choices.  I am praying that you will not be able to ignore the hand of God in our lives.  I am praying that even as you read to mock, that your soul is touched with the Truth.  I would also have to ask, you have spent a great deal of time in mocking us, but how much time have you spent in offering help and solutions to others in need?  It is very easy to mock - especially little children who cannot defend themselves - but mockery takes no wisdom.  Yes, you may be clever, but you are not wise.  There is a massive difference.  You can easily change my words and question our decisions,make things into something they are not without ever giving a moment of your life, time, heart, or finances sacrificially for someone else.  You friends may think you are very clever indeed.  But someday you will stand before your Creator.  Someday you will be required to account for your actions.  Someday their Defender will demand your debt be paid - just as we all must do.  Only those whose trust in in Christ will have their debt paid.

Honestly, you will not ever understand our decisions.  As a very wise person once said, "We rescue not because we are the rescuers.  We rescue because we have been rescued."  We have been saved by the Lord Jesus Christ - we have become new creations.  Not just "better" people - new people.  We are no longer dead in sin - we are alive in Christ.  The dead can never grasp the world of the living.  But we all will be called into account.