Sunday, October 16, 2016

How is it going?

Did you know there is a pace to life beyond "warp speed"?  I didn't, until now.

A bunch of people are asking "How is it going?" and I haven't even had time to answer.  I have a few quiet moments this morning before church preparations, so we will see how far I get. :)

I want to start by saying, as many of you have already heard me say, there is a delicate balance in blogging about daily life.  I never want to "sugar coat" it in anyway.  That is not honest and it does not help anyone, especially those that are reading to see what it would really be like to jump into the adoption arena.  At the same time, when I do share some of the struggles, it stands in glaring black and white - without any of the gentleness of love and grace to soften the edges.  As well, please remember that this is just a snapshot in time - it may look completely different tomorrow - for better or worse!  We desperately love each of our children and would not change a moment of the journey, although some things over the years I wouldn't ever choose to go through again if it was up to me.  I am thanking the Lord that it is NOT up to me and that I can trust Him in every detail.  So with that said...


Lucy:

Lucy is quiet and gentle for the majority of the time.  She likes to help and she likes routine and following the "rules".  She has figured out how to tattle on her siblings even without words.  The majority of the time, she is right - they are doing something they shouldn't.  But occasionally, she is just not happy with what they are doing.  There is a tiny streak of stubborn in there as well.  We see it pop up every once in a while where she pretends she doesn't hear us or sits on the couch just refusing to move (particularly when it is bedtime).  But it doesn't take anything more than a strong tone of voice to get her moving.  She did kick Jesse pretty hard this week much to my surprise.  Jesse was tormenting, but obviously we don't tolerate physical reactions at all.  I put my hand around her foot and told her "no" pretty strongly.  She hid her face and softly cried for a bit but then went on as normal.

Lucy LOVES doing school with the kids.  She has surprised us by how quickly she is learning.  She was not in any kind of school in the orphanage that we were told.  Now, to keep this in perspective, she is doing preschool type work - learning her colors, learning to trace/draw letters and numbers by copying, learning to recognize there are three pictures and circling the number "3".  She has also started learning patterns and doing color-by-number pages.  When we hosted her last year, we knew she loved to color and fill pages with "letters" but weren't sure how much farther she would go, especially right after coming home.  She is surprising and delighting us with what she is doing.  In addition, SHE is so happy and excited, it is contagious.  When our elementary kiddos sit down in the mornings, she is right there with her pencil box and basket of books and stays the whole school time working on her pages.

She is pretty independent with daily care.  She can get dressed and take care of her personal needs completely.  We still are working on showering/bathing.  Her hair is very thin and greasy - something I am hoping good nutrition will start to change.  She is also going through all the hormone changes, which has been hard on my other girls' hair as well.  We are still working on getting teeth brushed thoroughly as well.  She has definitely gotten pickier about food, along with Jesse and Peter.  This has forced a change in our lunch menu.  We have always done sandwiches at lunch during the week for the most part.  All the kids could make their own and help those that couldn't.  I would just lay out all the supplies for either P and Js or meat/cheese along with pretzels/crackers and fruits/veggies.  None of the three like sandwiches at all.  They just won't eat them.  After a few weeks of trying, I knew we just had to come up with a different plan.  So now I am making homemade "noodles' (Jesse's favorite) with meat and veggies mixed in or casseroles of some sort.  All three of them could use a few more calories so I don't want them just skipping meals.

Lucy's hearing test is in the middle of November and I am very anxious for this.  I do wonder if there is a hearing issue and this is what is effecting her speech.  We do have to talk a little more loudly for her to hear, especially if she is not looking at us.  I think I will be more surprised if there isn't a hearing issue than if there is.  She had her heart checked on Friday and everything looks perfect there.  We are having her fit for orthotics for her ankles - they lean inward a great deal and that is probably what makes her gait pretty awkward at times.  We also need to see a dentist for her abscessed tooth.  Oh, and we will have a sleep study done as she has enormous tonsils as well.  This are all pretty simple things and once they are done, she will just move on to yearly check ups.  A happy place to be. :)

Her favorite people are still Daddy and her brother William, who is almost 7.  They have a great time playing in the yard, pretending in the house, and looking at books together.  It is a bit of an unlikely pairing on the surface, but it works very well.  Jesse is definitely her "nemesis" right now as he is always getting in her personal space.  Overall, her adoption could not have gone more smoothly.  She is a delight to be with and we are so excited to see how she will grow over the coming years.

My "hopes and dreams" for Lucy right now?  I pray for more healing and confidence that she is loved - I want this to settle into the very marrow of her soul.  I want her to truly learn who Jesus is and that He loves her completely and made her perfectly.  I want her to learn to speak clearly, even if it is still limited - not for our sake, but so that she can interact with anyone she comes in contact with.  I would love to see her learn to read, even on a basic level.  I know she wants to learn to help in the kitchen and with the kids - I would love to help her to do that.  I want her to be able to do more crafts and creating - as she LOVES this.  Some of these things are LONG-term goals, some are short term.  I just love seeing her joy grow and blossom as she settles in.

Peter:

Peter is like the other side of the coin of older child adoption.  Lucy's has gone very, very smoothly.  We know there is damage to her little heart of years of orphanage living, but we see healing and growth every day.  Peter, on the other hand, is very, very damaged.  He is 7 1/2 years old.  He was in a good orphanage for several years in the middle of his short life, but we don't know what the other years have held other than he has been bounced around a great deal - 7 times in 7 years, I think?!?  And if you calculate he was in the good orphanage for several years, you realize there was a lot of moving around in the last few years - several times a year.  He is the classic orphanage-damaged child in my mind.  Much like Hope when she came, he wants to live in his own little world.  It isn't even that he ignores everyone else, he doesn't hardly even realize there is anyone else around.  He chews on his hands and whatever he is holding.  He makes loud, awkward, and repetitive sounds.  Honestly, it is hard to hear for long periods of time.  I scoffed when I first entered the world of special-needs adoptions at parents who would complain about the noises - thinking they were just a bit heartless and impatient.  Oh, how I eat those words now.  I don't know how to describe the noises other than they are not just normal baby/kid noises - they are screechy/nails-on-the-chalkboard noises that grow louder and louder the longer he goes on.

He doesn't know how to play with toys - a common trait with all my adopted children - but rather than just ignoring them, he throws them as hard as he can.  This is actually very dangerous with the other kiddos on the floor.  He is strong and can really chuck those toys!  He goes through a room like a whirlwind, pulling books/toys off shelves, tossing things around, chewing on everything.  This is the reality of some (not all) older-child adoptions.  I don't think this should be hidden.  It may even sound like a small thing, but it reality, it changes life.  He cannot be unsupervised - not even half-supervised.  I am definitely striving to Peter-proof our living areas, but you can honestly only do that so far, especially with others needing to live in those spaces.  The balancing act is that he needs to LEARN how to be part of a family and interact with toys/objects/people appropriately - so it is more a "controlling" of the environment than a child-proofing of it.

He is unable to do any type of independent care for himself.  Although he could definitely feed himself (as in putting food in his own mouth) he just shoves it in like a crazy, starving man to the point of choking and gagging.  I have even tried to give him crackers after a FULL meal of rice/meat/vegetables - thinking that if he was full, maybe he would slow down - but this is a habit too deeply ingrained to fix that easily.  He is completely frantic to get that food in his mouth!  I know this is "orphanage-living" at its height - both being always hungry (in the past) and knowing if you don't get it quickly, someone else will.  He still has a great difficulty swallowing liquids - we are waiting for a swallow study to be scheduled to see what we can do to help.  I don't think (after going through this with Mimi) that it is the actual swallowing.  I think it is the muscles in his mouth being too loose to close his lips and "suck" the liquid back to the throat - a common trait with Down Syndrome - but something that would have been worked on as an infant/toddler instead of having been ingrained now for 7 years.

Peter very rarely makes any kind of eye-contact.  His eyes bounce back and forth (I forget the medical term for this right now) but his brain adjusts to the bouncing and "corrects" it.  It is again the orphanage-isolation.  He was not held and cuddled and interacted with as a baby - and now he doesn't even know that type of interaction exists.  I am positive that he need glasses and even more positive that we have a major hearing issue -even beyond the institutional-autism.  Both appointments are scheduled in November.  However, he DOES like to be cuddled for short periods of time, unlike Hope.  When one of my older boys is laying on the couch reading his school books, Peter will climb up next to him and sit for long periods of time.  He does not resist when I want to hold him and will in fact snuggle in for a while.  I am so, so thankful for this!

Peter does like to be outside.  Sometimes he wanders and goes down the slide by himself.  When it was warmer, he LOVED the water table - in fact, he would try to climb IN the water table.  Other times he sits on the front porch step and just rocks back and forth (another orphanage behavior).  Either way, he is much calmer after being outside and he sleeps well.

I know this paints a pretty bleak picture of my precious son.  I think the honesty is important - especially with growing numbers of disruptions in adoption.  However, this is not the end....this is not the whole picture.  I do not think a year from now he will be the same.  Will there be MAJOR changes?  Probably not - this will be a tiny-step growth chart.  My prayer is with CONSISTENT good nutrition and family-interaction/direction and medical help (hearing/seeing/swallowing) we will be at a different place in a year.  I do think he will learn to interact at least on a basic level.  I do think we will reach a point that he can be in the living room with others while I am doing dishes around the corner.  I think that eventually the eating will no longer be an issue.  How long will that take?  Years.  Yes, years.   We will not be able to undo 7 years in weeks or even months.  He will be 15 years old before we will have had him longer than he was without us.  That is a LONG time.

Do I regret his adoption?  Not even for a moment.  God sent us this little damaged child to love and protect.  Even if he doesn't change at all, I do not regret it.  I do pray for continued strength, patience, and wisdom for Don and I, but I don't regret it.  My hopes and dreams for Peter?  How I hope to hear the word "Mama" some day from his lips.  I hope to see him interact with others in a meaningful way.  I hope the scared, haunted look in his eyes disappears someday.  I hope he will look at books and enjoy people.  I hope he will hum along when I sing to him.  Big dreams...but we serve an even bigger Savior.



Jesse:

This little amazing man has probably been the biggest surprise for me this time around.  We had a great deal more information on him because he was hosted in the US last Christmas.  His host mom blogged about him, sharing great information - both medically and day-to-day life.  I thought I had a pretty good handle on what he would be like.  However, it has been different than I thought.

Jesse has no nose and no eyesight other than some light/dark perception.  He is very, very, VERY smart.  He mimics everything and is learning English at a breath-taking pace.  He LOVES people.  He loves to explore.  There are times when a outsider would not be able to tell he cannot see.  He has an uncanny way of navigating even a toy-strewn floor with ease.  He is immediately adored by everyone - medical or daily life - that meets him.  His little voice is so sweet and his laugh is contagious!  However, he is a very big challenge for me.

Like two of my other children, there is a MASSIVE gap between intelligence and social behavior.  I couldn't even begin to rate where Jesse is intellectually - mostly because he doesn't speak enough English yet - but it is far, far beyond his 6 years.  It is a bit scary how smart he is!  I am already scrambling to figure out how we will keep up with him academically over the next years.  However, socially he is very, very immature.  I would put him at 2-3 years old at most - temper tantrums, screaming, pinching and all.  This makes for a very difficult balance.  He knows (and wants) much more than he can deal with emotionally. He knows what he wants (intellectual smarts) and will NOT back down regardless of the situation (emotional immaturity).  At first I thought that he was bored - that we were not providing enough input - but I have seen over the last month that that is not the case.

I think part of why he did so well with his host mom is that he was the focus of her attention and the only young child by far.  He got to be the center of her universe - what a gift to him!  But honestly, long term, this is not good for any child.  Each one needs to learn to live with others - sharing, being compassionate, taking turns, sacrificing what you want for someone else.  This is one of the main lessons learned in a family.  It is especially ingrained in a large family.  Jesse probably really, really needed that "center of the universe" time for his little heart!  Now, he needs to learn he is dearly and desperately loved - but he is part of a family.  Most likely, Jesse is going to live independently (to some extent) from us someday.  He is going to need to know how to work with others, how to be part of a group, how to serve and help others.  Our life is never just about us.  I pray that Jesse learns to love and serve his Savior - which involves learning to lay ourselves down for someone else, even when we don't want to.  At his maturity level, this is learning to share toys, learning to take turns, learning that he doesn't get what he wants every time, learning that he can't just snatch whatever he wants.  In the long term, it is learning to think about what others may want or need and making a deliberate choice to give it to them, even at cost to himself.

Now before anyone starts to freak out that somehow he is being neglected, he is held and carried and played with more than most infants and toddlers!  There is always someone willing to hold and snuggle him.  Snip has started carrying him around in a kinderpack on her back, which he loves.  He is honestly held more than he is not held at this point!  He can climb up on Don and my lap whenever he needs to.  If there is someone already there, we will make sure he gets a turn quickly.  We know that he is desperate for that love and interaction.  His little heart has many years to make up for of NOT having a family.  But filling his little love-tank to overflowing is far different than giving him whatever he wants.  One will build him up, the other will destroy him.

So what does it look like on a day-to- day basis?  Well, right now it means A LOT of temper tantrums. A LOT....like all day.   He wants what another child has - even if he has the same thing already.  He wants what he wants NOW...not in a few minutes.  He wants to do what he wants to do NOW....not later.  This is the basic description of any toddler to some extent.  With Jesse, it is a toddler on steroids with lots of "smarts" to try to manipulate the situation even farther.  The smarts also leads to a great deal of tormenting of others.  If Lucy won't let him take her pens, then he will just keep putting his hands on her or her pens just to upset her.  Even after I step in, he just waits until he thinks I am not looking and does it some more.  Honestly, it is exhausting most days. It is difficult to know just how to discipline him (or any of the other adopted kids) because I don't want to use isolation (sending them to their rooms) as a consequence because it is so damaging to their little hearts.  So right now, we strap Jesse (or Peter or Jillian) in the wheelchair in the middle of the living room - they are still with us, but they are in a "time out" for now.  The buckling-in just means they aren't getting more attention by mom having to hold them in their time out spot.  Jesse has quickly gotten to the point we can say "Do you need to go in the wheelchair?" and he will immediately say, "No."  But that doesn't mean he actually decides to stop...he may still chose to do whatever he was doing.  Did I mention that this is exhausting?   But then he gives you a Jesse laugh or a sweet smile or says something cute and the frustration starts to melt away.  Just like every child, we are starting at the beginning.  It was a little silly of me to assume otherwise - even unconsciously.  Because of all they have missed, we have to start at the beginning....Mama and Daddy love you and they will give you all you need to grow.  They will not leave, they will not change when their "shift" ends, they will give you what is best for you, not what is easiest for you or them.  For Jesse, this is just more intense right now.  Another struggle is that he would still go home with just about anyone.  This was a struggle with Serenity for a very long time.  It is critical that he learns that his place is with our family - not with whoever is willing to pick him up.  This is a simple time and cocooning issue - I am confident it will come, it will just take time.

Medically, we have been through the initial round of appointments (pediatrician, head pediatrician with the craniofacial clinic)- which then leads to the next deeper round (endocrinology, ophthalmology, audiology, sleep specialist, etc.).  The summary of the head pediatrician with cranio was that every thing was "remarkably non-urgent".  He should see endo...but not urgently.  He should have a sleep study...but not urgently.  You get the picture.  He is still very, very thin and that concerns me a bit.  He eats A LOT - though like Lucy, he is getting pretty picky.  (The pickiness is a good sign that their tummies are finally feeling full though!)  Between his tendency to be hyper-active and the lack of weight gain, I am a little worried we have a sleep apnea issue. :(  Unfortunately, the first available appointment is not until Feb 7, 2017!  We are on the wait list though, so I am hoping it will be much sooner.  These are a bit tough as it is usually a phone call the morning of and we will have to scramble to make it work.  Oh, how I am praying it will just be the removal of tonsils and adenoids and NOT a trach.

My hopes and dreams for Jesse?  I pray that his little heart will settle - that he will trust that we will take care of him, that he will get his fair turn and then more - that his little heart will be filled up - that he will truly understand and grasp that he is not just one-of-many, that he is loved fully and completely for who he is.  I am praying he will gain maturity even as his little mind is growing at an extremely rapid pace.  I pray we can meet that hunger for knowledge and stimulation.  Most of all, I am praying he learns to know and love His Savior.





Hope:

This little girl is growing physically by leaps and bounds.  Her legs are so long now and her tummy and legs are pleasantly plump.  She has just finished up her yearly 25 visits of physical therapy (what is allowed by insurance).  She is close to walking, but still not interested in doing so.  We have a new walker for her.  (It looks like a little old lady walker!)  But she still prefers to scoot around or crawl.  She is not fighting me on the food any more, but she does not chew at all.  One of the things I give her is tiny diced ham - but it is one spoonful of tiny ham, washed down by a spoonful of yogurt.  One of my friends laughs that she always has to have a "chaser" to wash anything down.  She does eat mac and cheese, lasagna, oatmeal, and some casseroles without a chaser now though.

I have always known that she has "institutional autism", but I have always hoped she would grow out of it.  I am at the point of understanding that she has autism period...however it may have started.  Autism is, of course, a spectrum diagnosis.  She has grown a great deal in her awareness and curiosity of others.   This is a gift.   She wants to be held by familiar people.  She does observe and is curious about what the other kids are doing.  She does focus when we talk to her - though she does not communicate with us at all.  There is still no desire to mimic.  This is a HUGE missing piece - really, it is something that if it is not there, she cannot grow any farther.  If she won't mimic, she won't learn to say words or sign.  She won't learn to play appropriately with toys.  She won't learn self-care skills.  We keep trying to expand her little world beyond putting everything in her mouth, spinning the wheels on toys, or repetitive noises with toys (tapping, banging, etc.) - but she is just not interested.  She even resists "hand-over-hand" play - when we try to use our hands to direct her hands how to do something.  It really makes my heart very sad.  It is hard to have to keep coming back to the baseline of "she is happy, content, and will never be hurt again", when there is so much more to her little world now!  So much she could learn and do and enjoy.  However, this is where my precious child is at.  I need to be content in that.  I need to REJOICE in that.  God loved her enough to bring her somewhere that she is loved and safe.  Every life is precious - even one that is very "simple" from the world's perspective.

My hopes and dreams for Hope?  Well, they are not as big as they once were.  God may choose to do something amazing...He may not.  But she is happy, content, and will never be hurt again.  I do hope she will walk eventually as she will eventually be too big to carry.  I do hope she will learn some self-feeding skills.  I hope she will learn she can make choices that effect her world.  I don't think I will ever hear "Mama" from her mouth - but I can still dream.  We have another appointment with craniofacial for Hope in November.  Honestly, I don't think we will do any surgeries on her face right now.  The surgeon is anxious to do so, but it is purely cosmetic.  There is no value to her beyond what she looks like.  I just can't come to grips with putting her through that much pain and turmoil for just changing the way her face looks.  If she begins to go out more, we may consider it, but right now it is not necessary.





Serenity:

This little missy is LOVING school.  She goes every day from 9:10 to 11:20.  It is just the right amount of time for her.  It fills her days a bit and wears her out.  It also changes the dynamic at home for a bit which is a good thing at times.  She is starting again to try to say more things.  I don't know if this is due to school or hearing Jesse mimic everything.  She still has very, very garbled and limited sounds - which then limits what she can say.  I don't know how much of this will change when they do the front face advancement surgery.  She also has an appointment in November and we will get a better idea of when they are planning this surgery.  I am assuming it is still at least a year off -but I may be wrong.  This is a surgery that I deeply dread - but also cannot wait to get done.  Once it is done, they will do a sleep study to consider removing the trach about six months post surgery.  I really, really pray the trach can be gone for her sake.  As marvelous as the trach is for her health, it is very limiting.  She cannot go to a classroom (at church or school) without someone trained on the trach right there with her.  She cannot truly go swimming and a bath even becomes trickier. She cannot be back in the bedroom with the rest of the girls like she wants to be because I need to be monitoring her machines at night.   It does change how people react to her appearance.  If we need it, then we keep it...but I am praying that is not the case.

She is growing in maturity but intellectually, she is very behind.  She is 7 but I would place her at about a 4 year old level with both maturity and intellectual ability.  I don't know how much this will change.  She still adores new clothes and dressing up (much to her older sister's delight).  She loves to be fussed over.  She is almost fully potty trained.  We are going through the "lazy" stage with her right now....as in "I don't want to stop playing, so I am going to just wet my pants instead".  Frustrating, but a normal part of life.

My hopes and dreams for her?  Clearer speech, life without a trach, getting to be in the "big girls" room with the others.  Joy and sweet sleep without fear.  Healing from her beginnings.  How I love her happy heart.


Jillian:

This little Jilli-Bean is still quite the fire-cracker.  She is one of my others that is much farther intellectually than she is emotionally.  Not quite the massive gap that Jesse has - but enough that our days are full of fussing and temper tantrums, much like Jesse.  It is a good thing we love these kiddos so deeply and completely!  The Lord knew that - and I thank Him for providing that!

Jilli had the surgery on her hands in the spring.  Unfortunately, because she would not keep her braces on at night after we put her in bed, a bunch of the skin between the fingers has grown back together and it will need to be redone.  This makes me very, very sad.  The doctor wanted to do the rest of the finger separations right away but I don't think it is worth it if she will not cooperate.  I am hoping this will come as she matures.  She will also have an appointment in November (you should see my November calendar!) with the cranio docs to see what surgery is next for her.  I am assuming she will have surgery on the front of her skull, but I am not sure.

When she is not cranky, she has the cutest personality!  She is very smart and her smiles just take your breath away...but when she is cranking....watch out!!  We love this little dolly so much.  She talks more than Serenity did at this stage and doesn't seem as limited yet but she is just turning three - so I don't know if it will get worse or not.  She and Little Man still are the best of buddies though all of them play together a lot.  We call them the Chipmunks or the Tiny Tribe.  There is just a lot of "wait and see" yet to go with Jilli - but we will enjoy the ride right now. :)

My hopes and dreams for Jilli-Bean?  Right now, that she would just learn to be happy.  It is a choice - not one even that I think a three year old could really make right now - my almost 10 year old is still having a hard time grasping that...but I just pray she could learn to be happy.


Grace:

This little girl is still pretty close to perfect. ;-)  For those who may not remember, Grace was born with CP but was beaten so severely by her birth family at 6 weeks old that she is 70% brain-dead.  She truly is at a newborn level and will never progress from there.  She has beautiful smiles and laughs.  She ADORES her Daddy.  She is completely and utterly dependent on us for everything - even moving her legs and arms and adjusting her position.  She is tube-fed.  She has seizures and is on pretty significant medication to keep them under control.  But, oh, how we love this precious girl!

She is going to have another hip surgery on Oct 24th.  She already had one surgery for hip dysplasia but the scoliosis caused the hip to slip out again.  Now that she has had the rods put in her back, they will try one more time to get it to stay in place as it is causing her a great deal of pain already.

There isn't much more to say about her other than she is simply amazing.  She is such a gift.  She is Don's reward at the end of a long day as he snuggles her in the recliner.  I long for heaven when I will hear her sweet voice and see her dance - but we will enjoy each and every day until then.

I am out of time but will include a few more fun pictures in the meantime.  Please pray for each of my precious kids - those discussed and those not.  Please pray that Nora's paperwork will keep moving forward - we have hit another silly delay.  Pray for wisdom and strength for Don and I as we walk this journey.
















Until He comes...




5 comments:

  1. I'm exhausted just reading about your kiddo's! Thanks for the update.

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    1. Ha, ha! And that isn't even half of them! :)

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  2. This is great! Thank you for the update! We have a "hope"... A little with institutional autism, no desire to mimic, limited capacity for eye contact, etc... We are in the process of adopting "Owen" from the same orphanage--we are probably in for a Peter/Jesse like situation. Prayers are appreciated :-)

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    1. Oh, I am praying, my friend!! Need to hop over to your blog and get the update! :) Thank you for saving another in His Name!

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  3. I know I have said this before, but I can not get over how pretty and grown up both Hope and Serenity are looking. I am glad to hear that Serenity is enjoying school, and that things are going well there. Is your goal to put her in full time? I am hoping that she makes friends there.
    I will hope that you are shown a way to reach Hope and Peter, and make their lives as wonderful as possible.
    And, if I may be so bold, Lucy will read. Any girl who is showing such determination to learn within a few weeks of coming home can not be restrained by things as minor as an extra chromosome.

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