Saturday, April 28, 2012

Should Have Seen It Coming

You know how there are times when you look back and say "I should have seen that coming?"  This is one of those times.  I should have seen some things coming.  


A week and half ago we went for Max's third visit to Shriner's.  This time for genetics rather than ortho.  The doctor we met was amazing, he was older and definitely a grandpa because he played with Max and talked to him and enchanted him the entire visit.  When he left the room for a camera Max was sad he was gone.  We talked a lot about Max's body and being an orphan and the reality of having very little background information.  We headed to this visit with the belief that this would merely confirm the diagnosis of TARS for Max, and we would move from there.  That, however, did not happen.  Dr. Saul readily admitted he had never seen a case of TARS, but in preparing to see Max he had done research and everything in him, after meeting Max and listening to us, disagreed with the diagnosis.  The fact that Max would survive infancy in an orphanage with a low platelet count seemed unlikely to him, I have actually had that same thought.


He took a lot of pictures of Max and then told us he would present Max to his partners and they would all brainstorm and he would get back with us soon.  I really thought soon would be in the next few weeks.  


Thursday morning he called, one week after our visit.  I was surprised and honestly I feel really silly talking to really smart people and he is really smart. The phone call didn't start out smoothly at all!  I stammered and stuttered and well...who really cares!...back to the point, he called to tell me what he and his partners had discussed and what they believe is going on the Max.


This is part that I should have seen coming.  After the next few sentences I was seriously thinking "why hadn't I given this more thought!". Basically they are looking at one of two genetic issues.  They do not believe that Max's body just "forgot" to grow a bone, but that something much larger is going on.  Of course!  I should have seen that coming.  We have had such great news since Max came home.  We were thinking about multiple surgeries to start immediately and so far not one!  We believed we would be making trip after trip to doctors and therapists to fix his arm and help him to learn to function with it, that hasn't been the case.  It's all been so good, but obviously there's a reason his bone is missing and there's a reason his body is a little small, and some other more personal issues, there are reasons for all of this and I wish I had seen it coming.  Honestly, though had I seen it coming what could I have done? Except maybe not feel completely unprepared for the words of the doctor!

So the testing is beginning.  Of course, it will be a slow process, genetic tests are slow. There seems to only be one lab in the country that does the particular test Max needs.  It will take a lot of coordination between people and institutions to get it done. I can only imagine there is going to be frustration, actually the frustration began that day trying to explain what one doctor said to another. Trying to remain calm and not get emotional and remember the really big medical words, which apparently is important as I've already asked for the wrong test!  On a positive note the geneticist has been super easy to get a hold of, every time I call he's in his office...strange I know, and he's patient to answer all my new questions and re-explain (is that a word?) things to me.  He has made it clear we can call him as much as we need, he might regret that decision! 


My heart is nervous and anxious.  I know the scripture, I know the truth, but he's still my son.  He looks to have a long road ahead of him.  We all do.  His fear of hospitals is just starting to wane, and I hate that he might have reason to fear hospitals again.  I know all the right responses. I know we just have to wait and see, I know not to get ahead of myself, I know, I know, I know, but the reality of the situation is bearing down me.  We are, I believe, entering a new road with our boy.  God will either lay a path in front of us or clear one with us as we go, one which we will be able to look back and see, but either way He'll be with us. There's no way we could love our sweet Max more than our Heavenly Father does.  Praise Him for that!


So all you three people reading this blog, no pity please.  I can take about anything but pity!  Max will be fine, we will get answers and life will march on.  My heart is fearful but trusting...that's an oxymoron I'm sure...God is in control.  Pray for us and for Max and for blood work and sonograms and doctors and hospitals, that's what we all need! 

BTW I know I have been vague about the issues, I'll feel more freedom to share later.









Monday, April 23, 2012

"Why You Hand White?"

We have a kind of on going issue with our sweet Max...buttoning (really snapping) his pants!  It can turn into a power struggle in a New York minute, and as I have mentioned before we are in uncharted territory with him.  He's five and growing, growing he is so much stronger than he was when he came home, able to do so much more. Obviously stimulation, good food and consistent love are what children need to flourish.  But there are still a few things we are trying to accomplish.  One of our goals is for him to be able to dress himself so for the past few months we have made him button his own pants.  His fingers weren't strong enough when he came home, but he is generally able to do it now.  There are, however, days when he can't, or won't, do it for himself.  He moans and groans, pants, lays on the floor grunts and generally acts as if he is dying because we are insisting on him doing it himself.  We will all, at different times, check how hard the button/snap is and then encourage him to keep working.  Such was the case yesterday before church.  He could would not do it. I checked the snap, it was not too hard, Hayden tried to encourage him, but in the end it was Katie who was able to convince him to do it.  I'm pretty sure my threat to put elastic waist shorts on him had something to do with it, so glad he finally snapped those babies because Mommy didn't realize how chilly it was outside.


As Katie was helping and encouraging Max he stopped and looked at her and said "Katie you hand white, why you hand white?".  She replied that was how God made her. He then said "You hand white, but my hand just....me.".  I'm not sure he was sad or upset, maybe just really noticing, but notice he did.  He sees there's a difference.  I asked him about it later and he wasn't interested in talking about it, which is fine, he'll bring it up again when he feels like it.  But, as we all know, my mind never stops and so I have to wonder if what I read that adopted kids often struggle more with being a different race than anyone else in the family over being adopted, might have some merit?  Well, obviously it has merit, but should we think long and hard about it?


It's interesting timing for me because I'm having a real case of the blues.  I'm worn out, not with kids or life, just circumstances.  I'm tired of old cars and no vacation.  Hayden's 18 and we've been on a real vacation, to a place other than family, once, yup once!  And that vacation was brief a whole two days at Disney World.  It was great fun, but trying to cram so much into 2 days was exhausting and although we loved it it was very short.  We drive old cars, pretty sure I just mentioned that, and I don't generally mind it, but they have repairs and make strange noises and fall apart and there's this part of me that wants a new car.  Not brand new, but maybe a 2007 or '06, I don't know, just newer.  Allison will need a car soon and with the way our school works she'll really need one so I'm thinking a new car for me is out...not that it was on the table or anything, but...


So all these selfish thoughts, cars, vacations, a new fridge, and another brown baby are swirling around in my brain, and I don't know.  Last night in our Bible study I mentioned how selfish I feel for some of these desires, and another adoptive parent quickly agreed with me.  It was a true reality check!  He's right, we can't be selfish, God didn't intend riches for our family, not earthly riches anyway.  I don't really have any skills to market, I don't have the physical stamina to be on the go all the time, and I don't think I would want to work or market myself if I could. I prefer being home with my family to just about anything else.  I work at my kids' school on their school days which is two days a week, help them on our home days, cook as many as three meals a day on occasion (not so often any more) and love being a wife and mom. God has blessed us greatly with our kids, we love each other deeply.  We eat as a family, whoever is here and often times one of ours is gone and some other child is here, we generally laugh at every dinner and then someone cries (it's a must!) and then we laugh again...and it works.  Our kids share with us and talk to us and make fun of us and rely on us.  They seek us out for counsel and tell us what is going on in their lives and their friends' lives, and I'm so glad they do.  It beats a new car or chasing money or long vacations...well, I don't really know about the long vacation part because we've never had one, but I'm guessing!


So this has been a circular post.  I'm back to the beginning of not knowing what I want, or knowing what I want and not knowing if I want to make the sacrifices to have it. I want what God wants, I want what's best for Max, I want...well, I think I want it all!  

Sadly, I fear this might have seemed like a pity party, I don't intend it to come across that why, I'm just struggling with things right now, literally things! I trust God for our provision and I know He cares for us.  I know His Word and what He requires of His children as well as the promises He has made to us, which don't include cars and fridges I know! Our pastor said in church yesterday that "Christ's compassion always manifested itself in action.".  That's so true!  So is buying a new old car acting on compassion for myself?


JUST KIDDING!

Saturday, April 21, 2012

Almost a Sad Day

This morning I was stressing over my sweet computer, it seemed to be sick and to be very honest I love my little MacBook!  She goes with me to school, on vacation, to Shriner's when Max has an appointment.  We are rarely parted.  Veldon isn't a Mac he's a PC, I don't know why but that's the way we roll in this family.  In nearly all things we are black and white, not as in there is no gray, but rather I am white and he is black or the other way around.  If I'm going left he goes right...we always think differently.  So I love my MacBook and he is not a fan.  Last night as she would not connect to the internet nor get my email I just felt ill, partially because computers and their fixes are not cheap, and partially because I was without my computer.  I didn't' really want to tell Veldon because when something is wrong with my baby he makes fun of her or says he can't help because he knows nothing about Macs and they are too hard to figure out.  So I did what any reasonable, early 40's woman would do I went to my room, read a book and pouted...and waited for him to discover the ill computer on his own.  


He did discover it and came and asked when I last used my computer as "it isn't connecting to the internet".  I snapped "I know, that stupid hotel did something to it and now it won't work".  In a nutshell his response was that is wasn't the hotel something else is going on, likely with the computer.  But understanding my distress he called our internet provider and spoke with them for a long time to see if they could get the computer to work.  They could not.  This morning he made an appointment with the Apple Store and we took it in this afternoon.  In his defense, he never once criticized my sweet computer and was very kind in helping me get her a doctor's appointment.


We explained the problem and the guy worked and worked.  He clicked away and went to places I have never seen on my computer.  After about 10 minutes he asked if we had any protection software, we did, our internet provider also provides Nort*n for free so he went in and turned it off. Voila!! My baby was up and running again.  The genius guy's best guess was that something at the hotel had triggered the firewall and basically it shut down all internet activity. So it was the hotel and NOT my sweet MacBook...I knew it!!  My computer does what she is supposed to do.  In the five years we've owned her she has only had to have one serious repair and that was my fault...she doesn't like coffee spilled on her!


So my computer is back and running and the best part is the Apple guy didn't charge us anything!  Yay for that!  I love all things Apple!


As I type about how much I love my computer I also must say that even though we are rarely parted physically, I'm not one to spend copious amounts of time on my computer.  The computer sits on a table in the kitchen and we all drift on and off it through out the day. 


One thing I realized through the last 24 hours is how easy it is to be controlled by circumstances, for me at least!  I am sure there are a lot of godly people out there that are able to rise above, and I suppose at times I can, but this just really got me down.  Probably it was more of a combination of things.  My son is 18 and graduates in a few weeks, my computer is/was broken and we do not have the funds to buy a new one and I really need it for work and for the kid's school. Our cars are old and have on and off issues, blah, blah, blah.  It's always the same thing.  We all have issues and life is a struggle.  There is no easy button and this week I wanted one very badly.  God gave us a blessing by allowing the fix for the computer to cost no more than the gas to get to the mall and I am constantly reassured that Hayden is in God's hands and He loves my son more than I could.  So just as I had to trust God for 2 1/2 years of waiting for Max and know that God cared for my little boy, I have to trust God and know that He also cares for my big boy.  Very, very hard!  The other things, cars, school, etc they all tend to work out. God guides us through and cares for us.  I just need to be better about remembering that simple truth!

Saturday, April 14, 2012

0 - 18 Lightening Fast













Next week will mark a milestone in
our home. My beautiful baby boy turns 18! I can't believe it, of course what mom says "It feels like it's been 18 years or longer, it's about time!". He graduates in May, and his life is about to change in more ways than he can fathom. He, of course is still looking at short term, what's happening next week or next month, how to spend the summer, etc, but the long term is upon him. Life decisions are being made and the future is being planned. Not that plans can't be changed but he has to start somewhere. He's deciding which college to attend, how to pay for it and even where to live. At times he mentions moving out, I know he is ready (in his mind) to fly, but we aren't sure his wings are quite there yet! Even if they were he's not exactly financially able to support himself, but like his parents before him he might have to learn that the hard way.

It's hard not think back over the last 18 years and ponder the choices and mistakes we have made along the way. One of the biggest decisions we made for Hayden was to pull him out of g
overnment schools and home school. For our family it was the right decision, not an easy decision to be sure, but right. In the years that he's been home schooled his relationship with his family has done a 18o° about face, he's become one of us again. Right now as I am typing this he is sitting in the front room watching Jimmy Neutron with his little brother, it's so sweet how much attention he pays to Max, not always appropriate like taking most of his clothes off, putting Max on the trampoline with the sprinkler under it and soaking him to the bone, with an outside temp of 65°. I let them play anyway and warmed Max up quickly when he came in, he hasn't seemed to have any lasting negative effects from the cold, but the memory of Hayden playing with him like that will last forever! Hayden's personality has also come out in a way we never guessed it would. He is a definite individual, artsy, eccentric and emotional...all things that don't really fit the mold of the public school student. The two day a week program our kids attend seems to cater to artsy, different kids. They are each individuals and our administration and leadership encourages them to be who they are, to embrace God and to live for His glory...for us home schooling has been amazing!











As Tuesday Ap
ril 17, approaches I am excited and sad all at the same time. Most of our days of raising this beautiful gift are behind us. His future is for him and his God. He will look to us for support but in a different way, it's more than I can imagine. I remember so vividly the day he was born, a full two weeks late! So had he been born on April 3, as he should have been, this post would be two weeks old. :0) I remember holding him in the hospital and thinking "someday he will be grown, he will turn 18 and I will be old". I couldn't imagine that sweet, little, wiggly bundle being a big boy, but I knew I wanted to enjoy and ponder the days I had because they would feel too short in the end...I was right! The years have flown by, time has moved more quickly every year, Hayden has grown and matured and has become a young man of whom I am terribly proud.


Last week, while Veldon was gone to a pastor's conference, Hayden stepped up to the plate. He helped me drive the girls to their various activities, watched Max, played with Max, called to let me know exactly where he was and to ask if I needed anything. He stayed home a couple of nights to be here in case I needed his help, he was a miniature model of his dad and I was so proud! He will be a great husband and father some day. He will love his wife the way his father loves me, he will be interested in his kids the way his dad is interested in him. He has absorbed some of the things his father and I have tried to teach him.













My grown son is on the right path. He makes mistakes and still needs direction, but he is becoming a man of integrity and character who loves God. What more could I ask for?



























(Sr. picture by One Girl Photography, used by permission)


Tuesday, April 3, 2012

Orphanage Residue

Over the past 10 months we have noticed behaviors in our fabulous boy that could only be described as orphanage residue! Those behaviors that I just can't imagine he would have had he gone straight from his birth momma into my arms. One way this "residue" reveals itself is in some of Max's really strange behaviors. For example he as the uncanny ability to turn a light meal of 1/2 of a sandwich and some chips into an hour and a half event. Why? Why? On those days no amount of "Max eat" will get the boy to eat more quickly. He'll flay his arms around throw his head into action, but when it's all said and done he hasn't actually eaten any faster and sometimes he hasn't actually even gotten a bite into his mouth. I think maybe meal time was the time when the kids got the most attention so he really stretches it out...that's just a guess though.

Another behavior, which I have mentioned several times I believe, has to do with his head. He leads with his head, head down and he's off. It is actually quite unnerving to look up and see his head coming at you. Generally because there is going to be pain involved...my pain! While we are carrying him he will arch his back and throw his head back, not in a fit, just for the sensation I suppose. Invariably he will hit is head because he generally seems to do this as we walk through a door or next to a wall. He then is hurting and looks at whoever is carrying him like "why did you do that?". It doesn't matter how many times we explain for him NOT to do that, he can't seem to stop the impulse.

He rubs his head on everything! The floor, walls, people...he loves to feel things with his head. It's not uncommon for me to find him in my bedroom butt in the air, head on the carpet walking along. If I've said "Max get off your head" once I've said it 1,ooo times! (I actually think this particular residue is beginning to fade...Prasie the Lord!) But his head thing is still there, when he climbs up onto the furniture he doesn't do it with his legs/knees, he does it with this head, butt in the air, messing up his hair and the pillows and whatever else might be in the way because you can't get on the couch by means of your head without requiring a lot of space!

Another less favorable residue was the storing of food in his mouth, I think that is very, very common among former orphans. "Max swallow" "Max swallow" was my mantra for months. Not so much anymore. But if he gets in a hurry...which is rare at mealtime...he will cram it all in there and then want to run off to swallow at some future time. So I still tend to check his mouth before I let him get down from the table...especially if he is in a hurry to move on.

He has a huge need for us all to be at his beck and call. "Here's my trash mommy." "I want my drink" as it is being passed through the window from the McDonald's worker! (That might have a little bit to do with patience.) "I will eat out of the red, or blue, or yellow, bowl today." "Daddy is going to pray for dinner." "I want some salt please" (mommy starts to take a bite) "and some pepper please" (mommy tries for bit again) "I don't have a stapoon (spoon)" (mommy loses her mind and tells him to eat without it...of course it's soup so a stapoon he gets!) All alone none of these things sound very bad, and they aren't bad, but after an entire day of the constant demands, they can wear you down! It's a bit like the middle school child who is forever saying rude things, but when you confront said middle schooler on any one thing you sound ridiculous, however when the entire day has been spent hearing the little barbs you're at your wits end! Same kind of principle.


One of the really bad left overs from orphan life is disobedience! It is driving us insane. The boy does not think he really has to do anything we tell him to, or not to, do. If I tell him "no" he goes to his dad or one of the girls and asks again...often times right in front of me! If we tell him no he'll go somewhere else and do it anyway. Which requires that we stay a step ahead...a pipe dream at best!

On the flip side of the disobedience is a rather strong sense of honesty. He made a mess in the car last night and was very frustrated he couldn't see the mess, didn't have a napkin and was stuck with a small amount of ice cream on his shirt until we got home. I told him to leave it alone, ignore it, or he would make a a bigger mess. He couldn't stop talking about the worker who didn't give him a napkin.

I said "Max are you still touching the ice cream on your shirt?"

Max ~ "Yes".

Me ~ "Max I told you to leave it alone, not to touch it. Remember? Max you must obey, every single time"

Max ~ "Yes, Okay, Mommy I will leave it alone."

Getting him out of his car seat

Me ~ "Max you are still messing with the ice cream on your shirt. Do you see it's all over your fingers now"

Max ~ "I know Mommy, I real sorry about that."

I then told him he was about to lose the rest of his ice cream for not obeying, at which time he stopped touching the mess until I was able to clean it up.

Obedience is huge in our house...not that is has taken hold with our family very well! But we very uptight about obedience. If our kids don't obey us how will they learn to obey Christ? Therefore, we are not parents to laugh off disobedience with a wink and a pat. When our kids disobey we believe it is huge and deal with it. Of course the older they get the harder it is and the more the lines get blurred. "Mom I was busy. I didn't understand I had to do *** right now, I thought I could do it later. etc, etc." Sometimes these are legitimate, sometimes not and each time we have to decide where to draw that line, to err on the side of grace of discipline. BUT with a 5 year old the lines are much more clear, don't touch means don't touch. Stay in your room means...you get the point.

Even this behavior I can see related to being in a large orphanage with, at times, little supervision. I can see the wheels in his head turning when I tell him he can't do something and a few minutes later he's doing it. This has to be in part related to the fact that if he was told no at BFF, his orphanage, he could walk to another part of the building and do it without anyone being any the wiser, and if the worker did discover he was disobeying a sweet smile and laugh must have gone a long way, because the boy has charm oozing out of him!

Of course for every behavior I have mentioned here, and this is just the tip, some well meaning know-it-all will tell me he just sounds like a normal 5 yr old, or 4 yr old or whatever the case may be. That's true in many ways these are normal behaviors, but in many ways they are not. Our influence on Max is less, at the age of 5, then it was on our other kids at the age of 5. He spends much more time doing what he has been told not to do than the other kids did at the same age. Obviously, he's only been with us for 10 months there isn't the long history of love and trust and influence. These things must grow and develop.

His charm and manipulation are remarkably over developed for a 5 year old while his emotional development is largely delayed. Which I think answers the question why he does not obey and then honestly admits to his disobedience. He doesn't connect the action of disobedience with the reaction of discipline. In some ways one hopes he never will so he continues to tell the truth, but if he never relates action to reaction he'll never be motivated to be obedient. It's a Catch 22 to be sure!