Daniel's cow

A letter to the public

Dear People in Public,

Today you met a child who has an invisible disability.  He looks like a normal eight year old boy but inside of his beautiful, perfectly formed skull is a brain that is broken.  It didn't develop properly while he was being formed in his birth mother's womb.  This is called schizencephaly.  Would you stare and whisper if it was his legs that were misshapen instead of his parietal lobe?  If instead of a hidden part of his brain called the septum pellucidum being absent, it was his arms? 

The tantrum that you witnessed was not just a child being a "brat."  While you were staring at him and forming your judgments, he was struggling to maintain self control.  He knows right from wrong and can clearly articulate that when he's feeling well.  Today he had just left school where he had to hold it together for his teachers all day.  He was tired.  He was hungry.  He had come back to his family where he is safe to show his struggles.  He knows Mom loves him unconditionally.  Mom is comfort.  Mom is security.  Knowing that after school is his hardest time, this mom had no choice but to take him to a doctor's appointment for his brother.  After waiting to be picked up from school, being told he had to wait in the waiting room was too much for him.  Being tired, hungry and bored pushed him over the edge. 

While you were seeing a boy hit and kick his mother and yell and throw things, I, the woman who knows him better than he knows himself, was seeing progress.  This child's half hearted thumps on my leg with his fist had none of the intensity of tantrums past.  His screams contained no threats of homicide or obscenities.  He may have kicked me but he did not object when I took his shoes away.  He put his teeth on my leg but he didn't bite.  This child who has been an inpatient in a pediatric inpatient psychiatric treatment facility 8 times in his short 8 1/2 years has been on 7 different kinds of medication at one time to keep him from hurting someone else or from cutting his own tongue off!  Yet he never even talks about hurting himself anymore!  He sleeps when he's supposed to sleep.  He makes jokes.  He laughs.  He's a mere shadow of the intense, volatile, angry child he was even a year ago!    He cares about his teeth and proper nutrition.  He is affectionate and works hard in school.  He has increasing empathy for others.  At Thanksgiving when asked what he was thankful for, he announced "Jesus" without any leading. 

So while I thank you, dear lady in the Dr.'s office waiting room for your offer to cut a switch off of a tree outside while he howled in frustration at my feet.  Though it might have looked like my child "just needed a spanking," it won't be necessary.  When my soft, calm words and consistent discipline fail, I'm wise enough to know my child just needs a safe, quiet place to be.   When his daddy picked him up, he promptly fell asleep in the backseat of the car.  Like a toddler who's had too much activity in his day, my "normal" looking 8 year old boy felt much better after a power nap. 

I hope that in the future you will remember my son for whom I've often thought I should buy a shirt proclaiming "I'M NOT A BAD KID. . .I HAVE BRAIN DAMAGE!"  When you see another child struggling, understand that not all disabilities can be seen outwardly.  Even so, the struggle and the stigma are very real.

Thanks.  

Montage of Messes

Wordless Wednesday: 

My blessed life!

I was "talking" with an old high school friend of mine via facebook today.  We were talking about babies first.  She has a baby boy due soon and even though I am done having kids, I live vicariously through my friends.  If it weren't for Matt's good sense, we'd have several more kids by now.  She very sweetly complimented us on our "unique" family. . .  "Yes, you guys sure have your hands full but you both are obviously such loving parents to take on all you have. Your children are a blessing and it seems like you have one great, happy family! I always love to see pics!" 

We do have a great happy family.  In spite of all it's idiosyncrasies and dysfunction. I replied with a gushing discourse about how great my kids are but more than that, how wonderful my husband is and what a perfect partnership we have in our crazy life.

Matt and I have been through a lot.  I don't know what other "normal" marriages go through but it seems like our last 15 years have been pretty nutso and really, the odds have been against us from the beginning.  We did things wrong.

1) We were too young.  I was only 20 when we got married.  Not even old enough to legally buy myself some champagne to celebrate.  Matt took me out for my 21st birthday in snow that was nearly waist deep and then made me scrambled eggs with cheese.  Matt was only 23.  Too young.

2) We didn't know each other long enough. . . or maybe know each other at all?  I met Matt in June of 1996 when he was dating a girl I went to high school with.  I was dating Matt's room mate.  Things didn't work out in either of those relationships so Matt and I started seeing each other the first week of September of 1996.  We started talking about marriage about 2 weeks into the relationship.  He proposed to me by the middle of October (a month and a half later.) We got married October 29, 1996.  Yeah.  That was fast!

We then moved away from everyone I knew to get a fresh start in Arizona.  By February, we'd left the frozen North for everything hot and prickly.  We lived there for 5 years while Matt was finishing school.  Two kids later, he graduated and decided to join the Army.  I moved back "home" to Washington and lived down the street from my parents while he went to basic training, then AIT.  When we finally were reunited as a family 8 months later, I realized that the man I'd gotten used to as my husband was gone.  He'd been replaced by an evil doppleganger!  By this time, I was 5 months pregnant with what I was about to find out was conjoined twins.  (conceived on his Christmas vacation for all those mathematicians)

When I went into pre term labor, we were forced to uproot again a couple of months later and moved to San Antonio where we lived in The Fisher House.  ( I just realized that we're in the video that's on their page.  Check it out)  We lived in a suite of two rooms and a bathroom for 6 months while the babies were in the NICU.  Then they died.  We moved again, this time across town while we struggled to adjust to life with empty arms. 

Shortly after the twins died, we decided to adopt.  We felt led to adopt kids with special needs so we adopted Daniel first.  He has a congenital brain abnormality.   A year and a half later, we brought Willow home.  She has neuromuscular disease.  Soon after that, Noah was diagnosed with Asperger's Syndrome.  That's a lot of quirky kids in the same house!  We've had to watch our kids go through hospitalizations, surgeries, therapies and appointments of all kinds.  We've agonized over decisions for their health and well being.  We've prayed.  We've cried a lot of tears. 

It hasn't been an easy road.  In fact, its been a lot of hard work and a lot of clinging to an unyielding promise to love each other in spite of. . .  In spite of trials, in spite of circumstances, in spite of bad attitudes and changes you can't stop from happening.  Life is hard for anyone.  It seems like we've chosen a more difficult path than some, yet God continues to bless us and provide for us.  He shields us and goes to battle on our behalf. . .  "But you, LORD, are a shield around me, my glory, the One who lifts my head high."  Psalm 3:3 

Thank God for small blessings

Daniel is now bathing completely by himself.  He doesn't even need help washing his hair anymore.  This is a huge breakthrough because it use to come with a lot of tears and stress and crying and screaming even when I had to wash it for him.  He was so afraid of getting soap in his eyes!  He even washes himself better than his siblings do most of the time.  Generally speaking, he comes out smelling clean instead of like a wet dog like his brother does when he gets out of the shower.  This, folks, is what I'm counting as a blessing for today.

Balance: SN kid style!

For anyone who has children with special needs, I know you know what this means.  I have an order from the pulmonologist that Willow is supposed to wear her oxygen whenever she's walking.  She can't carry the tank because it's too heavy and then she can't walk.  She wants to participate in all the things that other kids her age do (to the best of her ability.)  She wants to ride her bike and bounce on the trampoline, take dance classes and "run."  None of those things are possible for her with a back pack oxygen tank.  So what do we do?  We have to find balance.  We have to balance her health with her activity level, her happiness and social and emotional growth and well being with what she is capable of from a lung standpoint. 

Willow's had a lot of surgeries.  In the year and a half we've lived here, she's had 5 procedures requiring anesthesia.  Three were ear surgeries.  One was an MRI to evaluate for hip surgery and now again for her recent foot surgery.  Putting a child under anesthesia is never a good thing.  Again, we have to weigh that against quality of life.  Without the ear surgeries, Willow's world would be muffled and hard to understand.  Her academics would suffer.  When she can't hear, her speech is so slurred that others have a hard time understanding her.  Her foot had gotten so twisted that it was harder for her to do the things she loves like dance and even walking was sometimes painful and difficult.  More time in a wheel chair to avoid anesthesia?  or a foot surgery that can fix the problem and make it easier to walk?

Every specialist sees through a narrow window.  A pulmonologist's priority is lungs.  They don't see muscle weakness so much.  Orthopedic surgeons see bones, and ligaments and how they work together.  A physical therapist sees how weak Willow is and wants to increase her therapy schedule to 2 times per week.  Speech and occupational therapy of course would need equal time.  If I took her to as many appointments as "they" tell me she needs, she would be "truant" from school!  Already, the school is breathing down my neck because she's had too many absences.  Their priority is education.  All of these medical problems are irrelevant to them.

I have to see it all.  I have to make good choices for the care of all of my children, individually and as a whole. . .when there are no perfect priorities.  Somewhere, something suffers, no matter what choices I make.  While everyone has their opinion, at the end of the day, I am the one that has to live with my choices and know that every single one has such an impact on the lives of my children.  There are no right answers.  We can only do our best and then live with the consequences of our actions. 

On my heart tonight.

It's not "Wordless Wednesday" so I thought I should say a few words here.  I read several of my blogging friends posts for today and many of them are adoptive parents or are somehow involved in orphan ministry.  Tonight, the plight of the orphan is heavy on my heart.  I can't help them all. . . but maybe with some friends on my team, we can help a few more!

Surgery Day!

Willow was born with bilateral club foot.  She had at least one surgery to repair both of her feet as an infant but one of her feet, as she grew started to "club" again.  Today they did a "Left Tibial Tendon Transfer" to correct her foot that was turning in.  We had been trying to avoid surgery but after years of AFO's it only got worse.  When the surgeon finished that procedure, he noticed that her big toe was still sort of "falling" so he also did a fasciotomy and put her in a lovely pink cast. 

We woke at 5 this morning to be at the hospital by 7.  The surgery was scheduled for 8:30.  After discussing her condition and anesthesia plan with several doctors and nurses they decided to purge whatever anesthetic choice they had made from their system because Willow has a risk of malignant hyperthermia.  They didn't actually start the surgery until 10:00.  With the added procedure, she didn't come out of the OR until almost noon.  Most things take longer for Willow; waking from anesthesia included.  We didn't arrive back home until 4:00.   



Spaghetti-o's are comfort food when you have a cast on your leg.  She's eating them right now while we rock out on some Justin Bieber.  She feels pretty good as long as her foots not hurting. 





She has been in horrible pain but we are trying to stay on top of it with medicine.  We'll be giving her breathing treatments regularly to prevent pneumonia and lung collapse and if all goes well, she might get her cast of in 3 weeks and receive a removable one instead.  We're tired and cranky and I have to get up at 1:30 to give her the next dose of pain medicine so I'll have to be brief today.  I just wanted to let everyone know that she's doing well!  Thanks to those of you who prayed for her today! 

Surgery tomorrow!

Willow's foot surgery is tomorrow!  It ended up being a day filled with phone calls today trying to arrange for a hospital bed to be delivered, calling around about a new wheel chair and trying to arrange with the school for Willow's tutor to come out to our house.  I really don't have anything nice to say about the whole process, so I (in an effort to stick with my "no complaining" resolution) will not complain.  But that leaves me without anything to say.  It's late and I still have a lot to do in preparation for tomorrow so I will just ask all of you to pray for Willow.  Pray for the anesthesiologist and pray for a speedy recovery! 

Lessons

Willow was scheduled for foot surgery tomorrow.  We've spent the past 2 weeks arranging for a nurse to be here to help care for her after the surgery, arranging for special equipment like a hospital bed, shower chair, etc to be delivered.  The school will be sending a tutor out to our house and we even have a physical therapist who makes house calls.  We were ready.  Then they called today and said they can't do it tomorrow.  The control freak in me wants to scream!  However, I believe that everything happens for a reason.  I believe in God's perfect timing.  The doctor's office needed to postpone the surgery by a day and do it on Saturday because of over scheduling or a conflict with the doctor being on call Friday. . . I'm not sure of all the details.  Does a day really make much difference?  Yes.  Why?

Because maybe. . .just maybe, God needed to show me something.  Until recently, I was a very lonely person.  We moved to a new town just over a year ago and right around the 1 year mark, I was feeling pretty down.  I missed the support I had in San Antonio.  I missed my parents, my siblings.  I missed my friends.  I thought I'd never have that feeling of "belonging somewhere" again.

We'd been invited to church several times by our dear neighbors but I had always declined the invitation.  I thought: we can't do that!  Isn't it enough that we live next door to these poor people; Matt and I with our hodge podge of high maintenance, LOUD children?  We don't want to invade their church too!   It will be too much for them!  They won't be able to escape us!  

But over the summer, they invited us again.  This time to Vacation Bible School.  I tend to take my kids to more than one VBS in the summer anyway just because it's wholesome, it's fun and it's free!  This seemed like a good opportunity to get my kids out every evening for a week and finally show up to visit my neighbor's church.  We walked in and immediately saw people that my kids knew.  The nurse from Daniel's primary school was there and knew Daniel by name!  The church was small.  It was much smaller than I ever thought would feel comfortable for me again, even though I was raised in a small church.  My neighbor told me that they only sing hymns in the services.  Surely that wasn't for me, right?

But we went.  The kids had a great time.  They said it was the best VBS ever!  I thought, really?  But it's so small!  There aren't very many kids!  It's not fancy like other churches we've gone to.  There aren't lots of programs and people and loud music.  They don't even have a special needs ministry!  But we went again. . . and again. . . and we stayed.  We are home.  I still marvel at the people that go to my little country church in the middle of no where.  They are family.  My family.  I can't believe how big their love is and that they have just accepted us in to their lives like we've been the missing piece that they have been waiting for.  Our pastor called me Wednesday afternoon to make sure he knew what time Willow's surgery was going to be.  He plans on being at the hospital with us.  I had no idea people still did that sort of thing.  Never, has anyone offered to come to the hospital and stay with me when Willow has surgery. . . and she's had a lot of them.

 When he offered to come I said "Well thank you, that's very nice but you don't have to do that."  Thinking to myself, that's a long drive and it will probably be very early in the morning.

He replied without hesitation and with complete sincerity "But I want to show Willow the love of a church."  

He wanted to be there, not for Matt, not for me but for Willow. . .my 11 year old, broken, sickly child, my child that talks with words so slurred and nasally that much of the time people can't understand her speech, my child that can't keep up socially, emotionally or physically.   He wanted to show her what it means to be loved.  I thought for sure that when her surgery schedule changed that he would have other, more important plans.  It made no difference to him.  He's still taking time out of his day to drive the 40 minutes plus it takes to get to the hospital because he wants to be there for my child.  Amazing.  Lesson #1  We have a family.  We belong.

As soon as I got the call that we were going to have to do the surgery on Saturday, I had resigned myself to the fact that I was just going to have to take Willow to (yet another) surgery by myself.  I've done every surgery by myself since we've moved here.  Matt was going to be at home watching the kids.  I posted on my facebook page that I was looking for a place for my kids to go. . . individually of course because certainly no one would be willing to take on all 3 of the other kids.  Within a few hours, I had offers from 4 people to take all of them.   It used to be hard for me to find someone who would take Daniel. . .even by himself but today, no one refused.  Everyone who offered wanted Daniel too!  I had so many offers that I was still able to divide them up and I didn't feel guilty that I was over burdening one person.  Lesson #2  I have friends.  I belong.

So God, tonight I repent for all those frustrated words I spoke this afternoon when I got that phone call about postponing Willow's surgery and I thank You that You gave me this opportunity to feel loved and accepted in my community but most importantly in your kingdom. 

What does "retarded" mean anyway?

I went to talk with the psychologist that did some testing on Daniel recently.  I was hoping that he'd have some good news for me.  I was hoping he'd tell me that my son is not retarded.  No such luck.  What he did say is this:  "It should also be mentioned that because Daniel's core IQ values are near the low average range, and because it is really his attention and concentration problems that prevent him from performing at that low average range (which is far better than mentally retarded,) the goal in his education should be to get him performing at least at the low average range."  Meaning this:  my son's IQ is low enough to put him in the "MR" range but it's close enough to being "low average" that if we could get him to have any sort of focus and/or attention span, there is hope of him performing at that level.  I guess that's good news, right?  Moral of the story is this:  after the 3rd set of psychological tests on a child, as much as a mom doesn't want to believe her child is "intellectually impaired," and as much as the teachers that attempt to educate also disbelieve. . .  maybe it's true after all?  Other than his low IQ Daniel left with similar diagnoses in other areas as he had when he went in.   

          AXIS I   Mood Disorder NOS with significant anger, agitation and general moodiness, Attention-Deficit Hyperactivity Disorder, combined type, Reactive Attachment Disorder, Oppositional-Defiant Disorder, Intermittent Explosive Disorder, Learning Disorder Involving Written Language. 

          AXIS II  Borderline Intellectual Functioning (V62.89) Rule Out Mild Mental Retardation

          AXIS III Brain abnormality

          AXIS IV Psychosocial Stressors, Adoption, Brain Abnormality, Special needs in other children in the house

This is only slightly different from how he was already diagnosed.  Last year the team that saw him when he was admitted as an inpatient in the pediatric psych hospital diagnosed him with BiPolar Disorder.  It's flip flopped back to Mood Disorder NOS, which is what it was prior to his last hospitalization.  It's basically the same thing anyway.  I thought I'd be more depressed hearing yet again that my little superstar is "retarded."  I'm not though because in spite of that diagnosis of doom, the doctor had good things to say that were absolutely spot on.  It gave me confidence in knowing that "Hey this guy 'gets' my kid and he  thinks just maybe there's hope for him yet!"  He said that Daniel's strength was by far knowing what is going on around him and being attuned and responsive to that.  That explains why, in spite of his low IQ, he seems so much more "with it." Also:  He told me that when Daniel learns something. . . even though it might take him longer, he's not likely to forget it and most importantly, he said if we continue with the hard work and focused instruction, he just might be able to learn to read!  Oh if only. . . it would be this mama's dream come true!  The tears welling up in my eyes tonight as I type this are because I know the hard road my amazing child has before him.  I only wish I had the power to take it all away. . .make that crack in his brain go away and give him a "normal" life!  Oh how I love that boy!  I've often said as big as his rage is. . . as loud as he screams and fights and as much as he lacks control. . . THAT is how big my love is for this precious child God sent me from the land of Hanboks and Kim Chee.  That big and bigger. 

Beginnings

I decided to motivate myself for blogging again by jumping on the NaBloPoMo bandwagon.  A lot has changed since I was a regular blogger!  In fact, the blog world has a whole new language of it's own!  I actually had an online conversation with my friend Erin (who is a much more experienced blogger than me.) Her blog is here.  It went something like this:

Me: "Oh good!  I found you!  I need your help!"

Erin:  "OK"

Me:  "I can't figure out how to get the NaBloPoMo meme onto my blog"

Erin:  "What platform?  blogspot?"

Me:  "yes"

Erin:  "don't know blogspot.  On wordpress you'd put in a text widget under appearance. Does that help at all?"

Me:   " I have my tools up and there are several places where I can 'add a gadget'

let me see which one sounds appropriate and run it by you. . ."

Erin: "do you see something that says sidebar?"

Me:  "HTML/JavaScript HTML/JavaScript AddAdd third-party functionality or other code to your  blog. and yes it in the sidebar."

Erin:  "That sounds right"

Then later. . .

Erin:  "don't forget to add your link to the blog her site. wow, there are a lot of blogs on there!"

Me:  "How do I do that?"

Erin:  "get the url of your post, go to that site and at the bottom theres a Mister Linky's Magical  Widgets. copy and paste your url"

I can't tell you what the difference is between a meme and a widget or a gadget.  Just like I can't tell you what happened to my margins on this post.  Nor can I fix it, even though I've tried looking at the html code and taking things out.  I've tried everything short of starting from scratch.  (Which I'm not going to do because I'm not going to let my perfectionism stand in the way of my blogging!)  My margins are weird in this post.  Love me anyway. . . in spite of my imperfections, or not. . . whatever!  

I titled this post "Beginnings" because of NaBloPoMo.  That's their theme for this month.  In many ways, it is a month for beginnings.  I am beginning with my blog again and this time I am sticking to it!   A new year is beginning and with it a new attitude of gratefulness and JOY even when circumstances are rotten!  We all know things could always be worse, right?  Also, aside from that, we are embarking on a new journey this week with Willow.  

Clinging to my "JOY in spite of. . ." might be more difficult than I realize today when Friday arrives!  Willow is scheduled for an anterior tibial tendon transfer on her left foot.  For a "normal" kid it would be less of a big deal but for her, that means big life changes.  At least for a little while.  While all the other kids are returning to school this week, she is going to be on "hospital/homebound" education for several weeks while she heals. The school will be sending a tutor out to work with her a few hours a week.  She will also have a nurse that will come for 8 hours every day for the first 21 days.  She will be non weight bearing, in a cast for 4 weeks.  Because she has myopathy, low muscle tone, or form of muscular dystrophy, (you'll hear me refer to her muscle abnormality by any of those names, probably) she has a hard time with fatigue and self help skills.  Add to it a 10lb cast on her leg that can't have any weight put on it and she'll be pretty much dependent on us for everything. We'll also have to watch her closely for atelectasis (which in layman's terms is collapse of part of or in some cases all of a lung)  She tends to have chronic left lung collapse without being sedentary.  Laying around makes it worse.  She'll be on breathing treatments, chest percussion therapy and oxygen and need monitoring of her blood oxygen levels throughout the entire time.  We'll have to make sure she's keeping up her strength through physical therapy because after week 4, she'll be able to start putting some weight on her foot and walking a little bit.  (if she can) So for us, January 6th brings us a new beginning!  I'm sure we'll all be so glad when it ends!  The nurse comes tomorrow to evaluate her and look at her equipment.  I'm praying they send someone who doesn't mind a kid constantly touching them!  Willow, ever our "space invader" is in need of a lot of physical contact, even on a normal day! 

On many levels, this month brings me back to "beginnings."    But I am up to the challenge!  Bring on January!

A very happy "boot-day"

Yesterday was my nuttiest peanut's birthday. It was quite a day. He woke up early and announced to everyone that it was his "bootday." He was convinced that he was going to get to stay home from school, open his presents before getting dressed, and eat cake for breakfast. He is 7 now after all. This is what 7 year old boys do in his world. When I was forced to burst his rose colored bubble, he had his first meltdown of the day. He began screaming at me and making half incoherent demands. Apparently I am the meanest mom ever. Obviously I care. NOT! Once he finally calmed himself down, he came to tell me "OK I can have cupcakes in my class. I won't worry about my presents." and that was that. He had a pretty good day at school. He took 2 naps.

Today has been an interesting day. I spent the day at the great and wonderful Brooke Army Medical Center (Can I hear a HOOAH?!) Where the boys and I sat waiting for 5 hours in the ophthalmology clinic. We know nothing except we will be back in the ophthalmology clinic again tomorrow. This time, after putting drops in Daniel's eyes tonight because they don't dilate in the clinic. I'm praying that I don't have to spend all day sitting there again. My butt is flat enough already thankyouverymuch.

On tonight's agenda? A trip back to BAMC to get Daniel's blood drawn for Tegretol levels. I'm sitting here researching what tests to ask for and praying that I get a doctor who will just listen to me. It's not like I don't know what I'm doing. It's hit or miss with these people. I mean really. . . what will it hurt to do blood tests? And since we're doing blood tests. . . what's a couple extra just to make sure we're not killing him with psychotropic medication?

On a side note: we're moving to Georgia soon. Hence the urgency to get all my medical ducks in a row. Willow's getting new braces for her legs. She just got a new hearing aid and FM system. We've got to make sure the boys meds are right. I'm hoping for a smooth transition into our next duty station from a medical standpoint but I can't count on it so it's important to have everything in order before we go if possible. Oh and the cat needs to go to the vet and get shots just in case we have to put her in a kennel for a short period of time while we're waiting for housing. Just one more thing! ;)