Archive for September, 2011

Epiphanies and Such…

September 30, 2011

I am really enjoying this new phase of photographing baby.    At 3 months, he is awake more for big boy pictures.   Having said that, I can’t deny that Troy is preemie delayed.  I try not to worry about it because (a) I know I am knee jerking to everything because of stress related to Ty’s disabilities and (b) Tori was abnormally advanced for a 33 weeker.  Still though…I am a mom and mom’s worry.    The things topping my list are:

1.  He IS tracking but it has been slow in coming.  In this, he reminds me of Ty.  Ty avoided eye contact a lot as a baby due to sensory overload issues.  Troy is making eye contact and responding to smiles but he doesn’t hold it super long.

2.  He has quite poor neck strength.  If I put him on his tummy, he will bury his head down because lifting it is so difficult for him.  I have a theory about this.  I think preemies have a harder time with neck strength because they are having to support their head earlier then they were supposed to and then they gain weight more rapidly outside of the womb than in.    The immaturity combined with the extra weight they weren’t prepared to carry stacks the odds against them.  Tori and Ty didn’t have as much trouble BUT they weren’t nearly as big as Troy and that makes a difference.  Still I am watching this though.

3.  When I burp him on my shoulder, he buries his head into my shoulder and will often shake it back and forth.  As this is Ty’s predominant tic, it catches my attention.  I have no idea why he does this.  The back of his head is getting really flat because I lay him on his back so much.  I have tried to alternate to his sides but he flips himself right back (and yes I do put support behind him but he finds a way).  I try to be cautious about giving him any opportunity to get his face buried because when he is on my shoulder and sleeping, he wants his nose pressed deeply into me.  I fight him to make him turn his head and often just have to hold his head to the side until he quits fighting me.  For this reason, I am so glad he can’t roll over yet because it’s going to scare me to death if he insists on sleeping facing down.

4.  He is still sleeping a ton.  The last couple of days he has been more awake during daytime hours though.  He is rarely awake for more than an hour at a time.

5.  I have started noticing some significant eye crossing this afternoon when he was tired.  It is not a good sign when they start this late.  Brand new, newborns typically cross but when they don’t cross and then start crossing a little older, that is when you get concerned about strabismus.  (Remember – Ty had two eye surgeries and we still patch him 2 hours a day so I know about this one).  Hopefully today was a fluke.  We shall see.

So those are the things that I am being a little anxious about but on a good note:

1.  He is tracking and SMILING a lot.

2.  He is giggling.

3.  He loves to look at his toys over his bouncer.

4.  He loves to be swaddled and sleeps well.  In fact, sometimes when he is fussy, all he wants is to be tightly swaddled and put to bed.

5.  He has managed to grab his toy rings on his bouncer a few times now (though I am not sure it was entirely intentional).

6.  He is cooing and it is ADORABLE.  He tries to imitate the sounds he hears too.

7.  (And this was added 9/30 to the list days after I wrote this initially)  Last night I fed him at 9:30 PM and he didn’t wake to eat until 8:30 AM.  ELEVEN hours!  Wow!  He was awake a lot more yesterday than usual so I think that was a factor.  Tori was sleeping 10.5 on average at 3 months.

It seems to me that Troy is meeting milestones more in line with his one month corrected age (which is completely appropriate).  It is common for preemies to get delayed behind even the corrected age sometimes too.  They just need extra time to get it all figured out.  He is coming along though and we are enjoying every minute.

He hasn’t had any apnea alarms for TEN days now too!  (Last was on 9/17 and I wrote this 9/27).  YEAH!!!

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Me:  Ty untuck your shirt from your gym shorts

Ty:  Why mommy?  Because you think it looks silly? (emphasis mine)

That made me smile.  He will likely never thinks he looks silly but at least he learns to acquiesce to my social consciousness hee hee.  It took forever to break him of the habit of black dress socks pulled to his knees and gym shorts.

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Time to get real now.  Ever since posting the “Why I Hate Blogging Sometimes” post, several girlfriends have called or emailed and said “Hey glad to hear you don’t have things together.  Join the club.”  LOL.  That is the best kind of validation there is right?  :)

God spoke to me today on some of the things troubling my heart and I cherish what I heard so I thought I would take the time to share.

One of the issues I have been struggling with is how to raise Ty and help Ty to live under boundaries using appropriate discipline.   This is VERY difficult for two factors.  In the first place, Ty’s infractions are generally tied to his compulsions.  This makes the temptations to “do” quite significant for him.   Recently, he was grounded for failure to follow the Xbox rules.   I won’t list his offenses but will say in short that he knew what he was allowed to do and what he wasn’t allowed to do and he waited for opportunities to “get away” with doing what he was oh so tempted to do.  And yes – he does understand the relevance of deception.   (Often times kids with spectrum issues are so literal that truth trumps but nothing is ever “always” true and Ty does recognize when to bend things to his advantage.  Anyone watch the scene on Alphas recently when the show’s Aspie character, Gary, dialogued on the benefits of “learning to lie”?  Jim and I laughed over that.)

The other factor is that because Ty doesn’t emote in the way that the average person does, his reasons for “not” doing any specific thing have no relevance on relationship.  You would be surprised at what a difference that makes (and oh my gosh – what a huge challenge).  Here is what I mean by this:

In a typical scenario, when a person is given an instruction not to do a given thing, the “because I said” line is not particularly effective.  Not all by itself anyhow.  Consequences are no doubt a deterrent but my experience suggests that physical consequences are a lesser when compared to emotional/social/relational consequences.   Why is it that I don’t steal from my mom?  At 38 she isn’t going to spank me or ground me or put me in jail either for that matter.  I don’t steal from her because it would hurt her.  I don’t want to hurt my mom.  Children do get this.  They learn how things “feel” and begin to mature in their understandings of how not to create that emotional/relational hardship for someone else pretty young.  Not perfect mind you, but it is a motivating factor and I would guess not “disappointing” is a more motivating factor than fear of physical consequence as a general rule.  (Do you disagree?  This is just an opinion).   When you have the ability to reason with a person on an emotional/social/relational scale, you get their buy in.  They understand a more relevant and relational reason for not repeating the offense.   As parents, we do use created consequence as enforcing boundaries because we are trying to teach that real life WILL have consequences that are very real and we want to motivate our children to make good choices in a protected environment where our choice of consequence is a lesser thing that what the world would dish out if the offense was done on a more global grown up stage.

This is where the challenge is introduced for Jim and I.  Ty is very socially/emotionally immature as a result of brain injury.  As a result, the only tool left in the bag is the more physical consequences (like time out, taking something away, grounding…etc).    We do explain the “why’s” but it is not as with our other kiddos because it doesn’t translate the same way.  He can’t relate.  Remember the kindle incident this week where he insisted I couldn’t be sad because a kindle wasn’t sad?  Same thing.  You can explain to him that taking Tori’s turn on the computer is selfish and makes Tori feel angry and sad but since Ty doesn’t relate to “angry” and “sad” very well, that isn’t real meaningful information and certainly NOT a motivating factor for him.  He is very unlikely to consider her before he makes a choice to offend.   Because he is ego-centric?  No.  (Though to be fair, all children are to degrees anyhow)  Because he can’t.  He can’t relate to how she feels.  His brain makes that very difficult for him.

Since I do have the ability to relate, I am trying to put myself in Ty’s shoes.   If someone asked me not to do something and gave me no explanation for it that made any sense to me whatsoever other than “because I said”, how likely would I be to be motivated to comply?   Maybe I am a bit of a proud little rebel in this admission but I don’t think that would be good enough to secure my compliance (especially if I was extra tempted to do that specific thing).

When we tell Ty “you may not download any new demos on the Xbox and if you do you will be grounded” – we have offered nothing in terms of a deterrent.  Groundation is simply too long for him to consider.    He perceives time like a puppy.  Here and now.  While he does consider it enough to attempt to sneak sometimes, we conclude that consequences alone are simply not that relevant to him.  They do not help much in terms of deterring him.    I do want to emphasize though that Ty is a sweet kid and it is not in him to disobey for the sake of disobedience.  As a result, we don’t face this challenge with everything.  For the greater part, he complies with house rules pretty well.  When his specific areas of interest are on the line though, we simply can’t compete with those compulsions.  Now before you ask, yes Jim and I have considered options over and over and over but we so far we can’t reach a conclusion we can agree on nor can we find a disciplinary action that demonstrates any level of real effectiveness.    This has been very hard to figure out.  We are parents who love our kid and we feel such a huge burden of responsibility to teach him and when you can’t figure out what works because what should work – doesn’t – well it’s scary.

Another thing heavy on my heart is watching that gap between Ty and others widen.  He is such a happy, loving child and he WANTS to be with people but he faces so much rejection (both intentional and unintentional).  That is pure misery for mama.  Often times people point out that Ty isn’t aware of what I am and that is true for now but I wonder about the future and if he will feel the consequences of it and mourn it in a less obvious way.  Kills me to think about and there is just nothing I can do about that one.

When it comes right down to it, it isn’t just grief I battle.  It’s anger.  It isn’t “why me” Lord.  It is “why me” if YOU aren’t going to tell me what to do Lord.  My accusation isn’t that my family should get a hall pass on hardship but I do want God to make things very clear when it comes to handling that hardship.  I find myself asking Him what on earth Jim and I will do if we never learn how to redirect Ty’s compulsive behavior and what that means for his future and whose fault that will really be.     Essentially I am accusing God of creating an impossible situation and then punishing us all for it.   He allowed the brain injury and now we are responsible for raising Ty and helping him learn to make good and wise choices yet Ty has the odds stacked against him in this area due to injury and heaven has been silent in regards to what we do about it so if Ty faces future hardship because we couldn’t figure out how to help him in this area – is that our fault,  Ty’s fault or God’s fault?  Then I get mad about this.   That is a predicament isn’t it?   I am not advising that one box with God over such things nor do I think screaming up to the heavens “this is YOUR fault” is wise, honoring, loving, trusting or a whole host of other things but I am just telling the truth here in regards to the emotions at play.  See.  I don’t have it all together.   I don’t support my own thinking but I don’t like to not have a plan.  You know this about me.

This week the Lord did clear my vision up in the kind of way that He likes – meaning He is more in the business of fixing my heart over my problem.

When I step out of my circumstantial box and evaluate myself more clearly, I realize that the largest contributing factor to my emotional state is…sigh…as always…fear and control.  It always comes down to this.  Always.  I want to fix it.  I feel responsible to fix it.  I feel like I will have failed my child if I can’t figure out how to meet his needs – his different needs.   Additionally, when I am tired and stressed, I don’t want to have to deal with special needs.  There.  I said it.  I don’t.  I don’t always feel like fielding 566 questions in the same day (especially when 362 where the same thing).  I don’t want to dig through the closet trying to find one soft plain t-shirt for him to wear because I haven’t done laundry and we are battling over a collared shirt.  I don’t want to discuss which protein he MUST eat at lunch because no he cannot eat 100% carbs in a day and have a cheese sandwich everyday for lunch.  I don’t want to keep teaching the letter P over and over this week.  I don’t want to tell him not to touch something and find him touching it an hour later and then have that scenario repeat itself five more times and then have him look at me in apparent bewilderment not really getting the meltdown I am experiencing over having clearly repeated myself oh so many times.  I don’t want to cry metting out a consequence that I know isn’t going to work but feeling like I have to do SOMETHING and then worrying about what is just punishing versus disciplining.    There is a lot more that I want to say here but I don’t want to take the time to word it right for a public blog.  I think you get the basic idea though.

It occurred to me though that on the days that I choose grace, compassion, mercy, patience, forgiveness…I get through it.  I get through it really well.  When I am not worried about all the things I am not “fixing” and I am just doing my best in this day in a gracious manner – we are good.  It’s all good.    The days that I fight it, resent it, live in fear over it, try to control the heck out of it – those days are not survivable for me.    I will keep asking Him to give me direction and to tell me WHAT TO DO but it seems to me that chances are, He isn’t particularly concerned about Ty’s future near as much as my present.   Ty is completely loved by God and I am super ashamed of the above accusations I lobby at God because I am accusing Him of not loving either of us.   I know better.

I wish I had the answers.  I wish I would meet someone who could tell me what to do who has already experienced all this.  I wish I could fix it.  I wish I could not worry about the future.  I am not there yet but when I heard God whisper “You go ahead and let me be God and let me handle the big stuff and you just concentrate on letting me love you and then let that love spill out over your home” – I knew then that I do know exactly what to do today.  Live loved.

Been listening to this Hillsong worship song a lot this week.  Even though “Hosanna” is typically used as a term of praise an adoration for God, it actually means “God Save Us” and when I sing “Hosanna” that really is the cry of my heart.   Save us God.

I see the king of glory
Coming on the clouds with fire
The whole earth shakes
The whole earth shakes

Yeeeah

I see his love and mercy
Washing over all our sin
The people sing
The people sing

[Chorus]
Hosanna
Hosanna
Hosanna in the highest [x2]

I see a generation
Rising up to take their place
With selfless faith
With selfless faith

I see a near revival
Stirring as we pray and seek
We’re on our knees
We’re on our knees

[Chorus]

Heal my heart and make it clean
Open up my eyes to the things unseen
Show me how to love like you have loved me

Break my heart from what breaks yours
Everything I am for your kingdoms cause
As I go from nothing to
Eternity

[Chorus x2]

Hosanna in the highest

 

More Lion Around

September 29, 2011

Another vendor sent me a lion costume and I loved this one too.  Fun to get to post more awake pictures.

Troy just loves to look at Tanner.   I had asked him to get Troy’s attention for me and turns out Troy looking at Tanner was a much better piece of work then baby looking at me.  The matching hair and mane was too perfect too.  :)

Jim and I were watching Blue Bloods last week and we both giggled at how Troy reminds us of Tom Sellek.  Deep dimples on both cheeks plus the chin dimple.

Speaking of “lyin”, did I already post this story?

Recently Braxtyn spent the night with Tori.  Both girls were jumping on our bed and Jim got after them for it.  A bit later, Tori comes out of the room panting and out of breath.

Tori:  Daddy!  Braxtyn is jumping on the bed!

Jim:  Uh huh.  And what were YOU doing?

Tori:  I was just exercising.

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Earlier this month we quit the Zantac and started Troy on the generic brand of Prevacid (lansoprozole).  I am pleased to report that his vomiting has slowed to about once a week now instead of every day.  He still spits up a ton but that isn’t abnormal.  So glad to have greater spans between the projectile incidents.

He also slept 8 hours for the first time on 9/14 and has slept several 9 hour stretches as well.  Like Ty and Tori, he was sleeping through the night by 2 months.  I looked it up and Tori was sleeping 10.5 hours by 3 months so hopefully that will be true of Troy as well.

He first giggled on 9/21 (well Jim and Tanner claim he was giggling before that but *I* didn’t hear it until 9/21).  So cute.

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Me:  Okay you are going to do a book report.

Ty:  YEAH!!!!!   Wooohoo!!!! (Runs down hall)  I LOVE book reports!  (pause)  What is a book report?

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Today Ty got a 73% on his math.  I told him he needed to redo the lesson and he said “YEAH!!!  I LOVE doing teaching textbooks”.  Grrrrr.   I watched him out of the corner of my eye and on the second go round he only missed one out of 23.  Even more impressive, he was typing answers in faster than I could read or hear the screen commands (and no, they weren’t all math facts – a lot of geometry type questions).   Got me thinking.  Did he fail on purpose the first time or did he remember the correct answers so he could fly through the second time?

 

 

 

Lion Around

September 28, 2011

Things I love to hear Tori say to Troy:

“Hello Handsome!”

“Hey Little Mister”

“Hi Chunky Monkey”

“We are giving you a bath and we are taking very good care of you.”

(Troy and Grandma)

All shots above taken on September 13th – Troy was almost 1 month corrected and 2.5 months actual.

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I have had this website for over 10 years now and I don’t plan on abandoning it because I love the many records I have kept of my children via blogging.  Sometimes though, I really hate the fact that it creates a one sided conversation and often may come across with a lack of authenticity in regards to the woman I am.

I’ll give a couple of examples that will illustrate my frustrations.   A few weeks ago, I ran into a friend in the grocery store.  We had not had the opportunity to chat for quite some time.  She referenced so many current events in my life (because she reads my blog) yet I knew very little about hers.    I felt embarrassed to tell you the truth.   Made me wish for more real and authentic chat time with my girlfriends.  Made me resent a culture where we rarely get visit time face to face and then cultivate relationships the best we can through electronic media.  I should be grateful for what we have (and to degrees I am) but I also suspect we have lost something pretty important too.  I am the last person to know how to fix this in my own life either because raising my children and keeping up my home is about all I am capable of most days so “living in community” is not something that comes easily for me.

The example of the second frustration is as follows:

A friend calls me and amidst the details of the conversation she lets me know that she keeps up with me via this blog and then commented on how I “have it all together”.

WWWWWWWHHHHHHHAAAAAAAAATTTTTTTT?

I wanted to cry in that moment.  I felt like a fake.

The truth is, there are many reasons why I choose to avoid too much lamenting on my blog.  In the first place, these are records for my children so I want to be wise about how I journal something so public.  In the second place,  I know that I knee jerk when reading too much of the “whinies” when reading other blogs or facebook so I try to avoid it myself.

I love my husband.  I love my children.  I love homeschooling.  I love being a mom.  I am happy with my life.  I am happy period.

HOWEVER…there are still a lot of hard days in between.

I am almost always depressed in September.  October is my favorite month of the year but I am starting to wonder if that is in part due to a celebration of surviving September.  That first month back to school is a doozy for me every year.  This year especially because the demands of the kids are greater.

I am also really struggling with trying to figure out how to parent a child with disabilities.  It is lonely.  I am frustrated.  I have no idea what I am doing half the time.  I cry a lot.  A whole lot because I don’t know how to “fix” any of it and I don’t know how to really help and I worry about the future and I argue with my husband about what works and what doesn’t and I wonder if any other mom is going through the scenario that I am and what she is doing and how much further down the road she is and I wonder if I am going to do more damage than good in the long run.  (And yes I know that was a terrible run on sentence).

I read a book last week called The Oak Leaves by Maureen Lang (you might still find it for free on your Nook and Kindle – it was free last week).  It is a fictional story about a family whose child is diagnosed with Fragile X.  The author’s son has Fragile X and I heard so much of her heart in this fictional story.  There were several areas I highlighted in her book that inspired and challenged me.

 

I had the opportunity to go to Women of Faith on Saturday only (thank you Kelly for that ticket!) and that was such a blessing.    You can’t even imagine how excited I was to be within 15 feet of Amy Grant.  First time in my life I have ever felt honest to goodness star struck!  I have loved her all my life.  That was awesome all by itself.   I also enjoyed the speakers this year.  I didn’t get to hear Brenda Warner (Kurt Warner’s) wife but I did just buy her book.  I know she is a mama to a kiddo with disabilities and she is a “be brave and wear combat boots” kind of person so I thought maybe her book could inspire me.  I don’t feel brave right now.

Lisa Welchel talked about friendship (which increased my guilt where this blog is concerned by the way).  One thing she said that stood out to me was that if you find another woman who as it all together, RUN!  She said that if another woman has to work that hard to live up to a standard of perfection, she will hold that same model over your head.  Boy is that true and I KNOW I have BEEN THAT WOMAN and God help me I don’t want to be her ever again.  That is why I crashed a bit when a friend thought I had it all together.  I wanted to tell her, if that is true then run from me.  Run right now.

I could write for quite some time today on these subjects and more but the fact is…I don’t have enough quiet time in this day to concentrate long enough.  My window has already expired.  If this post sounds like I am down in the dumps, sorry!  I am not.  Just being contemplative and honest and felt the need to say “I do NOT have it all together.”  I don’t even know what on earth that would mean.

 

My little niece Quinn is now 4.5 months old and I am JUST NOW getting her newborn pictures posted!   Terrible huh?   She is such a cutie pie and sweet sweet.  I call her my little moon beam because she is a WHITE girl.  I giggle at her skin tone next to Troy’s.   I think Troy will likely out grow her before they are a year old.  They are six weeks apart but technically 3 months apart.

I think she looks the most like Noah but she is her own person too.

In this picture I actually see similarity between her and Cozette.

Had to get a few pictures of her on the bed her Daddy built.  She liked it.  :)

I need to get a recent picture her of her soon so you can see how she is growing.