Friday, June 29, 2012

Under the Threat of Storms...(by Michael)


I took Ava, Henry, and Ella to a new playground (called Nike Park) in Naperville so they could meet up with friends of theirs from church through the Mom's Group that Lindsay is a part of.  

The morning was a musty one as dampness filled the air.  The temperatures had cooled from the day before but the steaminess still lingered.  As we drove I noticed the skies beginning to threaten our playground trip with impending storms.  We continued on in hopes of beating the rain that undoubtedly would come.

When we arrived at the park the kids were really excited to see their friends as well as to go and play on the new playground.  Climbing, swinging, running, jumping--all the delights that a playground brings to children was had here.  Ella was included.

She was free to run her wheelchair at full speed because the space was so big.  She fit under equipment as well as on the handicap accessible ramps and other children delighted in her abilities and chasing techniques.  

About 30 minutes or so after arriving the lightning made itself known and thunder began rumbling.  The skies darkened and we all fled to our cars before the rain fell upon us.  We narrowly beat the large, fast drops that fell from the ominous clouds above.  We spent the rest of the morning at church in the large fellowship hall doing just that...fellowship.  Kids played, adults talked, all ate.  

Below are two videos of Ella cruising the playground...

Thursday, June 28, 2012

One Day at a Time (by Lindsay)

This past Monday (6.25.12), I stepped down to the partial (outpatient) eating disorder treatment program at Linden Oaks. 

The partial program is 6 days per week (Monday through Saturday), 8 hours per day.  Which means I get to come home at the end of each day (and be home all day on Sundays)!

When I came home on Monday, I was almost tackled to the ground by Ava and Henry (and Ella was right behind them in her wheelchair)!  It was SUCH a great feeling.

But "home" was different.  I felt kind of like an outsider.

I'm really supposed to take it easy when I'm at home (no lifting the kids, limit going up and down the stairs, etc.).  The main reason for this is to prevent my body from burning too many calories and going back into "hyper-burn" mode, which many times happens when patients return to more normal activity levels at home (compared to sitting ALL day at the hospital).  And the members of my treatment team know that our "normal" activities at home are a little bit more physically demanding than the average household.  

Today (Thursday), I had my "staffing" (the meeting with my entire treatment team to review my progress).  My weight went down a little when I first when home, but it has remained stable at that weight ever since.  My weight isn't where they want it to be yet, however, my dietician is so impressed with my emotional progress that she said she's OK with where my weight is for now and isn't going to add any more supplements to my diet (yet).  Yay!  My fourth EKG results came back as "borderline."  Again.  I was really expecting them to be normal by this point, but I guess borderline is better than abnormal.   

I did bring up the possibility of discharging completely in the (hopefully) near future, but they said they typically want their patients to do at least 2 full weeks in the partial program and then step down to IOP (Intensive Outpatient Program), which is 4 hours per day.  But there are some other circumstances that weigh a little in the equation, so we all agreed that we'll just take it one day at a time.


So how am I REALLY doing?  It's hard.  There's no question about that.  It's very hard to follow my meal plan when I'm not being monitored by the treatment team (even though it's only been dinners and evening snacks).  But so far I've been successful!  I had one urge to act on an ED behavior and not follow my meal plan, but I talked it out with Michael and the urge passed (can I just tell you how INCREDIBLY supportive he is???).  Sundays are days off for outpatients, so it will be my first FULL day of no treatment (I'll resume on Monday).  I'm hoping and praying for the strength to follow my meal plan for the entire day :)


It's weird.  Typing this all out makes it look so easy.  Just eat what's on my meal plan, right?  Once again, it's impossible to explain an eating disorder.  All I ask is that others believe me when I say how incredibly hard it is.  But also trust me that my children, family and friends are such incredible motivation for me to recover!!  Being home has helped tremendously in the sense that my motivators are right here with me :)


But for now, I have to keep my mind in the moment and not worry about what the future will bring.


One day at a time...

Sunday, June 24, 2012

Eyes...(by Michael)


It's been two-and-a-half weeks since Lindsay checked herself into Linden Oaks.


I've lost track of the days of the week.  


There's exhaustion...and then there is this.  A physical & emotional slow drain that continually runs.  It consumes your body and plays tricks on your mind...I've lost more "things" these past two weeks than ever before: keys, cups, glasses, papers, and so on...I found them all eventually, as well as some others things that have been missing for quite a while.


There is, however, something that I found that I didn't even know I had lost...or maybe it's that I never really had possession of it before and now I do.


My children's eyes.


Over the past two-and-half weeks I have been completely in charge of Ava, Henry, and Ella.  I've stepped into the world that Lindsay so eloquently designed in our home.  A design that allows form and function to coincide.  Three very distinct children with their own personalities, own joys, own fears, own likes, and own dislikes.  Three very  different human beings each striving to be seen and heard; to find their own place in our world.  The environment and its inner workings, its design, lent itself well to me stepping in full-time.   


Over the past two-and-half weeks emotions in the house have been running in high gear...for all of us.  We harnessed that energy often in order to make it through our days and nights.  Within the realm of behaviors and consequences, both positive and negative, I found that my children so easily speak to me through their eyes.


They have beautiful eyes that tell me of their joys and fears, their likes and dislikes.  When words are not sufficient to speak of the wants or needs, their eyes tell the whole story.  As we laughed with one another, hugged each other, gave kisses and tickles;  as we cried for whatever reason or let our anger be known...the eyes of my three children spoke with a determination I had not truly witnessed until this time.


I've grown ever so closer to my children over the past two-and-half weeks.  I am looking forward to when Lindsay returns home and we can continue our life together...I am longing to once again find the deep love we have for each other that resides in our own eyes as we gaze at one another.  


I am looking forward to finding more beauty in the eyes of our children with my dear, sweet wife. 


Wednesday, June 20, 2012

His Eyes Joined His Smile...(by Michael)


Ella is two years old...and loving every minute of it.


While on the phone this afternoon she conveniently (for her) began singing "Old MacDonald Had A Farm" in the screechiest voice she could muster.  Needless to say I had to apologize to the person on the other end and move myself away from the "serenade".  Of course, there was a smirk underneath the song and a look from daddy that said, "I know what you're doing, little girl."


Earlier in the day she made her independence known by saying "no" throughout the early afternoon and then changing her mind right away...typical behavior for a child her age but nonetheless aggravating...the same smirk and the same look ensued.


In the morning, she tested her daddy right off the bat.  She was basically impossible.  I could feel my blood pressure rising as mornings are already tough for me, as they always have been, without the added stress coming from a demanding little girl.  Luckily, however, both Ella and I caught a break before the ole' blood pressure went haywire.


It came in the form of Henry.


Right about the time my blood pressure had reached its limit as Ella was in hysterics about a baby doll Henry came midway down the stairs and stuck his face through the slats.  I spied him with his pacifier ("Paci") and his little comfort blanket ("Taggie").  I already had Ella in tears over the exchanges we had for the past several minutes and I certainly didn't want Henry to try and manipulate his way into having his Paci downstairs (that's not allowed).  Without hesitation I immediately ordered him and his Paci and Taggie back upstairs.  He went.


I felt bad.  How did I know he was going to try and manipulate me?  Maybe he just wanted to say "good morning".  I looked at Ella, tears streaming down her red face, sitting in the confining chair hooked up to her feed.  My shoulders dropped as I felt the weight of my world rest upon them.  I took a few steps to retrieve a Kleenex for her, wiped her face, looked her straight in the eye, and said, "Daddy will be right back."  She repeated the last two words as she often does.


I went to Henry.  He was sitting on his bed with Taggie and Paci.  I stormed in the room and instantly made a comment about the mess on the floor from the night before; toys, blankets, "stuff"!  He began cleaning up feverishly.  I felt bad again.


I went to the closet and looked at the clothes.  Taking some out for him and Ava I felt a slight touch on my leg.  Henry had come to me when my back was turned and reached out to touch me.


It was a soft touch yet a powerful one.  My shoulders lightened their load as I looked into the eyes of my boy.  His mouth turned slightly up in a smile yet his eyes remained consoling...he said not a word.


I sat down against the wall with my knees propped up and he found his way to me.  He hugged me.  After a few seconds I hugged him back.  He pulled from me and his eyes now joined his smile.


The rest of the day went smoothly.  


Here's to Henry.

Henry taking a nap on Sasa

Tuesday, June 19, 2012

Two Weeks and Counting (by Lindsay)


Note from Michael:  
This post was written by Lindsay (on paper) while in Linden Oaks.  It was given to me on Tuesday (6.19.12) for me to post on Ella's Corner on behalf of Lindsay.  

*************************************


I've been in the Linden Oaks Eating Disorder Treatment Program for two weeks now.  I've been making definite progress in some areas but no so much in others.

I started gaining a little weight over the weekend but then I started losing weight again.  My body is really fighting against itself right now.  Another Ensure Supplement  has been added to my daily meal plan.

I had another EKG done and this time the results were "borderline", which is definitely an improvement from "abnormal"  :)

Then there's the emotional piece.  I've found that it is extremely difficult to disagree with the "Ed" thoughts.  Ed has been such a significant part of my life recently, and quite honestly, I'm terrified to let him go.  He has been my main coping mechanism for SMA and I fear what would happen if he goes away.  

Ed has given me a sense of control as well as has been a major distraction for my mind (and with positive results that I could measure with a scale).  Deep down I know that Ed is dangerous, but I just can't seem to shake those thoughts.  Every so often I get a brief glimpse of the positive aspects of life without Ed, but they are few and far between.

Last week my treatment team suggested that I take a daily medication for anxiety.  The idea is that it will help to push the obsessive Ed thoughts to the background.  It won't get rid of the Ed thoughts completely, but it will help to suppress them.  I started a very low dose of this medication on Friday.  Aside from becoming a very tired (and a little spacey) I haven't noticed any other effects; so we're going to slightly increase the dose today.

My treatment team thinks that I'm making great progress but we're not yet at a point to start thinking about me stepping down to the partial (outpatient) program.  Most importantly we need to get my weight to stabilize going in a positive direction.  I will also need to have another EKG (which will hopefully be normal!).

The team thinks maybe at the end of the week we'll be able to discuss when I might be able to step down to the partial program.  I really hope so because I feel like there is no light at the end of the tunnel.

I miss Michael.  I miss Ava, Henry & Ella.  I miss the rest of my family and my friends.  I want to go home more than anything.  But I'm reminded every single day that I need to be healthy (in more ways than one) for me to go home and truly be "there".

So that's what I'm doing.  As difficult as this is, I'm getting healthy.

Sunday, June 17, 2012

My Kids. My Wife. My God...(by Michael)

Many people wrote to me today wishing me a Happy Father's Day.  They sent encouraging words and let me know how they felt about my fatherhood.  Thank you for that.

The past few Father's Days have been filled with traditional celebrations of the role I play in our family.  Gifts, food, and a general appreciation for my efforts as Daddy.

This year, however, showed me the true meaning of being a father.

I am here to take care of my kids, love my wife, and to be thankful for what I have been given by the grace of God

****************************

Taking Care of  My Kids

We took some time the day before Father's Day to play.  We have a "rice pit" that allows them to sit and feel the awkward yet oddly satisfying feeling of being surrounded entirely be uncooked rice.  They played, they scooped, they dug, they enjoyed.  I added some plastic balls and made a "rice-ball" pit.  They loved every minute of it.


From there we played with shaving cream for an hour.  More fun, more tactile sensations, more enjoyment as only kids can elicit.





She didn't wail.

She whimpered and let some tears flow down her cheeks.

She forgave her Daddy.



Taking her out of her stroller after a walk on Father's Day, her feeding tube still doing its work, I lifted her up after checking for clearance of the tube from any snags that the stroller might present...unfortunately when I lifted her the movement of the upward motion caused the tube to shift slightly, snagging on something--and yes...the g-tube popped right out (this was the second time this has happened since it was placed in her belly).  For the caregiver it's a creepy, horrible feeling because you can feel the tug; and knowing what's about to happen you simply cannot react fast enough to stop it.

Fortunately there were two other adults with me.  We rushed Ella into the house and laid her on the kitchen table.  Her eyes were filled with a mixture of fear and disbelief...probably thinking, "Really, guys...again??"

Yes, again.  On Mother's Day Lindsay lifted her up from a chair and the same thing happened...on Father's Day--Daddy's turn.

We have extra "buttons" so I raced upstairs to get one while my friends held pressure on the open hole in her stomach.  I wrapped Ella in a towel and sped her to the emergency room.  I was there and she was being treated in 15 minutes.  Time is of the essence as the hole can start closing within an hour.  If it starts closing the re-insertion of a new tube gets more complex.

Loving my kids means, to me, that I provide them with all that I can.  I tap into their desire to play, to learn and to explore.  I make mistakes with them.   I do whatever I can to help them through the tough times.

****************************

 Loving My Wife



 Lindsay went to great lengths, I'm sure, to allow me to bring the kids to see her (after the official visiting hours) so we could spend some family time together on Father's Day.  I love her for that..and more.

Lindsay is going through a tough time.  She's a sweet, beautiful woman and she is going through a tough time.  I've had many choices as to how I am to be in relation to her eating disorder.  I am exploring those choices and find myself choosing the ones that show how much I truly care for the woman who sweeps me off my feet each day.  I'm not going to cover up the fact that this is extremely difficult for me...I have never been faced with such a set of circumstances such that I find myself in now; but I can say that the simple phrase that the pastor, who married us, said to us  right before we left the church on the day we were married echoes in my mind.  He told us, "It's not about getting married, it's about being married."  The difference between "getting" something and "being" something is what helps hold us together.  

Lindsay's going through a tough time...I'm proud of my best friend, my one and only, my wife.  I love how much she and our kids love each other.

**************************** 

 The Grace of God

Need I say more??

Thursday, June 14, 2012

Ed (by Lindsay)

Note from Michael:  
This post was written by Lindsay (on paper) while in Linden Oaks.  It was given to me on Thursday (6.14.12) for me to post on Ella's Corner on behalf of Lindsay.  

*************************************

I've been at the inpatient treatment program at Linden Oak for over a week now.  There is no question that this is one of the hardest things I've ever done.

One of the things I've found is that it's impossible for others to truly understand the emotions and behaviors behind an eating disorder unless they have personally experienced it.  I recently read a quote from a book (about eating disorders):

"From the outside looking in, you can't understand it.  From the inside looking out, you can't explain it."
I didn't realize how truly complex eating disorders are.  So many people's natural reaction is, "Just eat." Oh how I wish it were that simple.  If it were, I wouldn't be here struggling every single moment trying to block out Ed.


Yes, Ed.


Ed stands for E.D., or Eating Disorder.  He is a male figure who has been a significant part of my life for the past 6 or 7 months (maybe more).


Ed has caused a lot of physical and emotional pain (and not just for me).  he is controlling and abusive.  But I am extremely attached to him.


One of the first steps in treatment is to try to separate myself from Ed.  To realize that Ed's thoughts and my thoughts are not the same.  Well, it's easier said than done.  I have been so used to Ed telling me what to do and not do, that it seems we have become one.


But it's not true.  And the other day was the first time I recognized one of my thoughts as being Ed's, and not my own.


Ultimately, the goal is to disagree with and disobey Ed.  I feel like I am still a long way from that point.  I still agree with Ed.  And I still wish I could be obey him (obviously I can't while I'm here as we are on a VERY strict meal plan and are monitored 24/7).


But the other day I took a very small (but at the same time a very important) step.


I separated myself from Ed; even if just for a moment.


My Progress Update:


I initially gained a little weight, but I've started to lose weight the past couple of days.  This can sometimes happen and is referred to as "hyper-burn".  Basically my metabolism has slowed down so much from the eating disorder and now that I've been eating consistently, my metabolism has gone into over-drive.


So they need to be more aggressive with my treatment.  Starting tomorrow (6.15.12) they will be increasing my meal plan (again) and adding Ensure supplements to try to get me closer to my target weight range.  


I have had my labs and EKG re-done and my labs are normal; however my EKG is still abnormal.


Right now we (the treatment team and I) are not at a point to be able to discuss the possibility of stepping down to the partial (outpatient) treatment program.


Thank you all SO much for your support, prayers, cards, etc.  It's wonderful to no longer be dealing with this alone.  And also I want to say a HUGE thank you to the many, many people who have been helping Michael & the kids.  It is unbearable being away from them, but I am so incredibly grateful that they are receiving so much loving support.

Monday, June 11, 2012

She Couldn't Have Asked For More...(by Michael)

Ella Sabine Casten--Two Years Old (June 10, 2012)

The "Happy Birthday" song was sung to Ella numerous times throughout the day.  Each time a group of people, or even an individual, serenaded her she watched with curious eyes and a mind that soaked it all in.  The day after her birthday was spent listening to her sing "Happy Birthday" to herself.

The highlight of her day was sitting in a chair in a room that was foreign to her.  She didn't have any straps holding her, she didn't have any machines plugged into her.  She sat surrounded by the people who know her the best; by the one person who knows her intimately~~her mother.



At the end of a long day at the IL FSMA Walk-and-Roll and a fun-filled lunch with Auntie Annie and Uncle Noah, we visited Lindsay at Linden Oaks.  The staff there made an exception (under the orders of the doctors) to let our children into the hospital.  We cannot thank them enough for the opportunity. 

When were escorted into the common area of Lindsay's unit the room was instantly filled with a joy and love that only children can bring.  Lindsay's eyes lit up like never before as her children, who unceasingly adore her, went to her in long-awaited embraces.  Ella "drove" herself to her mommy; who, without missing a beat, unstrapped her youngest from the machine that held her and brought her to herself...mother and child reunited.  

We were escorted to a room where we celebrated Ella's birthday by opening the many presents that were given her throughout the day.  Lindsay's face beamed with delight as Ella, Ava, and Henry fell back into the world of mommy.  My heart stood still in order to capture the moment and savor the feeling that only Lindsay can elicit in me.

Our time together as a family was short but sweet.  Quickly the children fell into their roles that have been established in their short lives thus far...although close, there were no time-outs!

Ella couldn't have asked for a better 2nd birthday.  She was surrounded in many ways by so many people who care for her.  She "rolled" to help herself and others who share her disease; she enjoyed time with loving people who delighted in her presence; she made a few new friends along the way.  And she was able to sit in her mother's lap...a place that was made just for her.






Saturday, June 9, 2012

With Her Hand in Mine...(by Michael)



Sunday, June 10th.

One day away.

Ella's 2nd birthday.

The annual FSMA IL Walk-and-Roll event.

Right before nap Ella and Henry wanted to go for a walk.  I was ready for them to go down for a nap but thought maybe a short walk would be fine.  No strollers.  No bikes.  No dog.  Just us.  Henry wanted to push Ella in her wheelchair and since she was already in it that was no problem.  We quickly left the house and began our 15 minute journey.

Ava held my hand.  Not something she's done in a long time as she usually prefers Lindsay's hand to mine.   We walked.  Pretty much in silence.  Henry concentrating on keeping Ella on the sidewalk as she giggled with delight in being pushed by her older brother; me lost in thought; Ava apparently lost in her own thoughts as well.

Right before the picture above was snapped I began to tell Ava about the Walk-and-Roll event.  I told her that some of us will walk while others will roll.  She replied by saying she was excited to see the other kids "rolling".  I told her we do this to help raise money to give to the doctors so they can help kids with SMA.  She said, "Uh huh."

After the picture was taken we resumed our walk.  Without missing a beat she asked me, "Will mommy be there tomorrow?"

This was the second mention of mommy this day.  Earlier at breakfast Ava said she missed her mommy.  I told her I did too.  The conversation went no further amidst the clean up of breakfast and playing that ensued.

My reply to her question on the walk was a simple, "No". 

Since Gramma is also away (out of town helping with the cousins) Ava keenly stated that there will be two people missing on the walk..."mommy and gramma".

"Our two favorite people." I came back at her.

"Uh huh" she said as she walked beside me, hand still wrapped in mine.

From up ahead Henry said, "Why?  Why are they missing?"

I spoke with clarity as I said, "Gramma is still with Conner and Johnny.  Mommy is still with the doctors." Hoping this would satisfy his curiosity but knowing Henry I was sure he'd press the issue.

Before Henry could interrogate me further Ava chimed in with a level of maturity that astounded me.  She took the conversation into her own hands and offered an explanation to Henry that drew me closer to my eldest.

"Henry," she began, "sometimes we have to say goodbye for a little bit.  When we go to school or play we say goodbye.  Sometimes we just have to say goodbye but we will always come back.  Right Daddy?  You and mommy will never leave us.  Right?"

I followed her lead and joined in saying, "Yes.  Sometimes we have to say goodbye...like when I go to work or mommy goes out shopping or to her book club.  And sometimes adults [grown-ups] say goodbye because they go see the doctor for a while so they can take care of themselves."

"Uh huh" she said picking it up, "because mommies and daddies take care of us."

"Yes" I said, "we do; and sometimes we need to take care of ourselves.  Mommy will be back soon."

"And she'll be the best mommy ever--just like before" added Ava.

"Uh huh." said Henry satisfied with the exchanges.

Ella kept giggling with delight as our conversation turned to less "serious" agendas.  We walked further and Ava spontaneously said, "Daddy.  I love you."

"I love you too, sweetheart"



 **************************************************

You can write to Lindsay at:

Linden Oaks (EDP)
c/o Lindsay Casten
852 West St.
Naperville, IL  60540

You can check The Casten Care Calendar (updated almost daily) by clicking the following:

Link for The Casten Care Calendar

and enter the following information in the appropriate spaces:

    CALENDAR ID      :   115107
    SECURITY CODE :   6639


Thursday, June 7, 2012

Thanks in Advance...(by Michael) (Updated 6.8.12)


Dear Family and friends,

I cannot begin to express how I feel reading all of the emails, Facebook comments and messages, listening to voice mails, and reading the comments on our blog.  So many of you have offered your support in so many different ways.  Thank you.

June is our busiest month of this summer...doctor appointments (for more than just Ella), therapies, Vacation Bible School, fundraisers, and the FSMA Conference.  Needless to say I will need some help doing the job that Lindsay does so well.

I have family that is close and available yet also need the help of others...to that end, Lindsay's father and I sat down this afternoon and took a good hard look at The Casten Calendar.  We found that we certainly could use some extra help around here.

I have created a "Care Calendar" which is an online service specifically designed for situations such as this.  This calendar allows individuals to see when and what kind of help is needed and allows them to sign up for a spot that fits their schedule.  I created the calendar to run for two weeks and will, of course, update it as necessary.

To access The Casten Family's personal Care Calendar click on the following:


or copy and paste this address into your browser:  http://www.carecalendar.org/logon/115107

and enter the following information in the appropriate spaces:

    CALENDAR ID      :   115107
    SECURITY CODE :   6639

If you would like to send Lindsay a note or a card the address is as follows:

Linden Oaks (EDP)
c/o Lindsay Casten
852 West St.
Naperville, IL 60540
I'm proud of Lindsay...she's unlike any other person I've ever known and I love her deeply and dearly...thank you for helping me to help her.

Michael

Wednesday, June 6, 2012

Eating Disorder (by Lindsay)

This is going to be the hardest post I've ever written.  But it needs to be written.


It's not an easy thing to admit to yourself, let alone other people...


I have been struggling with an eating disorder.  


The behaviors started shortly after Ella's diagnosis and were under control for a while.  But then I began to lose control.


I tried to turn it around.  Countless times.  And unfortunately I was never successful.


I've lost a significant amount of weight.  I've become very weak.  And very tired.  It's been hard for me to be a mother, wife, friend, etc.


Some days I feel ok, while others I can barely function.


After admitting to myself a couple weeks ago that I think I might have a problem, I turned to our pastor for guidance.  He helped me take the steps to have an assessment done.


Yesterday I went to Linden Oaks at Edward Hospital (in Naperville, IL).  I was evaluated and had some lab work done and an EKG performed.  It was recommended that I begin their Outpatient Treatment Program immediately.  This program is 6 days a week, 8 hours a day (and usually lasts for at least several weeks, depending on the patient).


So today, I arrived for my first day of the Outpatient Program (and my last...for now).  It turns out that some of my labs were abnormal, my EKG had several abnormalities, and my liver is not functioning properly.


I had no idea it had gotten this bad.


The doctors changed their recommendation to the Inpatient Treatment Program.  I was able to come home tonight to talk with Michael, pack, and set a few things in order.  Tomorrow morning I report to Linden Oaks at 8 am to start my intensive treatment.


Typically the inpatient program lasts at least 1-2 weeks (I will be admitted to the treatment center and will remain there 24/7 during this time).  It will then be followed by at least several weeks of the outpatient program.


The goal of the inpatient treatment will obviously be to get my heart and liver back to normal functioning and also to get me to a point that I feel confident going home in the evenings and not reverting to my old "patterns".


I had no intention of sharing this information with anyone.  I only just told Michael about everything last week (one of the hardest things I have EVER done).  But the truth is, I don't want to feel ashamed or guilty about this disorder.  One of the sayings at the treatment center I heard today was, "Secrets keep you sick," and I completely understand what that means.


But in my extended absence, Michael is going to need help.  He will be on his own with all three kids 24/7 for at least a week or two (and then still 6 days a week after that).  In addition to caring for all three kids, he will be responsible for cooking, cleaning, laundry, errands, taking Ella to therapy, etc. He's going to need help with Ava and Henry, and it will be great for him to get little breaks altogether every once in a while (if possible).  


Also, part of my treatment includes "family therapy" in which Michael is encouraged to attend with me on Mondays.  And Linden Oaks has visiting hours daily that I'd love to see Michael if it's ever possible (and of course, anyone else who'd like to stop by). 


While I'm in the inpatient program, I will not have a cell phone or internet access.  I will not be able to send or receive emails or texts (or be on Facebook, etc.).  So as of tomorrow morning, the only communication I will be able to have is with people inside of the center (and visitors).  


It's going to be hard.  The feelings of incredible guilt and abandonment I feel are unbearable, not to mention the sadness I feel for the upcoming events I will miss (parties, VBS, the FSMA Walk-N-Roll, and especially Ella's 2nd birthday).


It will be tough saying goodbye to the kids tomorrow, not knowing when I will see their beautiful faces again.  


I never intended for this to happen.  It just sort of spiraled out of control.  


But however bad I feel, I don't want to feel ashamed.  I don't want to feel embarrassed.


But I want to get better.  I want to be "me" again.


And tomorrow I think I'm taking a big step in the right direction. 

Tuesday, June 5, 2012

Stand Tall & Shave?...(by Michael)

Relaxing after a hard's day work

I had the pleasure of spending the day with Ella's therapists.  The picture above was taken toward the end of the day.  Ella worked hard this day.  She reaped the benefits of her work, including being tired--a good tired, as well as spending some quality down time on the deck.


Early in the morning Ella worked on standing.  Her Physical Therapist had her attempt to bear weight without any devices.  Ella can do this in the pool for very brief moments..out of the pool, however, gravity has its own agenda.


Ella vs. Gravity  


Moments later, with the help of her knee immobilizers, she stands tall.  The therapist keenly had many photos of Ella taken in several different standing positions; with and without the braces so we can have a running record of her progress as well as documenting her needs.


"Take that" Gravity

Later in the day, after waking from a delightful nap, Ella was visited by her Occupational Therapist.  The order of the day was to help her extend all of her fingers (as opposed to using only her thumb and index fingers to manipulate objects)...shaving cream played a fun role in the therapy and all joined in the pleasures! 

Shaving cream fun


Knowing that there are people out there with expertise, insight, and intuition to help Ella be as much as she was meant to be is comforting to us.  It's indescribable to relate how important other people are in our lives...where would we be without the many?? 

Shaving Cream Video