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Sunday, February 27, 2011

Weekends are for L.O.V.E.

There are so many things I should be doing. Grading papers, entering grades, cleaning, cooking, packing for tomorrow.... the list goes on. However, this past weekend was so nice - I just need some time to relish in the great weather and wonderful time spent with my babies.  They will only be babies for so long.  This post is super pic heavy - so enjoy all the fun we had.

Saturday mornings really are special around this house. We sleep in late, eat breakfast together, and hang out in our pajama's for as long as possible.

 Addison LOVES to hang out with Alexander. Wherever he is... she is close by.
 She does this on her own. She kisses him, holds his hand, puts her arms around him. She is a great protector for him.
Andrew realized that everyone else was having fun on the little couch and decided to make an Alexander Sandwich!

Sundays take on a life of their own.  We try to attend church every Sunday.  We succeed fairly often, but sometimes trips, illness, or just plain exhaustion keep us away.  Our church now has 2 services, so the early service fits our schedule perfectly - we are done by 9:30!  Thank goodness it is starting to warm up - we can finally spend some time OUTSIDE!!! This afternoon after naps we headed out to the park.


 Ever wonder what an 8 lb nine month old looks like in a swing?  Well... here it is:

 We took some blankets in expectation that he might not quite "fit" in the swing.  That was good thinking!

 If you don't know Alexander.... he is very content here. Even though his mouth is not in a total smile, you can see the edges of it starting to turn up.

 He really did love the swing. His sister and brother were on the big swings next to him - and he smiling as he kept going up and down with them. Unfortunately - every picture with a true smile is also blurry.... Such is life.

 So Alexander's neck was starting to develop this HUGE amount of tightness in his left side. I used some Kenesio tape on his right side to help straighten it out... hmmm.... now I'm going to have to tape him on both sides because he is turning to the right side in every one of these pictures!!

 This is Alexander's first time in the stroller where he can see out.  All the other times he has been in the stroller - he has been in his car seat - so the only person he can really see is me.  As you can tell - Addison is always close by her "little buddy."

 All mothers of multiples know.... a RARE picture of both in the same camera frame!

 Andrew is getting so big. He has very little fear - and here he was extremely proud he could hold on "all by myself!"

 I love this girl. She is beautiful inside and out.

 Ok. A rare moment of fear.

 One final picture - exiting the slide. This face pretty much sums up the day.

What a wonderful evening - to end a wonderful weekend. Spring is in the air and we are all ready for it!

Saturday, February 26, 2011

Walking a fine Line

Everyday I must walk a fine line between contentment and hope. Less than 24 hours after I wrote the Happy Eyes post, I found myself teetering on the edge of a cliff I didn't want to fall off of.  You see, every day I must find this fine balance between being content and having hope.  Let's start with the Hope...
Several of Alexander's friends are having these HUGE developmental spurts.  When I say friends, I don't mean people we "know" from the Internet.  I mean people I have actually met, socialize with, and call on the phone.  One of our friends is walking unassisted (YEAH!), one is having an explosion of new words (YEAH!), one is having a growth spurt and suddenly eating lots of "real food" (YEAH!), and finally.... one of our friends is doing so much cool stuff - it is a little of everything - walking, eating, etc. Once again - (YEAH!) And these friends are not alone - Alexander himself is having a growth spurt, rolling some, sitting some, cooing some, giggling some. It gives me HOPE.  Hope that Alexander will walk.  Hope that Alexander will talk. Hope that Alexander will eat table food with us all.
If you only want to hear the positive part of this - STOP HERE.

Now, onto the contentment part.  There are lots of kids with WHS who do not do those things.  And I swear to love Alexander - no matter what. No matter what.  I don't want to wrap my self so much in the hope that I lose the contentment... I believe I have seen people do that.  So... What events happened specifically yesterday that threw me over the edge? *sigh* my own curiosity that killed the cat.

There is a blog started by a WHS parent. I like the blog and have been tossing around putting some of our posts up there. However, I am not 100% sold because of 1 thing.  I don't care for the emphasis placed on the mortality rate found in the information section.  Much of that research is outdated, and I knew I have read different numbers.  I opened up an article that I thought was going to give me better statistics, and it did.  There is also a lot of controversy about weather or not deletion size has anything to do with development, etc. In this research article I found, the overall mortality rate was much less, but they also looked at deletion size and mortality rate.  The article stated that the mortality rate rose significantly with deletions more than 15.3.  FYI.... Alexander's deletion is 15.32.  *sigh* I should have stopped there. I should have turned off my computer, gotten a Snicker's bar, and walked away.  But at this doesn't happen in my world. I now needed to know the deletion size of all of our friends.  I browsed their blogs and started researching the newest information about deletion size and development.  I pulled out a CD with biographical information on it.  I scoured the information looking for deletion size and development. (As if I could figure out something scientists and geneticists could not yet put their finger on.) I even went so far as to open up the file with information on children who have gone on to be with God - to look at their deletion. I couldn't stop.

This is because I wanted to determine how much Hope I should put into my mix of happiness. I wanted to also be able to determine how much contentment I should add into my happiness mix.  A good friend kept trying to stop me. She listened, then reminded me to stop.  She listened, then encouraged me to stop.  Finally - she listened as I told her I was done.  And I am done.  The research is all put away.  The hope is still there. The contentment is still there. I was afraid that I would be filled with so much "hope" - that I wouldn't be able to be content with whatever Alexander achieves.

I wasn't sure if I should post this - but God has a way of guiding you in the right direction.  Just this morning, another mom was asking questions ... so similar to mine. I believe this post might ring a chord with many others - so I wrote it.  We are ok. I am still content. I still have hope. I still walk a fine line.

Thursday, February 24, 2011

Happy Eyes

I already knew the title of this blog before I started writing, but I must first take a side note.  I must tell you about someone really special.
You see... we went to a high school that is pretty big by any standards.  Our graduating class hovered somewhere around 600 and I'm ashamed to say there are people I graduated with that I don't know. There were, of course, groups of people that flocked together - as in any social situation. There were the very smart kids, the very athletic, the very musical, the very everything. ... and I was probably "fair" almost everything.  I wasn't a super jock, but could hold my own on a softball field.  I wasn't super smart, but took CP and AP classes.  I wasn't super good... nor was I super bad.  I was just sort of .... all around ok. I had plenty of friends and I found happiness almost every day at school. 
Fast forward... college. after college. twins. Alexander. All of these changes have brought people into and out of my life. And some people have entered back into my life.  One particular person has managed to do on almost every occasion exactly what I have asked.... with no hesitation in the last 9 months.  I called her and said, "Please take pictures of my new baby." She graciously did. "Please take pictures of our entire family.... who knows how long we will all be together." She came to my house and chased my kids around. "Please help me make a nice Christmas Card to send out to all of those who have supported us" ... again.. She came to my home and somehow managed to capture the spirit of all my precious babies.  A few days ago I called her again.  She can't even possibly know how much she means in my heart.  How much I value our friendship or her undying support for my family.  I know if I asked her to pray for my family, she would do so without hesitation.  I just know.  She is an amazing person and I'm so happy that I can call Liz Wilson my friend.  So.... onto why I called Liz....

Someone commented on the video I made about What it was like to be the parent of a child with special needs.  That comment was very sweet and I took a few moments to watch the video. (Something I haven't done in a long while.)  I was watching it and thinking of all the emotions that were flowing through me those early months.  I was also thinking of how much I have changed.  I saw a few phrases flash by on the video: "Can people see the fear on my face?" "Can people see the sadness in my eyes?"
Those words have stuck with me for over a week now.... Because they are no longer true.  So I called Liz.  I asked her to take a few pictures of my eyes.  I told her my heart was happy and I needed to put pictures of it - because you could clearly see the pain in my eyes before. So here they are. Beautiful pictures.... of happy eyes.  And one happy momma.  Thank you Liz. 

I am Happy.

I told you... Happy Eyes

She really did capture my heart. (Plus, I think her daughter was telling jokes)

I am content.

Thanks again Liz.... But if you watch the video - you will see ... fear / grief / pain. After that, come back here and see JOY / HOPE / LOVE.

Tuesday, February 22, 2011

You've Got to Stand for Something... or You Will Fall for Anything.....

This is the line from a country song. It keeps playing over and over in my mind. It is this itch that I cannot scratch. And the problem is... scratching it ... stretches the boundaries of what I'm comfortable with. But.... this is supposed to be "something for me" ... right?  So let's start.

First and foremost - I LOVE teaching. When I say love... I mean love it. I really can't remember ever wanting to do anything else.  From the time I was a small child - I can remember "teaching" my dolls.  I used to bring home the extra papers in elementary school (the ones the teacher was going to throw out) and use them for my brother, neighbors, or ... again, dolls.  I graded their papers, I re-taught.  I loved every minute of it.  I went to college knowing I wanted to be a teacher. AND - every day I walk out my door happy that I am going to my job... a teacher. I love my students. every last one of them. and I think it shows. My students are respectful to me (for the most part... they are still teenagers) .... I get a great joy from my profession.  This is important for you to know because ... I can't stop this feeling that I might be experiencing this "calling" to do something more.  I do not believe this "calling" is to the ministry... but a similar feeling. Like God is guiding me to be more. To do more.  But what? It might be as simple as doing something outside of school - or as complex as a career change.

So... while you read the rest of this post, can you please picture me as something different than a teacher? What would that be? I'm really interested - because - although I feel called... the only thing I can put my finger on is one word: Altruism.  But that could take so many different forms - I don't know what to make of it.

Back to the title of my post. It is bizarre - because I have spent my whole teaching career showing students there are 2 sides to every story. And there are. If there was only one logical side... then there would be nothing to argue about. But - everyone should know where they stand. Everyone should stand for something.

I believe in the power of Prayer.
I believe in God, Jesus, and the Holy Spirit. I believe they all exist and that I will make it to Heaven because of this faith.
I believe in the right for all people to have their own opinions - and to be able to speak them.... no matter what they are. If you don't like them.. don't listen.
I believe in the right to life for all people. I believe in the power of life. I respect my friends who have other values - you are still my friends. But.... I would love to see more adoption in our world and less .... abortion. (there I said it.) This is coming from someone who has watched some very close people in my life struggle to have families and long for children of their own.  This is also coming from a mommy of a child with special needs... who wouldn't have changed a thing.
I believe in the right to love your soul mate.  I know - to some this may smack in the face of my church's values. But.... I will allow God to judge as he sees fit.  For now, I see too many examples of love that is not recognized and marriages of convenience that are given much more respect.  I'm a big proponent of compromise, so if your religion has strict marital laws... why can't your church abide by them. But if our government separates church and state... then the state could have different standards.  Example: I can stay at home and raise my family because I can go on my husband's insurance.  Other families cannot.
I believe in the right for all people to have health care. This is coming from someone who has a child who would not be here without health insurance.  My children have each cost over a million dollars... that's each. The twins were in the NICU for 21 days and Alexander... well that is self explanatory.
I believe that all people should be treated with respect and dignity. In all situations.
I believe that children should be taught discipline .... that a parent should not be a friend, but a parent.
I believe that the best thing in life you can ever be ... is a good person.

There. If I am fired for posting my beliefs... I will deal with the ramifications. (Please don't let me get fired!) However, having said that.... I feel like we have been blessed with the gift of life for this precious child. I feel like I am being changed every day.  When people - old and young (as in students) come up to me and tel me they find our story inspiring... I wonder if I am really doing what I am supposed to be doing.  When someone comes to me and says, "I need to talk to you. I feel like you will understand." ... and I have to refer them to another person because that is not my role - it is starting to bother me. I feel the need to ... do something ... to reach more people. To help more people.
I thought this blog would scratch that itch. But .... it is not quite.

So.... if you didn't see me as a teacher - what would I be?

Monday, February 21, 2011

Stottlemyer Chairs

One of my ancestors was named Christopher Columbus Stottlemyer. No lie. Who would name their child Christopher Columbus (Stottlemyer)? Well, old C.C.S. did something pretty amazing... he made chairs. These chairs are pretty special - to my family, but also collectors items.  The chairs are not signed, so sometimes it is difficult to determine if you are looking at a Stottlemyer chair or a fake.  My Grandfather and Grandmother set out to "collect" Stottlemyer chairs.  They handed down these chairs to their children.  My dad has become somewhat of an expert on Stottlemyer chairs.  Also, he loves to work in his shop - wood working.  He found a child's size Stottlemyer rocker and decided to build replicas of it for his grandchildren.  Here are the first two - for Andrew and Addison:

The Chairs.... Absolutely Beautiful

Addison Rocking on her Chair

Andrew Chillin' with his chair

Everything is better in Two's :)

Addison thanking Pappy for her new rocking chair.

Andrew thanks Pappy too....

Everyone wants to hold Alexander on their chair.

But they don't realize that "Little Buddy" can do it himself
*love love love*

All the Kids and Pappy
Pappy's littlest buddy

Friday, February 18, 2011


Ahhhh... what a beautiful day. It was in the 60's here. My students are amazing. Really really amazing. I listened to my music on the way to and from school - with the windows down. Then tonight - we had great friends over. My friend Jenn and her incredible children. The big E was just what Ray needed.... a dose of total sports. And Miss K is Addison's new best friend. In fact, she taught Addison how to "scoot" across the floor.  Miss K is also near and dear to our heart because she also has WHS (what Alexander has). Jenn was the first person I talked to who had a child with it. She was the first person I met and Miss K was the first child I met. What they did to heal my heart was more than amazing - but you know what? When I used to think of things - I used to look at Miss K and think, "Please let Alexander hit those goals." - Like eating A TON and scooting and smiling and .... *love, love, love* everything. But tonight - as I'm sitting here with this great family, I'm really not even thinking about WHS. Jenn and I are "gossiping" about work and men and kids and everything under the sun. I'm looking at that beautiful girl and thinking .... she is so beautiful. NOT - she is beautiful even though she has WHS. Do you know what I mean? She's just amazing. She was hilarious.  It was a wonderful day. It was a wonderful night. Jenn is a great friend. Not a great person to know because of this weird thing we share.... just a great friend. I am content.

ps. It would have been maybe a little better if I had taken ONE stinking photo to put with this post :)  But other than that, I am content. :)

Monday, February 14, 2011

Follow the LOVE - out into public

Happy Valentines Day!
I didn't mean to post such a depressing blog (Life insurance) on such a day filled with love.... oops! So here is the other exciting thing happening:
 I think the blog needs to be public.
Let me explain why:
1st - I'm out of room to add people. If you make it private, you can only invite 100 people to read it ... and we are maxed out. Because you love us!!! And we love you too!!! How awesome is that?!?!? I'm totally amazed because I thought that number was plenty high - we wouldn't have to worry about reaching it forever!
2nd - and almost equally important.......I had some explaining to do. To my students. You see - the reason I made this blog private is to have some separation between my students, their parents, and my private life. However.... then came last Tuesday.

 I was in a class filled with students when the phone rang. The students heard me say "hello."  They then heard the panic in my voice when I repeated Michelle (our nurse's) name over and over as I realized Alexander was so severe she couldn't talk to me. They heard me shout, "call 911!"  "I'm on my way!"  They saw me grab my purse and leave everything else and run out the door. I left a Nikon camera sit out on my desk. I left the computer open. I left my jacket..... and I ran out of the building.

No matter what my issues were with privacy - these students deserved to know how things were. I know they care - you can see it on their faces. So I told them about Alexander's seizure and our stay in Hershey.  I asked them if they had questions.... and, believe it or not, they did. Heartfelt questions - like

"Is Alexander still doing the same things he was before the seizure? Are we adjusting his medicine? How are the twins with what goes on? and... How do you deal with it all?"

This last question was something I recently blogged about - so I decided in the spur of the moment - to read to them my blog post from Monday.  I omitted a few phrases but basically read them my fears. I then put my blog post from Wednesday on the board.  I was afraid to read it out loud... that I might cry. In fact, several students did cry. Many of my students came to see me later in the day to tell me they find our story inspiring. I don't strive to be inspiring. I strive to be inspired. There are many people who inspire me... I feel like I'm just muddling through.
BUT..... What if our story of loving and living in the times of plenty and the times of need does inspire someone? I believe God will lead me in the right direction. No.. I don't want students to read what is on here - but if they do... is it the end of the world?  Maybe it would have been for a reason?  Maybe they were struggling too and needed some reassurance that even the most "put together" people still have doubts and fears. 

So..... after much internal debate.... I'm going public again. with my private thoughts. Because even my most private thoughts are not all that bad and I feel this is the right thing to do.

Besides - We've reached our limit on Blogger Readers, but we have not reached our limit on LOVE to share. 
We love you all!

Life Insurance

So... our lives have changed in a million ways.  There are huge differences and... subtle differences.  Here is one - our life insurance. You see - I'm about to bust out some real numbers to give you a sense of what I'm talking about.  When Ray and I had the twins, we knew we needed to put some things into place to protect their future. We took out a life insurance policy as part of that plan. Our life insurance was term - for 20 years - and it was an "either / or" policy.  What this meant was.... If Raymond passed, it would pay $250,000 to me or if I passed it would pay out to Raymond.  Our thinking was.... this would be enough money to pay off all our debt and allow the other parent to continue to work and provide the daily living expenses for the children.  IF something happened to us both - the policy would pay out twice and that should cover our children's needs as they grew up.  This sounds like such a simple plan, right? Well.... now we have to think differently. Now we think in terms of an inheritance.  Before - our plan was to take care of our children's needs... but if something happened to one of us after the term was over - our hope was that we could leave an inheritance - but if not... our children should be able to take care of themselves.
Our lives are different now. Not better or worse - just different. We must provide an inheritance for Alexander. It must be put into a trust for him so he can still qualify for state and government benefits. This fund will be run by executors but will be there to help provide Alexander with the standard of living we expect for all of our children.  What if Alexander loves our house and wants to stay in it? Can we make that wish of his possible? There are so many variances on what could happen in the future - but we plan for all of our children to greatly outlive us. We plan to assist them in any way possible. We are planning for Alexander's future. So.... we are doubling? tripling? our life insurance policy - because it now has a different function. It must provide for our children until they are able to provide for themselves... and for Alexander - this will mean leaving an inheritance for him. It is so weird to say. To think about. I know a lot of my friends are in the same boat. This is just one of the small things we have shifted our perspective on over the last year.

Wednesday, February 9, 2011

Lifted Up...

2 Days ago I wrote a blog post. About moms who have children in the hospital.  About my fears for Alexander - and how he was not even in the hospital.  Alexander was not sick and I was worried... when the time comes and I am tested - will I be able to be strong for my husband and family?  Will I measure up to the standard people seem to attach to us on a regular basis? "Kristen and Ray are strong parents."  Were we?  Less than 24 hours later we found ourself in Hershey Medical Center.... and I learned something. I can do this.  Ray and I are strong parents. You know how moms do it? Now, I can tell you.

Alexander is a strong baby. The strongest baby I've ever known.  He is strong because he is lifted up by Raymond and I.

Raymond and I are strong because we are lifted up by our friends, families, co-workers, ... the list goes on.  I fee like I'm at the top of a pyramid holding Alexander. And the reason I'm so strong is because of the people who hold us up.

And the people who hold us up are supported by God. By our churches. By prayer chains and friends of friends - and the list goes on and on....

You see - I am not this amazingly strong momma.... I am an amazingly blessed person:
Yesterday by Facebook:
 "please pray. life lion to hershey. seizure for 45 minutes"
53 comments of prayer and reassurance
"we are checked in at Hershey Med Center for the night. Alexander is fasting to check his sugar levels. Hopefully tomorrow we will be bustin' out of here!"
7 specific comments about this
"If you are following the Alexander update - blood sugar is 35 and dropping fast. Bad news for team Mowery. Fast over. Now to rush feed before another seizure."
42 prayers. 42 messages of hope.
"My sweet baby. Life shouldn't be so hard so early. ♥"
26 comments on a photo of Alexander resting
"Alexander was stable all night and I just found out our "roomate" is in here because she has the flu. Momma bear is stepping into action and we are busting out of here today. We will leave this room one way or the other."
23 comments to this.... support encouragement..... love
"update - still here. fasting. in a private room."
21 prayers of thanksgiving for the private room
and over 30 private messages and posts of encouragement

Alexander has a page we use to connect with other parents of Wolf Hirschhorn Families.  It is a nice way for us to seperate our world into the WHS and the other parts.  There have been close to 50 messages of support and love, mostly from people who have never met us - but understand our struggles.

This list doesn't even begin to touch on the texts, e-mails, phone calls, and visits we have received.  How can we not be strong when we have this base of loving arms holding us up?

Monday, February 7, 2011

Slipping into the Abyss

No. I'm not having a breakdown. No. This is not a cry for help. But... when I started this blog I said it was going to be for me... then I started reading other people's blogs - and they were so ... happy. They were so day to day things. I sort of lost my way. I stopped talking about what was in my heart and began talking about what everyone wanted me to. So here is the real deal.

I'm scared to death. There are about a million reasons why. Alexander is doing amazingly well - and I'm still scared to death. And it pisses me off. Alexander is eating orally for about a week now... almost everything orally. He is doing well with his therapy. He is holding his head up. He is sitting well. And I smile and tell everyone how awesome it all is. AND IT IS. But.....

So why am I dying inside? Why am I so scared? Why am I so far from God and pretending to walk beside him? It is winter. Everywhere around me is sickness.  I have this great support group of friends who all have kids with 4 p-.  They post their children's triumphs and strugges.  Everyday I offer support and pray for their children. Alexander has escaped the hospital this winter (so far... please... I'm praying) - but so many of his friends have not.  They are sick. They are having seizures. They are regressing. They are not progressing. Those mommas hold their heads up high. Those mommas encourage.  Those mommas sit by the bedside and pray.  And I cannot. I am excited because Alexander is making such great progress... but what happens when he does not? What happens when he really can't bear weight on his legs? What happens??? What happens in a few years? When I look at the older chidren - please don't hate me, but I'm scared. I'm scared because everyone is so content.... Everyone talks about how blessed they are.

I feel blessed because Alexander was given to me. I feel blessed because I look into his face and feel love.  I feel blessed because I can cuddle him. He is still my baby.  But... how long can one have a newborn before they yearn for a toddler? How long can one have a toddler before they yearn for a child? Will I feel blessed in 5 years like those other mothers? Am I really that strong? Do I really walk that closely with God?

*sigh* I don't know if I should laugh or cry. I'm afraid that my feelings of love and satisfaction are connected to Alexander's progress.  I feel such pride because he is moving through this world and slowly mastering skills. Please, Lord, allow me to be contented with my son - no matter what he is able to achieve. Let me find it in my heart to be like the mothers I know. I thought I was past this part. I'm not grieving that Alexander has 4 p- .... it is something different. I'm scared for our future. I'm scared because I still just cannot turn it over to God. I know that is wrong. but... I can't change what is in my heart. And now you all know. I'm not a fake. I'm just me. with real fears. .... A little something for me.

Tuesday, February 1, 2011

A day in the life - through phrases...

The most random stuff happens in our life. The most random things enter/exit my mouth.. So today's post is a day in our life through phrases that I've said. All in the course of 1 day.
"Yes, Alexander ate... at 2AM when he woke up screaming and I fed him."
"So this is how you get the great parking spot... you get to the hospital at 5am."
"Yup! I know he is small for a nine month old and Nope! we are not staying because of that."
"What? We are going to put the basketball net up in the living room?"
"If you yell Basketball that does not give you the right to pass the ball to Alexander!"
"I'm already stressed out... I think I'm going to potty train the kids when they wake up from their nap."
"Oooohhhh... I think you are peeing down my shirt."
"Hmmmm.... I just sat in a wet spot. Yep. There's another one. I'm covered in pee."
"Seriously - are her pants 'drooping?' I think she just took a huge smack in her pants!"
"I'm never going to run one of those Facebook programs that tells you what words you use the most... I bet mine spits out 'Poop.'"
"I'm going to have to put on a maternity shirt tomorrow morning because of all the crap I've eaten."
Just a day in the life :)