Letter

The Birthday that Wasn’t Supposed to Happen

May 7, 2012 By Kristen 34 Comments

Dear Alexander,

Tonight I kissed you and wished you Happy “Almost Birthday.” Tomorrow you will wake up and be a different part of a statistic. Tomorrow you will join the 66 percent of children with Wolf Hirschhorn Syndrome who thrive beyond age 2.

I wonder if other mothers think like this? I wonder if I am the only one? Who has been holding my breath to pass this milestone?

I’m not in denial. I know that “turning 2” won’t suddenly stop the seizures, or doctor visits, or mean you are never sick. I know that a day doesn’t mean the end of our medically fragile world.

I also remember those first days in the hospital. I wonder if I will ever forget those cruel words from the doctors? They still cut so deep – they literally make me catch my breath and clutch my heart. I wonder how many times those words have fuelled us to push on to this point?

You are my fighter baby. So many times… you have fought like no one I’ve ever known. You make me proud to be your Mommy. And it was with pride that we celebrated the birthday you were never supposed to have – with our friends and family.

We forgot the tears of the past two years. We forgot the fears. The frustrations. The medicines. The everything. Instead…we had cake and ice cream and hamburgers and hotdogs and laughs. And we loved you. It wasn’t a “small wedding” like your first birthday. Grandparents, Uncles and Aunts, cousins, and a few friends. To fill our home with love.

Sweet Baby. My heart over flows with love for you. Every. Single. Day. Keep fighting. I promise – I will be here fighting with you.

Happy Birthday. xo

Filed Under: Uncategorized Tagged With: Letter, We've Got A Reason to Celebrate

It’s Not Cool to be Gay

February 28, 2012 By Kristen 36 Comments

This isn’t the post you think it is. Some people will love this post. Some people will hate it. I’m ok with that.

Some people will disagree with my opinion. I’m ok with that too. Just please remember that we all are entitled to our own opinions. And around here – we respect each other.

Another Letter… this time to former students.

I want them to know I am proud of them.

I watched you grow up. I was there… watching as you turned from boys into men. I was there, watching you navigate the trials of high school. I watched you make friends and lose some along the way. I watched you mature and develop your own opinions of life. I was proud of you then.

Now, as we are more “equal” than not, I watch you in a different light. You are older, but in all fairness, so am I. We are not quite peers, but almost. We’ve kept in touch, and I’ve watched you “grow into yourselves.” This has not always been easy. My former role was to help you through your struggles. Stand up to the bullies. Encourage you to be original. My role now is more passive. A quick note to check in. A “like” on a Facebook status. Offer an encouraging word when we see each other. My feelings are the same. I am proud of you.

It is not easy being gay. You have hurdles I can’t even begin to imagine. Every small step… is celebrated. I watched, in silence, as you have – each in your own right – become open about your sexuality and become activists in your own right. It is not cool to be the kid on the outside. I have watched, in silence, as people have written words that must hurt. I have watched, in silence, as people have shifted their alliances around. I have watched – you stand firm. I am so proud.

It makes no difference to me if you are gay or not. That is not really what this post is about. It matters that you have the ability to stand tall. Even when what you are doing is not the “cool” thing to do. Even when people remind you that you are not yet accepted by all… You. Are. Just. You.

You make me very proud. Those who don’t care what is cool. Those who stand tall. Very Proud…

Thanks Shell… For the chance to write the post of my heart.

Filed Under: Uncategorized Tagged With: I've Got an Opinion on Everything, Letter

I am So Sorry.. The Letter to the Mother of my Children

January 17, 2012 By Kristen 30 Comments

Dear Brooke,

I don’t really know what to say, so I’m going to ink it in permanent love for you and the twins to read as often as you want.

I’m sorry.

In the attempt to put my life and my family back together… I’m taking my children away from you. And they love you.

Every night, when we say our prayers, we pray for Mommy and Daddy and Andrew and Addison and Alexander… and then “Brookey” is the very next word. Along with your husband and children. They love you like no other. I know I carried them in my womb and gave birth to them, but since they have been 9 months old – they have seen you 40 hours a week. Every morning they are excited to go to your house. Every day they know they will have an adventure with you. You kiss their boo boos. You hug them tight. You give them the extra attention they need when we are gone for extended time with Alexander.

I know we are still going to get together once a week. I know you support me in my decision to stay home. I know if and when I return to teaching – you would take them back in a heartbeat… but for now – we both know it is going to be different.

What if I don’t live up to you? What if I’m not as good of a mother as you are? What if I don’t have the patience you have? Or the creative ideas you have? Or… anything you have.

Being a MOM is not just about who “birthed” you. It is about who loved you.

Andrew and Addison – you are blessed with two Mommies. Because we both love you. And, from my heart of hearts – please know that I will do my best to fill the shoes of your “not just a babysitter” – other Mother.

Brooke, I never wanted to break your heart. And you are such a good friend, I know you will never tell me if it is even cracked. But I love you. And I inspire to be just like you.

Love, Me.

Thanks, Shell… for letting me link up

Filed Under: Uncategorized Tagged With: Changes, fears, Letter, Life as a SAHM

No! No! No!

January 12, 2012 By Kristen 3 Comments

I feel like a child. Yelling “No!” Because I made a childish mistake. I passed judgment on another woman. And I should. not. have.

I’ve posted on not judging how many times?

I’ve posted funny photos of my kids dressing up. YES… sometimes Andrew was in a dress. He MIGHT need therapy someday.

I’ve posted photos of Alexander in the hospital. YES… he might need therapy too. But I want people to remember what we fight for. (And… I just added that little bit during my “edit before post time” – And I shouldn’t have had to.)

I’ve posted things about Addison and her “gawky” years. Ok… She is definitely going to need therapy.

We all do. In our own little way. We all put pictures, tell stories, weave our tale into our blog. It is our platform. Our piece of heaven. Our little slice… to be cut the way we see fit.

Now – that woman is being attacked. Personally…. like – all over the internet.

Do I think this little blog ignited a firestorm? No. I’m not delusional enough to think that many people read my blog. (Plus – I can see the stats. Smile ) But… I need to own the fact that my blog has added to it.

In 2 weeks I’m getting a chance to guest post. On a blog much bigger than mine. I’m going all out. I’m talking about the one thing I don’t talk about here. Why? Because I can. Because there is a little freedom that goes along with being a guest poster. You can open a little more. Because I want to write something worthy of being honored on that blog. Because I don’t want to be vanilla. I want to be Raspberry. And not everyone loves Raspberry. … but those who do – ask for it all year long.

Cut a Mommy a break. Her kids sometimes pluck her nerves. You know what? So do mine.

Finally – I’m going to leave you all with a confession. Are you ready to hear it?

Right now. Alexander grinds his teeth. He giggles and strokes my face. He “yells” at the top of his lungs when we don’t give him enough attention. It is adorable. (Well… not the teeth grinding – but…)

It is adorable because he only weighs 11 lbs and is so cute.

What if he still does those things when he is 20? What if I am embarrassed to take my child for groceries because he yells at the top of his lungs? If you think those thoughts never cross my mind – you are wrong. I push them away… but they are still there.

Does this make me any less of a mom than before? Or less loving than before? I say “NO.” And… I would tell anyone to walk a mile in my shoes before they said “Yes.”

And… neither is any other mom. We all deal with life as it comes to us – in one shape or another.

End of Soapbox. If you want to read the other two posts – they are HERE and HERE. But, if you comment… out of respect for Mommies everywhere, please say, “I agree (or disagree) with this point of view (and anything else…) , but I respect you as a Mommy for saying what you think.”

Filed Under: Uncategorized Tagged With: Embarrassing, I've Got an Opinion on Everything, In the Online World, Letter, Misunderstanding, Parenting

Once Upon a Time, I called a Mommy Out

January 11, 2012 By Kristen 5 Comments

Earlier TODAY, I called out another Mom. Because she said something I wouldn’t have said. Really… because she chose words I wouldn’t have chosen.

And then a lot of other Mommies agreed with me. And I felt good that I might have caused a ripple of good to spread around this world.

And then this Mommy posted her two cents. And I felt bad because – she’s human and I’ve done a lot of stuff I will probably have to explain later. Plus… turns out we have a lot more in common than it seems.

And then one of my In Real Life Besties told me of a story when her mom called her a B*&%h and it was true. And I remembered this time I called my mom one – and she left the bathroom door open on me while I was taking a bath. To teach me a lesson not to call her that anymore.

Truth is – from age … um 9? until um… (how old am I now?) 32- I was a complete B*&%&*. At least during the hormonal years. And all of my pregnancies. And Post Partum. Which pretty much takes us to today.

And then… as if to make sure I learned my lesson – One of the people in my house who knows not to take a big smack in their pants …. did. Karma, baby, Karma.

I believe I have learned my lesson.

But… Alexander has learned a new trick. Want to see? I know you do. So it all ends well.

The video is super short because it looks like I’m at a guillotine.. and that’s just not my best look.- I linked both posts to Shell – PYHO.

Filed Under: Uncategorized Tagged With: Embarrassing, I've Got an Opinion on Everything, In the Online World, Letter, Misunderstanding, Parenting

Didn’t You Know I Love You Too?

November 16, 2011 By Kristen 21 Comments

In case you haven’t been following along… Here’s what we’ve been up to the last week or so…
seizure
hospital
fights with doctors
blah blah blah
home
love
back to normal
blah blah blah.
family time
awesome students
fun lessons
blah blah blah
Got it? That’s pretty much it in a nutshell. (Throw in a few shin splints and barely runs)

But that is not what is on my heart. My heart has been focused on what I saw last week.

The look in my son’s eyes. The look in Andrew’s eyes.

Andrew has been a wreck this past week. He’s kicked something or someone every day…. repeatedly. He’s acted out, he’s back talked, he’s hit, and he’s bullied. He has taken the most simple activities and turned them into show downs between us. He will defy me just to defy me. If I say, “let’s go take a bath,” he refuses; but If I say, “fine. We won’t take a bath,” he will run to the tub instead.

It isn’t Andrew. It isn’t his fault. This post isn’t really about him lashing out.

It is about the fruition of my “Mommy Gut Fears.”

I knew this day would come, I just prayed it would take longer to get here. I knew the day would arrive when the twins would put together Alexander and our absences. It happened last week. I saw it on Andrew’s face when I walked out of the store and Alexander was having a seizure. From there, our ‘emergency routine’ was enacted. An aunt was called. The twins were taken care of. They spent the night away from us. They didn’t return to us for many days.

He put it together. He always was a bright kid…

What am I to do now? Now that he knows… in the way that a three – year – old “knows?” That Alexander has needs and sometimes those needs get put first. *sigh*

He doesn’t understand the difference between life threatening needs and normal life “wants.” He shouldn’t be expected to. He is 3. But… it doesn’t stop the fact that he feels… (so many words come here that I can’t even begin to write them all.)

I wonder if a person can’t understand the true magnitude of a mother’s love until you have children yourself? But really….
I wonder if a person can’t fully understand until they’ve had more than one child? Please allow me to explain – I’m not trying to minimize the motherly feelings of anyone who has one child.

I remember when a good friend of mine was pregnant. She was already a mother and … in love with her daughter. I remember asking her if she worried that she would love this baby as much as her daughter. She said, “I know I will… but I honestly don’t know how I will.”

She wasn’t alone. When I was pregnant with Alexander, even though I had two children already, I remember thinking… “I know I will love this child beyond belief, but how will that be possible when I already love the twins so much?”

Truth. I love them all. Heart achingly so. Breath Takingly so. Equally. Completely the same. And Completely different.

I can’t explain it to anyone. I think the only way to truly understand it may be to live it.

Dear Andrew,
Please understand that I love you more than words could ever express. I would lay down my life for you. I would move mountains for you. Please don’t question my love for you. Please let me cuddle you. Please let me kiss away your tears. Please do not turn to anyone else. Please know in your heart… let me prove to you that I love you as much.

Dear Addison,
You are such a blessing. Please know that I love you also. For your feisty spirit and your amazing heart. I love the way you say “Alay- zan – der.” I love that you say, “where’s Andrew?” about 100 times a day. Please remember that I would travel to the end of the Earth for you, my baby girl. Please allow me to continue to prove to you that you matter too.

Dear Alexander,
Please don’t feel left out. I’m so torn. I need to cuddle them a little extra right now because they are hurting. Please know that this is completely on my shoulders. Please remember that I love you. You are a blessing to all of us. Your brother and sister are proud of you. They love you. They have a bit of 3 year old jealousy, but this is to be expected. Just know that needing help is never something you should be ashamed of.

My post of my heart is also my most difficult aspect of parenting right now. How can I convince all my children that I love them equally? It really does seem like a foreign concept… that you can love so many people so much – but … I do.

Thanks Shell…. For letting me Pour My Heart Out

I’m linking up with Mama Kattoo… I know it’s sort of cheating – but it was her writing prompt that gave me some clarity on this situation.

Filed Under: Uncategorized Tagged With: Battling the Demons Within, Letter, Parenting, Sweet Child of Mine

Randoms… Just an Update

October 29, 2011 By Kristen 1 Comment

For those of you who didn’t know – our whole family has been laced with sickness for the last week and a half. We thought it started with Alexander, went to Addison, then to Andrew, and then back to Alexander. The reason there were no pictures of Alexander last weekend at the twin’s birthday party was – he was feeling so poorly.

When it was all said and done, we ended up with 3 doctor visits in 8 days. Each time we went to the doctor, they didn’t give us medicine because they said it was a virus. SO…. we were hesitant to take Alexander out needlessly when they weren’t going to give us anything for it anyway. We basically didn’t sleep all week because we were on fever spike / seizure watch. Many times seizures are triggered by fever spikes.

Wednesday night, I posted THIS out of sheer exhaustion. I could actually feel the cough in his chest. I almost called the doctor several times over the night, but I knew they would have sent us to the ER… and if you aren’t sick when you go into the ER, you will be sick by the time you get out. In the end, we decided to wait it out.

The next morning, I felt good about going to work. Alexander’s fever seemed to break and I couldn’t “feel” it in his chest anymore. I decided to call the doctor when they opened after I got to work to get some advice.

Thank goodness we have a nurse. When she took his vitals in the morning, she heard congestion in his lungs. She called me immediately. Did I mention she is amazing? This set off a chain reaction of events:

* I call the doctor immediately

* They want us to come in immediately

* I have to leave work again ….

Turns out… we were about as close to pneumonia as you can come. And we were very close to being sent to Hershey to make sure it was controlled. sigh

I forgot to worry about pneumonia. That is the truth…. I worry about seizures, I forgot about the other things that could come attack his little body. We are in this weird place – the twins know and want to do things. The winter can be a dangerous place for kids with WHS. Now I remember – all the posts – from all of our new WHS friends – about how they hate winter. Now I get it.

We were ultimately able to come home… with breathing treatments. and Thank goodness we have a nurse who could show me how to use everything and monitor his vitals for the rest of the day.

As it turns out, Alexander turned a corner that evening and has been slowly traveling the road to recovery since.

This wasn’t even the story I really wanted to tell. You see – Alexander’s illness is really only the prolog to this:

I feel a little overwhelmed at work. I thought this year would be different… no more rushing out. The doctor’s appointments are less and less frequent… The only thing I really think I’m doing right at work is reaching the kids. But then I think… isn’t that what its all about?

Here is the letter I wrote to my students on Thursday morning. I left before we were able to talk about it. When I returned, they asked me why I had left so suddenly. I told them Alexander was sick, but now is better. They then wanted to discuss the letter in the back … that directly related to our topic of the day deviance.

I told them the story about when we received 9 cases of Ellacare instead of 9 cans. I asked them what they would’ve done. We discussed all of the options. They wanted to know what I did.

One girl who had me before said she, “knew.”

I asked her how she knew.

She said, “Because I know you.”

I asked her what I decided…

She said, “You gave it back. Because it was the right thing to do… I know that’s what you did.”

How cool is that?

That conversation led us to THIS ONE about a limited number of resources and the drain on our economy. Specifically the drain by people who might not contribute. The deep conversation of people who want to change the world, who love my son, who know my pride, and can now grasp the reality of what we must look like to people who don’t know us… a vacuum on the economy.

I need to do this. I know that lives are being changed. I know that those students left that class thinking about how to be a better person. How to solve the world’s problems. How to see life in shades of grey.

So …. my question is … again – How can I continue to make a difference like this and somehow get around all the bureaucratic things that make me feel overwhelmed?

If you are reading this and have a suggestion – I would love to hear it.

** And by bureaucratic – I mean no disrespect to my specific place of employment. There is bureaucracy everywhere….. this is sort of a universal thing **

Filed Under: Uncategorized Tagged With: Battling the Demons Within, Letter, Medical Issues, Teaching

I’m Not Ready

October 26, 2011 By Kristen 13 Comments

Dear Andrew and Addison,

I started this whole post… starting from your birth story. And then I scratched it… because your birth story isn’t really the words I need to tell today.

Truth is, I’m not ready.

I’m not ready for you to be 3. You can’t be 3. Just yesterday you were in the NICU. Just last week I was pregnant. Being pregnant with you was one of the true blessings in my life.

Addison, you were baby A. The lowest. The official “first born.” The hardest to name. Full head of hair and a perfectly beautiful face.

Andrew, you were baby B. Feet always in my ribs. Bald, beautiful, and truly a Momma’s boy. I have a secret to tell you… Your name is not really Andrew. It is Raymond Andrew – the fifth. Maybe you will learn it later – like when you are in kindergarten and the teacher calls your name and you don’t answer.

I cried the day you were born. I was drugged and it was too dangerous for me to go down to see you in the NICU. I begged and pleaded with the doctors and nurses to please let me see my babies. I’ve loved you since the day you were dreamed in your Daddy and my heart. I could not bear to be away from you… even for those hours. Here were the pictures they sent me instead.

Those pictures were not enough. Only when you were placed in my arms could I feel like a Mommy. Your Mommy. The most amazing gift. How did we manage to create twins? Born at 33 weeks. 21 days in the NICU. And completely amazing…

Only a blink of an eye passed before you celebrated your first Christmas, first Easter, were Baptized, and enjoyed the long days of summer.

Then … you were a year old. A year of life. A year of celebrations, help, more help… A year of LOVE.

How did another year pass by? Where did that year between one and two go? Six months in, we added Alexander, and I admit … things became blurry for awhile. But I think these things happen to others also. I think all moms feel like this time goes so slowly when you are living it, but so quickly at the same time.

I’m just not ready. I’m not ready for the “grown – up-ness” Honestly? You can go back into diapers. I’m not ready to kiss my babies goodbye. I’m not ready for the preschool I know you need. I’m not ready to give up the snuggles you no longer crave. I’m not ready for the big boy and big girl cups and spoons and forks and … I’m not ready for you to be able to wash your hands by yourself.

Tomorrow is your birthday. 3. It is happening, whether I’m ready or not. You are growing, whether I’m ready or not. And you are growing into such amazing children. I’m really proud of the people you are becoming. I love you…. you who made me a Mommy. You who opened my heart to this beautiful thing called unconditional love.

Happy Birthday, sweet babies.

Thanks Shell– for letting my Pour My Heart Out.

Filed Under: Uncategorized Tagged With: blessings, Family, Letter, Photo Heavy Post, Sweet Child of Mine

Because she Lost the fight…

October 16, 2011 By Kristen 14 Comments

My dearest friend, forever friend, sister of my heart,
I’ve been talking to you all day… and I know you loved to read my blog, so – I guess I will just put it to words so I can know you can read it in Heaven. And… I can read it anytime I need to be closer to you.

I honestly can’t seem to find the words. I can’t remember a memory that doesn’t have you there. You have always been there. My entire life. How am I supposed to go on without you here?

We all knew it was going to happen. The words terminal have spun off our lips like a whisper for years. But you fought. You fought the cancer. You fought. For years. Even when it became painful… you still fought.

Remember? Where do I even begin with the “remember when’s?” How do I even put to words the love that flows when I think of all the things. Those private Wednesday dates before I could even drive. When you were my ride to church. Every week … you heard the secrets of my heart.

I will forever cherish the photos of you holding my first two miracles. When I heard the news… I became almost frantic looking for these photos. I couldn’t bear the thought they might have been lost.

But… the spring when I was pregnant with Alexander… you were one of the few who held me together. Our private joke was always how odd we must’ve looked… the pregnant lady and cancer fighter. Between the two of us, we could barely walk very far. Or lift things. … but we spent our time together. Laughing all the way.

A funny story that she would laugh to know I told now. She worked at our church for awhile. One day, she went down to clean out the church mailboxes. You know… the people that haven’t been to church in forever and still have fliers from 6 months ago. She wasn’t sure what our pastor would think of the idea… so she just went. While she was tidying, she noticed this bottle of water in our church mailbox. She felt certain it was trash and with the 3 kids, we just didn’t have time to take care of it yet. She threw it away. That night, in the middle of sleep… she woke up in sheer panic. She was afraid it was “holy water” from Alexander’s baptism. I know she fished it out of the trash can, and I’m fairly certain she went to the church in the middle of the night to grab it. When she gave it to me… with the story – I told her it was just a bottle of bubbles. But, I used to take pictures of the “holy water” everywhere and send them to her.

How can I laugh when you are not here to share my jokes? Who will stand next to me – if I ever return to Wednesday nights? Who will be my secret keeper? Why couldn’t the “holy water” work? Is it nice in Heaven? Can you see us? Do you know that I miss you? Like heart break miss you? Who will fill the hole you left?

Filed Under: Uncategorized Tagged With: Battling the Demons Within, Letter

Who will Love me for me?

October 6, 2011 By Kristen 5 Comments

This song is my song. This song is the song of my heart, my children, my students…

Here is the song. You can find the lyrics at the bottom of the page, but for now – I’m going to explain how this song has become the song of my soul.

I believe in “late in life” marriage. If asked honestly – I would tell you that I am fairly against teen marriage. I would encourage people to sew a couple of wild oats and give themselves a chance to mature before settling down. A teenager changes so much into early adulthood. The process of maturing and “finding your real self” should be crossed without boundaries. And then… when you know who you are – find someone who will Love You for You.

What happens when a huge life changing even happens late in life? What happens when your life is thrown off the tracks and your entire person changes? Your priorities shift? Your needs shift? What is you were one person and… suddenly became someone else? I’m thankful that Ray is along for the ride, but I can’t help but empathize with a man who married one woman and ended up married to someone else. The birth of Alexander has sort of changed everything. It changed me. It has opened my heart to other priorities. It has opened our lives in this blog. Ray is a private man. I am blogging our lives away. Who will love me for me? The answer is still Ray – but the question is who am I? Every time I think I know… the winds shift, another opportunity arises or drifts away, and me is different. It would be so much easier if me was the old me. Who am I now? and then… Who will still love me for me? Not for what I have done or who I will become?

This is the song of my children also. Alexander… who has his own needs. Who will love him for him? Not for what he has done or what he will become?
Andrew… who is a “twin” and a year older than Alexander. Who will see him for him? Not for what he has done or what he will become….
Addison… the other half of Andrew. The other “twin.” Who will see her for her? Not for what she has done or what she will become…

I believe this is the song of every mother to their children. You worry… You want people to love your children for all those beautiful qualities that make them unique. You want people to see them as individuals. You want people to see your children for them…. Not for what they’ve become or what they will become.

And finally … this is my song for my students. Here is the letter I wrote to them this week.

You don’t need to date someone to be someone. Your qualities are not based on other’s perceptions of you. Be yourself. Give people a chance to love you for you… not for what you have done or who you will become…

I love that at the end of the song J.J.Heller reminds us that no matter what – God will love us for ourselves. A beautiful message.
Here are the lyrics….
He cries in the corner where nobody sees
He’s the kid with the story no one would believe
He prays every night, “Dear God won’t you please…
Could you send someone here who will love me?”
Who will love me for me
Not for what I have done or what I will become
Who will love me for me
‘Cause nobody has shown me what love
What love really means, what love really means

Her office is shrinking a little each day
She’s the woman whose husband has run away
She’ll go to the gym after working today
Maybe if she was thinner then he would’ve stayed
And she says…
Who’ll love me for me?
Not for what I have done or what I will become
Who will love me for me?

‘Cause nobody has shown me what love
What love really means, what love really means
He’s waiting to die as he sits all alone
He’s a man in a cell who regrets what he’s done
He utters a cry from the depths of his soul
“Oh Lord, forgive me, I want to go home”
Then he heard a voice somewhere deep inside
And it said, “I know you’ve murdered
And I know you’ve lied
And I have watched you suffer all of your life
And now that you’ll listen, I’ll tell you that I…”
I will love you for you
Not for what you have done or what you will become
I will love you for you

So what do you think of the song? What is the “Song of your life?” This was the question asked by Mama Kat.