WHS

Sometimes Support Groups Suck

April 17, 2012 By Kristen 38 Comments

When there aren’t that many of you… people tend to find comfort in numbers.

There is a comfort that comes from knowing that someone else really “gets” you. There is a serenity that comes from knowing that your friends can help you navigate a world of complex medical issues.

There is support in those numbers. We love each other. We grieve together. We celebrate together. We understand that life isn’t measured by years or days; instead – minutes…. moments. Life is measured in moments.

But, sometimes support groups are not all they are cracked up to be. Sometimes I feel that WHS is all around me. Like the noose that suffocates me. I just can’t break loose.

Maybe today… I don’t want to discuss deletion sizes and how it may or may not impact our kids.

Maybe today… I don’t care.

Maybe today… I don’t want to be reminded about all the scary dental/urinary tract/ kidney/ EVERYTHING issues.

It isn’t that I don’t care. We have those issues too.

But, just maybe – today … I want to pretend that we don’t.

And yet, being a part of 4 WHS support communities and 4 other special needs communities – complete with notifications, e-mails, and updates, is sometimes overwhelming.

It tears at your heart. … to know so many people who have medical issues. To read the fear of our friends. It isn’t like a “real world” – where you know one child in the hospital… it is this medically fragile world – that can have numerous children in the hospital on any given day.

Sometimes it is us. And we need support. Sometimes it isn’t… and – it can be overwhelming.

Confession: I don’t want to look the future… positive or negative. Because, the truth is – every child (with or without WHS) is different. And one person’s reality is not ours. Nor is our reality someone else’s.

Maybe today – I just want to be us. Family of 5.

ps. I really hope our friends in our WHS community can understand the post of my heart. And thanks, Shell – for letting me share it.

Filed Under: Uncategorized Tagged With: Battling the Demons Within, I've Got an Opinion on Everything, Special Needs, WHS

Don’t Jinx It.

March 27, 2012 By Kristen 25 Comments

I don’t even believe in Jinx’s. I believe in the power of God. Still… I didn’t want to see my husband before our wedding. And, I wear the diamond my father gave to my mother – around my neck. Not on a finger… they are divorced – bad karma.

I have made no preparations. I mean… I believe it is going to happen… but I’m afraid to say it out loud.

Alexander’s Birthday. It is like a whisper on my lips. The birthday my baby wasn’t supposed to have.

It is right around the corner. *phew* …..

I have so many emotions swirling… I don’t even know where to start.

So, I will start at the beginning. The hospital. I can still see the printout in my mind’s eye.

“1:3 will not make it to age 2.”

The meeting with the genetic counselor when Alexander was only a few weeks old. Her packet of information, titled, “Mortality Rate of Wolf Hirschhorn Syndrome.” You can guess what the information was inside. More of the same.

“It has been estimated that approximately 35% of individuals who have WHS die within the first two years of life.” – From wolfhirschhorn.org

More… More.. More… It all said this:

“Mortality rate is estimated at 34% in the first 2 years of life. However, because many affected children die before the anomaly is diagnosed or suspected, the mortality rate is underestimated. The usual cause of death is a heart defect,aspiration pneumonia, infection, or seizure.” – From Medscape

Until I couldn’t breathe. Alexander had 3 heart defects. Alexander had seizures. Low muscle tone is a huge contributor to pneumonia. No air….

I will tell you that I couldn’t stop reading. There have been other times- I’ve found myself obsessed with those numbers. I’ve fallen down wormholes and had to claw my way back out. I’ve even blogged about them. Why didn’t we wait until Alexander was 5 or 6 to get a seizure dog?

Maybe because we worried that without a seizure dog he wouldn’t see age 5 or 6.

And here we are. Only a month away from that magic number. I know it is only a number. I know there is no magic jinx. My head knows that everything will be ok. But, even as I type that… my heart lurches. Prays.

We haven’t invited anyone to a party. We haven’t bought a single decoration. We haven’t thought about gifts. My fingers want to type, “I KNOW I am being silly. I KNOW everything will be ok.” But, I’m afraid I will jinx it.

Thanks Shell, for letting me Pour My Heart Out. And, I promise – no more “deep” posts for awhile.

Filed Under: Uncategorized Tagged With: Battling the Demons Within, Sweet Child of Mine, We've Got A Reason to Celebrate, WHS

I Never Thought it Would Happen to Me.

January 16, 2012 By Kristen 11 Comments

I’m going to write something that will probably come across as arrogant, rude, and selfish. I’m not going to filter my words or sensor my thoughts. I’m going to write to the people who will read. This is probably one of the few posts I would not share with my children. Ever.

But. The internet is forever, and so I will apologize to my kids first. For not being a better human. And secondly tell you that – every once in awhile – something needs to be said, even if you are ashamed of it.

I never thought it would happen to me.

I never in a million years imagined I would have a child with special needs. Much less – many needs.

You see…. My mom was a strait “A” student. She is smart. But my dad, is so smart – he makes even smart people feel dumb. He scored perfect on his math SAT’s. He missed 50 points on his English SAT’s. He’s a certified genius.

I was part of the “gifted” program. (I told you it was going to sound arrogant.) I don’t mean it to come across that way. Not that many people even know that. So was my brother. I don’t know that I ever took a class that wasn’t CP or AP. (Ok … yes… a science class I had to take when I realized Chemistry was not for me.) I was lazy when I felt like it because usually I could pass a class with minimal effort.

Arrogant me talking again – I never once doubted I would be accepted into a “Non-Ivy-League” college. I only took my SAT’s once because I knew the score was high enough to get in. I didn’t study for my teaching tests and even took the Math test without a calculator. (I forgot it… Who does that?!?!)

Ray is smart. He went to a big college. He graduated with honors. (Me too! Me too!) Several of his nieces and nephews are in various gifted programs.

We have great genetics.

It never in a million years crossed my mind that we would have a child with a genetic syndrome. That would impair almost every aspect of his life. Not in a million years.

You can judge me as you see fit. I’m ok with it. I’m not going to hide in shame because of my shameful arrogance. That we were too bright to have a child with delays.

Guess what? It doesn’t matter how bright you are. I used to “pray” for a healthy baby, but – if I am revealing the secrets of my heart – I never really thought I wouldn’t have a healthy baby.

It happens to other people. I’m impatient. I want instant gratification. I want to multi-task my life away.

Ugh. If I were another parent I would want to smack myself.

** I’ve make a lot of mistakes when it comes to being a “person” **

But, once you enter this world – lights shine on things that clutter the corners of other houses. Without Alexander, I may never have truly understood what it means to fight for your child. Or have fear for your child.

I will tell you – there are many people that have special needs and are denied care or services. You can chose to believe this statement or ignore it. But it is the truth. If you read and research this topic – you will find other stories.

Most parents I know (with children who have many medical needs) have a fear that someday their child will be “cut off.”

Most parents I know (with children who have many medical needs) have had to fight for some sort of care.

Most parents I know… never thought it would happen to them either.

You never know where life will take you. The twists and turns come so fast – sometimes the momentum propels you further than ever imagined. When looking at families around us, we should all be thankful for the blessings we have – because you never know when something life changing will happen.

** I am, for the record, THANKFUL that it happened to me. Everyday with my children (all 3 of them) is a blessing. That isn’t what this post is about. It is about recognizing that life does not always “happen” the way we think it will. **

Filed Under: Uncategorized Tagged With: Battling the Demons Within, Medical Issues, Misunderstanding, Parenting, Special Needs, WHS

If you are Stopping by

January 15, 2012 By Kristen 1 Comment

to check for updates on Mia, I think this is the wrong place to be.

You see… this isn’t her family’s blog, I’m not her mouth piece (she is quite articulate on her own), and she regularly posts at wolfhirschhorn.org.

Yes, I did post about Mia, with her parents blessing… but it was still the post of my heart. Many others have written the posts of their hearts also… but to hear to post of Chrissy’s heart – you will have to wait and look where she regularly writes. Wolfhirschhorn.org.

That is not to say I will never blog about Mia, I have before and will probably do so again – I love that girl. But not at this moment.

And – one last thing. Sometimes waiting is the hardest thing to do. Please remember that the internet can spread faster than a person can think. This is a family we are talking about. This is a child who’s life is being discussed all over the internet.

Filed Under: Uncategorized Tagged With: Special Needs, WHS

Human Rights, Going Viral, and What Next?

January 14, 2012 By Kristen 48 Comments

Well… we went viral yesterday. It was an unbelievable experience. I wrote THIS POST about our friend Mia. I wrote it because Mia’s mom, Chrissy, shared her story. After a devastating visit to CHOP (Children’s Hospital in Philadelphia) earlier this week, she wrote about it HERE. (Her words are better than anything I could ever say.)

I spoke to Chrissy this morning. We discussed many things, and it is with her blessing that I write the post of my heart.

1. There have been several people who have asked “What is MIA able to do?” “What is her quality of life right now? For people removed from the special needs community, this might seem like a reasonable question. But, anyone who knows anyone with a disability will tell you – that question doesn’t matter. It really doesn’t. My son – whom many of you read about on a regular basis – is 20 months old. His peers walk, talk, eat… I know, we have a nephew a month younger than Alexander. Alexander does none of these things.

Does that make him less of a person? Does that mean he will never? Does that mean he should be denied medical treatment?

Many children with Wolfhirschhorn Syndrome have significant delays. G-tubes are a regular sight at our gatherings. I personally, have a love hate relationship with the G-tube. I hate that Alexander has it, but know it has saved his life many times. However, he is learning to eat. He is learning to be “vocal.” He is bearing weight on his legs. I know a lot of children with WHS that walk, talk, and eat. Often our syndrome is associated with Down Syndrome because some of the “classic issues” are similar. Some children have more delays and some have less.

Here is the thing. It shouldn’t matter What any child is able to do at this point. It just doesn’t matter. Alexander is my child, I love him, and I take care of his needs. Mia is the same. It doesn’t matter what she can or cannot do – so that is why I’m not even addressing what Mia “can” do. Because it just doesn’t make a difference All children deserve the right to life.

What if it was your child. It could be. Count yourself lucky if you have never had to fight for your child’s right to live. I have… and it stinks.

2. There has been a lot of speculation weather or not this story is real. I am the most skeptical person around. If I read this on the internet, I would probably question it also. Except – I know it is true. Mia is a real child. Her parents are real. Her siblings are real. I know them. I’ve heard her mom’s tears. They are not people who would “make a story up.” And… if you read through the comments on CHOP’s Facebook page – I have seen other parents already reply they have been told similar things by doctors. I have been told similar things. Before Alexander was released from the NICU, my husband and I asked the doctors (At Pinnacle Health in Harrisburg) what to do if Alexander had a seizure or other medical issue. A well meaning doctor held my hand, looked me in the eyes, and said, “let him pass in peace.” I also posted in February about visiting a GI doctor who refused to help us put weight on Alexander because, “I could help you, but then you will just have a FAT baby to lug around until he dies.”

Two years ago, if you searched Wolfhirschhorn Syndrome on Google, you found these awful stories. Terrible accounts of people with disabilities from case studies done in the dark ages. One of the reasons WolfHirschhorn.org was founded was to tell the real story. The stories of children who walk, talk, play, love, yell (as Alexander is doing now), and … did I mention love? The real story is getting out, but not fast enough. Mia is the ultimate example of people who place value on life based on your contribution to the world. So if you don’t become a rocket scientist, you don’t have value?

If you want to learn more about Mia… to better understand HER… you can find old stories and videos they have posted. Here are some links you can browse if you are still skeptical.

Video of Accepting Mia as she is

If you go to Wolfhirschhorn.org (our stories) on the left: Amelia = 16 posts about her.

3. Lastly, no one expected this story to blow up the way it has. Chrissy is in complete shock. One of the biggest questions asked is, “what can we do to help?” You can post on CHOP’s Facebook page. HERE. You can e-mail anyone you know who has any connections to ANY ONE. You can share this story through social media outlets like twitter and Facebook. You can “link in” to this story. You can Share it with your friends. You can sign the petition for Mia found HERE. You can follow #TeamAmelia and #Lifeformia on twitter. And tag any posts you write about her story. You can read other blogs.

If you have written a blog or article about Mia’s story, please leave a link in the comments section so others can find it.

If you have found an article or blog about Mia’s story, please leave a link in the comments section so others can find it.

If you have suggestions on how to spread the word, please comment… we really don’t know what we are doing!

Our biggest fear is that CHOP will attempt to “wait out” the long weekend in hopes that things die down and people forget. Please don’t let them forget. Continue to spread the word.

Remember… this could be any child. This could be your child.

Filed Under: Uncategorized Tagged With: fears, I've Got an Opinion on Everything, Medical Issues, Special Needs, WHS

My Worst Fear … Is Coming True

January 13, 2012 By Kristen 27 Comments

One of my biggest fears? That someday people will deem “Alexander” not worthy of medical treatment. That some day, some doctor will say, “No more seizure medicine.” “No more g-tube formula.” ” He’s never going to be a rocket scientist – so we will not help him.” Many of you are probably thinking these fears seem irrational.

It just happened. Not to Alexander, but to one of his closest pals, Mia.

Mia is beautiful. She is sweet. She is innocent. She is so loving. She could be Alexander. She has the same syndrome, the same diagnosis, and on paper – they both are classified as MR.

They both take slow steps. But, unless something is done – the doctors at CHOP (Children’s Hospital in Philadelphia) are not going to allow Mia to …. live.

Mia needs a kidney transplant. In 6 months to a year. Her parents aren’t even asking to be put on a list. They want to step up and donate one themselves. They don’t even want to take a kidney donated from anyone else…. And CHOP has just denied them. They say they will not do surgery for Mia because she is considered Mentally Retarded.

They will not give her a kidney. Donated by her parents. Because of her mental IQ. I am in complete shock.

Please help us. Please go and read Mia’s story HERE. Her mother writes it better than anyone else ever could. Please share. Tweet it. Facebook it. E-mail CHOP. E-mail everyone. Please. We know Mia. We love her. I’m asking as if it were Alexander…. because it could be. Please help her.

Filed Under: Uncategorized Tagged With: fears, Medical Issues, Special Needs, WHS

When No One Else Believed….

November 15, 2011 By Kristen 9 Comments

I once knew a girl. She didn’t know what to do when she grew up. We discussed this at length… because she was special. She was The Darling Graduate.

Along Came Alexander.

She is currently in college with a dual degree in Special Ed and Music Therapy. She may decide to do something else… but I know she will walk through life touched by a miracle.

I once knew a girl. She had to write a paper for a college class. She couldn’t decide what to write it on… because the topics seemed so vast.

Along Came Alexander.

She is writing the paper on WHS. I can’t wait to see how it comes out – maybe she will publish it here or on the WolfHirschhorn Site.

Each year there are approximately 200 students who learn that saying THIS word is wrong. You know why I feel compelled help them understand the power of words?

Because of Alexander

I know lives are being changed. Because … Along Came Alexander.

It is amazing to see the outpouring of love that comes for our family. If you haven’t had a chance to see how we would like to give back, please read THIS POST.

But… Here are some of the pictures from our newest tool to help Alexander. Thank you.

Alexander getting his new IPad …. Love – If you would like to see the results – click HERE.

Video of Thanks from us to you… My first VLOG. I’m seriously going to need to get better clothes!

And now… what you are dying to see. Alexander using the IPad for the first time.

I’m telling you… this boy is going to do amazing things. We thank you again… for not giving up on a boy despite what uneducated doctors told us. For looking with us at potential – not limitations. We love you for this.

Filed Under: Uncategorized Tagged With: blessings, Special Needs, WHS

The Shame of “Type A”

November 2, 2011 By Kristen 18 Comments

I took a personality test before writing this post. The test can be found HERE. The range was 35-380. 380 is extremely Type “A” … I scored a 300.

So I guess I’m pretty far on the spectrum.

That isn’t really surprising. If I was honest, I would confess to being impatient, having high standards, and I have trouble handling my stress. I also often take charge, I’m goal oriented, and find myself being competitive. I do become irritated when left waiting or wasting time, I have a hard time smelling the roses, and – I am a “fast talker.” Apparently – even talking quickly is part of “type A.” Finally, I am driven for success, am ambitious, and like to be the best. At everything.

Often, people associate Type A with things negative, but the truth is – I like to believe that I am a good person. I have friends who are also “type A” … and I believe they are good people as well. However… I need to remember to hold myself accountable to my values above my personality traits.

This post is really about the pursuit of happiness… or just the pursuit.

Ever since I went to BlogHer a few weeks ago, I’ve been trying to process all the information they gave us. I installed Google Analytics. I’ve been looking at things like “bounce rate” and “unique visitors.” I’ve found myself thinking things like, “Why didn’t I install this months ago?” I couldn’t just be happy in the now.

I’ve been trying to use Twitter more (ALSFM) and my Facebook page more… in my quest to be the best. Not just happy with being… but trying to be the best.

And with teaching. My passion. My heart’s song. It is not enough to go in and deliver a lesson and walk out. I want to be the best. Not for recognition from students or colleagues… but because mediocre is just not enough.

This pursuit has been swelling in my type A stress filled life for awhile. All the while I try to slow down with my family – smell the roses – hug my children – I find myself racing forward in the pursuit of my goal oriented happiness filled dreams.

If only we have a house with two bathrooms. If only my blog became a big thing. If only we get this seizure dog. If only Alexander has more therapy. If only I can reach more students. If only….

But, you see – I have these incredible friends. They are my barometer on all those negative associations that come with the Type A. They are the people that I call to help put things in perspective. And because they helped me with that perspective, I am going to go ahead and pass some of that wisdom along.

I want to win that IPad for Alexander. I want to win it so badly that I made a video with him touching my IPhone and I explained how it would benefit him. I think he is the cutest kid on the block. I stand by my post on why I love Halloween.

BUT….

I need to remember that I am “competing” against my friends for this coveted gift. I need to remember that winning isn’t everything. I need to remember… that even an Iphone (which – honestly is too small for Alexander to manipulate) is more than some have. I need to remember that some people do not have the means to any of these things. I need to remember that some people don’t have the support system in place that we do. I need to remember that some people have not been given the gifts we have.

I would still like for Alexander to win the IPad. He will be amazing with it. But.

Happiness is:
Friends who will stand by me through my “forever” times.
Family who loves and supports us constantly.
Loved ones who … just love us.

Happiness does not come from things. It could all wash away. And if I was left … a “loser” surrounded only by people who love us – we would still be the most blessed people.

Happiness is us. Type A or not. Happiness exists here.

Are you happy? Can you be happy without the pursuit? What have you given up to reclaim your happiness?

Thanks – Shell…. for allowing us to link up (once again.)

Filed Under: Uncategorized Tagged With: Battling the Demons Within, I've Got an Opinion on Everything, In the Online World, Our Happy Place, WHS

Beef and Beer… how can this go wrong?

September 27, 2011 By Kristen 2 Comments

Truth? It can’t. I’ve never been to a “beef and beer.” It is sort of an East Coast City thing. You get together and … eat beef and drink beer. Sort of self explanatory. Around our little area of hillbilly land we call them “drawings” or “feeds.” (Yes, we actually call these things feeds.)
Anyway, this past weekend we went to this amazing benefit for one of Alexander’s friends. In this quasi – world of WHS, there are very few of us out there… and there are even fewer boys. Tanner is amazing. He’s like a shot of sunlight that just… curls around your heart. When he smiles, I swear – the world smiles. Tanner is extra special to us because – he is yet another example of how awe inspiring children can be. Yet another example of why doctors should not give up on any child. Tanner is Alexander’s hero – and his benefit was one we were proud to attend. Here’s a few shots from the day… golf, a walk, beef, and (of course) beer. But most of all – friends. Pulled together by something out of the ordinary – made friends by something extra ordinary.

Tee it up for Tanner. We could not be more overjoyed to have such great friends.

I didn’t put captions under all the pictures because… well – the amazing thing isn’t the pictures. The amazing thing is we. are. not. alone. There are big brothers and big sisters and husbands and new babies…. and us: Moms and Miracles. And the miracle is – we are together.

Thanks J and J – for the opportunity to gather with my soul sisters and support your beautiful son.

Filed Under: Uncategorized Tagged With: Our Happy Place, We've Got A Reason to Celebrate, WHS

Yesterday I Cried

September 14, 2011 By Kristen 9 Comments

Alexander had a seizure. His first one since June. Our third week back to school. And I cried.
I cried as I left the building. I cried as I drove home. I cried when the helicopter told me I couldn’t ride with him, and I cried when we were stuck in stand-still traffic for over an hour on the interstate. There were moments where I felt such self pity. I will not lie. Why wouldn’t they just let me ride with him? Why wouldn’t they just let me ride with him?

As I posted yesterday… Everyone has moments where they just… break down.
My post yesterday wasn’t meant to demean those moments. No matter your circumstances… we all have them. No one’s “circumstances” are bigger or more than another’s.

In my world, I hear people complain about losing sick days. They complain about the interruption of their schedules. I hear people complain about … everything … which was my rant yesterday.

But… my tears were just mainly for my baby. He seized for 5 hours. The why wouldn’t they let me ride with him? – was for his sake… not mine. They stuck him several times because I wasn’t there to tell them not to. They gave him medicine that doesn’t break his seizures because I wasn’t there to tell them not to. His poor little brain seized for hours because the drug that “breaks” his seizures couldn’t be given until we got there…and that took almost 2 hours in traffic.

I just want to kiss it all and make it better. I want to hug him until the seizures roll by. Mommies should be able to do that. Mommies should be indestructible.

Truth – I cried for both of us.
Truth – I cried for him. Because in the end… I just want him to be ok / happy / feel better.
Today – I am thankful that he “outgrew” his medicine dose.
Today – I am thankful the Keppra is still working (just at a higher dose).
Today – I am thankful his seizures have stopped.
Today – I am thankful I have a job and coworkers who cover for me when I have to leave.
Today – I am thankful this happened this week instead of last (see news story HERE.)
Today – I am thankful for the friends and family members who prayed for us …. over 100 e-mails, texts, calls, and Facebook messages (I counted.)
Today … I will push away the anger and frustration of a few moments and focus on those things still to be THANKFUL for.
Today – Alexander is crying because he’s ticked we are still here. What a sweet sound that is.

I debated. I wasn’t going to link up – because this post needed posted today no matter what day it was…. but – so many people over there have been following our journey – here it is.

*** We are Home ***