fears

Day 12 – FEAR

April 12, 2012 By Kristen 9 Comments

If you read my blog regularly … you know I have many fears. If you are new… you can venture to my the fears of my heart HERE or HERE or HERE.

But, honestly – I just cannot go there tonight.

I have other fears. I fear a professional meeting with a crap hanging out of my nose.

I also fear this:

Yes, I don’t even have the courage to use a real life example. One of my biggest fears is teaching with my zipper open or toilet paper hanging out of my pants. I decided to combine the two. The doll baby doesn’t mind.

What would you put down for fear?

Start the 30 day photo challenge HERE. (Be sure to check out the other linkers!)

Filed Under: 30 Day Photo Challenge Tagged With: fears, In the Online World, Meme

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

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

I’m trying not to Lash Out

January 10, 2012 By Kristen 37 Comments

I have about a bazillion blog posts roaming around my head right now.

In case you didn’t hear, I just got my own little piece of blog heaven advertising on The Bloggess’ page. (Warning, Grandma – she swears – so be prepared.) But she is funny and I like her and she offered and I accepted.

**Which is one more reason you should advertise here – because people who read her (like 3 million a month or some ridiculous number) will click on my link and then they will click on yours. ** Which in my book is a win-win.

I was going to write this funny, light hearted post about my no-good-rotten-day yesterday. The one where I explained how I was exhausted yesterday and so I drove past a cop- while the cop was driving also. Yes. You read that right. That cop wasn’t hiding. He was just driving down the road. I was singing and thinking about how tired I was and zoomed right past him. So, he gave me a ticket. (As of this posting, I still haven’t had the nerve to tell Ray. So … Ray, if you read it before I can come clean – surprise!) Then I went to school and found out that I had a “positive read” on my TB test. I got the honor of going after school to get a chest x-ray. So, I worried all day about the implications of me having Tuberculosis. Finally, after having the chest x-ray done – I was informed that I would be given the results by the department of health the next day. Um… no. I need the results now and I know you have them because the x-ray tech told me so. I had the extreme privilege of telling off talking to a person from the department of health where I got to explain that I have a medically fragile child at home. When she said, “I understand,” I may have become unhinged and started yelling at talking to that lady again. Trust me. She now totally understands what I mean by medically fragile. I was not coming home if I had tuberculosis. Luckily, I do not. I was a “false positive” and all is well.

I also thought about writing the post of my heart, which has been worry for a precious girl. She is a member of our “community” and a strong – fighter girl. Not only is she brave, but her parents have been incredibly brave in sharing their struggles here. I was going to ask you – who pray for us – to pray for them as they navigate this new trial with their daughter… she could be Alexander. *sigh* I wasn’t really sure how I would write it – to make it not about “us” on our blog and also not come across as exploitation. The truth is – if you pray – they could use some right now.

Then, I caved in and took Alexander to the doctor again. For his ears again. And as we were sitting in the doctor’s office, I felt this overwhelming desire to write a love letter. Not to Raymond, although I do love him, but to Alexander’s doctors. In particular – his pediatrician. The man who has never given up on him. The man who has called in every favor known to man to put us in contact with the right people at the right time. All for a baby who may never talk. Or walk. Or eat. Our pediatrician treats Alexander as if he might be the next president of the USA. (ps. Alexander is getting tubes placed in 1 week due to the rush job of all the doctors.) I just wanted to say… thanks. For loving someone so many discarded.

And then. **Finally – a point** .. I stumbled across a post. This isn’t the first time I’ve been a little offended by a blog post – and not the first time I’ve been offended on this blog.

It was a guest post written by a mother of children with special needs. The mother declared that she didn’t like her kids all the time. *sigh* She went on to outline the stuff they do that drive her crazy. The thing is – this stuff… it isn’t normal “because you are 3 and in the midst of the terrible 3’s” stuff. It is stuff they do because of their special needs.

And I wanted to lash out. Because there is a really good chance her children will one day be able to read those words. Because those needs are – well … not needing a kidney transplant or some of the other things I’ve been worrying about. Because – what is this woman thinking? If your circumstances are driving you nuts – find a better way to say it than, “I don’t like my kids.”

Then I wondered if I was a little too high on my horse. I mean – aren’t I always saying that I don’t want people to judge me? I can’t count how many times I’ve said, “God can judge.” And… really – is it fair? To bash her on my “moral righteousness?” I mean, it isn’t her fault that her children aren’t “medically fragile.” It isn’t her fault that she didn’t spend a day worrying about a TB chest x-ray. It isn’t her fault that her child’s needs seem minor in my eyes. **I’ve edited this post 3 times. Going back and forth between making the “post” so obscure that I had no real meaning and making the “post” so obvious that everyone would realize who I was talking about. If you realize…I’m sorry. I don’t mean it to sound so directed.**

**sigh… again… sigh** I guess – I just wish people would remember that the internet is forever. Those words are forever. I’m writing a post right now that is another letter to my children. I have things I want them to know. Sometimes my kids drive me crazy. Sometimes their behavior is out of control. Sometimes I need a break. Sometimes I want to scream. But… I love them. and I like them too. I might not always like their behavior, but I like them. And – the behavior they can’t help – they just can’t help it. (I’m really thinking of my youngest here.)

So, I guess the post of my heart is more of a question this week than a statement. Do you think bloggers should comment on posts like this? Do you think we should stay out? Would you have judged another mother? (Because I will also admit that I read another excellent post about Moms supporting each other and NOT calling one another out.)

I’m admitting that I am not perfect. I’m admitting that I had moments where I really wanted to just lash out at another mom. Someone I never met. That is my PYOH post. Go ahead…. let me have it. I can take it.

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

I will FIX you

December 17, 2011 By Kristen 5 Comments

Most of you who read regularly have probably seen the video I made about our feelings when we first learned Alexander had Wolf Hirschhorn Syndrome. If you haven’t seen it… here it is. If you have – skip below. It gets better.

A close friend of mind made a video that touches me in such a way – that I need to watch it every once in awhile. She reminds me constantly that God’s plan is divine for each and every one of us. She doesn’t need to “fix” her daughter.

I’ve been struggling these past few weeks with sorting this out. I posted a little bit about this HERE. This fall has been pretty brutal for Alexander. 4 ear infections, one UTI, a bought with Pneumonia, and 3 seizures. It looks like we may be headed for surgery in the near future. We are going to see a urologist and then move on to a nephrologist. (they look at the kidneys.) We have “classic WHS kidneys.” – We shall see to what extent the kidneys need “fixing” – but it does look like the urologist will be “fixing” us up so he doesn’t have so many UTI’s. We are also going to see an ENT to “fix” Alexander’s ear infections. Probably we will have tubes put in. That seems the most logical choice.

Again. I will move mountains for my child. I do not want him to suffer. If tubes are needed, then tubes it will be. If other surgeries are necessary, then those will be also.

Our appointment on Friday was with the Neurologist. *sigh* This is where the “how much can I ‘fix’ Alexander?” eats at me. His illnesses have caused him to fluxuate in weight gain. He’s been growing longer and not chunkier. He seems to have a loss in muscle tone. Ok. He’s lost muscle tone. But he has this increase in appetite. SO…. I’m thinking that his dose of Keppra is making him a little “off.” We switched to name brand (which controls better) and upped his dose.

Should I ask the doctor to lower the dose a little? To avoid the zombie – like state I’ve seen him spiral into several times? What if he has a seizure then? How can I help him? without needing to “fix” everything about him?

Usually I’m ok. I can balance these dualities pretty well. This past week I was not that fine. I kept replaying my friends video and wondering if I was pushing too hard. Especially when it came to the neurology visit. Keeping the seizures away is our number one priority. All else must take a backseat. What if he just doesn’t have great muscle tone? What if that is the price we must pay to keep the seizures away?

Our visit went well. We had a great talk. We made some plans. Alexander is going to have some good Omega 3’s entered into his diet. I’m going to try to put some weight on him and see if he can “grow” into his dose.

Still… I must tread with caution. To help my son, but not need to “fix” him. Something I will continue to ponder.

Filed Under: Uncategorized Tagged With: Battling the Demons Within, fears, Inspirations, Special Needs, Sweet Child of Mine

Not the Woman

December 9, 2011 By Kristen 4 Comments

I’m not the woman I once was.
That thought keeps gnawing at me.
Chewing at my heart.
Chomping on my self esteem.
Cracking my smiling exterior.

I feel fake. Faking that former me.
I want to laugh. I want to say, “Fine!” when everyone asks how I am doing.
I am used to shrugging when people ask me how I do it all. I have the routine memorized…
Shrug. “You just do.” Smile. “We are very blessed.”
We are very blessed…. that part hasn’t changed.

Just me.

I feel like I am clawing my way out. Nails scraping on the side of the walls. Refusing to slide down.

I’ve been unable to do it all myself. And it sucks. People offer to help… but so often they really don’t know what to do. I mean… they can’t come and stay up late at night for me. Take away my mother’s worry. Replace me at a doctor’s appointment. Replace my attendance to the twins. And I don’t want them to do that.

I might have figured out a way to relieve some of the stress. But, I’ve had to ask for help. And it sucks.

Not only that – but I’ve had to be very frank about Alexander’s medical needs. Our familial needs. When you list them out… WOW – reality check.

I hate to list that list. Because that list is depression. That list is pessimism. That list is darkness.
And right now – that list is our best chance. At hope. At optimism. At light.

So… I’ve jumped into the well – feet first. I had to jump. To save myself. I had to jump into that dark place. And … now – I’m clawing out. Hope by bit of hope. Until that sunlight shines on my face again. And I can be that girl I’m pretending to be.

The one who smiles and says, “No worries.” “We’re amazing.”

Because the truth is – most of the time – we are amazing. The rest of the time, I don’t dwell on it.

It’s just that stupid list. That list of all the things that are not “perfect.” … or even close.

*Sigh* …

Filed Under: Uncategorized Tagged With: Battling the Demons Within, fears, Frustration, Parenting

When the Perfectionist Fails

November 19, 2011 By Kristen 7 Comments

Is there a time when I get to be “perfect” again?

I am a true perfectionist… even about the silliest stuff.

Even with school – yes… I believe there is such thing as the “perfect” lesson. And – in my version of “perfect” – you work hard… then harder…. then even harder – until things are the best they will ever get. That no one could have worked harder than you me. No one could have made it better than you me. Perfection.

I really wanted to write something light and fluffy. Fun pictures of the kids and Ray and I at the parade. We were going to bake chocolate chip cookies tonight. We had it all planned out. Relax. Breathe. Exhale. Smile.

Last week Alexander had an evening of screaming all night long. I went to work on 2 hours of sleep. The next day, I had him into the doctors – to recheck his ears. Because we were that on top of things. We were preemptive. We did everything right. Turns out – he did still have an ear infection. Turns out… he did need more antibiotics. *Cue back patting here. Great Job Kristen…. Way to go – figure it out. Fix it. Don’t let things get out of control. *

Today Alexander had another seizure. Despite all of it. Despite the doctor visit. Despite the early detection of the ear infection. What about the “perfection” of it all? I worked harder than anyone. We did everything right.

Alexander’s seizure was the biggest yet. Lasting the longest. The most uncontrolled ever.
15 mg of Valium
100 mg IV Keppra
100 mg IV phosphenotoine
3 doses (don’t know the MG rate here) of some other “V” medicine
3 doses of Ativan.
I believe there are some other drugs that I missed.
I was too busy trying to overhear the conversations:
Phenobarbital / Valpuric Acid / Intubate / PICU / Spinal Tap / Meningitis …. shit.

I know you are all going to say that no one is perfect. I know you are going to tell me to stop beating myself up about this. But. I. Am. His. Mom. (As of right now… he is not intubated nor has he had a spinal tap…yet.)

How can I recognize and help so many other people… but not be perfect enough for my little buddy?
(who… by the way … is PERFECT.) I just feel like I’ve screwed it up somehow again. No cookies for the twins. So many drugs given to this little boy… and – nothing I could do to stop it. This little fighter boy.

Ugh. Tomorrow… I promise to blog a happy blog. Today, I need to sleep somehow. And sleep will come after I’ve emptied my heart of this blurred vision of perfection. Thanks for listening.

Filed Under: Uncategorized Tagged With: Battling the Demons Within, fears, Medical Issues, Seizures

I’m Not Going to Play Nice

November 8, 2011 By Kristen 6 Comments

I’m tired.
I’m tired of always waiting to post until I can see “what lesson can be learned.”
I’m tired of always trying to put things into perspective.
I’m not going to play nice tonight.

Mr. EMT.
Yeah – you. The one who had control over my son’s life. The one who came into the ambulance. The one who told me I couldn’t ride in the helicopter again.
YOU SUCK.

Mr. EMT.
Yeah – I’m still talking to you. The one who think’s he’s God. You are NOT. I know what my child needs. I know how my child acts. I know my child. You just met us. Take a minute and listen to me.
YOU SUCK.

Mr. EMT.
Yeah – I’m not done yet. I was still talking to you when you took my baby away. How did that make you feel? Powerful? In control? Did you know I was rendered speechless? Did you realize I was still explaining what Alexander would look like when he came out of a seizure? I guess you didn’t hear my request for the E.R. to call when my baby arrived…. because they never got it. You were probably too busy walking away from me. You never even let me say goodbye. You just turned – in the middle of my descriptions of Alexander – and walked away.
YOU SUCK

Was it that terrible to hear a mom ask to ride in the helicopter? Did you feel you needed to teach me a lesson? Or did you just not want to hear my request? Did you decide I wasn’t worth it? Alexander wasn’t worth it? What would have happened if you didn’t recognize his seizure? What if something happened to him because you didn’t know about his: seizures, non reactive pupil due to a cataract, low muscle tone, mickey-button, small veins, blue hands/feet that are normal, etc. Those are things you should know before you take him away. You didn’t even know what medicine he needs to break a seizure. And… thanks to you – neither did the ER. Did you know that I got to drive an hour and a half with that knowledge? Does it bother you?

No. This isn’t a nice post that ends with … Well – everything happens for a reason at the end.
I don’t care.
Maybe tomorrow – in the morning – I will have a different opinion of you … Mr. EMT.
I’ve never written something really bad about someone on my blog. But this is real life.

I can deal with the seizures. I can deal with it all. Because Alexander takes it all in stride. I can learn from my son to be content with what I have and love people mercilessly.

But… Mr. EMT – you need to remember that every “case” you have – is or was someone’s baby. Someone has entrusted you with a loved one. Tread carefully…. because a little compassion can go a long way.

Thanks for all the prayers. Alexander is amazing. He is strong and sleeping in the bed. We are pulling an all nighter’. Thanks for letting me be a little “real” on the blog. So often I wait until my emotions don’t write the post – but tonight… I just had to get something out.

Filed Under: Uncategorized Tagged With: fears, Frustration, Seizures

Going to BlogHer Writer’s Conference

October 19, 2011 By Kristen 9 Comments

Oh the places we will go.

And the guilt that follows along.

I shouldn't be going to this conference.

The twins both have low-grade fevers. Alexander's probably going to get sick. The twins are having a big birthday party on Saturday. I just turned on the van and there is a warning light that popped up. There is the very real possibility that I could leave Ray stranded with three children and no car. I feel selfish.

But I can't stop myself. I really want to go. I really want to know if I'm any good. I really want to know if my blog could be a book. Or maybe I could write an inspirational book with all this pictures of the letters to my students. I can see it now… they laugh me out the door - I don't even know what book I want to write.

I don't have an elevator pitch done. I feel like a kid who signed up for the general class and got put in the AP course. I'm so over my head I have no plans, no pitches, etc. I got my hair done.

That's what I’ve done to prepare for this blogger conference… got a new hairstyle.

I hope people don't laugh at me. I just want to know if I am any good.

Sometimes I tell my kids be careful chasing a rabbit down wormhole. I don't know if you understand what I mean… but - sometimes people get so sidetracked that they can't see the full picture. They end up going down a path they never intended to go down. And they spend hours upon hours chasing this rabbit – only to end up nowhere. I wonder if I'm chasing rabbit. If I should be focusing my energy on other things. I wonder if I'm making a mistake with this blog. A friend told me I should take a 90 day break from my blog and do P 90 X. (and get healthy…) Because I don't have time to do them both.

I feel like my life is about “not enough time.”

Remember the hypothetical story? Of the hypothetical anniversary that was almost ruined? Well… this trip prompted the hypothetical fixing of that problem.

Here’s why I didn’t do it before… Ugh. The only thing that is the same is – I am still an organ donor. Otherwise… I’ve transformed – from a hip twenty something girl – to a mom. *sigh*

That is the extent of my preparations for the conference. Oh – and I picked up a car charger for my new IPhone. They are going to laugh me all the way home.