Medical Issues

We Are RARE, But no longer Silent or Alone

February 28, 2012 By Kristen 6 Comments

Today is Rare Disease Day. I know… everything has a “day” – huh? But, seriously… sometimes I think of all the rarities out there. Because of our blog and our connections, it seems I meet a different person connected to a rare disease every few weeks. I recently met someone with Dravet Syndrome. I also recently 2 other people with very rare syndromes.

Sometimes I feel so alone. Always thinking… What to do next? How to help my family next? How to help Alexander? How to help the twins? How to keep them together? How to keep us out of the hospital? Do I let the twins go to pre-school? (We have been illness free since they stopped going…) **Sigh** Sometimes it is isolating.

And then there is this DAY. This one day dedicated to Rare Diseases. You know what else? It is on Leap Day… The rare day. How cool is that?

Here are some awesome videos – that I didn’t make. But they are amazing to watch. And inspiring. Sometimes we all need a little inspiration.

I love the one from 2009

This was the National Winner for 2010. It is not as uplifting. It is more “reality.” A sneak peek into the world of someone who cares for a person affected by a rare disease. I love that she is honest. It breaks my heart. It makes me want to look away. But I watch… because she needs me to. She needs to know that her reality is not glossed over. That people understand life is not always easy…

This video is the one for 2012:

Did you make it the entire way through? Some of the struggles we face as families with Rare Diseases are … daunting.

No one really knows what to expect. There are not enough people to have real studies done.
The Doctors. Man – the Doctors…. Each visit is different. Do they have faith in my child? Do they see rare and equate it with death? Or limited quality of life?
No one knows what treatments work. When people have a “common” syndrome – there is a list of treatments “proven” to help.
Usually the list of issues is long. For WHS it is seizures, oral issues, low muscle tone, kidney issues, vision issues, hearing issues, reflux, GI issues, heart issues, urinary issues, spinal issues, cognitive issues, …. the list goes on and on. Most people don’t have any idea.
We just want people to know. We exist. Our children exist. We, as caregivers, exist. Please look at us.

Videos from Rare Disease Day

National Association for Rare Disorders

I don’t want your pity. Our life is good. Just – for people to LOOK at us. Not AWAY from us.

Do you know someone with a rare disease? Want to share their story? I would love to hear it. Did you learn something? I would love to hear it.

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

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

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

Please Step AWAY from the Baby.

December 9, 2011 By Kristen 5 Comments

Random fact – a newborn’s optimal eyesight is approximately 7 inches. That is also the space from a mother’s breast to a mother’s face. Divine … God’s divine plan. That a newborn sees his mother while she loves him in only a way a mother can.

So, I suppose it is natural for people to want to shove their faces into close proximity of a baby. It is instinctual. People want to see the cute baby and want the baby to see them. People also feel this instinctual desire to touch or caress a baby. They are so cute – you almost can’t help yourself.

News Flash: Please Step AWAY from the Baby.

I know you mean well. But don’t touch my kid. Also – don’t put your face right in my kid’s face. Let me explain it to you.

Things aren’t like they used to be…. there are germs and illnesses you may be carrying you don’t even know about.
There is this thing – called RSV. I know… you’ve never heard of it before – please see above bullet. In healthy children and adults it seems like a runny nose or cough. In babies or medically compromised children – it can be life threatening. Yes… I am serious. Deadly Serious.
I don’t know you. Why do you think I want my kid to have your germs?
Maybe you are a clean person…. did you use Purell or some other sanitizer after you touched the door to enter the building / check out counter / everything?…
It is winter season. Flu season. Germ season. I have 3 small children – who share germs. We don’t want yours.

This letter is an open letter to all well meaning people who see ~~my children~~ a child bundled up this winter and find themselves wanting to reach in, touch, and talk to this child.

Step back. Away … from the baby. Please.

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

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

The 2 headed Monster

October 5, 2011 By Kristen 14 Comments

I’m not bi-polar or manic depressive… although sometimes I feel that way.

Mothers – picture this. You wake up. Babies are sleeping, and you make yourself a nice big cup of coffee. You sip it leisurely as you catch up on your blog reading list for the morning. You smile and feel completely blessed as you hear a soft conversation come from the children’s’ bedroom. You let them out and….

Everyone starts screaming for something different for breakfast. They speak to you like you are a maid, not a mother. You are given demands as one pulls another’s hair. They wonder over to your freshly folded laundry and rip the towels down off their pile. They tell you they want to help. They scream and wake your youngest baby up. They throw food on the floor and your house is demolished in less than 5 minutes.

Bye. Bye. Tranquil morning. Hello nightmarish day. Feel a little rollercoaster coming on?

That light switch is constantly being turned on and off in my world.

My friend came into my room today and saw this:

She is also my friend on Facebook and knows that I spent almost this entire weekend force feeding a child that didn’t want to eat and couldn’t handle the volume of calories necessary for growth and nutrition. In fact, last night we did something we’ve never done… we used the “pump” during the day.

She looked at my letter to my students and said, “How did that work out for you?” I said, “Great!” …. silence … She said, “Really?”

She saw what many people don’t. The public persona versus the private worrier. The *switch* that can occur on a moment’s notice. The 2 heads of special needs. I switch between feeling blessed and feeling frustrated.

This morning I felt frustrated. Hours of phone calls with no answers. A disagreement between doctors and pharmacists and a distrust of things that are not shown/explained to me will do that. I don’t blindly follow. I want explanations. There is a discrepancy between the medicine dosage the doctor prescribed and the dosage we’ve been getting. It is somewhere between 7 times too much and 7 times too little. And somewhere in the middle is what Alexander needs. (Frustrated)

During my planning period I walked down to see the twins as they finished Preschool. *switch* They were all smiles and giggles. They reminded me of why I fight so hard for my children. They made me laugh as they showed me their latest project. (Blessed)

Later this afternoon, I called home to check on Alexander’s day. *switch* He’s eaten absolutely nothing. sigh. What happened to my little boy who ate pancakes? Where are you? Slipping in and out of the land of “oral?” (Frustrated)

I take another phone call. *switch* Alexander’s been accepted into a “preschool” program. It will be one morning a week and is integrated with kids with special needs and kids without. I’m thrilled that he will get all that stimulation. (Blessed)

On the way home… the feeling of exhaustion sets in. *switch* The antihistamines make me tired and I’ve spent the day smiling. I find myself reflective… not happy or frustrated.

I take a few minutes to re-charge at home and *switch* The blessings flow back into my heart. My husband is healthy. My children are all home. Alexander is well cared for by his nurse. The kids are wound up and running wild. All is right with the world. (Blessed)

Are you getting the picture yet? Sometimes it doesn’t happen as quickly… sometimes the *switch* happens from moment to moment. I decided to lay it all out on the line because I believe I am not alone. If you ever talk or read something written by someone impacted by special needs… look closely… find the *switch*
It might seem like they fluctuate. I’m fairly good at hiding the frustrating moments, but that doesn’t mean I don’t have them. I just wanted to put a voice to all those who *switch* as life leads them… not the other way around.

Once again, I’m pouring my heart out with Shell :

Filed Under: Uncategorized Tagged With: blessings, Frustration, Medical Issues, Special Needs, Teaching

The Unexpected Pregnancy

September 20, 2011 By Kristen 23 Comments

I heard the news today. I don’t know how to tell you, because I don’t want you to think people are talking about you. They are not… I was only told because, well, I would understand. And I’m going to put this on my blog in hopes that God will lead it to the right people.

My heart breaks for yours. As you carry this unborn baby from doctor to doctor, I know your heart breaks as well. I know what those long days at specialists feels like. I know what it feels like when your hope is chipped away with each new test, result, or consultation. I know what it feels like to have that guilt weigh on your shoulders.

If you asked me a thousand times – 999 times – I would tell you, “it is not my fault.” But that one time, when my guard was down, I would confess that I feel guilt over Alexander’s diagnosis. I wasn’t taking prenatal vitamins. I wasn’t doing the things I should have been doing. I wasn’t prepared. I ate the wrong things. I was so “confident” because… babies are born healthy all the time.

I should have known. I should have done something differently. I’m his mom. I’m … his … mom… I just shouldn’t have allowed this to happen. Those are the secrets of my heart.

What you feel it completely normal. The waiting is so difficult. Specialists can only tell you so much – and until you’ve held that precious baby in your arms… the bonding is not quite the same. In time – we both will come to believe what our heads already know… there was nothing we did that could have changed this outcome. God’s hand directs things in motion… for a purpose we are not always meant to understand.

Everyone must make their own choices; I’ve been told you are not going to terminate, and I can tell you that is a choice you will not regret. Those specialists don’t know what a child can do. Those specialists don’t know what God can do.

We were told to allow Alexander to pass. We were told he would never eat. We were told he would not know us. We were told children with his syndrome don’t walk or talk. All of those things are false.

So what if your unborn baby doesn’t cure cancer? He probably wasn’t going to bring world peace anyway. I can’t count the number of people Alexander has brought closer to God. What if that is his purpose? What if that has secured his place in heaven? And the first shall be last and the last shall be first…

As I write you this letter, Alexander is crying. He’s tired of the EEG wrap on his head and he wants to fall asleep. Yet I tell you this, I would not have changed a thing. He is beautiful in every way. He has fulfilled my final dream to be his mother… just as I was meant to be.

I know this video has been shown before – but … I need for you to see it. It is the life that has chosen me. At some point, turning things over to God will bring peace to your heart.

Please know that I am here. Feel free to read anything you want. Feel free to come to me at any time. I am always here.
I wrote this letter in hopes that it reaches a specific person… but the truth is, so many mothers carry the burden of wondering if their unborn child will be ok. Please feel free to repost this as you see fit… in the hopes it reaches all the people who need to read it.

Almost a year later… this is still one of my favorite posts. It epitomizes the fears of a pregnancy that isn’t going like everyone said it would.

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

Life Lessons… take 432

September 15, 2011 By Kristen 6 Comments

Those of you who know me in real life probably know that I’ve started to write “Letters to my Students.” Most mornings I come in and write them a note on the board. The students have really started to respond to them and it has been pretty cool watching them come in and look on the board right away. Someday I will probably post my pictures of letters – but for now … there were 2 “Life Lessons” I talked to my students about.

Life Lesson 1 – You can see the glass 1/2 empty or 1/2 full. Life is how you react to situations…. I choose 1/2 full.

Life Lesson 2 – Education is the most important thing you can ever have. Without being too specific, I explained to my students how the doctors and I disagreed on several areas of “treatment” for Alexander. I told them proudly how I don’t allow ANY doctor to talk to me like I am uneducated. Because I am educated. And… I am extremely educated about my son. I have learned the tricks that work for him. My education, my ability to think for myself – is what has given me the courage to stand up to doctors and get the best care for Alexander. The next time they don’t feel like being in class… they should remember that they are learning to think for themselves as much as they are learning English or history.

We are home and doing well. We love our neurologist. I spoke to him today and he agrees with everything I said. We will now get another EEG to see what these new shakes are. We will get a letter in his file and to keep with him that says – “Give Phosphenatoine ASAP.” Just as we wanted. Because we are educated enough to persevere even when one doctor says it isn’t important or possible.