When No One Else Believed….

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.

The Shame of “Type A”

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.)

Beef and Beer… how can this go wrong?

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.

Yesterday I Cried

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 ***

Letter to the Mothers who live my deepest fear

Just answer me one question, how do you go on?

If I would have been asked two years ago what my greatest fear was, I would have said, “Having an unhealthy baby.”  When you are pregnant these are the fears that occupy your mind.  When that fear was realized, I found a way to go on.  I knew it was not the end, but only the beginning of a new journey.  I knew… it wasn’t really my greatest fear.  I survived that fear… but I still have one left.


It is so crippling, that sometimes I struggle to breathe.  It consumes my thoughts at least once a day.  How do you endure the death of a child? 

This past two weeks, two beautiful people with the same syndrome as Alexander have passed on to Heaven.  I write those words from my head.  My head tells me that they are running free of all physical restrictions and are awaiting the arrival of their family in Heaven.  My faith tells my head that truth. 

But my heart won’t listen.  My heart brakes for the families of those children.  My heart rages at the syndrome that leaves so many fears.  My heart … crumbles into a million pieces as I admit my deep dark secret.  I am not as strong as I seem.  I do not know how those mothers go on.  I do not know if I would be able. 

In our small church, there are several mothers who have buried their children.  On Sunday, I sat and looked around, and my thoughts drifted to the parents – connected – to – me – through – genetics… I quietly wept.  Will I someday find myself amongst those ranks?  Who even thinks these thoughts?  Will I alienate myself because I have this fear?  Because I’ve aired it out loud?  How can I bury this fear?  Will I push myself further away from my friends who already don’t quite know what to say to me?

** My good friend (whom I ran this post by before publishing it) asked me WHY I am so scared right now.  I started to write it in this post, but erased it because it seemed too wordy.  Not only has our small community lost several beloved people lately, but other, more personal things have happened.
When I was pregnant with Alexander, we attempted to buy a bigger – 2 story – house.  Our attempts were not realized and I remember asking one of my closest confidants, “What if God is making sure we don’t sell our house because something is wrong with the baby?  What if he wants us to stay here because he knows we won’t be able to handle the stress of a bigger mortgage?”
Fast forward – we did not buy a bigger house.  That fear was realized.
A few weeks ago, there was an opportunity for us to possibly, again, attempt to get a bigger house for our family.  A larger house would also bring a larger mortgage and would commit us to a 2 paycheck family.  I prayed one prayer, “God… please let the decision to move or stay be an easy one to make.”  It turned out, that prayer was answered – the decision was easy.  The offer was not what we expected .. and we are staying.  In the back of my mind – I can’t help but think, “God knows my fears.  He knows I am week and might not be able to maintain a job if something happens to Alexander.  God is taking care of us.”  And it scares me – literally into a state of debilitation. **

I’m not sleeping. I’m literally paralyzed with this fear. I hold Alexander … and beg for mercy. I think of him constantly. And, truth be told – I don’t know how I would cope if anything happened to any of my children. And my head knows that anything can happen to anyone at anytime. But my heart worries for my medically fragile child. As each child is brought to us in prayer – death, seizures, complications …. it grips my heart.


But … really … how do those mothers go on?
There. I just poured my heart out.  Shell @ Things I Can’t Say encouraged me to do it…

Friends In Fun Places

Our Wolf Hirschhorn Family has been ROCKIN' some awesomeness lately:

1.  If you are in the greater Philadelphia (PA - the only one) area and want to check out a GREAT fundraiser - check out Tee it up for Tanner.  An amazing golf outing for one of Alexander's BFF's.  The guys golf (or girls... we are not gender specific), the girls walk, the kids hang out, and there is a beef and beer later.  Tanner's parents are a true testimony of love with a blended family where WHS is a tiny part of life.  LOVE THESE GUYS.  For more info on Tee it up for Tanner - check out their BLOG or contact us.

2.  All the way from Australia (the country) comes Alexander's on-line BFF.  Ellie is Amazing.  And check her out on TV!!! Her parents took part in this perfect segment that pretty much sums up 4p- and their awesome look on life.  LOVE THESE GUYS TOO!  Here is the video

or to go to their blog click HERE.

Have a great Sunday and check back tomorrow when we discuss the idea of "wives submitting to their husbands"

Miracles Giggle

Want a laugh to brighten your day?  Listen to this one.

Happy Wednesday!  Tune in tomorrow for stories of mishap, ill advice, and parenting!

Older Children can be Scary

I remember our first Wolf Hirschhorn get together.  It was at Chrissy’s house and there were about 10 families there… all with kids.  None of the children talked.  None of the children walked.  All the moms smiled.  It was as if I had stepped into this strange parallel world.  Some of my most dreaded fears were TRUE and exposed.. right here in this room – and no one cared!  Alexander was only 6 weeks old and I was petrified.  I loved the smiling faces of the children and the warm embraces of the mothers… but look at all of those things their kids aren’t doing!

Since that meeting, those women have become some of my closest friends.  Two of those children have started to walk and talk, and the other children are moving through milestones at their own pace.  I speak with their moms, so I now think of them like I think of Alexander – with pride in the strength of character, not with pride for the achievements accomplished.

This picture was taken at the 2010 National Conference.  It is the youngest children… Alexander was THE youngest.
So why do those older children seem so scary?  Why is it that I have a mini panic attack when I look at pictures of children from other get-togethers?  I think I have figured it out…
When I think about Alexander and our other friends that I know – I think of all he is almost ready to do.  For example, “he is getting better at sitting unassisted.”  “He is eating better.”  “He is almost…..” 

When I see pictures of children I don’t know – with names I can’t place… I think, “Wow.  They still aren’t doing _____.”  “Wow.  They still aren’t walking.”  Will that be Alexander?  “Wow.  They still aren’t sitting.”  Will that be Alexander?

I’m writing this post because I want to be honest.  I still have fears and doubts. There are still areas of acceptance I struggle with. I realize this post may offend some of the people I want to have in my life. Please understand… I know that Alexander will age… and some time  - some new mother is going to have the same questions.  I mean no disrespect. I think there are many people in my life who find Alexander scary.  It is part of life. 

There have been a few of my blog posts that have been featured on www.wolfhirschhorn.org.  And some people have reached out and said how much some of those posts have affected them.  I guess I just feel a need to come clean.  Not everything in my world is 100% sorted out.  Sometimes I still struggle.  This is one area in particular I struggle with.  Changing my thinking from “Older children who still aren’t – to – Older children who almost are.”

I think it is ok.  It is ok to still have fears.  It is ok to face those fears.  But I really need to find a way to stop attaching limitations on children I don’t know.

Why it is OK to be THAT mom.

I have a lot of "friends" now on Facebook who have children with Wolf Hirschhorn Syndrome.  Most of us have never met in real life, but we have formed a unique community of moms and dads who support each other.  We ask each other questions and offer answers - which is such an amazing thing.  I mean.... in less than 10 minutes, I can get a list of 30 seizure medicines, all I need to do is ask, "what meds are your children on to control seizures?"  I get the advice of every doctor that every parent of every kid has ever seen.  Of course, this advice is secondhand - and doesn't replace the advice of my own doctor, but it is a great place to start.

There is one area of questioning that I happen to be an "expert" in... it is also the area I should excuse myself from.  Education.

Let's imagine this.  You have a child, who uses a feeding pump.  Suppose that child can walk for short distances but uses a wheel chair regularly.  Maybe this child has a few words, but doesn't yet speak in complete sentences.  You go into school... the first time... for an IEP meeting.  What in the world happens?  What are your expectations?  What "education" should your school provide for your child?  Where should your child be placed?  What will you say?

No matter if you have a child with a severe disability or not, these questions run through your mind.  How intimidating it must be to be the lone parent in a room full of teachers and administrators discussing your child.

As a person on the other side of that table... there are some other things to consider.  If you have enough money for ONE speech therapist, how many hours a week will you devote to one student?  And... what if you have two students that both need services... one knows 4 words and the other needs pronunciation assistance?  In a perfect world, each student would get speech therapy every day.  But, if there are 100 students and 1 therapist... this just isn't possible. *sigh*  See the problems?  There is only so much money in the bucket.  Only so many resources that can be divided out - where do you best place them?  I feel I can talk about this because I know I will some day attend an IEP meeting on the parent side of the table. 

So why this post? A "friend" asked about her son's bus time.  He was on the bus for 1 1/2 hours before and after school.  She thought that was too long on the bus.  To be honest... that is a long time.  I'm trying to picture my son on a bus for 3 hours a day... not our "best educational situation."  We began to discuss what to do about this situation.  She was afraid to be THAT mom. I'm going to tell you all... It is OK to be THAT mom.  I WILL be THAT mom.  Allow me to explain.

Alexander is the hardest working person I know.  Just to sit up for 5 minutes is more work than I work all day.  Everyone gave up on him.  They said he would never blah blah blah.  I won't give up on him. Ever.  I know people who started walking in their late childhood or even teen years.  I will not give up hope that walking will some day happen for my fighter... but it won't happen without therapy. The same goes for eating and talking.  You never know when someone with a "delay" will master a skill.  That is why it is called delay - because the skill is achievable.  Alexander is a fighter.  He demonstrates more courage, effort, and "fight" than I ever could.  But I can fight for him.  In those areas where I can make his life easier, I will.  I will make sure he has therapies - even if I have to fight for it.  I will make sure he is included with other students - even if I have to fight for it.

I will trust my "mommy gut" and fight for all the things I think he needs.  I will be THAT mom.  And it is OK.  It is OK - because who else is going to fight for him?  Who else will stand up for him?

It is OK to be THAT mom.

The miracle of a medically fragile child

Tomorrow we will make our way to the geneticist.  I'm preparing myself.  I know what our conversation is going to be like.  We haven't seen him in the last 6 months.  To be honest... seeing him is probably a waste of a day.  The facts are clear:  no one truly knows how the specific genetics of the 4th chromosome work.  For those who have children with smaller deletions will tell you the smaller the deletion, the less severe the syndrome.  Those parents who have children with large deletions, like ours - will tell you deletions don't matter.  The only genetic news I would love to hear is this:  Alexander can do anything.  But we are going.. and will continue to go until we feel it is really no longer useful.

First round of AM meds

Here is the low down on the last 6 months.  This spring, Alexander continued to have uncontrollable seizures.  He was transported by helicopter 4 or 5 times to Hershey.  He is now in the process of being weaned off his third medicine in an attempt to control these seizures.  At this current time, Alexander is completely doped up.  When you wean from one medicine to another, you have a week or two where the body is overloaded with both drugs:  you add the new drug before you begin to back the old drug off.  Alexander is on one his largest doses of seizure medicines ever during this week and next week.  So what will the geneticist see?

A 14 month old 10.5 lb baby that lacks head control.  (He had head control until he put on 6 oz in 2 weeks and his muscles haven't compensated for that weight gain.)  He will not roll around, tolerate tummy time, tolerate the Wingbo, tolerate sitting for long periods of time, tolerate standing in his stander for long periods of time, or tolerate extended periods of oral eating.  Because he is completely drugged up and exhausted.

What he won't see....

Alexander sitting almost unassisted.

Alexander taking assisted steps

Alexander enjoying his stander - he can be in it for hours.

Alexander enjoying eating - or eating macaroni and cheese.

Or Alexander talking

Because Alexander will probably be too tired to show off those tricks.

But what he should see is this. 

Life through the eyes of a child.... He should witness the miracle of a medically fragile child.

Let me show you some miracles.  Medically Fragile children who have had life threatening stays in the hospital, who have pushed through the sticks, needles, seizures, .... the unbelievable pain of constant tests and medicines to try to determine and control a medical problem.  I don't want to share their stories... if you are interested, you can follow some of the links and read about their own special road they travel.  I do want to praise the miracle of God as demonstrated in these children labeled as medically fragile.

Mia.  4 months ago Mia spent over a month in the hospital.  The prayers that went out for her were amazing. Because her life was indeed "fragile."  She fought.  She barely cried. She was courageous.  She showed and needed love.
HERE is a video put together by her parents....

Tanner.  5 months ago Tanner spent time in the hospital for severe dehydration - even though he was receiving his nutrition via g-tube.  His color spoke volumes to the doctor.  It happened overnight. ... because his life was indeed "fragile."  Tanner didn't cry.  He didn't fight.  He was courageous.  He showed love and needed love.  Look at that face.  I screams, "love me!"  "I can do this!"  And he can.
You can read about his journey HERE.


Kaylee. 3 months ago Kaylee spent time in the hospital while doctors raced to place an emergency g-tube in her for nutrition.  She was not receiving enough nutrition, the button wasn't placed correctly, and her "medically fragile" condition was again evident.  She didn't fight.  She was courageous.  She just needed love.  Her mom has a blog - but you need to contact her privately to read their journey.

Bria.  The beautiful baby who inspired this post.  She is Alexander's soul mate.  You would never know that she was running a fever in this photo.  Or that she has several seizures a day. Or that she is running a little "competition" with Alexander on who can have a seizure the longest.  For several months this spring, Bria was in the hospital more than she was out.  She doesn't cry.  Not even when they continue to stick to find a vein because most veins are too small or blown.  She doesn't fight. She is "medically fragile".... but she is strong. 

And Magnolia.  Alexander's Twin.  Just last month, my heart prayed for her healing.  One day, she just became ill.  One day.  She was fine and the next she wasn't.  Just like all of these "medically fragile" children.  This image haunts me....... It haunts me because it has been all of our children. Magnolia is a fighter.  She is so tough.  I'm thinking about my twisted ankle from yesterday - that I cried for over 10 minutes about.  Magnolia does not cry.  She fights.  She is a miracle from God.  Yes.... medially fragile children exist.  Yes, it is a journey of ups and downs that these children experience.  BUT they are miracles.  They are courageous.  They can tolerate pain that none of us can even begin to imagine. You can read more about her journey HERE

Finally, my baby.  Is it any wonder he is not always at his best game?  We go forward.  We go backwards.  We sit, and take a break.  We stand, and take a break.  We are constantly fiddling with his medicine - just to find the perfect cocktail.  And we will.  But Alexander doesn't cry.  He doesn't complain or whimper or .... even show real discomfort.  He takes it.  He shows me how to be courageous.  He shows me that a twisted ankle should not leave me sobbing for so long. 



How can you look at this picture and not see a miracle from God.  Just look at him. He is perfect.n  They all are.

Letter to the new mother.

I've been thinking about this ever since I heard the horrific news of what happened in Las Vegas.  The truth is, probably this mother had other issues and would have done something terrible anyway - but that doesn't excuse the fact that false information circulates still about Wolf Hirschhorn Syndrome.  So here it is - my letter to a new mother (or even a mother who is still struggling with this reality).

Dear New Mother,
It will be ok. 
Please remember that life can change in an instant.  There are people already in your life that you love unconditionally, and you would go to the ends of the Earth for them.... don't worry - you will feel that way about this baby also.  It is ok to be mad at God.  Most people who have traveled this road before raged against him at one point or another, however ~ do not let this rage consume you.  If you had a relationship with him before, feel free to pray, "why?" ... just don't stop praying.  At some point he will answer your questions and heal your heart.

Don't blindly trust what you hear.  Even if it is from a doctor.  People are all fallible.  Doctors make mistakes.  You are the best expert on your child.  Your mommy gut will not fail you.  Listen to what doctors have to say, ask questions, ask more questions, go home - think about things, and make the decision that sits well in your heart.  Your best resource is going to be other parents.  A doctor, in 2010, told us that Alexander would be terminal and to let him "pass gently to ease his pain."  This wasn't a doctor from 1950 ... we were devastated because we felt the doctor was talking from expertise.  The doctor was speaking about a syndrome she had never seen based on research from 1950.  Since then, Alexander eats, smiles, coos, socially interacts, giggles when he is happy, and gets angry when people take something he wants.  Almost all of Alexander's Wolf Hirschhorn friends are walking ~ at least with assistance.  And, honestly, is it the end of the world if a child doesn't walk?  Use the other parents as a sounding board.  Then you have access to opinions from people from around the world.  The medicine that helped Alexander digest his food? I found out about it from another mom and went to several doctors until I found a young guy who was up on his research and knew this drug was used for G.I. emptying. I would not have been able to do this without the community of support of people who are going through the same thing.

Get your child therapy and treat your child normally.  This is probably one of the most important things I can tell you.  If you see your child as an outcast, so will others.  Throw away the chart of "appropriate milestones."  Call Early Intervention.  Get yourself a copy of Gross Motor Skills for Down Syndrome and Fine Motor Skills for Down Syndrome.  These will help to guide you in teaching your child how to reach milestones.  Some milestones we don't realize are milestones because they happen so quickly for other children. (Some therapy ideas can be found HERE.) Use these tools ~ but don't let these things rule your life.  This brings me back to the normalcy of it all.  Get a good reclining high chair - that sits up to the table.  A great one is from Fisher Price.  Put your child in it for every meal.  Alexander has sat at the table with us for every meal since he was tiny.  Even though he didn't eat, he watched us eat and socialize.  We talked to him.  How can I expect him to eat pizza with us someday - if he never sees how amazing pizza with the family is? Alexander goes almost everywhere with us.  Alexander is not the outcast of our family.  Raymond and I never talk about "we can't do this" because of Alexander in front of the twins.  The twins are always encouraged to include Alexander to do things with them.  The 3 kids take a bath together.... every single night. Simple things like this help to solidify your family.  I expect high things from Alexander.  I will love him no matter what, but I will continue to hold high standards for him.

This is me - holding my first born. She was also in the NICU

Lean on us when you need a shoulder to cry on. We have been there. We understand. However, let me caution you.  You must try to find some happiness in life.  I say this cautiously because.... we want you to share those dark moments when you need support.  In the early days and months, people will come to you with open arms and hold your hand as you cry.  Because we have all been there. Just try to make sure you aren't sinking into the abyss that threatens us all.   We want to help you out of the darkness.  We want to listen to you, cry with you, stand strong with you.  We all understand.  But none of us can sink with you.  This may seem like a contradiction, but this is sound advice. Even if it is a struggle, try to find something happy every day.  If you can't do this, please take some time to talk with someone... to find happiness.  Your life has changed drastically, so it may take some time to fully accept your new reality.

Stay connected.  Don't let this syndrome become the end all to be all that rules your life. Again... it may sound like a contradiction, but you have to find a happy medium.  You can acknowledge that your life has changed without becoming completely immersed. And finally...

Love your child. Love. Your. Child.  All children are gifts from God.  You could have a child and realize later in life they were autistic. You could have a child and realize later in life they were going to be wild and sneak out, etc..... you would still love these children.  So love this child.  Give yourself some time to absorb all this information. Everything will be ok. You will love this child.  And this child will love you. Wait and see.....

There is a bond...

that is shared between families with children with rare syndromes.  It is this indescribable thing.  The bond is especially strong between the mothers, but really it is a family thing.  They are the people who pull you through the darkest hours.  They are the people who have been there / done that.  They are the people who understand big words and complex medical terms.  I remember the first gathering Ray and I ever went to.  Alexander was only 6 weeks old and we were invited to this get together in New Jersey.  Half way through the party, everyone started pulling down their kids diapers to show off their sacral dimple.  We were talking about Alexander's sacral dimple, and one of the mothers didn't know what that was.  Promptly - 5 other mothers grabbed their kids and said, "here - it looks just like this... a dimple right at the top of their hiney."  The odd little birth defect was suddenly not so odd. We fit.  Every gathering is like this.  A warm feeling comes over my heart and my smile is at rest.  Actually - one family was not there - so I had my cell phone handy to text important things to the mom so she wouldn't feel so far away.  I even snapped a few pictures to send in text with little messages like, "we miss you."  Want to see? In our new world there are few places where the stress of the unknown fades into laugh lines around our eyes and mouth.  Everyone is a little older, new people are welcomed into the club no one ever wanted to join, and families rejoice in the presence of each other.

This is what it is all about.... Beautiful miracles.

Families gathering. Sharing stories. Sharing support.  All you really need is a friend who "knows."

Best of friends who hold and love your very own miracle baby.

You are proud to know them. Because they are proud of your child.  They don't see WHS.  They see Alexander.

Children play.  My kids lovin' on Tanner.....

Addison shows Tanner her favorite trick.  She loves to "tickle, tickle, tickle."

Other children love on Alexander.... it warms your heart.

From the youngest chld

To the oldest child...

And all the families in between....

Children were the light of the day

 

Friends pass around kids.  Friends gather in small clusters.  And ... believe it or not - it was so rare that I even talked about WHS.  We talked about adoption, love, life, bro-mances, girly things, terrible twos, tantrums, and everything wonderful.  But these people totally get it. 

One final thought..... There is nothing quite like a daddy holding his son. 

Amazing day. Amazing people ~ given the gift of Amazing children.