The "Nevers" to my family

People say, "Never say never" .... well - I am.

Dear Ray, my dearest husband. I promise to never stop appreciating the million ways you provide for us and show us your unending love.

Dear Addison, my first born.  I promise to never crush your spirit.  Your head strong, willful soul is one of the most beautiful things you possess.  You drive me crazy and make me so proud at the same time.

Dear Andrew, my middle child who acts like everyone's big brother. I promise to never keep you from chasing your dreams.  You have wild and crazy ideas.  You have an amazing imagination. Chase... Chase... Chase...

Dear Alexander, my baby.  I promise to never give up on you. Ever. 

Happy Thursday Everyone.  Hope this holiday is filled with dreams, potential, love, and lots of spirit - from our family to yours.

Some people show their feet at the ocean or some amazing place... not us - feet by the pool with the family.

What are your 4th of July weekend plans?

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.

Songs of Love

"525,600 minutes.... how do you measure a year in the life?.... It's all about LOVE."  I love that line. It is from one of my favorite songs from one of my favorite plays - Rent.  Even though last night I wrote about the social isolation of special needs, that doesn't mean we can't try to put those feelings aside and focus on all these positive things that happen.  I wrote that post - not because it is this huge issue in our life - but because it is an entity that rears its ugly head from time to time.  I want people who read this (outsiders, family, and even our kids one day) to realize that everyone struggles some times.  I don't want to gloss over those days when we felt alone.  However, I don't want to dwell on those feelings either - because they are fleeting these days.

So today we woke up and surrounded ourselves in the songs of love.  Alexander's occupational therapist has a song she sings to help kids learn to eat.  Truth be told - I can't stand to sing this song.  I will move the ends of the Earth for my son, but ask me to sing, "Yum, Yum, Yum, I like to eat... fruit, vegetables, and meat.  Open my mouth, chew and swallow... Yum, Yum, Yum, I like to eat." is like pulling teeth.  So we taught the song to the twins.  Want to hear Alexander sing it to his brother?

Speaking of brothers and sisters.  I believe one of the best decisions we made has been to keep all 3 kids together as much as possible.  Andrew and Addison now try to include Alexander in everything.  They love to sing to him, play with him, and take such pride in helping him do things.  It makes my heart happy.

We also had a surprise for the twins.  I get asked all the time, "Who keeps the twins while you are at work?"  One of the few people I know loves my children as she loves her own. Look at the love between them.

They all cuddled up on her lap to be showered in kisses.  Brooke is my cousin and faithful hugger, kisser, and fixer of boo boos for my children. 

In case you can't tell, Brooke is rubbing Addison's arm... in that, "I love you and miss you because you don't come to my house this summer" sort of way.  Andrew is (in both pictures) licking the cheese puffy residue off his fingers.  A gift from his second mom.

 Brooke's kids also love my kids like they are part of the family.

We are blessed to have people in our lives that love us.  We are blessed to have time to spend together.

Brooke reading a book to Alexander... and he just loved every minute of it.
 
This evening, we ended up taking a little trip.... to the pet store.  One more song of love ~ the songs of the cats and dogs and birds.  Here are a few cute pictures of the kids.  For those of you who read on Facebook that Addison ran face first into the glass ... it was at the Pet Store.  She was so excited about the Guinea Pig she ran face first into the glass.
1440 minutes today.  1440 minutes of LOVE.  We will just keep plugging away until we get to the other 524160 minutes this year.

Have a great Friday everyone! We are headed off to make lots of memories this weekend.

What memories will you make this weekend?

The Isolation of Special Needs

I feel sort of isolated at times.  I feel sort of offended some times. I feel sort of sad sometimes. As I feel new relationships grow and blossom, I see other relationships fracture.  I hate it when people say, "Oh I understand... because - (insert reason)."  The truth is - only about 500 people understand. Social Isolation

*** No LIE - an example of this JUST happened after I wrote the paragraph above.  About 5 minutes ago, I went back - stopped Alexander's feeding pump, unplugged it, gave him his 2 seizure medicines, replugged it in, restarted it, and came back out here to write this post.  6 sentences into this post - Ray says, "Did you unclamp Alexander?"  (We have to clamp his feeding tube when we give his medicine.)  And I hear it - the beep, beep, beep of his feeding pump. *sigh* So I hopped up and ran full sprint back to his room to unclamp his tube before the beeping woke up Alexander and the twins. *sigh*.  So you understand that, huh?  ***

I think the words, "I understand," might be the most offensive right now.  As much as we are praising the victories and celebrating our time together - almost no one else really understands what goes on here. People make casual remarks that hurt. You don't understand - not even if you have lots of children or small children.  At age 14 months did your child feed him/herself?  At least partially? 45 minutes to eat an ounce or two is a victory.  You don't understand. At 14 months was your child sitting? standing? crawling? starting to walk? You don't understand.  I don't measure our life by milestones anymore.  Alexander will eat when he eats, walk when he walks, sit when he sits.... However - I also don't tell someone with cancer that I understand... because I don't.  Social Isolation.

A few days ago I was asked an ice breaker question:  What is the worst thing you've read?  You know what I kept thinking? That article from this post.  I can't say that.  This isn't about my son's special needs.  I can't ruin the ice breaker by telling everyone about that article.  Instead, I answered another question with a useless answer. Social Isolation.

When people compare their lives to ours. This has caused my relationships to fracture.  They don't understand. Please don't compare your ruined day at the park to our cancelled family outing because of an emergency trip to Hershey.  On the flip side, I have a lot of friends who almost seem apologetic when they open up about life's curve balls they were just thrown.  They say things like, well..... compared to what you are going through. I don't really feel that is ok either.  A divorce is still hurtful.  Problems with children are still hurtful.  Illness is still hurtful.  The death of a loved one is still hurtful.  Even a breakup is still hurtful.  I would love to lend support to my friends.  Either way - I don't think we should compare lives.  They are just different.  I can be a friend to you ~ you can be a friend to me.... But let's not compare the realities we both face. Because the reality is that comparing is a terrible way to show support, and isn't that what a relationship is supposed to be about? Social Isolation.

I've been feeling sad because I'm trying to put some boundaries up for the sake of my family.  As much as I feel sad - I also feel rejuvenated because of this time spent with my children.  I feel like I need to protect this. I need to make sure my family remains my number one priority.  So I'm starting to put up some small walls to protect the sanctity of our family.  And for each minute I try to pry away from outside sources to secure for our family - is a struggle.  I have used the words, "we need this" too many times.  I have mentioned Alexander's special needs too many times.  I have listed his specific special needs too many times.  I don't think about this stuff in this way ~ because it makes me sad. And who do I tell?  Who would understand?  Social Isolation

Sunday is our regional Wolf Hirschhorn gathering.  Many of my now-closest-friends will be there. People who understand.  People who will relieve me of this social isolation.  People who will rejuvenate my soul - as they always do.  This could not come at a better time.  I want to live in the world of people. I'm ready to be out of isolation.

It's a Great Day to Be Alive!

Almost like this

I've been sort of rolling this around in my head for awhile. ... the post about life and music.  I was driving home tonight and decided to switch the station to music of my childhood.  There is a country music station that plays songs from the 70's and 80's mostly.  It reminds me of bailing hay, riding a tractor, and riding bikes for hours at a time.  We played with the cows like they were our pets.  We shoved each other into cow manure.  We locked each other in the barn.  People today would probably write these things up to the department of children's services, but ... "back then" things were simpler.  I know I was driving a tractor when I was 7.  I got my first gun when I was 6.  (My 4 year old brother and I split it).

Funny side story.  Once, in college - I met a very attractive boy and began to talk to him. Denise... my college room mate and friend - came over and told me she wanted to go home.  I said, "not yet! I'm talking here."  So she busts out this story about how I was such a hillbilly that my dad bought me a gun when I was 6.  Let's just say the guy was a little mortified (I think he pictured my family with 10 teeth between us) and Denise and I were able to leave because the conversation was OVER.

But I enjoy all music.- just not the very "extreme" of anything.  Example - I can listen to country - but not bluegrass.  I can listen to rock - but not soft rock/ Michael Bolten.  I can listen to Rap / but not the heavy stuff where there isn't even a hook.  Get the picture?  This is important because I'm going to post a very important story about how a rap song changed my life later.... but for today:

It's a Great Day to Be Alive.  This song by Travis Tritt came on the radio and I couldn't help but sing along. At the top of my lungs.  Because it is. Here is the chorus:

And it's a great day to be alive
I know the sun's still shinin when I close my eyes
There's some hard times in the neigborhood
But why can't every day be just this good?

It's a Great Day to Be Alive

Andrew and Addison tending to Alexander (who wasn't feeling well today)  Addison is dressed as a fireman if you are wondering.

And finally.... if you want to watch the video and sing along - It really is a great day to be alive.

Notice Travis Tritt's Mullet... hehe

I dare you to watch this and not start to smile.

It might not be perfect, but it is real

Ray took this picture yesterday.  All of the kids are battling some sort of cold.  Alexander has it the worst - poor baby.  The twins get a little grumpy and their noses run.  Alexander.... needs fluids and you just want to wrap your arms around him and kiss it all away.  Anyway - yesterday afternoon I decided to kiss his boo boos away.  We ended up taking a nap on the couch together and my sweet husband snapped this picture.  I wish I was smiling - because trust me, my heart was content.
It might not be the perfect picture - one of those posed shots where everyone is smiling and every hair is in place, but it is real.

Horrific.........

Warning... POST IS GRAPHIC IN CONTENT.... Please exercise caution before reading...
 
For those of you who know me... you know that I hate to read all the garbage in the news.  I hate to flood my mind with images of the most vile things in society.  However.....  some moms posted a link to an article that I couldn't believe.  I actually searched it to find out if the article was legit... and I found the article from CBS.

(Warning... do not read if you have a weak stomach....) Read the story HERE - or read my abbreviated version with thoughts below. 

A woman had a child born with WHS.  She killed the 2 month old baby... by fire.  The autopsy showed smoke in the lungs.  This means the baby was alive prior to the fire. I honestly don't even know what to say here.... I'm looking at the screen thinking - what do I say next?

I just can't believe a person could do this. Could kill their child.  This is why I don't read the news. I hate these stories. And this story hits home because of the genetic syndrome... Alexander's syndrome.

But also shame on you CBS and other news outlets.  "A terminally ill baby was still alive...."  and  "the couple were (should say was) unaware Brandy would be born with fatal birth defects."  Shame on you for printing this. A child with Wolf Hirschhorn Syndrome is not terminally ill.  How did they not research this? How could they print such lies? Don't they know that WHS miracles exist within their midst every day? I feel like I could just vomit.  Or throw something. Or cry. Or do all three. I'm doing that looking thing again... what to say here......

This brings me back to when we heard the news.  We were told Alexander would be terminal.  We were told to "ease his suffering."  We were told to let him pass in peace.  Not only am I mortified that a mother would do this to their child - but I am always mortified when parents do despicable acts, BUT I am also mortified that news outlets allow the lie of the terminal WHS child live on.  I'm mortified that this woman was released on bail due to her 'special circumstances.'  SERIOUSLY?

Everyone has special circumstances. DEAL WITH IT.  Welcome to LIFE.  It throws you curve balls. DEAL WITH IT.  

AND FOR THE FINAL TIME. WOLF HIRSCHHORN SYNDROME IS NOT AN AUTOMATIC TERMINAL DIAGNOSIS. 

I guess this was bothering me a little more than I thought. Sorry for the depressing post - but .... when will people: news community / medical community / everyone stop giving up on a child before they have a chance to live? 

A Father's Day to Remember....

What if one day you woke up and made the choice to live life as if tomorrow might not exist as you know it?  We make plans, we break plans.  Life spirals out of control.  What if you decided that you would make the most of today?  So if tomorrow spiraled out of control - you could smile about today.  I think we have been slowly moving to that point... and Father's Day this year was much different than holidays in the past.

Our celebration started with a picnic on Saturday.  The picnic was planned at the last minute ~ which just goes to show you ~ the best of times don't need to be a big production.

Cousins

 There was laughter at this table.  This is what Father's Day is about. Kids laughing.  Thank you Pappy, Daddy, and Uncle Patrick for raising kids who know how to laugh together.

 

 

Aunt Laura ... lovin' on Alexander (Who's lovin' it.)

"No fair! her arms are longer!"

 Addison

 Not Addison - her soul sister

 Not Addison either... the ring leader "soul sister"

Check out this trick

 He actually can become totally submerged. (But then you can't even tell he is in there)

 Uncle Patrick totally rocked in the cold water.  Because - truth be told... I didn't feel like getting in there!

 Cousins.... Andrew asks about "B" all the time.

 Soul sister is so beautiful.

Nothing like a campfire to finish out a night with family.

One note *** Oldest Cousin 'K' - stop hiding from the camera! ***

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The next day... was relaxation and memories at the same time. The kids woke up and helped me make daddy breakfast.  An omelet it is.  Beautiful memories....

They were so proud to "cook" to Daddy.  I should have snapped another picture - Alexander is sitting off to the edge watching everything.  And every 2 minutes or so a kid will hop off the chair and run over and say, "Awww... I love you little buddy."  Melts my heart every time.

*****
After breakfast we packed the kids in the car and headed out to make some more memories.  Why put it off? Thomas the Train was waiting for us.

 

****

Finally, we ventured home.  A nap, some cuddles, a story read with 3 kiddos in bed.  We made another impromptu decision to put the second bike trailer together and take a bike ride.  Ray loves to ride bikes, and he bought these bike trailers so we could take the kids.  The only problem with the trailer was Alexander was not quite the right size to fit the trailer.  If there is a will, there is a way.  We are 5 strong.  We all ride bikes together. 

Finally - a bedtime story with Daddy. Memories. 

We are slowly shifting to making memories today instead of planning for memories tomorrow.  What memories do you want to make?