Sit and Play

Today, is Laik's 11 month birthday!  We are getting closer to his FIRST birthday!  And exciting things are beginning to happen....

I first reported Laik sitting INDEPENDENTLY on April 28 to my friends and family.  It was just a few days past 10 months.

Now, he is sitting and playing.  He is able to keep his balance, though he does tire easily sometimes.  He is much more interested in toys.  He is able to transfer toys from hand to hand.  And he also is beginning to paw at food on the high chair tray now as well.  All are big milestones for Laik and very exciting for us!

We are working daily on crawling.  I remind myself often:  Patience is a virtue.

For now, we'll just sit and play!

Support

Do you have a good support system?  When folks find out that you have a child with an issue, they always want to know who "your people" are?  Do you have a supportive family?  Do you go to church?  Are you going to have help?  You may want to join a group to help you cope.

It always makes me laugh a little on the inside, because for those of you that know my family well....we've got plenty of people....that means bloods and long term honorary members.

My family is a pretty tight knit group.  We spend a lot of time together.  Doing so is a result of my grandparents. Growing up we were always together.  As adults we are still all together.  I'm not talking about special occasions and holidays, I mean at any given time.  It could be a Tuesday afternoon and you might find my entire family...parents, both sisters, brother-in-laws, nephews and probably a few cousins eating together.  For us, this is not a big deal.  It's just what we do.

Since Laik's birth, this has been fabulous for me.  Being a first time parent at age 36, I never knew just how exhausting parenting would be.  I am certain that "having babies" is a young woman's sport for a reason! With that said, having the troops around in full force is wonderful!

Laik is often so stimulated that I worry we overstimulate him sometimes.  The boys enjoy getting in the floor and playing, taking him for a stroll, holding him and most of all, loving him.  I am certain that Laik has progressed because he is constantly in motion with this family.   His eyes light up when the back door opens and another member of the gang arrives.  He watches with intent to figure out just what is going on.

Our son has a such a multitude of love surrounding him, he is guaranteed to thrive!  If I can say one thing about this family of mine, it is this:  regardless of circumstances, situations or conditions, my family has my back.

Todd and I have no worries about being surrounded by supportive people because we don't have to look any farther than the back door to find a helping hand, a listening ear or a shoulder to cry on because someone is always stopping by to see us....well really to see Laik, we just happen to be here!


And that,  is just the support we need!

Wedding Day...

Saturday May 21, 2011 was Laik's first wedding....to attend!

A longtime friend of my nephew's was celebrating his big day and we were lucky to be a part of it.  But, as I sat in the church pew in the beautiful Patten Chapel at UTC, I started to think about my own wedding.  Todd and I had planned to marry there, but things changed and we ended up having a beautiful outdoor wedding almost a year sooner than expected. Everyone asked if I was pregnant?....Really?  If they only knew our story...it's not that easy!

Having these thoughts also made me think of the future....Will Laik ever marry? It is not likely and that is ok.

Each day as we live this life, I become more and more at peace with Laik's condition. This child of mine enlightens and puts happiness in the hearts of everyone he meets.  His smile is infectious! That gummy grin can make the day better for anyone within seconds.  And that gives me joy in my heart!

And as far as weddings are concerned....You can count on him being in at least five, because all our nephews are going to marry someday.....we hope!

Happy Birthday today to Mimi too! 

Tulips

Laik....5 days old.  My life was forever changed and blessed!!

Emily Perl Kingsley is the mother of a son with Down Syndrome.  Below is an essay she composed in  1987.  It tells the story of  how  one feels when delivery day arrives and the plan has changed. 


Welcome to Holland.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.


After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."


"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."


But there's been a change in the flight plan. They've landed in Holland and there you must stay.


The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.  So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.


It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.


But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."


And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.


But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.




There were several individuals that told me of this story before I actually read it in entirety.  After reading it just one time, my heart was opened.  It was refreshing to know that I wasn't the only new mom to feel the loss of a dream. 

I will say, this life we are now living is different from what I had planned, but Laik has made me a better person.  I believe I am more patient, more understanding, more gentle and more aware of what the "big picture" is all about.  I'm learning to enjoy the view from where God has placed me.  This gift from God, made especially for me, has fulfilled an emptiness that was in my heart.  Laik is certain to take me places I never thought I would go, but no matter what, being with him will make the trip delightful!

....and I love tulips!! Maybe Holland was my destination all along. 

Laik at Mimi and Popa's just before Easter.

Hold On!

Holding onto Rudolph at Christmas!  6 months old

Hands are flying!  Eyes are roving! And fingers are finally tightening onto everything Laik can get his hands on!  This is good! Around Christmas, Laik started grasping his Lovies, hair (especially Katy's curls), earrings, and Todd's goatee!  But now, he has a new found interest in TOYS!!!!  A milestone for us!

This calls for a celebration!  So we have purchased a few new toys just for grabbing.  Yea, the Whoozit was nice for the "early months" but now we are onto books and balls.  As for books, this baby loves to look at books and turn the page.  We have made such progress just in the last few weeks.

I threw the "What to Expect in the First Year" out within Laik's first few months because it just upset me each time I would read what Laik SHOULD be doing.  So, now we are on Laik's time and it is the perfect clock for him!

Now, let's get control of the spoon! Just hold on, it'll happen!

He enjoys playing with the wooden spoon...and using it as a drumstick!

He has what??

Christmas 2010....Laik is 6 months old.

Before you even start to read this, know:  I am still in the process of completely figuring out the "in and outs" of Laik's trisomy.  I' m sure over time my understanding and description will get better.  Those of you that are more familiar, please forgive me if I misinform.  


Trisomy 12p?  What is that?  


Todd and I hear the question often.  And without getting scientific it is easier to just say:  It's like Down Syndrome but different.  It is more severe and certainly less common.


Most people recognize the term Down Syndrome, but are not aware that it is a trisomy as well.  Down Syndrome is trisomy 21 and it has a name.  Laik's condition is so rare that it is simply called Trisomy 12p.



From the website:  www.rarechromo.org
  
A chromosome 12p duplication means that part of one of 
the body’s chromosomes has been repeated or duplicated.  
If the extra chromosome material contains important
instructions for the body, learning difficulties, developmental 
delay and health problems may occur. How obvious these 
problems are will depend on how much of the chromosome 
has been duplicated and where the duplication is.  
Genes and chromosomes:
Our bodies are made up of billions of cells. Most of the cells 
contain a complete set of tens of thousands of genes. Genes 
act like a set of instructions, controlling our growth and 
development and how our bodies work. Genes are carried 
on microscopically small, thread-like structures called 
chromosomes. There are usually 46 chromosomes, 23 
inherited from our mother and 23 inherited from our
father, so we have two sets of 23 chromosomes in ‘pairs’. 
The genes and chromosomes are made up of a chemical
substance called DNA. 
Apart from two sex chromosomes (two Xs for a girl and an 
X and a Y for a boy) the chromosomes are numbered 1 to 
22, generally from largest to smallest. Each chromosome has 
a short arm (at the top in the picture on the left) called p
from petit, the French word for small, and a long arm called 
q (at the bottom). In a 12p duplication, there is extra 
material from the short arm of one of the two  
chromosome 12s.  
The duplicated piece can be small or large. When the 
duplication includes all or most of the short arm, it is 
sometimes called a trisomy. A smaller duplication will 
include just part of 12p. You may be told the ’breakpoints’ 
where the chromosome has broken and rejoined.


Well, that was a ear full, wasn't it?  


What I will tell you is that every case is different!  Just like with "normal, typically developing" children, there is a vast range of delays and disabilities within the trisomy.  We don't know exactly what Laik's future will be like but we know this right now:  He is the joy of our lives and we thank God daily for him.


Here are some current Laik facts:


1.  He is a healthy boy!
2.  He eats well.  
3.  His hearing is good.  (tubes helped and we finally passed an OAE)
4.  His vision is good.  (we see the Eye Specialist every 6 months)
5.  He is sitting up independently!


Again, it's called Trisomy 12p.  We will learn as we go on this adventure!  I have made contact with about 6 mothers of T12p children, ranging ages 3-5.  I am grateful to God that I have these women to give me a glimpse of what the future looks like. 


In a nutshell, that's what Laik has! Plus, a family that loves him like no other...especially me!

Spring Break 2011....Not so sure about this sand!

Tuesdays with Lissa

Tennessee's Early Intervention System (TEIS) is a voluntary educational program for families with children ages birth through two years of age with disabilities or developmental delays.  


When Laik was diagnosed with T12p, our pediatrician advised me to contact TEIS.  I was reluctant.  My opinion (which was obviously distorted) was that WE did not need help from the state!  I was in denial. (I realize that now.)  I often refer to those early months as my DARK TIME. Thankfully, I managed to crawl out of that hole!

Because, this state program has been a blessing for many reasons.  Not only is the program provided by the state of TN, but it is a FREE service.  And we have met incredibly good people that have Laik's best interest in mind. It was not until I needed such services that I realized the importance of these types of programs that our tax paying money supports! (thank you TN tax paying citizens)

Tuesdays 11:30....Laik's standing weekly appointment with Lissa, our Early Interventionist.

Lissa started with us on September 7, 2010....Laik was 10 weeks 4 days old.  

Are you serious?  We have a therapist for our newborn?  

I always say therapist and Lissa corrects me.  Well, she is MY therapist and Laik's Early Interventionist!  Lissa entered our house with a cheerful tone and an excitement to meet and interact with Laik.  She has shown compassion for Laik like she has known us forever. This woman knows what she is doing and she does it well.  

She has also provided the cutest little surprises for me.  At Christmas, I received a wreath ornament with Laik's picture in the center.  I also have a Santa ornament that is the outline of Laik's hand.  His hand will never be that small again!  And most recently, a Mother's Day card with little insects that were made from Laik's thumbprint!  These little jestures of kindness are momentos that I will keep always!

Looking back, I was nervous that we were admitting that something was wrong with Laik and we needed help. Again, that was fear poking it's ugly head out!  And denial too!  Now, after having Lissa with us weekly for eight months, we did need her.  We did need THAT program!  She, along with others from TEIS, has helped Laik progress and develop in a way that "research" had me convinced that he wouldn't. 

Thank you Lissa.  I wasn't sure in the beginning if we would really like this, but we do.  All of three of us! And thanks be to God for putting her in our path of development!  

Unfortunately, I don't have a picture of Lissa, but we will get one!

Because, next Tuesday....she'll be here at 11:30!

Laik sitting up with some of his favorite play toys!

Mother's Day

I woke up this morning to the hum of Laik's voice on the baby monitor.  It was a precious sound of sweetness.  I generally just hear it on the weekends due to the fact that I leave home for work before Laik gets up each day.  Yet today it was like that feeling you get when you are at the beach and hear the sound of the ocean: Happiness!  And to top off the moment, my Toddler (aka my husband) said to me, "happy first mother's day"....my heart melted! A quick kiss for him and I was out of bed to get Laik!

I was giddy with happiness!  Truly my first Mother's Day!  I have a baby!  I am a mother!

I enter the nursery and there is my sweet boy.  Humming and smiling!  Again, my heart melts and my eyes fill with tears.  Though this time, the tears are of joy!  This baby, my son, knows not one inkling of what he means to me.  He knows nothing of how my heart fills with warmth each time he smiles.  He doesn't know that each day I pray for his well being.  He doesn't know that when I am away from him, all I can think of is how much longer until I get back to him.  He doesn't know that I would sacrifice anything of my own or myself for him.  The one thing I do believe that he does know is that I am his mommy!

But wait...my baby has T12p. Does he know I am his mommy?  For months I worried that Laik didn't know that I was his mother, but my own mother pointed out several things to me.
1.  Laik turns to my voice.
2.  His eyes light up when he sees me.
3.  He smiles when I speak to him.
4.  He is soothed by my touch.
5.  I can calm him just by holding him close to me.
6.  He nudges me lovingly as if trying to get closer to me when I hold him.

The list could go on, but I'll stop.

But, I did argue back, all babies do that when shown affection. And I did doubt.  But not today!

Today, on this very first Mother's Day...I know that he knows I am his mother and that Todd is his father.
I have this peace in my heart because today, even though it is just another Sunday. A day that many, many years ago, a woman  by the name of Anna Jarvis inspired to celebrate and honor all mothers.  It was a day of celebration for me.  A day to celebrate that I have a son.  Take away the worry of his future, the concerns of all the "what if's" to come.  Today, I wasn't the mother of a child with a chromosomal disorder.  I was just like every other mother....thankful, grateful and blessed that I have a child of my own!

So without more jibberish from me...Happy Mother's Day!

I hope that your wake-up call was as precious as mine!

To my own mother and sisters:  I am able to do what I do because I have had each of you to guide me!

To my mother & sister-in-law:  Todd and I are thankful for both of you being a part of Laik's journey!

To Todd and Laik:  Thank you for making me a Mommy and I love you.... to the moon and back!!!

Admit it!

I know I said that I would work backwards and tell the story but unfortunately for you (the reader) this blog may read like a really bad term paper.  Jumping all over the place!

Today was one of those days. I had a breakdown. These happen periodically and honestly I think it is healthy!

As I was driving into school this morning, Tenth Avenue North's song, Healing Begins was on The Message on Sirius.  The song begins as follows...

So you thought you had to keep this up
All the work that you do
So we think that you're good
And you can't believe it's not enough
All the walls you built up
Are just glass on the outside

So let 'em fall down
There's freedom waiting in the sound
When you let your walls fall to the ground
We're here now

This is where the healing begins, oh
This is where the healing starts
When you come to where you're broken within
The light meets the dark
The light meets the dark

I started to cry, but then I said a little prayer and told myself "pull yourself together, Laik is going to be just fine"....tears dry up and I pull into the entrance at school.

A friend sees me pull in, stops walking and waits on me.  I'm certain my eyes are red from the "moment" and I try to pull on the "I'm ok" face.  Epic failure.  She asks, "what's wrong?"  Waterworks spring into action again!  Bless her heart...she was just being kind.

So to make a long story short, we talked.  I expressed my fear of the journey I am on with a son with T12p (my new reference for Trisomy 12p) and the faith that I proclaim to deal with it.

The problem with this is....I am scared.   I have never been a very patient person and the unknown scares me, a lot!  Since Laik's birth I have built up walls to protect him, I thought, but ultimately I was protecting myself. 

So today, I am knocking down the walls.  Take away the fear, the worry, the doubt and let the healing of this wound begin to heal!  The day that Todd and I were told that Laik had a chromosomal disorder, I admit,  my heart ached for the little boy that I dreamed of during my pregnancy.  Now, after 10 months with Laik,  I cannot imagine life without the baby boy that God chose for me!  Without Todd, my wonderful and ever faithful, non-worrying husband, by my side this journey would be nil. 


Isn't it ironic how just one song can make you open your eyes and see the light?  Admit it, it is!

It's time to start...

As I sit here staring at the screen, I think to myself "where do I begin?"  I will start with this moment right now and work backwards to December 17, 2009.  That is the date that the journey of parenthood started for Todd and me.

I feel that is time to start sharing details of Laik's trisomy with friends and family.  We have so many loved ones that are lifting our Laik up in prayer!  I want each of you to know what we are facing with Laik in the future.

Our life is completely blessed by our baby boy, but it is a ride that will have many ups and downs I'm sure.  

So, hang in there with us.  Sharing has never been one of my best traits, but it is time to share the delight and joy and the heartache and worry that we are facing with Trisomy 12p.