Meet Magnus Ulysses February 9, 2010
Posted by Lisa in CHD Awareness Week, Hypoplastic Left Heart Syndrome, Magnus Ulysses, Mommas Of Moonbeams.1 comment so far
Introducing Magnus
Jen’s blog is The Baby. I found Jen’s blog shortly after she had been given the hypoplastic left heart syndrome [HLHS] diagnosis for her son. Magnus was born on 11/19/09 and had his first surgery, the Norwood, on 11/24/09, right before Thanksgiving. In a few weeks, he will be going in for his second surgery, the Glenn. Today he’s going in for his first cardiac catheterization. Please take a minute to check in with Jen and Magnus and send some good thoughts their way. Be sure to check out Jen’s slideshow – Magnus is absolutely adorable!
CHD Poem February 8, 2010
Posted by Lisa in CHD Awareness Week, Hypoplastic Left Heart Syndrome, Moonbeam.1 comment so far
Somewhere…someplace… today…
A family is waiting to hear…
Is something wrong with their baby?
The answers aren’t quite clear…
This family has entered an unwanted world…
And they just don’t know what to expect…
Somewhere…someplace… today
They first heard the words: heart defect.
And how they hoped this was not true…
And thought… this cannot be…
I too… know just how this feels…
For one day…this was me.
Somewhere…someplace…today…
A man and a woman embrace…
Their baby is in surgery…
They long to see his face…
They haven’t got to hold him yet…
Without…a cord or line…
They pace the room awaiting news…
And hope he’ll be just fine.
Prayers fill this busy waiting room…
And mom and dad are scared…
Somewhere…someplace..today…
The tiniest hearts are repaired.
Somewhere…someplace…today…
A child’s growing fast…
Smiling,laughing,thriving…
His mom thinks…can this last?
It’s almost easy…to forget…
That anything is wrong…
Somewhere…someplace..today…
Her child seems so strong.
Somewhere…someplace… today…
A little boy fights…just to live
A father holds his tiny hand…
His love…all he can give…
The doctors are all baffled…
They fear that he might die…
Somewhere…someplace…today…
A family says goodbye…
Somewhere…someplace…each year..
More than 40,000 families will see…
What it means…when something’s wrong…
They’ll face a CHD.
Today…for just a moment…
Stop…remember…reflect…
Make time to tell someone you know…
“I’ve been changed by a heart defect”.
CHD Awareness Week 2010 February 7, 2010
Posted by Lisa in CHD Awareness Week, Hypoplastic Left Heart Syndrome, Moonbeam.1 comment so far
Today kicks off Congenital Heart Defect Awareness Week 2010.
From the tchin.org site:
Sometimes during early pregnancy, a baby’s heart fails to form properly, resulting in structural abnormalities known as Congenital Heart Defects. Although some defects are genetic, in many cases the cause is unknown.
Although some babies will be diagnosed at birth, newborns are not routinely screened for CHD. The consequences of a late diagnosis can have serious, lifelong implications, so it is important for the public to be aware of the signs and symptoms in newborns and children.
It is estimated that 40,000 babies with Congenital Heart Defects (CHD) are born in the United States each year.
CHD is the most frequently occurring birth defect, and is the leading cause of birth-defect related deaths.
Despite the fact that CHD affects approximately 1.8 millions families in the U.S., a relatively small amount of funding is currently available for parent/patient educational services, research, and support.
Official Proclamation From The Governor Of Ohio:
[click on it to make it a little bigger]
“What Can I Do?” “What Do I Say?” Revisited February 6, 2010
Posted by Lisa in Hypoplastic Left Heart Syndrome, Momma, Thank you.11 comments
Now that life and the world have had their ways with me for the last month or so, I have a little different perspective on this whole grieving thing. I realize that right now I am not the person most parents want to talk to or deal with. I have become a boogeyman of sorts because I represent the absolute worst-case scenario for heart babies and parents. I know how difficult it is for them to visit here now or with me IRL. I know that the potential for them to experience this same outcome is always in the back of their minds. I know. It can’t be helped. It’s an unfortunate fact of life for heart kids & their parents. Yet, there are a few heart moms who continue to visit and offer words of comfort and support, take the time to write beautiful posts about Gabriel on their blogs, and just be here. I am grateful for their presence at the House. I know how difficult it was for me to visit sites like this both before and during Gabe. In fact, I tried to avoid places like this if I could because, you know, then it wouldn’t happen to me. Right? Yeah, that didn’t work out so well. Now I seek out those angel baby sites, trying to find someone whose experience resembles ours, hoping that they were given the answers that elude us, yearning to make some kind of sense out of it all.
Remember these words of wisdom?
“It’s okay to not know what to say or not know the “right” thing to say.
Just say something.”
I have learned that saying something doesn’t always involve words. Sometimes there are no words and that’s okay. If you have to use words, a simple “I’m sorry” is sufficient. Really. Please don’t put either of us in an awkward situation by going any further. Otherwise, just the simple act of taking someone’s hand and/or making eye contact speaks volumes. It’s okay to acknowledge me with a smile or “hi” – I’ll still return the greeting in kind. A hug says it all. But please don’t shut me out. I might be the boogeyman but I don’t have cooties. What happened to my family is not contagious.
If you have said “If there’s anything I can do, just let me know” and then you are called upon, don’t weasel out of it. Plain and simple. Say what you mean and mean what you say. This is an incredibly difficult time for us and it is hard enough to admit that there are things we need, let alone ask for them.
If you have asked “How are you?”, be prepared to find out.
Please do not tell me that Gabe is in a better place. I know you mean well, but that just hurts me to the core because I’m hearing “He’s better off dead”. I refuse to believe that he’s better off dead than here with us.
I do my best to keep my emotions in check when I am out in public, but the fact is I am going to cry. I can’t help it. I never know what is going to trigger the tears.
Thank you for choosing to hang around the House.
Your support means everything.
In Memory Of Moonbeam January 31, 2010
Posted by Lisa in Hypoplastic Left Heart Syndrome, Momma, Moonbeam.16 comments
MOONBEAM
by Donna Lewis
Crossing over
Forever changing
You’re one of a kind
One in a whirlwind, divine
Little moonbeam
Let me hold you
Little moonbeam
I ask you
Let me in
Let me hide in this sweet thing
Let the willow walls enclose
Pulling my back straight
My feet straight
And I can laugh
I can laugh out loud
Who would love me better?
Little moonbeam
Encourage me
Little moonbeam
Pray for me
Little moonbeam
Discover me
Little moonbeam
Let me in
Let me in
The smallness
The smallness
And taking a deep breath
Up in the blue zone
And I can’t believe this
A joyous occasion
I wanna make it
Okay, I got a secret
Okay, I got a reason to be
Little moonbeam
Let me follow you
Little moonbeam
Take over
Little angel ray
Little angel ray
Little angel ray
Little angel ray
Little angel ray
Little angel ray
What I Miss Waking Up To January 30, 2010
Posted by Lisa in Hypoplastic Left Heart Syndrome, Momma, Moonbeam.4 comments
Remembering January 26, 2010
Posted by Lisa in Hypoplastic Left Heart Syndrome, Momma, Moonbeam.5 comments
REMEMBERING
by Elizabeth Dent
Go ahead and mention my child.
The one that died, you know.
Don’t worry about hurting me further.
The depth of my pain doesn’t show.
Don’t worry about making me cry.
I’m already crying inside.
Help me to heal by releasing
The tears that I try to hide.
I’m hurt when you just keep silent,
Pretending he didn’t exist.
I’d rather you mention my child,
Knowing that he has been missed.
You asked me how I was doing.
I say “pretty good” or “fine”.
But healing is something ongoing.
I feel it will take a lifetime.
Gabe laughed for real the first – and only -
time shortly before he went into surgery.
This is a picture of that magical moment.
The beautiful sound of Gabriel’s laugh
will live in my heart and memory forever.
My Shoes January 25, 2010
Posted by Lisa in Hypoplastic Left Heart Syndrome, Momma, Moonbeam.5 comments
I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad these shoes are not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some women are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has lost a child.
~Author unknown
Sunday Silliness January 24, 2010
Posted by Lisa in Momma, Thank you.2 comments
I love you all!!
Help yourselves!
The good stuff’s in the back 
[this post "inspired" by comments made on the previous post]
Three Weeks January 21, 2010
Posted by Lisa in Hypoplastic Left Heart Syndrome, Momma, Moonbeam.10 comments
Yeah, I know.
I’ve been avoiding this place because I was beginning to feel like that’s all I had to say anymore – counting the days he’s been gone, reminiscing how happy we were “one year ago today” about his arrival, and all that. The last thing I want this blog to turn into is a bunch of Melancholy Mondays, Tribulation Tuesdays, Weepy Wednesdays, Terrible Thursdays, Effed Up Fridays, Sad Saturdays, and Sorrowful Sundays. I mean, yeah, that pretty much describes life at the moment, so it serves to reason that it would carry over in my writing. But I don’t want to drag you through my swamp of grief every time you visit. Even though Gabriel was only here for four short months, we have so many happy memories of him and our time together. I’d like to be able to share those with you once in a while, too.
Today I want to share with you a very special memory created for us by the Child Life staff at NCH. As I watched them make this, I thought that I was going to be disappointed with the results. Boy, was I wrong!
a closer look:
When I opened the box and saw this for the first time, it literally took my breath away. It looked nothing like I had expected it to. It was so…lifelike. Gabe was just starting to discover that his hands actually belonged to him and could be used to pick up and move all sorts of things. He really liked to shake his rattles. He liked to feel the different textures of his lovie and blankies. He always enjoyed holding onto one our fingers. I used to let him play with my hand. He’d grab different fingers and push and pull my hand around.
I sure do miss that little dude.
