Archive for February 2015

49 and Feeling Fine!

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Yesterday was a wonderful day! I turned 49!

My last year in my 40's!

I must admit, my very last birthday in my 40's was fantastic!
I got so many wonderful calls, texts, messages and Facebook posts from all of the wonderful people in my life wishing me a happy birthday.

Then there were these adorable birthday kisses sent my way! Oh my goodness!! These sweet babies and their sweet mama's made my day!!

And if that was not enough, there was this absolutely darling birthday wish that came via a text!! 
My heart simply melted. 
Carson, I love you sweet boy!!
Oh my goodness!!  
When he sings, "Di-i!" I just melt! 
Thank you to each and every single one of you who sent a birthday greeting along! 
You all sure know how to make a girl feel special on her birthday, and I cannot thank you all enough!

Ice Day Off of School

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These two ran in the house and said, "Mom, come out and watch us on the penguin slide!" 

"We have a penguin slide?" I thought to myself. LOL

And down they went! Like penguins!! SO cute!
Over and over!
Ice days rock! 

Why Sturgeon Fishing Matters

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If you follow me at all,  you had the opportunity to see me go on the adventure of a life time last weekend. Many of you are likely scratching your head, asking yourself, why would Diane willingly go Sturgeon spearing in the freezing cold temps of Wisconsin? I am going to attempt to connect all of the dots here for you! Beginning with clarifying I did not go to spear fish, I went to see this tradition first hand, so that perhaps it could help us feed more kids in Nairobi, Kenya.

As some of you know, this past week I got a front row seat (from my iPhone and computer) watching my friend, Katie Driscoll,  view of history in the making in New York City, when Jamie Brewer OWNED the runway, as a role model for ALL of us! No doubt about it, this was incredible!

It is something I will never forget for the rest of my life. Is this because I think ME will become a model? No, it is because it is one more door open for her, if she does dream of becoming one.  Now, thanks to Katie Driscoll, Carrie Hammer, and Jamie Brewer, ME has a role model on the run way too! 

She is not alone, I also have a role model in Jamie. Every person out there does. As a very dear friend of mine, Mary Wasserman said, "Jamie Brewer did not walk the runway in NYC... She ruled it!!" Amen Mary! Amen! 

She did rule it! And she showed all of us that we all can have that kind of poise and confidence to do the things in the world that matter to us! 

My husband, John, and I had an opportunity to attempt to do just that this past weekend. 

After following along on my friend's adventure to NYC, it was my turn to take an adventure. 

Again, for those who have followed me, you know that along with raising awareness, and asking for acceptance for individuals with Down syndrome, I have been a part of an incredible team feeding children in Nairobi, Kenya. The spouses of International Paper Company, along with the employees, volunteer to go out and collect items from all around the world, which we put on an online auction. $50 feeds a child for a whole year!

This is the eleventh year that we have all been involved in this effort! It started where many great things start, in the kitchen, when a few of the spouses were discussing with each other the plight in the slums of Nairobi, Kenya. 

When we started feeding the kids, only 20-30% of the children were attending school in the area we have been feeding. Of that number, only 1-2% of them were girls. Now, eleven years later, 97% of the children are going to school. They initially started going for the food. Now it is so much more. I learned this year that the girls are learning to farm, and sell their farm goods. The school lunch program is no longer air lifted in, it is grown locally. All of this happened because a group of incredible women could not sit on the sidelines and let this continue. I am proud that I have been able to join this group of spouses, now men and women, along with the incredible volunteer employees of IP, who do this outside their busy work schedule. We have made a difference. This is just one small area, and there is so much more work to do and so many more to be fed, but it is a start.

So, what does this have to do with sturgeon "fishing"? 

(It is actually called Sturgeon spearing, but because I was so naive, I called it fishing until the day I saw it first hand. Only then did I really know what I was getting into!)

Last summer, I was talking to some friends of my husband, who live in Wisconsin. We were discussing what Coins 4 Kids is, and why we do it. I was sharing how fun the auction is. Larry, our friend, turned to me and said, "Have I got an auction item for you! But you can only have it, if I get to take you and John first, so you can see what it is like."

Of course, he got my attention. 

He went on to tell us about his adventures in sturgeon spearing, and his offer to donate a guided trip. Knowing that it was a long way away, I enthusiastically said, "I am in!" 

Well, the day of reckoning arrived this past weekend. I was going to have shift gears from watching the glamour of a runway, to the frozen ice of Lake Winnebago! I was all in! 

John and I kissed the kids good bye, and boarded a plane for Chicago! 

From there, we drove to Fond Du Lac, Wisconsin to begin our adventure. 

Let me tell you, I did not go out on this ice with out screaming a little! Our friend was very patient with me as I asked questions, and he eased my fears. Sort of. 
I don't think I ever quite got over the fear of that ice, and personally, I think that is probably how it should be. I did just what I heard Jamie Brewer tell all of us to do last week, when she said, "Embrace the fear, and go for it!"

 These wonderful people invited us in to learn about their tradition....
 But they did more than that. They invited us into their hearts as well.

 And welcomed us into their family!
It is an adventure I will never forget. I am going to have fun watching this item on the online auction April 20-25th. My advice to the winner of it, "Embrace the fear, and go for it!" These children, will benefit from you doing just that!

Thank you to the entire Margelofsky gang for your hospitality and for helping us feed many more children in Nairobi, Kenya! You all simply rock!

Part 2 of ME's Journey

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Good can come from something seemingly not so good. I have learned that lesson my whole life, and it played out again after ME was born.

I have shared what happened the day ME was born, now I would like to share what happened after ME was born. It is really pretty incredible.

After ME had open heart, I wanted to see the medical professional who shed tears on ME's birthday. When I called her office to talk to her, they told me she was no longer working at that office. My heart sank. I asked if I could have information about where she went, and I was told they could not give that to me. 

So each year on ME's birthday, I decided I would search for her. It became a yearly tradition of sorts. Every year, I would google her name. Most years I came up empty. 

One year, I found her! I was so excited. I could not decide if I should call or email. I decided that it would be best if I call her. I dialed the clinic's number. My heart was racing. I did not know what I was going to say, I just knew I wanted her to hear my voice, and tell her about ME. 

When I asked for her, after the receptionist picked up the phone, my voice was cracking from the nerves. I am not sure why I was nervous. I was very excited.  She was such a kind person, and truly only shed tears because she hurt for us. So I should not have been nervous. But I was. 

The receptionist was very kind, but she told me that someone by that name was no longer at this practice. For all I know, it was a different person with the same name, but I was not even going to get to find that out. 

So again, each year, I continued my tradition of tracking her down. Surely I would find her. Once again, every year, I came up empty. 

When ME turned 7, I put a birthday photo of her on my Facebook page. I said something like, I wish the medical professional who cried could see her now. 

That statement ensued a conversation. My friends encouraged me to look for her again. I said I was done looking, and that I am closing that chapter in my book. My friends all came back with statements like, "Don't give up!" and "One more time!" 

After much encouragement, I decided I would try one more year. I googled her name. This time she did pop up! My heart raced again. I tried not to get my hopes up, just in case it was another dead end. 

My husband offered to take the kids to the movie, so I could get some stuff done to celebrate for ME's birthday. Instead, I typed out an email. I did not put ME's pic in it. I wanted to see if she would remember me first. I simply told her I had been looking for her, and I hope this is the right person by this name. I explained that she delivered ME, and I was just wanting to catch up. 

45 minutes later, I heard a bing. I had an email. That was not uncommon, because my email binged a lot. I decided to take a break from birthday prepping, and I checked my email. It was a response from her! Now my heart was REALLY racing! 

She remembered us well! She said that she remembered that day very, very well. For you see, that was the day that she realized that she delivered the diagnosis in a way that was probably not best for the parents. She had spent the following years teaching other medical professionals how to deliver a diagnosis properly. She said she had felt bad how it all went down, and hoped that she did not ruin ME's birthday. She had never delivered a baby with Down syndrome. So it was very emotional for her. We emailed back and forth. I sent photos. It was absolutely incredible! So while I was helping new parents as they got their diagnosis, she was advocating for medical professionals to be careful how they deliver the news. 

Today, we are friends. In fact, that very sacred moment, puts her in my book, as one of the most significant people in my life. I am honored to call her my friend. We are Facebook friends as well. So now she gets to watch our sweet ME grow up! And when she delivers the diagnosis to a parent that their child has Down syndrome, she does not have to go far, to see the joyful journey our family is on. Telling the parents they will be fine, like my other doctor said to me, is something she can say, and smile saying it. Knowing that she is watching a little girl grow up right before her eyes, who taught her a very valuable, life changing lesson! 

I will never forget the day I found her. For me, it was like closing a chapter, and opening a new one!

** If you are a physician, or you would like to give information to your physician on how to deliver a diagnosis to new parents, check out this physician's guide at  Down Syndrome Diagnosis Network and  the National Down Syndrome Congress Physician's Guide.

Why Leo's Journey Matters

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I have been inundated with messages, calls, conversations about Baby Leo. If you have not heard about this rock star baby by now, you will. Everyone wants to know how I feel about all of it. They want to know, what is my "opinion on what happened." I hope I can articulate what I am feeling, without tears, because I am going to be honest, this situation has made me re-live a lot of my own journey. So here I go!

If you have followed this story, you will read that Leo's mom and dad did not exactly agree on how this should all play out. Each have their own take on how this happened. I am going to keep this real. Cuz I always try to. This does not just happen in Armenia, this plays out all over the world. Yes, Armenia might be particularly hard, but if you stay with me on this, I might be able to connect some of the dots why it is hard all around the world.

There is nothing simple about the day you hear the words, "Your baby has Down syndrome."

So I would like to walk this out with all of you, from our family's experience.

When ME was born, we did not know a single person in the town we had just moved to.

Not a single one.


It was up to all of us, my husband and I, my three big kids, and my sweet baby boy Nicholas, to get through this time.

My family was 20 hours away. The day ME was born, all I wanted to do, was lay my head on one of my five older sister's shoulders, and let them tell me it was all going to be okay. But I was too far from home, and it was up to me.

The medical professional who delivered ME cried. The room went silent. Like she died. And when I say silent, I mean deathly silent. Immediately. I could feel my body go numb, the deeper their silence.

I knew.

I knew all through my pregnancy that ME had Down syndrome. My OBGyn in MS said something very profound  to me the day I told her I believed my baby had Down syndrome (in spite of the fact that the screenings said no). She said, "A mama knows."

I knew.

On the day she was born, the room went silent.

I thought she died. When I heard her cry, I knew, she did not die, the silence was the beginning of my journey. Later, one medical professional admitted she cried. On my daughter's birthday. She did not have to admit it, I already knew. I saw. I was numb, but I saw.

Next was the heart condition. That came right on the heals of Down syndrome. A new move, far from home, baby with Down syndrome, heart condition. It was all a lot.

At four months, ME went in to heart failure. Open heart surgery loomed.

I wondered if I would ever laugh again. No I did not wonder, I was sure I would not. This was all too much.

ME's heart was fixed, and that was the day I began to de-numb. I could feel myself returning to the pre ME days. At least a little, because to be honest, the pre ME days were now gone.

The attention ME garnered just from being born,  from the International Paper family in Georgetown, was amazing! They wanted to help so much. They encouraged us to create a support group for families in the Grand Strand area. I was still numb at this time. But I did all I could do.

Then I moved to Memphis. ME was 2. The busy-ness of a new non profit was behind me. Open heart was also behind us.

It had all been a lot.

I asked my husband if we could move somewhere, where I could sort this all out. I picked out our house, in the woods, where I could take some time to just take this all in. This is the place it all hit me. Like a ton of bricks. I fell. Deep. I knew I had to figure out a way to process all that had just happened.

So I started to blog, as a way to sort of get my voice out there. I was sinking. Surely someone would hear me. They did. They heard me. I wanted the world to know, my daughter is amazing. The world heard me. More than I expected.

The first day, there were 1000 people following my blog posts. By the end of the week, there were 10,000 following. The overwhelming never stopped. It simply grew.

What does this all have to do with Baby Leo? I do not live in Armenia. But I had a similar experience. I have spent many days since ME was born encouraging the world to understand that  parents do not have to have that experience.  It can be different. The Grand Strand Down Syndrome Society was formed because I had that experience. The IDSC was most definitely formed, because I had that experience.

Sometimes, we write things, and the world hears us. Some times, we say things, and the world hears us as well. Leo's journey matters, because the world is hearing about it. My hope is that good can come from all of this attention.

I have reached out to Leo's dad. I hope to reach out to Leo's mom. I want to tell them both, I understand. What I did not know the day that ME was born, was that the world would hear our voices. ME's and mine. Leo's dad and mom, take it one day at a time. Take a deep breath. You are not alone. The Down syndrome community is here to support you. One day at a time.