Saturday, January 18, 2014

Getting the ball rolling

A while ago I wrote a post about contacting the hospital where Anthony was born to share my story and give them ideas on how to properly deliver a down syndrome diagnosis. And, I did. . . well the first part at least. Two months ago I contacted the hospital and got the ball rolling... but then it came to a stop. I talked to someone there and she was very excited to set up a meeting with me to be able to  talk with the staff about my story and what steps they should take in changing their procedure. Sadly, I admit that I did not ever follow through with calling the hospital back to set everything up. It was a combination of a few things that held me back. Being a mother and going back to work takes up most of my time. I feel like I never have a free second to sit down and tie up any loose ends. But, that shouldn't be an excuse. I was honestly just scared. I don't consider myself an expert on how to tell families their child has down syndrome. I just know that I don't like how the news was delivered to me. It scared me to think that I would have to stand up and share my story with the hospital nurses and doctors, and that I wouldn't have much more to offer after that. So, that "big" idea was put on hold ...until last night.

I was on Facebook last night, as usual, before going to bed and I came across something that made me so excited. One of the down syndrome facebook pages I follow started their own digital magazine, and I was looking through their first issue. I saw an article about a mother in Iowa that started something amazing, and I knew that this was exactly what I was waiting for. In honor of her son born with down syndrome, she started making baskets filled with uplifting and positive information about down syndrome. She gives these baskets to local hospitals to hand to new families that welcome a child with down syndrome.

Once I read that article, I couldn't stop smiling. It was as if she was reading my mind, the idea was perfect. THAT is what I can offer to the hospitals! So, I decided to get in contact with her and figure out how she started making her baskets so that I could bring the idea to my area. I want to piggy-back off of her idea and use the same concept but make it my own.

It would have made the world of a difference to get a "congratulations" basket from the hospital, filled with well wishes and positive resources, instead of sad looks,an outdated informational packet, and a long list of what could medically be wrong with Anthony. It's not a good idea to leave the parents with limited information, because then they take matters into their own hands and turn to the internet. Yes, you can find amazing resources on the internet if you know where to look. I know when I first typed "down syndrome" into google I was overwhelmed with information and I almost had a panic attack with the growing list of what could be wrong with my son. Parents need to be told the positive part of their new life, not focus on what could be wrong. Any parent can tell you that no child's health is perfect their entire lives. There will always be something to worry about, as a new parent that's what it's all about, right? ha! But, seriously, it's not the time when you first meet your new son or daughter to have your head filled with so much worry.  Welcoming a new baby into the world should be a happy and joyous time!! In that same respect, welcoming a baby with down syndrome into the world shouldn't be any different.

Okay, back to the baskets! I know it's not going to be easy getting this project started. I need to make a few connections, and contact a few organizations to even get the idea in motion. ... I also need to think of a good name for the baskets in honor of Anthony, my biggest inspiration of all! I think I just wanted to write about it so everyone who reads my blog will know what is to come soon! I wish that Joe and I had the funds to just go out and buy everything I want to put in the baskets and start making them today, but we don't. So, I hope to start a facebook page this weekend as a place to raise money and ask for donations to start making these baskets. ( I even wrote into the Ellen tv show asking for help, I love her show so much and she helps so many people that I thought hey, why not?) Hopefully it wont be too long until the first family receives a basket, and they will know that there are people that care about their child, and that everything is going to be okay! (More than okay, really... my life is so filled with love I could burst!)

In other news..... Anthony has been growing so much it's not even funny! I feel like every day he surprises us by doing something new. Recently, he has been getting the hang of sitting up on his own! I am so so so proud of how hard this little man works. He also has been teething for the past month. So, needless to say, things have been a little hectic around here. A teething baby is no walk in the park. But, I can't complain because even though he is cranky... I can't hide how happy it makes me! Joe and I were reading in one of our books about Down Syndrome that babies with Down Syndrome might not start teething until 1-2 years of age. So, I will take all of the cranky moments with a smile on my face because it just reminds me that it really doesn't matter what is "typical" or not, Anthony will do things when he is ready. I love that little boy!
Teething with my Sophie Giraffe, so tasty!

Actually, I like my fingers a whole lot better! 

See Tigger? I told you I could do it! 

Practicing my balance on daddy!


  1. I absolutely love this idea. A friend of mine had a child with Down Syndrome (13 years ago now, but I remember her sharing this story with me). Everyone always told her sorry. It was a month until someone told her congratulations. When her friend said it on her visit, she was shocked. Her response back, "Congratulations for what?" Her friend said back "Congratulations on your baby boy!" My friend cried because it was the first time she had someone say something positive and true. That should have been everyone's response!

    Let me know when you need money/an address I can send a check. You are such a good Mom! He is a very lucky little boy!

  2. Hey Kelsey! PALS would love to help you with this idea! The Congratulations Project ( continues to deliver encouraging and uplifting letters written by young adults with Down syndrome to new families receiving a diagnosis - we've recently partnered with 1800 Flowers to also include bouquets with the letters! Let me know if you want to talk more - we'd love to partner on this effort!



  3. I too had a birth diagnosis. I was not given my baby to hold until they told me. The Neonatologist simply said, "We are 95% sure your baby has Down Syndrome. There will be a blood test to confirm, which takes a couple weeks. Do you have any questions?" Then I held her for what seemed like 5 min. before she was taken to the NICU. There was a packet on DS brought to my room. My OBGYN didn't even talk to me about the diagnosis. There really needs to be a change in the experience new mom's have when being told. It is like the elephant in the room that no one knows how to address. I love the gift basket idea. I also think if the person delivering it could have a conversation with new moms about the joy that is in store for them. That all of their feelings are natural, but in the end it will be okay, and they are not alone. I feel like I want to do something too, but it is so hard when you work and have limited time. But you've inspired me! At the next mom's group a representative from my local DS Assoc. will attend to get feedback. The least I can do is share my experience with her and see what they can do to help new mom's have a better experience at the hospital.THANK YOU for opening up! Kristina

  4. Great idea! I had a similar birth experience with my son! The pediatrician came in and woke my husband and I up, stood by the door, kept the lights off and said that "the baby" has Mongoloid features then was quiet... then said he was sorry! I knew when I held Gavin and saw him that he had Down syndrome and I knew what he meant but my husband was freaking! It was a shock to us and we could have used honest and real support instead of ignorance! I am going to bring this up to my DS group too!!!!