Some of you might wonder what Audrey does for fun in between all of her therapies. Her favorite thing to do is go to our local park, Edgmere Park in Garden City and ride the swings. Now Audrey does not get her height from me, she grew 7 inches last year and is so strong from all her therapies, that it has been quite a bit challenging to lift her and put her in the baby swings at the park. It broke my heart to take her to the park with Vivienne and not be able to put her in the swings!
So we were at a local property association gathering and we asked the Garden City Treasurer if he would consider putting in an adaptive swing for Audrey and all the other special needs children in our neighborhood. He didn’t even think twice about it, he asked if I could send him an email with a picture of the swing. Next thing you know I received calls from the town and parks administration and they said they would put them in ALL of the parks in Garden City! I was so thrilled! Finally we could go back to the park with their friends and both my girls could have fun!
I am so happy that I asked for this and am thankful for the overwhelming response from all the parents out there that said these swings have helped their children as well!
You can read this news story on my Video page. Audrey had a full page in the Garden City paper and on local websites!
Now all children of ALL abilities can enjoy our parks in our beautiful town!
I don’t even know where to begin with our George to the Rescue story. Jimmy and I were watching an episode one night because we LOVE the show and at the end George always says if you know someone in need of a rescue to write in. The kids were in bed and we were having a glass of wine and thought, why not! Let’s write in and see what happens. Jimmy and I are the type of people that love doing things for other people, so wanted to make sure that if we did get picked that our #audreystory would be told and know that if this happened, it could help millions!
Now keep in mind I lost my job last year and have been struggling to find my new career. It turns out that losing my job was the best thing that could have happened to me because I got to spend this whole year with my girls and I know I would never get to recreate some of these memories. We also know that once my severance stops (YIKES, it just did!) it will be harder to do the things we need to do to accommodate Audrey’s needs. I also learned that my heart is in doing something to help families with Special Needs children. I got my certification to be an Ongoing Service Coordinator for the Early Intervention program here in NY and hopefully help families in need.
Now back to #audreystory, being that she has microcephaly, which has been in the news every day because of the Zika Virus, I know that we could help millions of people. When Audrey was diagnosed 4 years ago there were very few stories on microcephaly and no one ever knew what I was talking about when they asked what Audrey had. So when we got the news and googled it, we nearly had a breakdown. There were all negative stories out there which inspired me to write my 2013 post that you have all read here. I have always said I do not want any parent to go through what we did when we got the diagnosis of microcephaly. We wanted to post a positive story and some direction on what you can do when your child is diagnosed with Microcephaly.
If you have read my prior posts, Microcephaly basically means a “small head”. So you can be perfectly fine and just have a small hat size or you can have Developmental Delays, which vary dramatically in every case. I know not one Microcephaly case that is exactly the same. So what do you do when your child is diagnosed with Microcephaly and severe developmental delays and the doctors tell you that they may not walk, talk, read, write, play or do anything that your “typical” child may do? First thing you do is get a second opinion and the next thing you do is surround yourself with positive doctors, family and friends that will help you have faith and believe that this is all going to be okay! Is it hard, yes! Is it discouraging sometimes, yes! Do you just want to breakdown and cry sometimes and have someone tell you it will be okay? YES! So that is why we want to help!
Look how far Audrey has come from her diagnosis 4 years ago! She was told she has a 1 in 7 chance of having mental retardation, cerebral palsy and seizures. Well we look at it as if she has a 6 out of 7 chance of not having those and we like those odds alot better!
So #1, get your child into early Intervention ASAP! This will only help your child and accept the services being offered, learn from the therapist and carry over their teachings when they are not with your child. Look into different additional therapies like, Intense PT, Aqua Therapy, Hippotherapy, slow treadmill therapy, music therapy, therapy dogs, sensory toys, anything that will help stimulate your child. And most importantly is BELIEVE in your child and have FAITH that they will walk, talk, run and play etc! Audrey is now a little over 4 years old and is walking and doing so well in her pre school at the Carman Road School! She is our inspiration and motivation every single day. I know that when she is older and graduating from college she will give a speech that will motivate any person out there. She can do it and so can you! Believe!!!
Now back to George! We wrote in a story similar to the above and spoke about the challenges that we have in our house. For example, Audrey still sleeps in a crib and she is 4, she is getting bigger and it is not that easy to carry her down the stairs to give her a bath and the basement where her play area is just ins’t safe enough for her to play. So George read our story, believed in us that we can tell this story together and help people diagnosed with not only microcephaly, but any developmental delay. Audrey’s story is inspirational and I hope you find that too!
So the producers came to our house and said that they were interviewing us to show to the NBC executives and George and that we were in the running to be picked. We were so excited, but a bit hesitant because we didn’t want to get our hopes up. Before your knew it George busts through the door telling us we were picked! We still didn’t believe it then and I am still finding it hard to believe as the reveal hasn’t happened yet but I am so hopeful that this will send a positive message of hope and that there are good people out there like George and his whole crew that get to help families in need!
So what can I say to George and his crew? Thank you from the bottom of our hearts, we will be eternally grateful and love that you are apart of #audreystory and my hope is that Audrey will Thank you herself in person one day soon! We love you George!!!
Please watch our George To The Rescue episode on Saturday April 22nd at 9:30am and on the Today show, Tuesday, March 28th between 9-10 with Sheinelle Jones. Both on NBC.
Yesterday, complete strangers surprised Audrey for her 4th birthday with a custom tricycle! This was made possible by a wonderful organization called; Share the Voice and the Malone Family. Jimmy and I were overcome with emotions as we were completely surprised! Audrey’s face says it all, you can see the Facebook Live Video on my page. We cannot thank Mrs. Malone enough. Her daughters, Jamie and Paige will forever live on through Audrey Paige’s smile every time she is on that bike. It is not just a coincidence that Audrey’s middle name is Paige and my husband’s name is James, we know you picked the right family and we are so deeply grateful and will forever remember this amazing gift you gave us.
We have so much faith and I know that this bike will help Audrey to grow stronger and when she starts talking, we will have her Thank you in person. For now know that your daughters and your whole family will forever be in our prayers. God Bless! And to everyone reading this, please take the time to find out more about Share the Voice at www.sharethevoice.org
I decided to write an update to my Audrey Story written over 2 years ago. With all the news about microcephaly and the Zika virus, I can’t help but give an update to all the scared parents out there. I know because I was one of them when my pediatrician told me my Audrey had microcephaly. How could that be I thought! I had a great pregnancy, C section delivery, she was my first baby and you are telling me there is an issue ? That is not what any new mom needs to hear. So after googling microcephaly, because who ever heard of that until now! I wrote a story a few years ago on my daughter and all of the positive, amazing things about her to give some moms out there hope.
Let me first say they do not know if I had the Zika virus, that wasn’t even a thought in the the US 3 years ago. But when I look back I was in Puerto Rico for our 1 year anniversary and I was pregnant but didn’t know it at the time. I remember getting bit by mosquitos so much down there but also back at home and used to say that mosquitos love pregnant women! And the doctors told me I must have been exposed to a virus while I was pregnant because it is not genetic. Makes me wonder now….
The message I want to send is one of hope and positivity. The most important thing a parent can do if their child is diagnosed with microcephaly is to get your child into Early Intervention (EI) as soon as possible. It is available for 0-3 year olds and is a life saver. This will become routine and you will learn so much from all of these amazing therapists . Learn from them and work with your child, the earlier you start the better! Read everything you can on different therapies, like hippo therapy, slow treadmill therapy, intense physical therapy, etc. Network with different families in your neighborhood and online support groups. There is a whole world out there of special families that were given these special children for a reason. Take help when people offer it to you and don’t lose yourself in the whole process, make time for your spouse and take care of yourself. Spread the word of what microcephaly is, there are so many different spectrums of it and we can all help each other. Most of all, be positive and celebrate all the little things that your child does, the clapping of hands, hugs, first steps and hold my breath…the word Mama! I am still waiting for that one but the day I hear it, you will see tears of joy!!!
Audrey is 3 now and is in a special school and has amazing therapists. She has come so far from her EI days but if it wasn’t for her PT, OT, Speech and Special Ed teacher should would have been so much further behind. They were a part of our family and I can’t thank them enough. Audrey is walking so much better now and you can see it in her face how determined she is! I think it is because she wants to keep up with her baby sister! I know Vivienne will look after Audrey and protect her out there!
Audrey walks, talks, runs and plays in my dreams so I know this will happen one day. She has taught us patience and appreciation of all the little things in life and I am forever grateful that we have been blessed with such a happy, smart, perfect little girl.
So please, all parents, cherish these moments, teach your children to be kind when others are different and never give up hope. Your children will surprise you!
