This is a blog about my little Jack. Jack was born on June 22, 2009. We found out 5 days after he was born that he has Down Syndrome, a genetic disorder. This blog is to update family and friends of what is going on with him and share any resources I come across about DS. Happy reading :)
Tuesday, July 19, 2011
Officialness
Lots going on in our little lives. Jack and I will be moving to Easton, PA in 6 weeks. WOW. I am really going to miss St. Louis -I love my job and have great friends here, but alas - love has called. I have just let my work know in the past week and now am on the hunt for jobs in Easton (hint hint - if any of you have connections). I am very ready to begin a new life with a fresh start. We will soak up our last weeks here -dining with friends, playing in the pool and trying to eat at every restaurant we love in the city. Froyo - Chavas- PI - Ted Drewe's - Mi Ranchito - the list goes on. When I moved here I was a very uncertain, self conscious 20 something. I couldn't be more different. The big city has toughened me up. So much has happened since I moved here. I have grown and changed a lot. This city has brought both incredible joy and incredible pain. We start a new journey and though sad to leave, I am thrilled to begin new. Friends I have made here will continue - I could never replace them nor let them go..they are family now - stuck with us forever. Lots of newness coming our way - new friends, new city, new house, new job, new therapists, new doctors, etc - things to completely overwhelm me when I think of them, but I know they are all very good. And love waits for us in Easton. And so we go. Jack will most likely learn to walk there and run and play sports in that small town - he will learn what cows and horses are - and most likely won't hear many gun shots. My favorite part is that Jack will have a brother and a wonderful man for a dad who is already crazy about him - tears roll even as I type those words. God has been gracious to us - very very gracious. It will all be good - I am certain of that. Wish us luck and keep us in your thoughts as we pack (hate!) and adjust to lots of change.
Sunday, July 10, 2011
Answered Prayers
For those of you who have followed this blog for the past year, you have witnessed a roller coaster ride for sure. This post will be a little more about our family and a little less about Down Syndrome. In September Jack and I were officially a couple. A couple surrounded by wonderful friends who walked us through this past year. Prayers have been prayed for security, peace, healing, hope, energy, life, forgiveness, wisdom and many many more things. I have prayed a lot...A LOT in the past year. And I started a tradition with Jack each night that I hadn't really done before it was just the 2 of us. I changed our bedtime routine. Our routine now is to read, sing songs, and pray. And in every single prayer I have prayed that God would reveal himself to my little Jack, that he would give me wisdom in the choices I make for us and that he would bring a daddy for Jack who would love him without condition and love me as well. I remember telling my girlfriends how hard it would be for a man to step into this situation. A single mom with a child with special needs. It seemed impossible. In February I reconnected with an old friend from High School. We have been in contact ever since and have visited one another and it's safe to say that what I thought impossible has been made possible. Jack and I went to visit him and his son last weekend and had a blast.
Gratitude doesn't begin to describe how I feel. I am sure more pictures will be posted and more updates, but for now I'll just say that Jack and I have been blessed and prayers have been answered in ways I didn't think possible. And little Jack is doing wonderfully. We have braces, tubes are getting placed on July 25th and his words, signs and gross motor are coming along quite well. I couldn't be more proud of him.
And here's one of the 4 of us:
Friday, June 24, 2011
Sweet Connections
Friday – lunchtime at work – went with the girls to sit outside. I love my co-workers. Each of them are wonderful and kind and hard workers. I am very blessed to work with such great people. We work at a Cancer Center and all do research for cancer patients – the campus we work on is quite large. It’s a medical school and hospital. On our way back to our building, I noticed a beautiful young lady sitting outside with what looked like her mom and another family member. Immediate connection. I know those slanted eyes. I know that smile and that nose and small hands and short legs. I know that disposition. She has DS and I had to talk to her. She had a tracheal tube because she has ARDS – a respiratory illness – and they had just seeing the doctor. I found out that she is 22 and loves to swim. She has a boyfriend named Mark that she loves very much. I told her how much I liked her pretty pink shirt and she responded, “you are too kind”. She was precious. I hugged her and showed pictures of my little Jack on my phone. I was so proud. Her mom told me how blessed I am to have him and that life is going to be filled with moments of overwhelming love and joy.
I can’t tell you the immediate bond I feel when I meet a family like the one I did today. Kindred spirits. We immediately know and share a crazy love and story. We know the challenges each day can bring and I could tell that this mom and I have the same outlook – there is more good than bad. MUCH MUCH MORE. And I could tell by the look in her eyes how much she adores her daughter. I love being a part of this little group of people. I love meeting eyes with another mom of a child with DS and “knowing” everything with one glance. We have both cried, laughed, prayed, labored and fought for our children on a daily basis. We have had sleepless nights worrying about therapy and medical procedures. We have cried when someone has said something offensive and we have worked endlessly each day to make sure our children know how incredible they are and how much we love them. I may be “all alone” in St. Louis, but when I meet women like her, I am reminded of a much larger family that we are a part of. It’s an honor to be a part of this family and I wouldn’t’ have it any differently.
Jack and his buddy Andrew
As parents of kids with disabilities we have a choice to make each day. To live life to the fullest, enjoying our children and celebrating the things that they can and will do or we can mourn something that we can’t change. I love my son and I choose to celebrate his life and his extra chromosome. There are def days for mourning and sadness, but those get less and less as the days go by. Most of our days are spent with much laughter and over-flowing love. If you are a new mom – be encouraged. You are in for an incredible journey – let yourself enjoy it.
Here is Jack with 2 of his buddies: Aiden and Andrew
PS – Jack turned 2 this past Wednesday!!!!!!!!!!!!! Birthday party tomorrow. Can’t wait to celebrate his life with many close friends!!
I can’t tell you the immediate bond I feel when I meet a family like the one I did today. Kindred spirits. We immediately know and share a crazy love and story. We know the challenges each day can bring and I could tell that this mom and I have the same outlook – there is more good than bad. MUCH MUCH MORE. And I could tell by the look in her eyes how much she adores her daughter. I love being a part of this little group of people. I love meeting eyes with another mom of a child with DS and “knowing” everything with one glance. We have both cried, laughed, prayed, labored and fought for our children on a daily basis. We have had sleepless nights worrying about therapy and medical procedures. We have cried when someone has said something offensive and we have worked endlessly each day to make sure our children know how incredible they are and how much we love them. I may be “all alone” in St. Louis, but when I meet women like her, I am reminded of a much larger family that we are a part of. It’s an honor to be a part of this family and I wouldn’t’ have it any differently.
Jack and his buddy Andrew
As parents of kids with disabilities we have a choice to make each day. To live life to the fullest, enjoying our children and celebrating the things that they can and will do or we can mourn something that we can’t change. I love my son and I choose to celebrate his life and his extra chromosome. There are def days for mourning and sadness, but those get less and less as the days go by. Most of our days are spent with much laughter and over-flowing love. If you are a new mom – be encouraged. You are in for an incredible journey – let yourself enjoy it.
Here is Jack with 2 of his buddies: Aiden and Andrew
PS – Jack turned 2 this past Wednesday!!!!!!!!!!!!! Birthday party tomorrow. Can’t wait to celebrate his life with many close friends!!
Wednesday, June 15, 2011
Overflowing
Watching Jack play tonight...he went from signing "water" cause he wanted some of mine, to pulling up to shelves to get toys, saying "bubbles" - bringing me the container of "bubbles" and then saying "open" - to bouncing a ball with me in the bathroom - cause the bathroom floor is the best place to bounce a ball apparently and who am I to argue with that :) - we worked on "1,2,3, Go" for getting him to bounce the ball - he knows and uses the sign for "go" but I just started introducing numbers and he is already - after 1 day - trying to imitate me with his little fingers. You can see him concentrating so hard to try to count 1,2,3 like Mommy. It's so stinkin cute and tonight I welled up watching him My sweet boy.
Then bath time followed by books. He signed "book" brought me 2 books and then said "open" - then he signed "twinkle twinkle" and we sang - and then he signed "spider" and we sang the itsy bitsy spider - then he crawled to the kitchen signed "milk" and "cracker". So we ended the night with milk and a few wheat thins. All of the things above he did on his own. I basically followed his lead and I was completely and utterly overwhelmed. My eyes filled with tears many times cause I am so stinkin proud of him. He is communicating with me non stop and I love it - I am beaming with pride and joy that he is my son. I love sitting back and watching him - I love that he looks for something that he wants, remembers where it is, finds it and then brings it to me. And I really love that when he signs "twinkle" or "spider" that he insists on being in my lap, cradled in my arms - cause momma's arms are the best place for songs. He will be 2 in one week. And the past 2 years have been the biggest blessings of my life because of him. There has been a lot of pain too, but so much more joy. I love, love, love my sweet, adorable son. No one will ever be more proud than me of him. I know he will do wonderful things. I know that our life will be good. I have the most wonderful 2 little hands to hold, and sweet face to kiss - my cup completely overflows.
Then bath time followed by books. He signed "book" brought me 2 books and then said "open" - then he signed "twinkle twinkle" and we sang - and then he signed "spider" and we sang the itsy bitsy spider - then he crawled to the kitchen signed "milk" and "cracker". So we ended the night with milk and a few wheat thins. All of the things above he did on his own. I basically followed his lead and I was completely and utterly overwhelmed. My eyes filled with tears many times cause I am so stinkin proud of him. He is communicating with me non stop and I love it - I am beaming with pride and joy that he is my son. I love sitting back and watching him - I love that he looks for something that he wants, remembers where it is, finds it and then brings it to me. And I really love that when he signs "twinkle" or "spider" that he insists on being in my lap, cradled in my arms - cause momma's arms are the best place for songs. He will be 2 in one week. And the past 2 years have been the biggest blessings of my life because of him. There has been a lot of pain too, but so much more joy. I love, love, love my sweet, adorable son. No one will ever be more proud than me of him. I know he will do wonderful things. I know that our life will be good. I have the most wonderful 2 little hands to hold, and sweet face to kiss - my cup completely overflows.
Thursday, June 9, 2011
Talking and Signing
Click on the link below to see Jack talking and signing. I am so stinkin proud of him!!!
YouTube Video of Jack talking and signing
YouTube Video of Jack talking and signing
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