It’s been a couple of months since I’ve published a new blog post. It’s not for a lack of things to write about. I just haven’t been able to clearly articulate what I’m going through.
Andy and I found out in February (6 months after losing Jensen) that I am pregnant with our second child – our rainbow baby – a girl we have named Madeline. We are due in October.
For those who haven’t heard this term before, a “rainbow baby” is a baby that is born following a miscarriage, stillbirth, neonatal death or infant loss. In the real world, a beautiful and bright rainbow follows a storm (i.e., the loss of your baby) and gives one hope for brighter days ahead. The rainbow is more appreciated having just experienced the storm of grief in comparison.
When our son Jensen was diagnosed with Down syndrome (Ds), our first reaction was of sadness and disappointment. I remember finding out at work on a late Wednesday afternoon. I was 20 weeks pregnant and the doctor called me to tell me the results of my genetic testing. I quickly packed up my belongings, and left the building in tears. I didn’t go into work the following Thursday or Friday. Those first few days I was distraught and couldn’t stop crying.
When I look back at this time, I am trying to discern what exactly was at the root of these feelings.
If I’m being completely honest with myself, I have to say these feelings stemmed from the complete lack of information combined with a fear of the unknown. I also felt robbed of having a “normal” life. We had beliefs about what was normal and what wasn’t normal. Continue reading “Changing Our Beliefs About Down Syndrome”
We are less than one month away from kicking off our 321 mile adventure! We will be hosting our kickoff event on World Down Syndrome Day, March 21st, with our partner, the Down Syndrome Guild of Southeast Michigan, at Drake Sports Park located in West Bloomfield, Michigan at 5:30 p.m.
And YOU are invited to join us! We will be walking two miles. Mile #1 will be for Parker – our first friend who allowed us to dedicate a mile to him! Mile #2 will be dedicated to Chelsea Werner, a 4X Special Olympics Champion & a 2 X World Champion.
Whether you are on the receiving end of a random act of kindness or you are a witness to it, it can inspire you to do the same for others, or it can simply help your own heart. Paying this type of behavior forward causes a ripple effect amongst our social networks, and across the world.
This may sound idealistic and lofty to some. But I think it sounds lofty only because it is incredibly difficult to measure the impact that one an act of kindness has on a person and the ripple effect it can cause. It seems like an abstract idea. And it sort of is. But what’s wrong with believing in the magic of kindness? Continue reading “The Power of Kindness”
Grief – an exhausting, unwelcome beast of an emotion. But let’s be honest – it’s more than an emotion. An emotion is something like feeling “sad” or “melancholy.”
Grief is something much more profound. It’s something that never leaves you. It is a soul-crushing, all-pervasive presence that sucks the life out of you. It is an unbearable pain that has the power to break your heart and take your life. I mean this in the most figurative sense, but also in the literal sense (Google: Carrie Fisher and Debbie Reynolds).
Grief has now become a central part of who I am. In fact, it is in control more times than not. I’m hoping some day in the future this won’t be the case, but for now, it is the case. And I live with it all day, every day – day in and day out.
I was 17 weeks pregnant with my first child when I received a call from my doctor’s colleague, Dr. London (my doctor was out of town). He told me very gently that my prenatal quad screening test came back with a 1 in 21 chance that my baby had Down syndrome (Ds), otherwise known as Trisomy 21. It felt like my world had come crashing down. My heart was beating fast and I started to shake. I tried not to let him hear me cry as I listened to what he had to tell me.
We are excited to introduce our 321 Miles for 321 Smiles project! On 3.21.2017, in recognition of World Down Syndrome Day, we will begin a 321 mile journey with a very special purpose – to promote awareness about Down syndrome (Ds). We are calling our journey 321 Miles for 321 Smiles!
We will be walking, hiking and/or running 321 miles. Each mile that we traverse will be dedicated to a person who has Down syndrome. Each individual with Down syndrome will have his/her photo featured on our blog along with the reasons that make him/her smile. Our goal is to show others that individuals with Down syndrome are more alike than different.
Our journey will take place over the course of three months (March 21,2017 – June 30, 2017) and we will be traversing many different areas over the great state of Michigan. Once we start our journey, we will post pictures of each mile that we walked on our blog and Facebook and dedicate it to a person with Down syndrome.
Go to our official 321 Miles for 321 Smiles page for details and information about how YOU can help! If you have a family member that you would like us to dedicate a mile to, please email us at firstname.lastname@example.org.
The Year 2016 is a paradox for us. It was the best year of our lives, and yet, it was the worst year of our lives.
It will forever be etched into the history book of life for Andy and I. It contains many life altering moments – good and bad. I find myself reliving these moments and reflecting on how very quickly your life can change.
When we entered 2016, I can honestly say I was the happiest I had been in my life. I was pregnant with our first child. I was going to be a mother and Andy was going to be a father. By Christmas, Andy and I would be a family of three with a beautiful baby. I was on top of the world; the prospects of the Year 2016 held unlimited happiness for us.
When I started out with the idea of the Angel Tree, I wasn’t sure how many parents would allow me to honor their child. There are 140 baby names on this tree. I am so happy (is that the right word?) to do this in memory of their children during this holiday season. Yet when I stand back and look at this tree, and look at each unique ornament, I will admit – I get overcome with overwhelming sadness.
All of these babies – gone. All of these parents – devastated. Hopes and dreams utterly crushed. For me, knowing that I will never be able to spend a Christmas with my son brings me to my knees. Each year for the next 50+ years, I will always wonder what it would have been like to have him here. I will always wonder what it would have been like to have him wake up on Christmas morning to see if Santa’s milk and cookies are gone and to open his presents. We will never know. A piece of our hearts are missing. I know I’m not alone in this and that every parent of the babies remembered on this tree feel the exact same way. Although we can’t be with our babies each Christmas, it is so meaningful to have them remembered. And that is the purpose of the Angel Tree.