"The Little Things" A Poem For My Son

To my son, who continues to show us each day the beauty of enjoying the moments. 

The Little Things

by Katie Baker

When I first held your body against mine

I could not help but wonder who you’d be.

Would all my dreams for you happen with time?

The unknown came like a curtain on me.

We took you home and the thoughts still went on,

All of the “hows” and the “whens” and the “whys.”

I’m ashamed, it’s true, when some hopes were gone,

But then you’d show us you’re full of surprise. 

And we learned the surprises came each day

In all of the little things that you do.

We learned to slow down and love the new ways

That the world is conquered each day by you!

So dream big, love hard, laugh often, play and sing, 

But keep making your mark doing the little things.

To My Husband on Father's Day

Dear Eric,

It is truly amazing what a year in life does to a person, and two-fold to a couple. Last Father’s Day seems like a blur - a day spent with family, laughing and playing with Rachel and her cousins. But there was also the worry and fear of the unknown for our son. What would fatherhood be like when he came? What would our family be like? One year later, as we celebrate you again, I can say truly that fatherhood has never looked so good on you! You were always patient, kind, silly, gentle, and loving toward Rachel. And now that we have Mark, I see those same qualities in you magnified. Your love for our children has never been stronger or more palpable. Your devotion to them is noted by anyone who meets you. Your pride in being their father is unmatched. 

  

I know that there have been hard days. There has been worry and fear. There has even been sadness. I know that there will be more of those days, and that is simply the nature of living life. But if there is one thing that I am certain of it is that you will love us more everyday and that your love will be felt in every thing that you do. Your positive attitude and drive to make the most of each day is infectious, and it is how we as a family are able to get through the hard days, the ups and downs, the sleepless nights. 

You are an amazing father and husband. I am so grateful that you chose me to be your partner, and I am even more grateful and blessed that God chose you to be the father of my children. Happy Father's Day, Eric. 

Love,

Katie

And So They Say, "It Takes A Village"

We have all heard the adage "it takes a village to raise a child." Maybe you have even read the book by Hillary Clinton with the same title. And while it is a general truth, I never imagined that a person would ever quote that proverb to me in reference to my own child. Yet, it was one of the most defining moments of my pregnancy with Mark.

We had just moved from the eastern shore of Maryland back to our hometown. I was six months pregnant walking into a new OB office to transition our care. I cannot blame her, the OB, when she came into the room seeming slightly frazzled being the initial provider to see me in all my high-risk pregnancy glory with half of my medical records missing (despite being assured by the previous office that my records had been sent). We talked about me, our diagnosis, our perinatologist and his current recommendations for monitoring. Then she asked a very appropriate question: "have you contacted any local support groups?" I told her the truth: no, I had not. And then it came, that blunt statement that rang in my ears for days: "well, you should. It takes a village to raise a child with Down syndrome." I'm pretty sure that I choked on the air. A village to raise my child? "Who does she think she is?" was my immediate thought. I remember leaving in a huff. I was angry. Angry and defensive. "We can do this all by ourselves, she doesn't know us at all," etc. I fumed for the next day or two, venting to everyone I could think of.

But when the haze of my anger subsided, I did what I try to do when I feel like I may have (slightly) overreacted: self-reflection. Why was I feeling so angry about her recommendation? I was angry because I knew that she was right. We could not do this alone. Not if we wanted to be the best parents that we could be. We needed a community, a group of people around us with intimate knowledge of what we were going through because the truth is that other people can try to sympathize and be compassionate, but the only people who really "get you" are the people who are living your reality. And that's the same with any group of people who share a similar life experience, set of values, religious or political ideology. Birds of a feather flock together, strength in numbers, and all those good old sayings.

And so, humbly, I contacted the local support group. It was not easy and it was scary, but we met a group of people who have become a lifeline for us. They understand us in an intimate way. The rollercoaster of emotions, the challenges of medical care, the choices about work and home life that need to be made when having a child with special needs.

We talk a lot about the people who support our kids developmentally - the doctors, therapists, educators, advocates. All very important. But I want to say to the people in my life who have been there for us in the trenches, guiding us along in our journey, that I am so very grateful for you. Grateful and blessed to know you, to be inspired by you, to be loved by you. Knowing you has made all of the difference in our journey, and I am thankful that we will be hand in hand watching the sunrise over all of the mountains that our families climb because we will be there to support each other for our children. Because we are a village.

A Day In The Life of Mark

With "Mark" all over the page, it's about time that we start posting about our little guy. Mark was born on September 15, 2017. He was born at an academic center due to the concern that he may have a congenital heart defect called coarctation of the aorta. In fact, approximately 50% of children born with Down syndrome (Ds) have congenital heart defects, the most common of which is the AV canal defect. A lot of prayers were answered, and Mark was not born with the coarctation, although he does have two small atrial septal defects, which are holes between the top two chambers of the heart. We brought home a healthy baby three days after our NICU stay, and our adventure began.

Mark is nearly 9 months old now and his a thriving, happy little love nugget. He has a sister who just turned three, and her name is Rachel. Rachel loves her little brother dearly. She calls him "Markie," and she is a very doting sister.

Rachel and Mark playing together.

Now, it all sounds so perfect, but our journey to this moment certainly was not always so bright. Dealing with a Down syndrome diagnosis takes time. Time to grieve the loss of the child you thought you were going to have. Time to process all of the information (which is impossible because there is just so much), and compartmentalizing so that you can do all of this while also taking care of an infant with all of the typical baby issues - (not) sleeping, eating, changing...(not) sleeping. There are a lot of appointments depending on the health of a baby with Down syndrome. We see Mark's pediatrician, who is a fantastic Nurse Practitioner, for routine visits and also sick visits, such as when Mark got influenza A and croup. We also see several specialists including: cardiology to monitor the ASDs; an ear, nose and throat specialist to monitor hearing in conjunction with an audiologist; and an ophthalmologist to monitor eye sight and a condition called dacrostenosis, which is a narrow tear duct.

Also on our team are our rehabilitation professionals, and they are incredibly important to Mark's development. We have a physical therapist and a developmental specialist who come from the county education system to work with Mark. They are part of the Early Intervention services that individuals with conditions such as Mark qualify for based on the Individuals with Disabilities Education Act (IDEA). In addition to these free services, we also take Mark for outpatient therapy services including physical therapy and occupational therapy with "The Brittanys," as we fondly refer to them. Our team of rehabilitation specialists are truly amazing! They help us to learn how to best stimulate Mark and work with him in creative ways to help him progress developmentally to include gross and fine motor development, as well as speech and language.

Mark working on core strength and upper

body strength in physical therapy (PT) with

Ms. Brittany

Mark working on his fine motor development in

occupational therapy (OT) with Ms. Brittany

It may all sound overwhelming, and some days it is. It is a lot of time on the floor playing with toys to engage him to practice various skills and work certain muscles. It is a lot of time in the car going to and from appointments. It is a lot of information to process some days depending on what we are doing, what recommendations we are receiving, and who we are speaking to. Some days we are tired. OK we are always tired. But that's what it's like having two young kids! And that's alright, its part of the process when you choose to have a family. And for those of us who are chosen to have a child with Down syndrome or any special needs for that matter, we do our best to take it in strides and enjoy the "little extra" time it may take for our special kids to do certain things.

Mark is a very typical baby: he is very happy; he loves toys that crinkle and make noise or have flashing lights; he loves to put things in his mouth; sometimes the car is the only thing that gets him to take a nap; he loves to snuggle with just about anyone who wants to give him a little lovin'. Mark does need some extra help with things in terms of his gross and fine motor development, and our therapists have helped us to understand what his strengths and weaknesses are. They help us to get creative and use different tools to encourage him. Like all children with Down syndrome, he works really hard. That is something that makes you feel proud as a parent, watching him master new skills knowing that your typical child did those things without any difficulty and, quite frankly, sometimes without you noticing or realizing the importance of doing a particular movement. And that is why we are part of "the lucky few," because Down syndrome has helped us to appreciate the little things that we took for granted before. So a day in the life of Mark is making a mark on us in more ways than we could ever know.

Greetings!

The me a year ago would be very proud of the me that I am now. Not only did I imaging then how enriching and fulfilling it would be to be Mark’s Mom, but I never would have believed that we would be inspired to start our own blog about our adventure being Mark’s family. Our goal is to share with you what we are learning along the way in order to educate others about Down syndrome. In doing so, we hope to raise awareness and thereby improve the lives of those living with Ds in our communities through acceptance, respect, and appreciation for the unique abilities and perspective that each one of us has to offer. There is a lot to learn and a lot to share, and our blog is a work in progress. But hey, aren’t we all? So thank you to everyone who stops by to read about Mark, our family and learn more about Down syndrome.