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.