I was pregnant with my second child at a very busy time in my life. I was home full-time with my then two-year-old daughter, in the middle of online graduate school, I had a bake shop, I was running marathons, and my husband was in his second year of family medicine residency. We were very excited to welcome our second child, but we assumed we could continue life at the same pace with a momentary pause to get used to life with two little ones. And then, I went into labor.

 

One perk of being married to a doctor is being able to have progress monitored at home. We finally decided to head to the hospital when I was nearing 6cm. By the time I was checked in and settled in my labor room, I was 8cm. I soon learned I was progressing too quickly for meds, so I’d have to continue without the epidural I so dearly wanted. After pushing for three hours, however, it was decided our baby would be born via c section. I knew the drill, since my daughter had also been born through c section. Though I was exhausted and in pain, I felt a powerful sense of peace. As I relaxed into my surroundings, I allowed my husband’s colleagues, our friends, to do their what they did so well. Moments later, my husband joyfully announced, “It’s a boy!” An image flashed through my mind of my husband and the son he had waited for. Tears sat at the corners of my eyes. A boy. Samuel Thomas Amani Olsen. And then I noticed the silence.

 

Instead of bringing me my little Samuel, as we had previously agreed would be done, the doctor took my son to the warming table where he was immediately surrounded by the medical team. I requested they step aside when they were able so I could have a first glance at my baby, but when they did, I saw a silent newborn, arms flopping to his sides. Sam soon began crying, and I asked my husband to bring him to me. Wrapped tightly in his new receiving blanket, a hat set sweetly over his blonde hair, my baby boy opened his eyes as I spoke his name. It was in that instant, the moment his bright blue eyes met mine, that I knew our world was about to change.

 

It was confirmed within the hour that our son did, indeed, have Down syndrome. I was allowed to hold him for one, sacred moment in the NICU before returning to my quiet room down the hall. I don’t remember many details of that night, but I do remember we made a list of calls to close friends and family. We had a strong mixture of emotions. There are two calls I remember making in the wee hours of that first night. One was to my dearest friend, Jessica, and the other was to my sister, Becky. I remember those calls so well because, upon hearing our Samuel’s diagnosis, both cried. Jessica cried with me over the change in expectations, the unknown path ahead, the fear of what the diagnosis meant. Becky cried with me in joy that Samuel had been chosen for our family. She had previously spent multiple years working in a group home for teenage boys with special needs who didn’t all come from loving families. Two of my dearest friends, crying with me for very different reasons, but both were so necessary for my heart.

 

Our little man spent two weeks in the NICU as he learned to eat and breathe on his own. During that time, my husband went through a time of grieving. We both knew this was a healthy part of accepting our “new normal” and I encouraged him to take the time he needed. Once Sam was home with us and we began to adjust to being a family of four, I began to grieve. It was in the quietest moments, while we were alone together, Samuel cuddled up against my chest, that my heart ached. I wasn’t sad he had an unexpected diagnosis. I knew we could navigate that road. Rather, I felt it was my fault for somehow not protecting him. I was his mother, he grew within me, and I could not keep him safe. I cried for his future, all the unknowns, the things he may never understand or never experience. I cried because I was scared I wouldn’t always be able to protect him from the cruelty of others. There were so many unknowns. In those moments, I leaned hard into my faith and cried to Jesus. It was then I was filled with tremendous hope for all that Sammy had ahead. That hope is what got me through our early days and years.

 

Our Samuel is now five years old. Five! I can’t believe the time has gone so quickly and that we’ve had the opportunity to learn so much from him. We now take life at a different pace. We don’t judge by what the world says we need to be or do. We enjoy little moments more than we ever did before having Sam in our lives. We laugh over his hilarious performances, we get crazy frustrated at his endless NOs and crossed arms, and we celebrate over every new skill he masters.

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We recently gained a pretty unique perspective as parents of a child with special needs. Sam was born in the United States and received all of his early intervention there through the first four years of his life. However, in the late spring of 2017, we made the transition to living life in Kenya, East Africa. This had been our hope long before Sam was born. The night of his birth, my husband and I asked the question many have asked since. Could we still move to Africa? We had great faith from early on that we would still be able to make our move and that both of our children would continue to thrive. I’m incredibly thankful to have a Masters degree in education, giving me the confidence to teach both Ella and Sam in our home. Sam will soon begin speech over Skype with a speech therapist in the States, and his physical therapy is pretty constant just by walking up and down the uneven dirt roads here.

I have begun volunteering with a special needs clinic in the hospital where my husband works and teaches. Through this work, I have very clearly witnessed the intense stigma wrapped around special needs throughout East Africa. Here, when a child is born with any kind of difference, they are most often hidden away in their home. Parents and relatives are afraid of the shame such differences will bring to their family. Therefore, children with special needs do not leave the home to attend school, church, or even to go to the hospital. Clinics like the one here are working endlessly to reach parents in villages and share the message that differences are not shameful. Children with special needs have great potential. They only need access to the appropriate resources. Organizations are working to raise funds to purchase wheelchairs and walkers, leg braces and good shoes.

Related Post: International Prenatal Diagnosis in S. Africa

Our clinic offers free physical therapy to children with special needs, which also allows mothers the opportunity to meet other mothers in their same situation. As parents of children with special needs, we know that having a community of support can be the greatest tool to empowering our own children. These small groups of support are slowly growing in Africa as more parents reach out for help instead of hiding their children. Resources here are very few, and poverty is great, but word is spreading and parents are wanting more for their children. Just last week, I attended a gathering of mothers and children with special needs. There were 80 children in attendance with their caregivers. Eighty children who are not lying on a mat in the corner of their home. Eighty children whose parents are being encouraged and finding hope through the availability of resources. The stigma is changing, even if the change is slow.

I never imaged when my Samuel was born that he could be a part of this change in Kenya. But when we walk through the hospital, people watch him with great curiosity. Adults ask if he was born with Down syndrome, if it will ever go away, if he’ll learn to talk, what he likes to do. As he playfully interacts with everyone gathered around the hospital’s central fountain, I am able to answer questions. They see that he is thriving and how he is so dearly loved! He is a living example of the potential of those with special needs. I couldn’t be prouder of who my son is, how he lives life, and all that is ahead for him on this journey.

Related Post: Down Syndrome in Tanzania- Showing the world Possibility