Life Goes On, we all hear about how life gets in the way, but does it really? I think hearing Rachel’s words helped me realize that it isn’t getting in the way- it just keeps moving and sometimes it can be hard to fit all we need to do into a short amount of time, be it a day, a week or a year. It’s moving and it’s moving fast. From Rachel’s words below I hear her share in the learning process she experiences each day, her wisdom in these words are about embracing the lessons, learning from them and accepting what we don’t know to open our eyes to different solutions to our current situation. Best of all I hear her say give yourself some grace and time. Don’t be hard on yourself for falling down, for not being perfect the first time or knowing all the answers. Learn from and embrace the lessons of life.
Enjoy and please feel free to share with someone who may benefit from hearing Rachel’s story.
Life Goes On:
Evolution is defined as a process of change in a certain direction (merriam-webster.com, 2018). It is continuous and in my opinion, healthy. Ed and I often talk about how we have known each other most of our lives and how we have been through so many changes over the past 20 plus years. Past relationships that brought heartache and misery to both of us could have been avoided had we made different choices. Today, we both know that we wouldn’t be where we are in our marriage if we hadn’t experienced these challenges and difficult situations. Our life experiences, both together and separate, have shaped who we are today.
Making the decision to become a couple wasn’t hard but it wasn’t without conflict either. We were both recently out of long-term relationships, Ed had a 5-year-old son, we lived in different towns and we were an interracial couple. Fortunately, because our families had known each other for so long there weren’t many questions from either side about the other’s upbringing. Making the decision to marry Ed wasn’t a difficult one either. We had always been the best of friends, even during those long-term relationships, so it was a natural transition. We knew that we didn’t want to wait long to have children so we were excited to find out that we would be welcoming our first child together 9 months after our wedding. We evolved a lot during that first year. I graduated with my MBA, was a pregnant newlywed and then lost my job. All within 6 months. I was devastated. I remember thinking that this was the most difficult season of life I had ever encountered. We were going in to debt with no end in sight. We quickly learned that the world doesn’t stop turning when we feel like it is crashing down on us. Life simply goes on and we must adjust.
In retrospect, I feel like that period of our marriage was just preparation for Kendall’s diagnosis and our lives after his birth. We all have fears about the unknown. Change is hard. It is difficult to look beyond the scariness of the present moment to see what beautiful possibilities the future might hold. We were scared and worried and angry about what was happening to us in that moment. We weren’t confident in our ability to be Kendall’s parents. We hadn’t yet mastered the “ABC’s of Down syndrome.” I have often heard the terms acceptance, belief and confidence as the ABC’s of Down syndrome. We when received our diagnosis, acceptance was the first hurdle. It took almost a year. Belief and confidence came not long after each other, after Kendall was born and we became involved with GiGi’s Playhouse. We had to believe in ourselves and each other and we gained so much confidence through the relationships we developed because of GiGi’s. It is all a part of the evolution of parenting a child with Down syndrome.
While I was pregnant, I was constantly worried about the long-term future for Kendall. I was worried about what school would be like for him, what his adult life would be like and what would happen when Ed and I are no longer here on Earth. After Kendall was born, I realized that the immediate concerns were more like failed audiology exams, delayed milestones, horrible sleeping patterns and medical bills. Our direction was to address these concerns with every therapist, specialist, physician and insurance analyst we could talk to. We learned as we went, gathered and shared knowledge with our friends in the Down syndrome community and gained more and more confidence as time went on. Kendall has continued to show us his value, his worth and his strength as we grow as a family.
It seems like every 6 months or so, our direction shifts. Challenges are different and our goals change. Based on our experiences, we know answers to questions we had a few months ago, and we now have new questions for our new challenges and goals. As parents, we are always worried. Our worries just change as each phase of life passes. This is no different from parenting our neurotypical children compared to Kendall. We worry about different things for each one of the boys. Over the past two years we have worked hard to get Kendall to complete simple tasks, such as putting toy coins in the piggy bank, eating with utensils and using words to speak and express emotion. Currently, we are worrying over preschool and the IEP process. Soon we will be worried about each succeeding stage of school, puberty, the teenaged years and then the journey into adulthood and independence.
We will always fear the unknown. And that is okay. But we will take the experiences and knowledge we have obtained through each stage of life and apply them to what lies ahead.
Life will go on. And we will be better people for it.