Isaac is now 9 months old. Here are a few things I’ve learned since his birth.
- A diagnosis does not equal value. Society, family, or cultural preconceived opinions may try and say otherwise. When we first shared Isaac’s diagnosis, the comments and unsolicited advice was painful. Reflecting back, I’m confident, these comments were not ill intended, but they were uneducated. If anything, a diagnosis, is just a characteristic. A characteristic that is part of our being in how God made us, and it is not anything to be shameful of, but rather a special characteristic of what makes us innately unique.
- Being present is a gift. Isaac has always moved at his own pace. His milestones look different. However, because his pace is different, it has forced us to tap our breaks and soak in the present moments. It took him 4 months before he smiled. For those first few months we eagerly waited to see his sweet smile. When he finally smiled, that wait, it was worth it!! These moments make us appreciate and celebrate every small joy and win.
- There is beauty in resiliency. When we first realized Isaac had Down syndrome, we knew he would need more individualized attention. I worried about how his diagnosis would impact our other children. Would they be jealous? Would they be gentle enough? To our surprise, our older two children have been obsessed with him since the day we brought him home. Our rambunctious son you can usually find him jumping all over the place, but with Isaac he is soft and always holding his hand. Our daughter, she’s like a mini mama and my biggest helper – singing to him, getting his paci, and telling him stories. They see all the therapy sessions and doctors appointments he attends. They may only be 5 and 3 but they cheer for him every time he lifts his head up during tummy time or grabs a toy. They see him pushing through the hard to achieve the goals set in front of him. By the sound of their cheers, you would think Isaac just won an Olympic gold medal. They are seeing the beauty in resiliency. They are watching, real time, that some things in life, you have to work towards and it won’t happen overnight. But if you keep working hard and you don’t give up, you will make your goal.
- You know your child better than any doctor or specialist. When Isaac was 8 months old we noticed his oxygen was declining quickly while he was sleeping. We rushed him to the ER to be evaluated. They evaluated him, gave him a breathing treatment, a chest x-ray and they decided to discharge him. I knew in my mama heart that he was still struggling to breathe. His oxygen had continued to dip anytime he descended into a deep sleep. I refused to be discharged. The on-call pediatrician was not happy about it. I had 2 nurses, a doctor, and a social worker try and convince me to just leave and come back later in the night if his stats didn’t improve. But I couldn’t ignore my baby’s signs so I stayed. After his oxygen dipped 3 times in an hour we were finally admitted and that one night stay turned into and 8 night hospital stay with an upper raspatory infection. Don’t let others doubt your motherly instinct. God has given us parents these instincts – use them.
- Community can be a safe haven. Our community has been so encouraging. Strangers have prayed for us when we were in the hospital. We have received doctor referrals and medication recommendations when needed. We have had several care packages sent with books, information, therapy toys, and blankets when we came home from the hospital. You are not alone. God didn’t intend us to live this life alone, he created church and community for life’s journey.
Isaac has changed our lives for the better. We see life through a whole new perspective. A perspective of gratitude, resiliency, and love. I’ll forever be grateful God trusted us with Isaac. God knows we are capable. He knew we could handle it; we couldn’t handle it alone. But we will be able to handle it with the him guiding us.