It didn't take long to discover the unusual nature of the Down syndrome community. Families who have a child, or loved one, with Down syndrome are automatically accepted into this community. It is ONE community. Yes, there are local groups, regional groups, etc. But the ONE community is something I had never experienced. On FB, Moms and Dads were congratulating us on the beautiful boy, not yet born. Families were encouraging us to ask questions, to seek answers, and to be excited about being part of this special group of people. Josiah was already leaving footprints in hearts, minds, and souls. I'm not sure we fully appreciated the acceptance, and sense of family the DS community affords.
When Josiah was born, we received care packages from Down syndrome organizations from all over the country (the ones we had reached out to). Cute onesies arrived in the mail. Baby blankets and tote bags, bearing the name of the DS organization who had mailed it, appeared in our mailbox. We received books, notes, birth cards, videos, and a plethora of informational materials on Down syndrome. We were thrilled, but still taken aback. By now, we were following other peoples journeys with DS. We were watching other children, blessed by an extra chromosome, and trying to determine what was 'normal' for these children. When were milestones being reached? Were kids delayed in all areas? What health issues were others coping with? We were trying to set our expectations to be realistic, all the while trying not to delay growth due to limited expectation.
When Josiah was three months old, we found ourselves in the local Children's Hospital. We were about to pass our three month old son off to a Doctor who would stop his heart, to repair it. Josiah, like so many, was born with heart defects. His had already caused pulmonary hypertension. Though they had hoped to wait until 6 months of age, the pulmonary hypertension spoke to urgency. If not repaired, Josiah would not survive. While Josiah was being operated on, Carl and I waited. That was the day that our full understanding of the DS community was realized. A woman, in the Midwest, had posted a status update to her Facebook page. In summary, she asked for prayers and positive thoughts for Julie, Carl, and Josiah (who was becoming a heart hero - a phrase often used, referring to children who have had open heart surgery). Yes, I had friended this woman on FB. Yes, I was watching her own beautiful daughter grow. The fact remained, I had never met her. She had never met me. She took the time out of her morning to remember our family & ask for others to remember us, as well. For the first time, Carl and I realized what an amazing community we had found ourselves members of. Every child who gains their family access to this special club, leaves footprints behind. They leave footprints in the hearts, souls, and minds of their families, but also the doctors, nurses, therapists, and specialists who work with them. They unknowingly leave footprints with the other members of the community.
The DS community rallies around each other, every step of the way. They are there to cheer on every victory, every milestone. They are there to say, "It's ok, Mom" when you feel like you've failed your child. They are there to give you tips on how to handle a school issue, the next IEP meeting, that problem with the therapist your child is working with. The community is made up of people from all walks of life, all socioeconomic backgrounds, all racial groups, all religious groups, all over the world. If you need advice, just ask. There is someone out there, who will offer their support, advice, or opinion.
As the DS community cheers every victory, and supports every day to day struggle, the 'family' tie that binds us rallies behind a member whose loved one has earned their angel wings. We laugh together. We cry together.
As Josiah was still recovering from open heart surgery, Carl & I cried for baby R who lost his battle with pulmonary hypertension. Later we cried for little E who became ill and was gone weeks later. We cried for little K who fell & didn't have the speech to call out for help. The list goes on and on. Over the years, we have felt the pain of our 'family members' who have had to say goodbye to their little ones. We have watched the leukemia diagnoses and followed the journeys: some to restored health, some who have earned angel wings. In the midst of all the smiling pictures, funny videos, silly quotes, and milestones, there are members of this amazing community facing what no parent should ever have to face.
The past ten months have been a dichotomy of feelings, as I continue to grieve for Carl. This past week, I have continued to see all the DS posts - the smiles, achievements, victories, funny stories, etc. Then there was that one! Little J who went into Cardiac arrest. He earned his angel wings. I don't know the family personally, but they are a part of the DS community family. As we learned that J passed, the community grieved. The parents don't know why their little boy was taken from them. They are seeking answers. I cry for them, as I know others have (and continue to do).
Our children, our families, our loved ones, our community, leave indelible footprints. Those footprints begin forming a legacy. Eventually, footprints give way to angel wings. I don't know why in the DS community, we lose so many at such a young age.
"You were sent to me on angel wings.
You were perfect from the start.
A love I never knew before,
you left footprints on my heart.
You touched and blessed my soul and mind.
Then you began to soar
through the clouds, to Heaven's gate,
on angel wings once more"
Julie Stone
(in memory of all angels born still, too early, or who left too soon)
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