My firstborn son was born with Down syndrome.
At the time, I thought my world was ending. Now I realize that my world was simply expanding.
At the time, I believed his world was closing in around his tiny, struggling frame. Now I recognize that his world is wide open, full of potential.
At the time, I was worried that he would not receive the kind of love he deserved. Now I understand that he garners more love than I had ever imagined.
Sometimes I get caught up in my “first-world problems” regarding life with Jake. I am frustrated by government bodies designed to help individuals with disabilities, but woefully inept at providing an atmosphere of support. I am consumed with models of EI (Early Intervention), and meticulously research which would be the most helpful for Jake. I enter in, if not on-line then in my own head, to the debates about therapies, assessments, diagnosis, and labels that could/will be put on my child. I argue for “person-first” language, and rally against the use of the “r-word”. And the list goes on…
All of these things are good. All of these things are valuable. I am passionate about advocating for my son, about providing him with the best, about giving him every opportunity, in order that he can grow and mature into the person he will become.
But today, I wept.
I did not weep for Jake. He is in good hands. He is in a great country, with amazing support systems in place. He is surrounded by people who love him, support him, and will ALWAYS be there for him.
I wept as I read the story of a little girl. A little girl in another country. A little girl who will never have access to the supports that Jake has access to. A little girl who has Down syndrome, but for whom the outlook on life is bleak. I was reading a monthly update letter from a family who is living and working among the Maya people of Guatemala, and this is what the letter had to say about this little girl:
“Having Down syndrome isn’t her only challenge. Her mother purposely sends her to her barely-funded government school without breakfast, believing her extra chub (often associated with Down syndrome) to be excess weight she needs to lose. The hunger exacerbates her inappropriate conduct in the classroom which is actually imitated behaviors from family members at home. The ugly truth is that she is being denied her basic human rights upheld by the General Assembly of the United Nations, leaving her not just mentally challenged, but also physically, psychologically and socially disadvantaged.”
And so I weep for this little girl, who will never have the opportunities that my child will have. And I thank God for my first-world problems, that, in their own right, are very difficult, but when put into this kind of perspective, seem more manageable.
And I ask myself, what role can I play?