The School of Life

(Originally published in Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives, Edited by Kathryn Lynard Soper, Woodbine House, 2007)

The School of Life
By Ann Bremer

IMAGINE A CHILD AS THE DEAN of a college. It sounds funny, but that's exactly what my son is. When my son was born with Down syndrome, it felt as though someone had enrolled me in college: The School of Life. I didn't want to be in school, but my son was in charge. He knew exactly what I needed to learn.  

The first class I took was Expectations 101. This class taught me that there are no guarantees in life. It included information about mourning the loss of something you never had and crying harder than you've ever cried. I learned how to host a first rate pity party with only one guest: me. I gave a great speech titled, "This Kind of Thing Only Happens to Other People."  

That first class was quickly followed by others. Appearances 101 covered everything I needed to know about what a typical family looks like. After much study it seemed apparent that I was no longer the mother of a typical family. I then tackled the many assumptions I held about families of kids with special needs: The parents were patient and compassionate. They were advocates. They were saints. By the end of the course I came to the conclusion that many of my assumptions were incorrect, my lack of sainthood being the obvious indicator.  

Health 105: Since children born with Down syndrome are more likely to have special health concerns, I learned about the many medical problems my son could have. I studied diagrams of the human heart. I made mental notes about the symptoms of leukemia. I learned what an otolaryngologist is and how to spell "ophthalmologist." There was a long chapter on genetics and reproduction.  

When I felt overwhelmed by the number of credits I was expected to carry, I discovered a large community of people who were also attending The School of Life. I signed myself up for Support 104 and realized there were other new students struggling with their coursework just as I was. But there were many more who had already completed the classes I was taking, so I went to them with questions. Each and every one of them understood completely the difficulty I was having, and each assured me I would pass my courses with excellent grades. They also said my son was the best teacher I could have. I looked at the tiny baby in my arms and doubted that this could be true.

Acronyms 201: This class covered the many new acronyms I would need to know: ASD, VSD, PFO, GI, ENT, EI, PT, ST, OT, IEP, IIIP, ASL, PECS, SMO and AFO.  

Advocacy 203: When I first saw the title of this class I assumed it would require rousing speeches, fist pounding, and the making of demands on my son's behalf. It all seemed very intimidating. What I learned, however, was that advocacy could mean something as small as taking my son to the mall and letting him be a baby as unremarkable as any of the other babies in their strollers on a quiet weekday morning. The coursework did get more difficult and included lessons on how to speak intelligently to medical professionals and service providers. The amazing thing about this class was that I was continually motivated to do my best by one simple thing--love.  

Dealing with the Uninformed, or How and When to Educate Jerks 301: Thankfully this class was brief and only occasionally do I need to use what I learned. It taught me how to evaluate the asker of insensitive questions to determine the usefulness of explanation. I learned when to simply nod and smile and when to gently correct. This course also had a useful section titled, "Hold Your Anger Knowing that Life Will Deal with the Extremely Insensitive." It's a fact that The School of Life has many students who were once jerks. They struggle with their coursework, but ultimately become some of the best students because they must work harder than most.

Milestones 303: In this class I learned that milestones are simply markers on the road and that the goal is to reach the milestones, not to reach them faster than anyone else. Topics covered included how to help your child achieve milestones, patience, and how to properly celebrate when a milestone is reached. Included with the textbook was a package of party hats and noisemakers.  

When my son was two and a half years old, he decided it was time for me to get my master's degree. Although I didn't feel I was finished with my undergraduate work, he knew that an advanced degree would solidify what I had already learned. My son, whose symptoms stumped several doctors, finally got the blood test he needed at my recommendation because I had taken such good notes about the symptoms of leukemia in Health 201. He was diagnosed with acute lymphoblastic leukemia. I felt sorry for the parents I met of typical kids with cancer because they hadn't completed any preliminary coursework. Their entrance into The School of Life was far more traumatic than mine had been.  

My first two classes were Chemotherapy 501 and Bald is Beautiful 505. But the most important class I took in this phase of my education was Life and Death 503. It included information about suffering, accepting the possibility of death, and understanding that death is a part of life. There was a chapter in the textbook titled, "God's a Big Guy, He Can Handle Your Anger," and another titled, "Even if You Live to be Ninety-Five, Life Is Short."  

I am now in the process of writing my master's thesis. I'm told, however, that this won't be the end of my education. As my son grows I will be required to take continuing education credits. Some of these workshops will be difficult, but I don't fear the coursework like I once did. I now embrace what I was once afraid of. I even tutor new students. With gentle reassurance, I am able to guide students baffled by The School of Life. It gives me great satisfaction to pass along what I've learned.  

I would never have chosen to attend The School of Life, but that's where I've learned some of the most important things a person can hope to learn. I was taken to my first class kicking and screaming and now wonder why. Why would a person not want to have a bigger heart, to love unconditionally and with abandon, to be a better parent, to see all people as having equal value?

What a small person I was before this little child came into my life.

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