JOURNEY OF A SPECIAL NEEDS MOM

My friend Kristy (aka "mommy of amazing, gorgeous Dylan") recently posted this entry in her blog, and I wanted to share it with my family and friends. Her message about gaining new strength and wisdom through her child is beautiful and very true. Our children are the most inspiring and incredible teachers! Hope her words touch you as well and help you understand the journey of a special needs mom...

Assuming the Worst
I read a number of Trisomy 21 boards. Although I do not often respond or write in these boards, I’m a quiet observer looking for new info, updated news, perspectives, and insight by other parents of children with Downs. I recently read an entry by a new parent who wanted to know how other parents “did it” and found their strength. In other words, this parent was struggling with his/her child’s new diagnosis and was scared about his/her child’s future, both immediate and distant. To this parent, here is my response:

When Dylan was diagnosed with Down syndrome, I assumed the worst....how would people treat him, what would people think, what kind of future does he have, etc. I'll readily admit I envisioned the institutionalized and brought that to my house. I was naive, I was pessimistic, and I was angry when I saw a 17 year-old teenage mom smoking a cigarette while holding her "normal" and healthy child. I was more than angry, I was scared.

I assumed the worst in people. I had assumed they would be cruel. Dylan is only a year old, but during this short period of time, we have met some amazing individuals inside and outside the realm of the special needs community. Within the community, I found individuals that are strong, respectful, and worthy of admiration rather than the display of indifference I had expected. Just to give an example, Dylan attends "school" every Monday. It's not really "school" but a playgroup for special needs kids where they can interact and receive therapy at the same time. We have a wonderful teacher. "M" has committed her life to teaching children with special needs. She is genuinely encouraging, soft spoken and gentle, and one of the kindest individuals I've ever met. She is also an amazing mother to three children with special needs whom she adopted on her own.

Even the other new mothers that attend school with us are amazing. My friend, "A", who has a son with Charge syndrome always has a smile on her face. She doesn't see the child with so many complex and serious health concerns....instead she focuses on her wonderful child within. "A" exemplifies how wonderful a mother's love can be even through the strongest of adversities. "A" has become a wonderful friend, confidant, and an inspiration to me.

I also met "S". "S" is a mother to three beautiful children, one of which has Down syndrome. "S" runs the local Down syndrome Outreach program almost single-handedly and with wholehearted commitment. "S" has a very busy schedule with her three kids and yet still finds the time to organize a Buddy Walk, put together the Smiles of Life calendar, plan and arrange educational events such as cooking classes for the Down syndrome community...and these are just to name a few things she accomplishes. "S" is also an amazing mother with great faith. She has become a wonderful friend and brings such honest caring to her work (both as a mother and an organizer). I value her friendship, her devotion, and her great love for her work and children. Not to mention, she has admirable time-keeping skills! Phew. She is one of the most selfless individuals I have ever been able to call a friend.

I’ve even come to admire people who I don’t know on a personal basis but have seen in action on a professional level. For example, I have seen people like E from the Children’s Hospital Foundation give countless hours of tireless work to ensure funds are received so that all kids can receive quality medical care regardless of financial status (Uncompensated Care Fund). I have seen medical doctors that address Dylan directly when discussing his treatments with tact and honest care.

Outside the realm of the special needs community, I have witnessed total strangers admire Dylan’s loving personality and friendly nature. I have seen Dylan get swept up in a restaurant by the waiting staff and brought to every table so all the dining patrons could meet him. They had asked to meet him. We can't even go grocery shopping without some fellow shopper playing games with Dylan in the check-out line or making a friendly comment.

So my awful assumptions regarding other people were baseless. If anything, having Dylan in my life has shown me the best in people. These named individuals are just a few we’ve encountered this past year and a half. They are a source of strength and encouragement.

I expected people to identify Dylan by his Downs rather than by his individual personality. Admittedly, there is stereotyping that does exist…one un-named family member is no exception. She calls Dylan an “angel baby”. Dylan is sometimes defined or pre-determined by strangers before they get to know him..I often hear from these individuals how kids with Downs are so loving, gentle, etc. etc. But I have also come to recognize that these individuals mean the best and sometimes these comments provide an “educational opportunity” or “Dylan advocacy” moment. But my fear that people would be cruel has never materialized. For all the horrible moments with people, I can count them on a single hand. For all the wonderful moments with people, they are too numerous to count.

I also assumed the worst in myself. While pregnant, I did not envision myself raising a child with special needs and by having one, had I some how failed? How could the young mother of a healthy child who smoked throughout her entire pregnancy have been better than I who hadn’t smoked at all? What had I done wrong? And most importantly, by asking these questions and feeling my inadequacy, did that mean I loved my child less?

Dylan has already accomplished so much in his short life and against so much adversity so that all I feel is great pride. I love him. I love all aspects about him. I love watching him practice his signs in front of a mirror, I love that his favorite song is the “itsy bitsy spider,” I love that he falls asleep in his bouncy chair, I love that he craves his bath time activities, I love that he will instantly smile the moment he sees the camera, I love that he can turn a stranger in to complete mush with one wave of his pudgy little hand…..I don’t love my child any less. If anything, I appreciate him more knowing that he has overcome so much and yet seems up to the challenges ahead. I appreciate his mere presence after almost losing him to congestive heart failure and chronic lung disease. I didn’t fail by having a child with special needs. I gained so much more! Watching Dylan grow is another source of strength. Every new accomplishment is motivation to learn and push forward.

Dylan's diagnosis brought about a source of strength in me that I didn't know I had. I want people to know just how wonderful Dylan is and I'll do so by any way or means. I joined the local Down syndrome Outreach committee, I attend community meetings, I advocate, I educate....I became a warrior. Like any good parent, I became involved.

So I started my journey into the special needs community and raising Dylan assuming the worst of people and assuming the worst of myself. People were going to be cruel, I was going to be a failure, and most importantly, my son’s future was going to be dismal. Little did I know, I was going to be taught some very important lessons. Through my own education, I would learn that Dylan’s future is as bright as any child’s: he could marry, he could work, he’ll have his own ambitions and dreams, and he’ll be a contributing member of society. Dylan would teach me about people’s abilities to overcome adversity. I would learn to seek the best in individuals. I would learn that there are many sources of strength to continue striving forward...you just need to look for them. And I would learn that as a parent, I would be fine. The most important lesson: I would learn to expect the unexpected and not to assume anything. Congratulations on the birth of your child. I can't wait to hear about his/her accomplishments!