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Thursday, October 31, 2013

Ten Years In

I've been doing this for ten years now.

I've been a parent to a child who has Down syndrome for ten years. A decade's worth of experience, yet I feel like I have no great wisdom or advice to give.

I experienced the roller-coaster of emotions upon realizing that my first born child has Down syndrome: through being in a fog, to guarding myself, to depression, to acceptance, to moving forward. Yet there is no way I could write a memoir.

There is nothing in my experience that would be overcoming anything and coming out the other side unscathed.

Even though everyone has their own story, there is nothing in my story of having a child with Down syndrome that would stand out.

I had no major turning point, but rather a slow day-by-day grasp of finding my footing of being a new mother and a mother to a child with a diagnosis.

I have one vivid memory of an 'a-ha' moment. Kayla was a newborn and I can't remember if we had our 2 week visit with the pediatrician at that point or not. I just remember trying to find something, anything, on Down syndrome. Something that would give me a glimpse into what this meant and what to expect.

I was in my room and picked up the Mayo Clinic Complete Book of Pregnancy and Baby's First Year that was sitting on my dresser. I found the section on special needs and Down syndrome. I can't remember a thing that was in the book about Down syndrome, but I remember it was the first time I came across Emily Perl Kingsley's "Welcome To Holland."

I know people either love or hate this poem. But for me, in that moment, it was what I needed to read. Maybe it was because I found it on my own and I didn't have it thrust in my face from so many people right after Kayla was born.

By the end of the poem I was crying (I'm sure postpartum hormonal fluctuations played a role in that, too).

Yes, when I read the line, "But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland." it spoke to me. It opened my eyes that I couldn't sit around and be depressed because I would miss out on the experience of being a new mom; the experience of this beautiful, adorable baby in front of me. So it did help give me perspective.

But here I sit after 10 years and I've heard over and over the usual cliches about being a parent to a child with Down syndrome and find that I can't identify with most of them.

I don't feel that Kayla was sent here to teach me a lesson. There is nothing that Kayla does with the intent and purpose of teaching me, or the world a lesson. She is simply a child, living her life. She does not exist so the world can learn from her.

She has not taught me to be more patient. Although I should be more patient, it is a 'lesson' that I've just resigned myself to not getting. I do get irritated and impatient with her; just as I do with Lucas.
I don't feel that having a child with Down syndrome has changed me as a person. I am still the same person I was before I gave birth to Kayla. The only thing that has changed is that I'm more aware of Down syndrome whereas I had no connection with it before her birth. Giving birth to her did not cause some seismic shift in my personality, in the core of my being. I am who I am and that didn't change just because my daughter was born with Down syndrome, anymore than it changed when I gave birth to my son.

I don't feel that having a child with Down syndrome has made me a better person or parent. I fail at being a parent every single day.

I can say that I can't imagine my life without Kayla, but it has nothing to do with Down syndrome. It has to do with the fact that she's my daughter and once someone important is in your life, of course you can't imagine life without that person in it. I can't imagine my life without my husband, my siblings, my parents, my son. It's not Down syndrome that makes me say I can't imagine life without Kayla in it.

She's a blessing in my life, but not because of having Down syndrome. Again, she's a blessing simply because she's my child, she was a very much wanted first-born child. She's a blessing because she's my daughter and I always wanted a daughter.

She hasn't taught me the meaning of unconditional love because she has Down syndrome. I would love her unconditionally if she was born without Down syndrome and I know she, and Lucas, love me unconditionally because I am their mother. Down syndrome doesn't play a part in understanding what unconditional love is; it's unconditional because we are a family.

My journey is not extraordinary. It's a journey like hundreds and thousands of parents, all doing the best we can with what we have and what we know.

There is nothing special and there are no great life lessons to be learned from my journey.

So, no memoir from me (there are some great ones out there though!). The single piece of advice I could give a new parent of a child with Down syndrome can be summed up simply and it is live your life. Live your life with your baby the way you planned to before you received that diagnosis.

Having a child with Down syndrome does change some things (school decisions, employment, independent living, planning for the future in a more precise way) but it doesn't change everything.

You have a baby with Down syndrome, and just like that old TV show ... Life goes on.

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lovemy3 said...

That is the exact same line that spoke to me. I didn't want to look around a few years down the road and think I missed out on those years because I was too busy mourning what I didn't have.

I wish I had more patience! I am more aware though of others and that others have a story, too. The only lesson Hailey is teaching me right now is "how to keep my house clean while living with a hurricane" :-)

Elsha said...

I'm only 20 months into this journey, but YES. this all resonates with me.

Cindy said...

I've always liked the Holland poem. And I especially liked your advice, 'Live your life with your baby, just as you planned to before the diagnosis.' That is brilliant. Sounds so simple but I don't think many people do it.

Anonymous said...

I am three and a half months in to the journey of raising a child with DS and I really appreciate hearing this.

Anonymous said...


Comberspud said...

I remember you sharing the Holland poem when Kayla was small and I thought it was beautiful.

I think you have just written your memoir Michelle, you are living proof for all those parents who are terrified of the prospect of raising a child who has Down Syndrome that actually, you don't have to be superhuman. You don't have to have special powers to love this little baby. Because that's exactly what you have, a little baby.

I had no experience of Down Syndrome before you had Kayla, and still don't really. However, you, and Kayla actually, have SMASHED the preconceived ideas I had about the condition. Kayla was able to do so many things that Aimee could do and at around the "average" age for doing them, infact there were things Kayla was able to do that Aimee hadn't quite grasped yet. That for me was a huge, Hey! Children with Down Syndrome can do the same things as children without Down Syndrome.

How encouraging is that for someone who's child has just received a diagnosis? Yes there will be things they will struggle with, and not every child is the same, but those statements stand for ANY child.

You are an amazing mum, not because Kayla has DS, just because you are. xx

Comberspud said...
This comment has been removed by a blog administrator.
Yo Mamma Mamma! said...

Beautiful post, Michelle.

Aunt Murry said...

Well said!

Meg said...

Beautifully honest. Thanks for sharing your life on these pages. You raise awareness in your words and actions with every post.

krlr said...

Love-love-love this!

Anonymous said...

Thanks for sharing this, it's so great to hear from a more experienced mom

Tracy Wimmer said...

This is great! Thanks for sharing! I have a 7 month old with DS and there is a 14 year span between him and my oldest. I think the biggest adjustment is fitting him into our busy lives. Life with him is just as wonderful and crazy as it was with my daughters.

Anonymous said...

Thank you so much for sharing this. I am just about a year in, and it has been the most amazing year of my life. I have thought all along what you said "live your life" and that's what I'm doing with my daughter! When I got the diagnosis while pregnant, it was mainly the fear of the unknown and wondering how I was going to do it, but I take it day by day, and we are doing brilliantly! :) It's so wonderful to hear others stories!!

ahoy.jenni said...

Too shay (however you spell it!)
Well said!
I think memoirs are written as one is closer to the end of the journey, and I think you are still at the airport, waiting to take off! I think you and Kayla actually have a big journey ahead with lots of lives to touch :-)

reflectiononkindness said...

Great post. It is very much true to my expereince. I am 14 months in and love my girl beyond believe but she is more alike than different. Thank you for sharing this reflection.