Celebrating Milestones When Your Child Has Special Needs

Every year on my children’s birthdays, I tend to get a little bit sappy; my kids would probably say a lot sappy. I reminisce about the day they were born and playfully lament about how much they have grown. Maybe it started when my oldest, a former micro-preemie, reached his first birthday against all the odds.

Birthdays are a big deal in our house. We celebrate all day in a million different ways and there are always, always balloons.

Traditionally, I write a birthday letter every year to each of my boys. In this letter, I touch on things that I find beautiful, endearing and frustrating about that child. I include funny things they have said, things that they are interested in, and any milestones that passed that year in their lives.

I carried on this tradition effortlessly and happily birthday after birthday after birthday…until last year.

Last year, my youngest son was turning two. When I sat down to write his letter, I realized I had no idea what to say. Even worse, I did not want to write the letter at all and not wanting to write the letter made me feel guilty and feeling guilty made it even harder to find any words to write and eventually I just gave up and walked away.

My youngest son, Rory, is beautiful. He has bouncy golden ringlets and the biggest hazel eyes you have ever seen rimmed by dark, endless lashes. He smiles hello to everyone we meet and his smile is contagious. I have watched the grumpiest of faces crumble into reluctant happiness at the sight of him. He is pure joy and love and he draws people to him like moths to a flame.

Rory also has cerebral palsy and global developmental delays. At almost three, he does not walk or talk or pretend to have a tea party or put together a puzzle or use a spoon.

Ironically, out of all my children, I am most intimately acquainted with all that Rory is and is not doing at any particular stage of his development. I have lists and pamphlets and graphs of his progress month to month. There are assessments, hospital records, therapist recommendations, blood samples, pictures of his brain and an analysis of his DNA! Yet, when I sat down to write that letter a year ago, he still felt like a total stranger to me.

I did not know Rory’s favorite food or color or song. He did not really play with toys and he rarely got into any mischief. He had just barely started crawling and waving. When he would achieve something new, it always felt wonderful in the moment. However, at the end of the year, the expanse of blank paper to be filled with all of the things a toddler should be doing dwarfed his accomplishments. I did not know what to write.

In the end, I wrote three simple sentences:

Rory Emerson,
You are beautiful and you are loved.
You make me smile every single day.
Thank you for joining us.
Love,
Mama

In a couple of weeks, Rory will be turning three and in his third year of life, he has learned many new things. He is creeping on all fours, pulling to stand, and using a walker to get around. He communicates in his own ways, plays peek-a-boo, and loves to be outside. And he has definitely learned to get into mischief. The list of what he is not doing is still much longer than what he is doing, but there would be plenty to write about this year in his letter.

However, with as much as Rory has learned this year, he has taught even more.

This year, Rory has taught me to live in the moment. I used to spend a lot of time reminiscing about the past or speculating about the future. The letter I write to my children every year on their birthday is a perfect example of both. But I do not know what the future holds for Rory. I know what the past held and have no great desire to re-live it. I am happiest when I take each day at a time with Rory, so I stay there. This slows life down and makes me appreciate every moment for what it is. We delight in the small things, tackle challenges as they come, and learn new skills one step at a time.

This year, Rory has also taught me that parenting a child with special needs is different than parenting a typically developing child.

This probably seems obvious. Of course it is different! However, when I could not write my son’s birthday letter because my feelings about his birthday were complicated and confusing, guilt consumed me. In spite of his differences, I wanted everything to be the same for him. I have now come to accept that parenting Rory is different. Not bad, just different, and that is okay.

My feelings of love, joy, grief and frustration are all valid and can co-exist. We love and cherish Rory. We take immense joy in exactly who he is, but there is sadness there too and fear of the unknown. Watching the years pass by is both beautiful and painful. We celebrate the passing of time and we also wish time would slow down and let our little one catch up. We have learned, and are learning, that we can feel all of these things at exactly the same time.

This year, Rory has taught me the intrinsic value of people. At this point, Rory is not precocious, athletic or well-behaved. I have no report cards or character awards or soccer trophies to show off. I cannot sign him up for gymnastics or teach him his ABC’s or have him show off for family and friends in any of the usual ways we tend to do with our children. Rory is simply Rory. He is here. And we love him fiercely for it. The value he brings to our lives is not quantifiable, it is priceless. 

Last year when I had no idea what to say to my little boy on his second birthday, I believe now that I stumbled on exactly the right words. If I write a letter to Rory this year on his third birthday, I will say the same thing. This time, it will not be because I do not know what to say. It will be because it is all that needs to be said.

Rory Emerson,
You are beautiful and you are loved.
You make me smile every single day.
Thank you for joining us.
Love,
Mama

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