What I Wish I Could Say to my Son

The summer is almost over in Massachusetts, and the kids will go back to school in a few weeks.  In many areas of the country, they have headed back already.

As much as I don’t look forward to returning to the rigorous school routine, there is a relief in knowing that the summer is coming to a close.  I have three boys, and our weeks have been filled with getting them to different places with their friends.  They have received invitations to sleep over, invitations to ball games, invitations to the beach, invitations to go fishing, and invitations to the movies.  That is, except for my middle son, who hasn’t received any invitations this summer.

I never get the opportunity to say to Davis – “It’s for you.”  I would give anything to be able to say to him, “This text is for you.  You’ve been invited to the movies.”  Or “This phone call is for you.  You’ve been invited to your friend’s house.”  Or “This invitation that we received in the mail for a birthday party – it’s for you.”  And as heartbroken as I am that I never get to say these words to him, I am even more saddened when he asks me who he is going to play with.  The answer is I don’t know.  At twelve, he no longer wants to play with his mom.

This is the most difficult part of having a child with special needs.  Although the medical issues, the school battles and the long-term concerns are significant, the real weight comes from lonely summer days, knowing your wonderful child deserves the social invitation that is easily extended to others, but that won’t be extended to him, unless you intervene.

So I will accept that responsibility.  I will make the phone call next week, and I will send the text.  I know a lot of children with special needs who would be happy to accept the invitation I can extend.  And I will ask all of the wonderful volunteers who are so available throughout the school year to remember us next summer, to step outside of the organized programs and know that we would love to see them across the break. If I’ve learned anything from being Davis’s mother, it’s that things may not always play out as I wish they would, but we’ve landed in a pretty amazing community, and there’s no need to go it alone.

If I Knew Then What I Know Now

I had a rough start when my son Davis was born with Down syndrome. A tsunami of emotions – fear, confusion, doubt, loneliness – flooded my heart all at once as my brain tried to triage dozens of questions that raced through my mind at the speed of light.

Now as I reflect back on those questions that I never spoke out loud, I am amazed at how far I’ve come. The mother who asked herself these crazy questions doesn’t seem at all like the mom I am today. And so with the love and experience I’ve gained in these past twelve years, I’d like to address her worries.  Here are the answers I wish someone could have provided to the desperate questions that haunted me at the time.

Question 1:  Is my life over?  Well, this depends. If you already have other children, your life was really over a long time ago, wasn’t it?  If this is your first child, yes, your life is over, but that has nothing to do with your baby’s diagnosis. As a parent, you’ve given your entire self over to the love and care of another individual. Your own eating and sleeping and self-care are no longer priorities. All of these changes come from having a baby, and if your baby has Down syndrome, it’s still the same for you.

Question 2:  Did I just get cheated?  All of your family members and friends have had “typical” babies and you feel this terrible thing has happened to you. Well, as hard as it may be to believe at first, you have received a gift. You have been given a light brighter than any light you’ve ever known…..the purest love, the deepest acceptance, a human connection different than any other you’ve ever experienced. Sometimes we put filters on that block out this light, while we process what has happened…..but as soon as you lift your filters, this little light of yours will be ready to shine.

Question 3:  Do I have to quit my job?   No. You will still need to fantasize about hitting the lottery before quitting your day job. In the beginning, you think you will have to stay home to take care of this baby with special needs and you will never again experience all the trivial things that used to fill your happy days. Well, be prepared: your life will return to normal fairly quickly and you will be complaining about your day job again in no time. Keep buying those lottery tickets.

Question 4:  Am I going to be taking care of a child my entire life?  I can’t answer this question because there is a wide range of what individuals with Down syndrome can achieve. What I can tell you is that 1 in 5 of all young adults still live at home, and 60% of all young adults receive financial support from their parents. So if you end up with an adult child living at home someday, it may, or may not, be your child with Down syndrome.

Question 5:  Is there any way out of this?  The answer is no. Sure, some small percentage of babies who have Down syndrome will be given up for adoption, but there are more families on lists waiting to adopt babies with Down syndrome than babies available – what does that tell you?  For the majority of us the right answer is to press on until we settle in. Very soon you’ll know loving this little human being is not something you will ever find a way out of.

So stay strong and continue on with faith that your life will be fuller than you had ever hoped for, and that you will have a deeper and richer perspective on what parenting means than most others.  And finally, forgive yourself when you look back years from now with embarrassment that you asked these questions in the first place.  You weren’t the first to struggle when getting the diagnosis and you won’t be the last.  It’s a journey that we’re all traveling as best as we can, day by day.