When you say nothing at all…

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It’s easy to know what to say when you are presented with life’s best moments.  When things are good and easy and predictable.  When someone gets a new job, or gets engaged or married or has a baby, finding the words to say isn’t hard.  Sometimes all you need is a hug or a smile, and your friend can feel what’s in your heart.

But when life doesn’t turn out exactly like you thought, it can be more difficult.  For everyone.

When we found out Lila had Down Syndrome four and a half months ago, just three hours after she was born, it was hard to know what to think, let alone say.  I will always remember the first words I said to my husband… “She is ours. We will love her.” I didn’t think those words before they came out of my mouth.  I just felt them. But almost immediately, it became very obvious that lots of other people had NO IDEA how to react to the news.  And who could blame them?  In life’s most difficult moments, most of us can’t find the right words.

But in the months since, I have heard some of the best words of encouragement that, I hope, will help me when I am faced with a friend who is going through an unexpected journey in life.

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Some of the best….

On one of her many visits to the hospital, one of my very best friends cried with me, held me tight and said, “Lila was sent here, to you, to teach us all.”  It was one of the first times I didn’t feel like we were alone in this unexpected news. We might be dealing with the shock in the most intimate way, but so many others who already loved Lila, were dealing with it in their own way, too.  And beside them, I felt better.

That same, sweet friend told me “Whatever you think and feel, it’s ok.  It won’t always be pretty, but you can’t blame yourself for those thoughts.”  When you’re trying to wrap your head around something like having a child with special needs and the twist and turns it means for the path you had in your mind, you can think some pretty unexpected things.  And feeling guilty down the road for those thoughts, only makes it worse.  You can’t help how your mind reacts to something like that, and you should NEVER beat yourself up about it.

I am blessed to have a family member who struggled right along side me when Charlie and I were dealing with infertility for almost two years.  She called from out of state when Lila was born and said, “I don’t want to say I’m sorry, because I ‘m not.  I know your not disappointed IN her, but FOR her.”  I felt, for perhaps the first time, that someone captured what was in my aching heart.  I didn’t yet know how strong and awesome and awe-inspiring that 6 pound 4 ounce baby would come to be, and in fact already was.  For that moment, still hooked up to IV’s and barley getting the feeling back in my legs, I knew this wasn’t what I had pictured the day before when I quadruple-checked my hospital bag.  And she was very right.  We are NOT sorry.

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An awesome co-worker who has a brother with special needs said to me, “His life is no less important than anyone else’s.”  I thought, “Yes! This is how I feel about my Lila!”  And it has only rung more true as I get to know this strong little girl that I get to hang out with every day.

In the months since, so many friends have reached out to us to tell us how inspired they are by our story and by our Lila.  Never hesitate to offer that encouragementton the families you know with special needs kids.  It often comes on those days when I am overwhelmed and close to feeling like a failure of a Mom.  You never know how a few simple words can lift someone else up, by a thousand miles.

It may be easiest to ask, “How are you doing?” but when you are juggling countless therapy appointments, hours of research on the internet of new feeding or PT techniques, or just the mounds of laundry and bottles that come with being a new mom, it’s easy to brush that question off with a quick, “Fine.”  I find the most comfort in those specific questions.  Like, “What is Lila working on in therapy this week?” or “How has she surprised you most lately?”  Not only does that make me feel like that person really wants to know how we are doing, but it feels good to be able to share without fearing that I am overburdening someone else with therapy talk.

Now for some of the worst…

Don’t tell me my daughter breaks your heart.  Even if you have the best of intentions, which I understand most people do. That’s certainly how I might have felt when I first heard the words Down Syndrome in the hospital room that was supposed to be where I spent the best day of my life.  But now that I am 178% in love with my daughter, extra chromosome and all, hearing that doesn’t feel good.  I know you mean well, but it takes me back to that moment.  And it makes me think that it’s all you see when you look at her.  And I now know with every ounce of my being that she is SO MUCH MORE than that.

Don’t say “She doesn’t look Downsy at all!”  I know what you mean.  You are trying to say she is beautiful. And, trust me, I agree. Who wouldn’t love THIS face?

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But that IS NOT the way to get your point across.  She is gorgeous because of who she is, not because of how much or little she resembles other kids with a similar diagnosis.

And finally, don’t say nothing at all.  There are a few people in our lives, and only a very few, that have withdrawn from us since Lila’s birth.  Maybe they are uncomfortable or don’t know WHAT to say.  But distancing yourself from this miracle that we love so much is not that way to go about it.  Sometimes it can get hard, but hey, life is messy.  My sweet Daddy has told me countless times over the years that life isn’t fair.  And he’s right.  But it’s also sometimes the sweetest in the moments just after we come to that realization.  Don’t desert those friends or family members who find themselves in this life.  One day, they will need you more than you will ever know.

I think my point is, it’s hard to bring up life’s difficult topics.  It’s hard to say your true feelings.  Often, it’s easier to talk about the weather and pretend like nothing is wrong or different or difficult.  But I truly believe if you stay silent, you are letting an opportunity go by to ease someone else’s fears or take a little weight off their shoulders.  Because the most important thing you can say to someone who has just learned that their child has any diagnosis, is that you will be there right beside them, whatever the need.  It takes a village to raise any child.  Our children just need a village full of people with even bigger hearts.  People like the ones that help lift us up when we need it the most. And for their words, I am so thankful.
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5 responses »

  1. That last pic took my breath away. 🙂 Wow. Thanks for your blog post. Well-written and important message. I have thought similar things about people’s response to our process these past few years. Will get in touch soon about finding a time we can bring you all dinner and catch up!

  2. All I know is my heart sings every time I receive a new post about Lila. I feel so blessed to share this journey with you, and seeing new pictures truly makes my day. She is such a darling who is touching the lives of people who have never even met her. She has definitely touched mine. Thank you for sharing with us.

  3. You guys are proof that everything happens in God’s timing. I know I hated those words during my infertility journey, because really, why was God waiting so darn long to send me my baby?!?! But now, I know that I wouldn’t be the person I am if I wasn’t A.J.’s mama. I needed to wait for him. And you guys were clearly waiting for Lila to join your little family and teach you all sorts of things you never thought you’d ever need to know. Thanks for sharing your journey with us!

  4. What a lovely blog and I am so grateful that parents like you and your husband are blessed with this beautiful little girl. She will bring you such joy because you already accept her and what she will teach you. I have a special needs brother who is now in his 40s and he had truly blessed and enriched our family in so many ways. We are a much stronger and kinder family because he is our brother. Not that it has been easy but he has made us such better people because of it and we have met some amazing people because of him. Like you said so well, I am sorry for him because his life is different in many ways but never sorry for us. I have so many great stories about growing up with Stephen and the laughter and fun he brought to us, I think we would have grown apart if it wasn’t for him. The sad part was how some people have reacted, there are some really dumb people out there. When I was growing up, he was my litmus test for people, if they couldn’t be kind to him, I didn’t want to know them and I think it saved me a lot of pain and false friends because eventually these kinds of people wouldn’t have been nice to me either. If I lost friends because of him, they weren’t true friends in the first place.

    Some people want the story-book world and can’t deal with anything that doesn’t look like it came out of Disney. They react harshly to anything that demands any kind of patience or kindness from them because they don’t have it in themselves to give and don’t like to be reminded of it. It is their loss if they cannot see the magic of these kids. These wonderful children remind us every day of how to slow down and appreciate the simple basic things that count – family, friendship, health, kindness, compassion. They live life on a more basic level but maybe in some ways, we should be more like them. So much of our sophistication is just a way to put up walls and put people down and these kids remind us every day of what truly matters.

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