Carly's Golden Birthday!

Tomorrow — May 13, 2011 — our youngest daughter Carly is 13 years old! She’s going to have a sand castle birthday cake because she loves swimming. I might even add an icing drizzle this year. Usually, I try to minimize the sugar that can upset her system but because it’s such a special year and because continued healing has made her less vulnerable, we’re going to cut loose and live it up!

Birthdays for the parents of a child with special needs are often a bittersweet celebration. Some years are harder than others and sometimes at unexpected moments or for unexpected reasons. After Carly was diagnosed with Angelman Syndrome at 2 1/2 years old, Larry and I began to notice an ebb and flow of emotions as each birthday would come and go. These are some of the ways we make Carly’s birthday experiences sweet for the whole family.

· Do something to celebrate the day that brings encouragement for each member of the family. Birthdays are usually focused solely on the person having the birthday. In a family with special needs, the celebration may need to extend blessing to the whole family, especially if it’s a year that has been more challenging or when someone is struggling with more grief than usual. I like to survey each member of the family with this question: What is one special way that YOU would like to celebrate Carly’s birthday this year?

· Honor the feelings and expectations of the siblings. Over the years, I discovered that Carly’s siblings felt sorry for her if I didn’t put much effort into her birthday. My justification for reserving my energy or downplaying the occasion to avoid triggering my grief was that Carly wouldn’t notice whether we had a party or not. I didn’t realize that her sisters would care. They wanted the party and needed the family celebration experience more than I realized.

· Stack the day with her favorite simple things. The simplest things that bring Carly joy can be so easily taken for granted as part of the routine. But when it comes time for her birthday, we stack the day with as many of those things as possible. She gets to have a bath, go on the swings, eat more fruit, enjoy a chicken and veggie penne pasta dinner, play Tickle, snuggle up for an episode of Veggie Tales and dance with the whole family for a while all in the same day!

· We give Carly the “ROYAL birthday bumps!” This is a tradition I learned while growing up in Canada. The bumps can take many forms from an affectionate spanking representing each year in age to a full-fledged bouncing on the bed. Carly can’t appreciate its meaning but certainly enjoys the rough-housing! Greeting Carly in the morning with such a silly start to the day sets a helpful tone for Larry and I. Standing on each side of her holding her arms and legs while bouncing her like a sack of potatoes on the bed is a joyful metaphor for the partnership we share in parenting her. Those giggles (and sometimes tears as we lock eyes across the wiggly bundle of smiles) are like a healing salve to our souls.

· Spend some time before the big day bearing my soul with Jesus. One of the most valuable ways I’ve learned to prepare myself for the big day happens in the few days or even weeks leading up to the actual birthday. It helps me to sit down a time or two with my journal and prayerfully make a list to God of all the things on my heart about Carly — hopes, dreams, longings, disappointments, discouragement, challenges, fears, ways God has surprised us with gifts from her life, things I am grateful for about Carly, needs (hers, mine and ours), and things I’m excited about as it relates to parenting Carly. Sometimes I will sit down at our piano and tearfully sing songs that remind me of God’s deep love for me. These special one-to-one times with my Savior are a precious freedom of expression and bring comfort to me through the Holy Spirit. Giving my grief full release with the only One who fully understands and doing it prior to Carly’s birthday means that once the day arrives, I am more fully able to genuinely celebrate. In fact, my celebration becomes as much about who Carly is as it is about who God is — and that is truly a gift!

Psalm 139 expresses a couple of very important things for anyone celebrating a bittersweet birthday. It reminds us that God knew EXACTLY what He was doing when He carefully, lovingly and gorgeously created each one of us. It also reassures us that God is fully present to each of us and is deeply concerned about our most intimate thoughts and feelings.

Highlights from Psalm 139…

Where can I go from your Spirit?

Where can I flee from your presence?

If I go up to the heavens, you are there;

If I make my bed in the depths, you are there.

You created my inmost being; you knit me together in my mother’s womb.

I praise you because I am fearfully and wonderfully made.

Happy Birthday, Carly! Mommy loves you so much.