My girls are 11. Their birthday was August 2nd. In many ways they are typical pre-teens. I’ve learned because of them that “Tiger Beat” magazine is still in production. They are eager for their soccer season to start and have a list of the movies they want to see. Beyond the typical tween realm is the grief and sorrow that lurks in their eyes and the worries they carry. They fear phones ringing late at night and the hallway outside their bedroom being too dark when they are trying to sleep. With help they are learning to manage their fears. Their dad and I love them, hold them and listen to them when their sorrow and worry grow too big for them to carry.
With everything they carry there is the additional component of one of my daughter’s being sick for the last few weeks. After repeated visits to the doctor, medication and lab tests, our family physician has determined that my daughter needs to see a specialist. Mark and I are feeling the anxiety of being in the limbo state where there are so many, “What if?” questions swirling that take us down a frightening path. Despite our worry we made sure that the party our daughters planned(Party Planning) happened. Mark went with the girls to pick up their specially designed cake at Bleeding Heart Bakery(Bleeding Heart Bakery). The girls prepared with such zeal, tying balloons on the front porch, hanging purple and pink streamers in the doorway, cleaning off the volleyball so they could play in the backyard and peering into all the grocery bags to make sure I got the right kind of potato chips, and licorice. The girl’s “Rockin’ 11” sleepover party was two days before their birthday and judging by the screaming, giggling, singing and dancing the party was a huge success. It was so good to see both of them relax a bit and embrace the fun and silliness a party with their friends had to offer.
On my girls’ actual birthday the excitement from their party had started to wane. My daughter tried to find energy so she could exuberantly participate in the activities planned for the day but it was too much. Half of her birthday was spent in bed because she wasn’t feeling up to going bowling or out to dinner as we’d planned. Mark and I shared concerned looks, too afraid to voice our fears. I called our doctor again telling her that my daughter was getting worse not better. I hoped that after she talked to the specialist that day, we could get an appointment as soon as possible. As one daughter lie in bed the other hovered nearby with an ambivalent mix of concern and frustration. It was her birthday too and amidst her worry was her desire to celebrate-but only if she could do it with her twin.
This summer is our second without my son Jordan and the first with my son Merrick away for so long. He’s been at a 6-week pre-college program since the end of June. My daughters wept when they realized that Merrick wouldn’t be here for their birthday. They each said to me, “Neither of my brothers is here for my birthday.” I held them close reminding them that we would do video “Ichat” with Merrick and all sing “Happy Birthday” to them together. I told them too, “Jordan will always love you, just like you’ll always love him. You’ll feel him on your birthday.”
Our house has been quiet this summer with Merrick away and Mark frequently travelling. The girls have kept to themselves, preferring to play together or do activities with me rather than hang out with their friends. I pushed a few times suggesting that they call and invite friends over. They would half-heartedly agree on occasions but spent most days riding bikes, watching TV and to my delight reading to each other. Sleep still does not come easy in our house and there are many nights that I walk past their room and hear the sounds of them talking, or see the shine coming from their book lights as they take turns reading to each other. I’m so glad they are so close and have each other as sisters and friends.
As the days have continued with my daughter not feeling better, there is a storm of worry brewing inside me. I’m doing my best to keep it at bay. In the midst of excitedly anticipating the return of my son Merrick from his 6 weeks away this summer and planning for the celebration with family and friends to honor Jordan on what would/should be his 21st birthday, I’m gathering lab results and making sure I have my insurance card so that I can take my daughter to see the specialist recommended by our family physician. My daughter’s appointment is today and she is more ready than worried. She tells me, “I need to know how to feel better.” She’s been sick now for 3 weeks and her symptoms are not abating. We need answers. We need our daughter to be okay. Waiting is the most difficult part. Our family physician tells us not to worry and to wait until we have more information. It has taken energy reserves I didn’t know I had to tell myself, “She’s going to be okay. She’s going to be okay,” as I wrapped their gifts and took pictures of them on their birthday.” My sister eases my fears about my daughter, reminding me how she and I have learned to live with lupus. She tells me with authority and conviction, “We’re warriors. No matter what happens, we’ll help her through.”