A few months ago I got a phone call.. It was from a local-ish CdLS mom who for the first time, was getting connected with other families who have kids with CdLS. Because of a doctor's advice to NOT join any CdLS groups because of her son's very mild case (completely ludacrous in my opinion..), this was the first time she was getting the support she needed. We were talking and she was telling me her story.. when they knew something wasn't typical with her son, how he was diagnosed, what his symptoms were, where his development was and suddenly she said something that struck a chord with me. It was simple and subtle and I didn't even have a chance to comment on it but I haven't been able to stop thinking about it. She was talking about how when her son was a baby she had a feeling something wasn't right, but everyone kept reassuring her everything was fine (sound familiar??). She said that it was weird because she just couldn't get a good photo of him.
She kept on talking I'm sure, but for a moment my entire world just stopped there. Absolutely still. A flood of memories and images came rushing back to me. You see.. the exact same thing happened to me. It was a combination of months of feeling I couldn't quite capture Ella's essence on my camera, mixed with idealistic expectations, that all came together one fateful night. One night that became the very first time I realized something really might be different about Ella. The first night I felt myself admitting it. The first night I really broke down..
Here is the story.
After Ella was born I decided I wanted to do some cute newborn pictures with her. You know.. the adorable pictures of day old squishy babies sleeping with their little crocheted sock monkey hats, piled on top of blankets or curled in an old wash tub, with their pudgy wrinkly cheeks smushed up against their tiny balled fist... yeah those. They weren't really a big thing when my boys were little (or maybe they were and I was just out of the loop.. good possibility. We didn't even have Internet at that time..) so I wanted to make sure I did it right this time around. I mean.. that's what good moms do, right? They get fantastic pictures of their children's most adorable moments.
Not that I was going to pay someone to do them.. Heaven's no. I took photo classes in college. I take pictures for families every once in awhile. And they pay me. I kindof know what I'm doing.. (Don't tell my paying customers I said that.) No, I would do them myself. Well, with Ella being born 3 weeks early, then failure to thrive, add on RSV at 2 1/2 weeks old, intubated for 10 days, and hospitalized for 3 weeks.. our newborn pics didn't really get done on time. But I still wanted to try. I was determined. My husband calls it stubborn.. I prefer 'persistent'. So one night after the boys went to bed, I took the space heater up to our bedroom, made it toasty warm, hung up a backdrop, turned on some lighting, created a makeshift light diffuser out of a container lid and aluminum foil and stripped the little munchkin down.
It didn't go like I planned.
The whole night was a disaster.. The lighting wasn't right. My pictures were blurry without a flash, but with a flash way too bright and one-dimentional. She wouldn't lay the way I wanted her to and only was content if she had her almost-as-big-as-my-face-paci stuck in her mouth. I tried different angles, different lights, different positions.. Nothing worked.
I was frustrated.
I was frustrated with the lighting. I was frustrated with my setting. I was frustrated with Ella's uncooperation. I was frustrated that I couldn't get a good picture. But I was mostly frustrated that I was beginning to realize deep in my heart why I couldn't get a "good" picture. And it had nothing to do with the lighting, or the backdrop, my mediocor photography skills, or that darn pacifier. I couldn't get a "good" picture because something about Ella just didn't look right. Something was different. Something just wasn't like those typical squishy baby portraits.
This was the first time in her life she looked "different" to me. We didn't have a diagnosis yet of CdLS. We had been told there "might be something going on" but we didn't know what. And I was clinging to the hope that there wasn't. There just couldn't be something wrong with my baby girl. So what that she was gaining weight slowly. So what that she had a lot of hair. And her eyelids were a little droopy. I didn't care that her head size was a little small. She was FINE. Up until that night of the picture catastropy I didn't really see any of those things when I looked at her. Call it pure love. Call it denial. Call it whatever you want.. That was the only way I could deal with life right then.
These emotions and memories all came rushing back to me as my new friend spoke and in that moment I wished I could reach out across the phone wires and give her a long hug. We were strangers, brought together merely through the similar rare genetic makeup of our children, yet from a hundred miles away I could feel the pain she felt, I could sense her frustration of years gone by. I could understand her disappointment. Because her pain, her frustration, her disappointment.. it was mine too.
I suppose this post doesn't really have a purpose.. I'm not ending it with some life-altering lesson I learned or a golden nugget of advice to carry you through a hard day. It's just a glimpse into a part of my journey. Of Ella's and my journey together. Up until this point I hadn't considered that maybe someone else out there is having a similar experience, struggling with the same toxic mix of hope and acceptance and failed expectations and looking for someone to tell them it's okay. That it's okay to have those feelings and it's okay to be angry and it's okay to more than anything not want your child to be the way they are. It strengthens my desire to reach out to others and while being completely, brutally honest here, help begin the healing process of someone's heart.
As I look back on that day I am utterly amazed at how far Ella and I have come together. And I want to share our story with as many people as possible.. not because I want to be a hugely successful, world wide known blog (quite the opposite!) or because I want more glory and attention on myself (once again.. quite the opposite!) I merely want our story to help someone. Another blogger did it for me and I would be beyond honored to be that glimmer of hope in someone's life. If Ella and I's story can impact just one person's life, then writing this sometimes scary and painful blog will not have been for nothing.
So thank you to the many of you who have shared my blog with friends, a stranger, a co-worker, through Facebook.. I am honored you think it worthy of admitting you actually know me.. :) And I encourage you to continue. Please.. if you think someone out there could benefit from reading my too -often hastily strung together, yet honest and raw words, than feel free to share with them. I would be honored.
Beautifully written.
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