Ok, charity game I was hired to photograph is done. I am one tired Mama! I will be posting photos from it a little later.....for right now, I need a basketball break!
So, as I've mentioned, I'm taking Faith's DSLR class, and it's awesome...... I'm having a BLAST learning my camera better!
So, for my before/after this week, I'm going to use one of the portraits I did of my daughter, R...
Before:
After:
She is my Diva, for sure! Here's a few more of my rock star...
and channeling her inner Janis Joplin...
Hop on over the Pixel Perfect, and see everyone's amazing edits this week!
Here's a few other shots I've taken for Faith's class in the past week or so....
Oh, ok..... one basketball photo from the charity game....
As for me, we've got a appointment next week with S's surgeon.....it's just your standard every six months visit, but it makes my stomach get all butterfly-ish....I mean, we just never know. We could go there next week, and have him see something in her mouth that needs fixing, and find ourselves gearing up for surgery again. Not what I want to have happen, but I'm trying to prepare myself in case. That's the tough thing, the care is so individualized after the first year, there's no laid out, set in stone path we are following. During her first year, I KNEW she's be having lip/nose surgery between 3 - 6 months, and I KNEW between 10 - 12 months, she'd have palate surgery.......now everything that lays out in front if us is full of possibles and maybes. ::::Sugh::::: I know it'll be ok no matter what. God's there, walking me through it all, even when I only see one set of footprints in the sand.....
I try hard to stay far, far away from my pity pot. Yes, it's warm and familiar, but really nothing good ever comes from me hanging out there. It's warmth and familiarity are deceiving at best.
But sometimes, as happy and positive as I try to stay, my mind goes there.
It hurts having my child not speak and act like other kids her age. It kills me when I hear her choke and struggle with liquids. I want "normal" for her so badly..... I want her to say DaDa and Bye Bye.........and somedays it's really hard to not dwell on the things she's "not" doing instead of focusing on the things she is.
She is a blessing, for sure....
My heart and soul, all wrapped up in this amazing little package. See, these things that are so heavy on my heart don't phase her in the least. She is love. She is life.....she....just......is.......
Maybe I'm struggling because we're getting so close to her second birthday. When I see other kids her age talking, pointing to things, singing songs, and stringing words into sentences, i lose sight of how far we've come. We've been through so much together. She's my road trip buddy, as we've clocked more car hours driving back and forth for care than I really want to think about.......she's my late night secret keeper.........my cold day snuggle bug......and that little ounce of joy on a tough day that give you that seed of hope that tomorrow will be better......
When I first got her diagnosis on her ultrasound, someone gave me the poem "Welcome to Holland" by Emily Pearl Kinsley
"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."
It's that loss of that dream that I struggle with from time to time.....but I'm getting there. I'm thankful.....humbled that I get to me Mommy to this amazing little girl and her wonderful siblings....
I remember the first moment I saw her..... I remember being so surprised at the calm I felt, how in control I felt, how confident I was in my ability to get her to eat. I was so relieved that she was breathing well, that her cleft really took a backseat in those first moments.
See, little Miss S likes to keep us guessing! At 4am, over a month before her due date, she decided enough was enough........ my water broke! I remember the nurse telling me that she'd probably have to go to the NICU, since she wasn't quite 35 weeks yet even. I let everyone know that, if there's a problem with her breathing or anything like that, by all means you take her and do whatever is necessary to make her well, but if it's only the cleft that we're dealing with, she's to stay with me and not go to the NICU.......that I would get her eating.
It's funny, thinking about it now, as I've never been a pushy person. That moment was my first taste of having to be an advocate for my child. Trusting that gut feeling that I know how to handle this. What I realized then was that, when your child has been diagnosed with something that falls under the category of anomaly, the chances are likely that YOU'RE the expert, not the doctor.
S's cleft was 18mm wide. It involved her nose, her lip, her gum-line (alveolar ridge), and the roof of her mouth extending all the way through the hard and soft palate. When I looked at her, all I saw was the most beautiful, amazing creature I'd ever laid my eyes on.
She got to come home with me. We were discharged together. We actually spent a lot of those 48 hours in the hospital educating the nurses and doctors on clefts. Many of the nurses really wanted to learn more.
Once we were home, within days we traveled the two and a half hours to get to Strong, to meet Dr Karp for the first time, and begin molding with the NAM. The NAM (Nasal Alveolar ridge Molding Device) is a plate made from an impression of the infants mouth. Material is removed where they want the gum-line to move to, and material added weekly to create active pressure on the gum-line. It's kinda like braces that move your gums, and later on pieces are added to help push the nose into the correct position. Then steri-strips with dental rubber-bands attached connect to part of it, and get taped to the baby's face. So, in the early days, her NAM looked like this: From the first week on, I called the Eastman Dental Center at Strong the "Build-A-Kid Workshop"
When S was wearing her NAM (which was 24 hours a day, 7 days a week..) she would have Tegaderm tape on her face to help keep things from getting raw. Those days were so, so hard. We used Fixodent to help hold the NAM in her mouth, and it was messy and hard to get off of her. I'd have to replace the steri-strips holding her NAM between 5 - 15 times a day. Anytime we'd go anywhere, we'd get looks. If her NAM happened to come out while we were out, I'd have to spend 20 minutes getting the thing cleaned off and back in right, all while she was screaming bloody murder at me, with the added pleasure of strangers looking at my like I was abusing my child. It all REALLY took a toll on me the early days.......but we kept going.
During this time, I was also pumping milk for her. I wanted to nurse her SOOOOO much, but it just wasn't possible. When a child is born with a cleft palate, the likelihood of them being able to nurse is extremely low. My body has trouble getting a milk supply up, even in the best of conditions also. I did everything I could, met with lactation consultants, tried herbal and then medicinal supplements to increase my supply..... everything. I made it for nearly three months pumping, before it got to the point that I felt I wasn't even able to enjoy my child..... I was so stressed between the NAM and pumping. I felt like I was spending more time "nursing R2D2" than I was bonding with my baby.
All this time though, all our hard work was paying off. Her gum line was moving together. We were closing that 18mm gap. We got things close enough where they could add the nasal stint, that started molding her nose. All the time, trying to remember that we were doing this FOR her, not TO her. See, kids with clefts have to have lots of surgeries. Many people think that once the lip is closed, it's done. That's totally not the case. Most kids have surgery until they are nearly fully grown...... some even have surgeries into adulthood! By doing this pre-surgical molding, I was making that number of surgeries smaller. I also knew that, if we were successful in getting her gum-line to physically touch, that she would have a shot at not needing a bone graft around 9 - 12 years of age.
As the doctors saw how well we were doing with the NAM, the public relations person for the center caught wind of our story. She asked me if I'd be willing to do an interview with the local news station about our journey. They took some photos, and shot some video....
(I was a lot heavier then.....so funny, it's been a long time since I've looked at these photos!)
This was our first news story...
This got picked up all over the state.....and I started meeting people. Getting emails, and phone calls from people seeking me out, because they saw the news clip and wanted to thank us. It was so amazingly humbling....and I really learned the importance of giving back, or helping others. All of a sudden, everything we'd been walking through had purpose greater than just our family.
I remember clearly how scared I was. I was 16 weeks pregnant, and had been bleeding. Since I had most of my cervix removed when I was younger, and blood was a one-way ticket to the ultrasound room. It had actually become pretty routine.... I think this was my 4th or 5th ultrasound so far, this pregnancy.
I remember the ultrasound tech.... she seemed so nice. She was chatty, telling me everything was looking good..... baby's heartbeat was strong....... cervix was still holding....... and then, she stopped. Four words followed, "Wait.... I see something." That's the moment my world fell off it's axis. She asked me if I knew what a cleft lip was, and I said I had heard of it. Then she said it, "Well, your baby has one."
She left the room right after, presumably to get the doctor. There I was, alone with my thoughts. I was so, so scared. I was crying. I didn't understand. Why me? Why us? I did everything right! How could this be happening? How was I gonna tell Rick? I was a mess.....
Doctors, family members, everyone kept telling me, "Well, it's not so bad. The can fix clefts!" In a way, they were right. Clefts can be repaired, but in the weeks to come I was to learn that this journey I had unintentionally embarked upon was gonna be a marathon, not a sprint. See, the things is, the face and mouth involve so much.... breathing, eating, communication...... there are so many muscles that have to work in perfect harmony for everything to be "just so." It's so much more than just the cosmetic.... it's a journey that lasts, at least, until adulthood.
The following 20 weeks were so hard. I was still full of such fear..... such dread. I studied everything I could find on clefts. I read medical journals, spoke to other families, researched craniofacial teams......I half-jokingly refer to that time as my 20 week doctorate level independent study course on clefting. We decided to use the team at Strong Memorial Hospital, in Rochester. The team there is amazing, and they employ a fairly new technique in cleft care..... the NAM. Nasal Aveolar Molding device. A way to close the gap in her gumline, and align her nose prior to surgery. The NAM is a ton of work for the families going through it, but the results were worth it to us... we settled on driving the two hours to Rochester for her care.
What amazes me most about looking back like this, is just how terrified I was. I was so scared of what was to come. What if I couldn't feed her? How would I feel the first time I saw her? Was she going to have to go to the NICU? How would other people react? It's so incredible to me that I spent so much time and energy fearing what was to come, when the fact of the matter is, S is a miracle, and has bought me nothing but joy, love, and everything good in this world. Our journey has not been an easy one, but I've learned so much about life from this little girl. Her life has enriched mine in ways it's hard to describe. Honestly, I've learned more from her in her 21 months of life, than I EVER could hope to teach her in a lifetime! .........to be continued.................
