Ok, so this is a post that may not have a ton of pictures (I love pictures) but it is a story that I really want to share and I hope you all take the time to read.
Have you ever had that experience that you know could only have been created by God's plan?
You may not know why but somehow you just know it is connected to what you are going through and somehow you were meant to be in that place at that time meeting that person, saying or hearing those words, etc....
Well I have wanted to write a post for awhile to tell you all how God touched us so often in unexplainable ways through the process of having a child with a cleft. We had so many experiences like this that I hardly know where to begin. I will begin at our 20 week ultrasound, which was not the day we discovered Paige's cleft but the day we learned our baby was a beautiful healthy girl. We really did leave that appointment elated with a beautiful profile ultrasound picture in hand, but with the knowledge we would return to try a see her face straight on which she insisted on hiding in the placenta. To me this day was so necessary. God knew we needed to get to know our little girl first because her cleft was not who she was. We had two weeks to celebrate her healthy heart, brain, kidneys, hands and feet.
In the following week my next 'God set appointment' called me up out of a deep sleep. My sister said "Come play with us at Chuck E. Cheese. We are meeting a few friends there and the girls would love to see you." I rolled my pregnant self out of bed and showed up. A few minutes after I got there a woman came in with two adorable children. One just over a year in her arms had beautiful full lips, which I noticed first and then I saw two scarred lines under his nose. Somewhere in the back of my mind I knew we had the appointment to clear any craniofacial diagnosis coming up and I seemed to find this interesting. I asked my sister if he had had a cleft lip and she said "yes." I even told her the appointment we had to go to was to rule something like that out, but we had absolutely no reason to think we would find anything. Hmmm...I can't remember the last time I saw someone with a cleft lip scar but here at this time I see this little boy. I think to myself of the time in my senior year of college when I watched a TV show that showed three reconstructive surgeries for children....one being a cleft repair and another being a little boy born with no ear. The doctor, who was an artist in his own time, sculpted an ear from cartilage. I told my dad that day that I wanted to be a plastic surgeon for children born with deformities. I even asked "if medical school would take a straight "A" Art major instead of a pre-med degree." This might have been the first point on this God-led journey that I could connect the dots to this day nine years later looking at this little boy in front of me. Soon after Paige's diagnosis my sister made it possible to sit down with that mother. She was so helpful and really gave me good advice and resources. One thing I learned...picking a good plastic surgeon is important and insurance coverage isn't a given. Things I had never had to think about before.
The day we went in to check her face two weeks later and saw the deep shadow under her nose on the screen....we were stunned, punched in the stomach. I was scared and worried for so many reasons. Immediately we called our former and current priests and were met with another appointment by God. Each one had a child born into this world as wonderful, beautiful children with disabilities. One with Fragile X which is a form of mental retardation on the Autism spectrum and the other had Spina Bifida and had to undergo surgeries and a lot to overcome in life. Both these fathers had a real grasp on what the news, "your child has something wrong" could feel like. In another way it gave us a chance to put it into perspective. For all we knew Paige was healthy and a "normal" (What does that word mean anyway?) child that would undergo surgeries to fix her cleft. As many times as people say "they do amazing work these days" and "its hardly a big deal," "she'll never even remember"....or "you won't even be able to tell".....I have to say not one of these things ever made me feel better.....most of the time I didn't believe them......and it still was something we were going through and its not always easy and who wants to see their child in pain from surgery, discomfort from massage treatment or maybe even teased for looking or sounding different. BUT the two people who really could relate....saying they are sorry...that they understand and could clearly help us see that so many things could be worse, were the first two people we turned to that day. One of the Priests said "Celebrate."...."Celebrate this pregnancy, this child...don't wait for things to be 100% perfect to celebrate or you might never get to and miss so much."
The stories of knowing someone with a cleft, knowing someone who works for Children's Hospital of Orange County's Craniofacial team, or knowing a surgeon who does this kind of work flooded in. We were not alone. My dad's friend in his cycling club and his wife are really involved in Operations of Hope, an organization who does cleft repairs in foreign countries; another cycling buddy is a dental surgeon on the CHOC Craniofacial team; One of my long time church friend's brother is a CHOC charge nurse and another one I grew up with just completed her schooling to be a Speech Therapist and had a lot of encouragement; another high school friend knew the Speech Therapist that would be at our evaluation appointment and she knew we were coming; the Audiologist on our panel eval ended up being a parishioner at our church. Our ENT is a neighbor of another parishioner, our neighbor works in our pediatrician's office, our pediatrician was recommended to us at least three separate times including by the head of the Crainiofacial team. My mom's scrapbooking customer has a teenage son who has undergone cleft repair and treatment through CHOC and she is involved in parent support there. Another friend from our church has a brother who goes on cleft surgery missions in other countries. My mother knew women who were lactation consultants, with experience of babies with clefts, who were ready to help and they even knew the perinatalogist and the neonatalogist that would be at Paige's birth if necessary. Even Paige's 84 year old great-grandma has been giving to Smile Train for 15 years and was very understanding. We discovered that we were surrounded by support and encouragement at every angle.
Once Paige was born we went to our panel evaluation and met a geneticist, ENT, audiologist, speech therapist, orthodontist, plastic surgeon, and social worker...and left CHOC after dark exhausted, but encouraged and feeling well taken care of. We immediately went to take Phil's grandma to dinner at Claim Jumper because she is in the area. The booths have tall backs so you don't really see the other patrons around you. All of a sudden a little boy under two pops out and stands in front of our table. He looks Phil dead straight in the eyes and smiles. Phil points at him and then points at his own mouth and asks, "Is it?" And I nod...yes he has had a cleft repair. Phil leans around to the other table and boldly says "Hi...our daughter has a cleft lip too!" The family was thrilled and all zillion of them popped around to look at our one month old with the unrepaired cleft lip and palate. They cooed and awed over the newborn and told us all about their experience with CHOC, surgeons and going through both the lip/nose and palate surgeries already. They didn't have insurance and ended up getting a very inexperienced surgeon who didn't actually do the best job. He already needs to have another surgery to fix the first one. They had his second surgery donated by the Shriner's Children's Hospital. It made us grateful to have wonderful insurance and pleased that we could get coverage for the best children's craniofacial plastic surgeon in Orange County. Meeting this child and his family was such amazing timing. We literally had just left the hospital and very much had Paige's treatment on our minds. All I could think was that was a "God Thing." We were part of a community now of Cleft families. We could look each other in the eye and marvel at our wonderful children and share stories and experience.
I found this to be even more true on the Cleft Lip/Cleft Palate support board on Babycenter.com. I got so much support and advice. I quickly felt like I was an expert on a subject I never knew would consume my life, fill my dreams and enter my conversation on a daily basis. I entered the group new, concerned, feelings of guilt and shame at some points. These women I didn't even know opened up....let me feel sad, encouraged me and pointed me in the direction I needed to go. I saw pictures of amazing, beautiful wide smiles, and children with repairs who were loved and adored. When someone came into the group with a new diagnosis and similar feelings we all could rally around them and tell them it will get easier. It has been an incredible experience. I've gotten to know some of these other moms and love seeing pictures of their little ones as they grow and are there with them in thoughts and prayers as each one faces the different stages in this process... thoughts leading up to surgeries, new challenges post surgery and celebration of recovery and plans to get back to normal everyday lives.
Six days after Paige was born my husband was ordained to the Priesthood in the Episcopal Church. I wanted to be there so much and was determined despite of recovering from a C-section and having a tiny newborn. I made it through the hour car ride and two hour service. I was taking her into public, I kept her close and wore her in a wrap against my body and a blanket over her little face to protect her from germs. We were able to witness this special time and when people asked I said, "I was doing great." But immediately following I became exhausted and my muscles around the stitches hurt so much and I crashed hard. I feel like I had the perfect amount of energy to be there and I was meant to be. I didn't feel much pain at the time... And that is when God made me another very special appointment. A necessary one for my healing and processing of having a cleft baby... On my way home my mom pulled over because Paige was crying inconsolably. We stopped at a Starbucks to take a break. I waddled in carrying my precious new baby. I was still at that stage where I was super conscious about what people thought of her cleft. All I was doing was hiding my face in her's and staring at her while my Mom ordered. All of a sudden I heard a man's voice say, "Does she have a cleft lip?" And I looked up a little taken back because I hadn't faced any public questions yet. The voice came from a young man behind the counter, who very clearly had a scar on his lip and a slightly pulled nose. I said, "yes she does." He then told me he had had 9 surgeries. Most he could not remember but he remembered the one from his bone graft at age 9 and he actually had one coming up soon to widen his jaw. He told me this happens sometimes to guys who's "manly" structure doesn't grow as it should to accommodate a nice square jaw. He seemed like a nice young man and very well adjusted with his scar and his story.
It really touches me each time I meet someone who has experienced all of this. It is a special community. Now I see people all the time in public, children and adults with cleft scars. A dad at the pizza place with a left unilateral scar, a girl at the rodeo with a bilateral repair, a woman working at the dressing room of Target with a nose and lip repair from long ago. A small child with her still pink scar, swinging from the hands of her parents and even a one month old with an unrepaired isolated cleft lip who can actually breastfeed. This is our community, one that we would not notice much, never know, care for so directly and now be there for, if God hadn't reached out and marked Paige as his special child. A child that would know many challenges but also know an incredible amount of love. People say she shines....that she is amazing, beautiful, happy, funny, and bright. She is all these things and not just because I am her mother, and I am not saying it is because she has a cleft but because God made her, loves her and gave her to us to make a huge impact on this Earth. I believe she will continue to do that everyday of her life. She is a strong and determined little girl with a lot of joy in her heart already.
