Cleft Lip & Palate Awareness Week

In honor of Cleft Lip & Palate Awareness Week, I thought I might talk a some about my wonderful son Liam, our journey to him and his journey with his CL&P.

Liam before lip repair in China

Our approach to being the parents of a child with a Cleft Lip and Palate is different than most as we knew right from the start that we were jumping into being the parents of a child that had a cleft lip and palate. We started Liam's adoption about 3 years after Evelyn was home and on the second time around, it was very clear to us that we wanted to bring a child home that not only needed a family, but a child that needed us in other ways too, I think that's the simplest way to put it. We set out to complete a Special Needs Adoption, which is to say, a child that has a medical need of some sort.

Our first glimpse of Liam

Very early on in the process, Les and I had to sit down and complete a Medical Conditions Checklist. If you aren't sure what that is, it's a list of potential medical conditions that a child can present with, anything from prematurity, to anemia, from HIV to complex heart conditions and anything in between. Once you have been to China and you have seen children waiting in a hallway to meet a family to call their own, and you look at a list like that, you realize very quickly that there is not only one child behind every condition on that list but hundreds and they are each a precious individual and they each deserve the chance to have a family and thrive. The night we sat down to decide which medical conditions we might be able to manage as a family and which ones we might not, still haunts me. Among the conditions we checked off, we did decide that cleft palate and/or lip was something we could handle. I knew exactly what it was, I also knew the stigma attached to that medical condition in Chinese culture, I knew that Speech Therapy and multiple surgeries would be a part of the deal but I just knew that I could do it. Les agreed.

Another picture sent from China while we waited

A cleft palate is when, in utero, the roof of the mouth doesn't close completely and the baby is born with an opening there, this can encompass the soft palate or the hard palate or both. Sometimes this opening extends to all of the way through the front jaw line and into the upper lip and it can affect the appearance of the nose on the affected side. The child can also have a cleft on one side; a unilateral cleft or both sides; a bilateral cleft. 

Another picture from the Orphanage

We submitted our paperwork and we waited. And we waited for yet another child to call our own. We had several conditions on the list; we had said that we would take boy or a girl. One snowy day we got a call. Our agency had a file that they thought we might be interested in. A small boy with a unilateral cleft lip and palate fourth degree (this meant both soft and hard palate were involved as well as the jaw line) but that he was on target developmentally, he was extremely precocious, he was bright, funny, and had been in Foster Care, would I like to see a picture and some information? "OH! We'll take him!", was my reply. The agency lady said, "Mrs. Dillon? Aren't you married? Wouldn't you like to talk this over with your husband? Don't you want to see the file first? Have a pediatrician look it over?" I Laughed. "Oh yeah. I'll call my husband in. He's shoveling the driveway. But this is our son, I know it. Do NOT GIVE THIS FILE TO ANYONE ELSE. I'll call you back in 10 minutes."

The first time in my arms

Two months later, we were in China once again. It was hot. Again. It was a different large room. But it was filled with people and we were waiting once again to hear our name, straining to see where our baby(toddler actually) was. He was in a corner, playing with a  broken blue truck. We had to bribe him with food. It didn't take long for him to warm up to us though. He liked that we had food and that Evelyn made sure none of the other kids took that truck away from him. Soon we were back in a quiet hotel room with him and our time as a family of four began. 

Liam and the blue truck

First moments as sister and brother

To tell you that Liam is my personal hero would be an understatement. I have watched that boy change countries at a time when it is most difficult to make that transition and he survived. He survived his time in China without a family of his own, being unable to verbally communicate. He has gone through years of not having people understand his speech and I have never once seen him be frustrated at anyone over that. He has been through multiple surgeries and he faces each one with a spirit of courage and grace beyond his young years. Above and beyond all of the stuff that comes along with having a cleft lip and apart he is just a boy, with all of the trimmings. He is my Liam. He is the sweetest and most giving little person, always ready with a smile or a kind gesture. His smile lights up the room. Evelyn came into our lives and made us whole but Liam came into our lives and completed us. We were all missing something until this kind, clumsy, wacky fella waltzed into our lives. 

When Liam first came home from China, we called his tongue The Veal Cutlet as he had absolutely no muscle tone in it whatsoever. He had no muscle tone in his cheeks. I guess it's important for me to tell you here that Liam did have surgery in China to repair his lip but when we met him at the age of 22 months to bring him home, his palate was still unrepaired. At that time he was still eating mostly from a Cleft Bottle and soft foods that he could mush. He had never learned to suck, there wasn't much in the way of chewing action, and some foods would just come right back out of his nose. We had at least two years of solid work to strengthen to muscles in his tongue and cheeks just so that he could lick peanut butter off of his lips, THEN we could work on his speech sounds.

When he first cam home, we started right away with Baby Sign Language. It was all we had. Liam left China at the age where the brain looses it's first language faster than it can pick up a second language so it does this weird shut down thing and he was really mad and refused to make any verbal sounds except to cry for a few weeks (that was fun). Then once he started to pick up English, it was completely guttural sounds, no consonants at all. We had to use Signs. He ended up having over 300 that we used.

We started ST right away. That continues to this day, he is eight years old. At this time, he goes simply for "clean-up" issues and maintaining good habits, all of his cleft related issues are a thing of the past. But as we move through different surgeries and appliances, those cleft related speech issues will crop up again.

His first surgery was to repair that open palate once we were home. While he still had an open palate to deal with he drooled almost constantly. He could cram fistfuls of food up in that opening, it was quite impressive really, so I had to watch him carefully. We also had to watch no to give him any thing too drastically hot or too cold as the open palate is very sensitive. Eventually he needed a second palate revision as the first one was too tight. Liam had a very wide cleft and we knew that going into the first surgery there might have to be a second one. Along with the sound palate surgery, they did a scar revision on his lip from the surgery in China (that scar was very tight and causing pulling and soreness) and they worked on the tip of his nose to even out some of the slanting from the loss of cartilage.

Right after first palate repair

After second palate repair and lip revision

Day 2 of 2nd palate surgery/lip revision

Post-surgical stitch abscess(quite common)

One week after that second surgery

We are preparing for the upcoming Bone Graft that kids with that cleft in the upper jaw (Alveolar Cleft) need to have when they are about this age so the adult teeth have something to hold onto when they come in. That should be about it, unless Liam decides he wants to have further surgeries on his nose when he is older. Last this time however, he has decided that his nose is just perfect the way it is and he likes his nose and I agree and we have chosen not to have further Plastic Surgery on that. 

Liam age 6 as Robin Hood

Is it easy having a Special Needs kiddo in your life? No. It's not. It's not easy planning All of the Speech Therapy, the Doctor's appointments, the surgeries, watching your child go through it all. Would I do it again? In a minute! Liam has enriched our lives in so many ways. I will never be able to repay that little boy for coming into my life and making it better, for making me a better person. It has been an absolute honor to be his Mama, to be here for him during every scary moment for him, to have him reach out for my had or climb onto my lap. Some conversations have ripped my heart out, the ones about why he has a scar on hid face and no one else does, the ones about kids at school teasing him, the ones where he decides, with a maturity far beyond that of an eight year old, that he likes his nose just fine and the surgeon is the one in the wrong for expecting him to change his face...Some conversations have been the kind that make my heart swell, the ones where he tells me that he trusts me to handle everything and to just let him know what needs to happen as it's going to happen, that he thinks I am the best Mama ever and he is glad that we are together, the ones where he looks at me and simple tells me that he loves me. Cleft palate or not, this is my son and he is simply the best boy in the world, I wouldn't trade him for all of the gold in the Universe.

Liam age 8 just before Second Grade

Family Day Anniversary

May 8, 2005. Les and I found ourselves in the most unlikely of places, the middle of a crowded Conference Room in a hotel in China. Halfway around the world from anyone or anything we had ever known, straining desperately to hear the sound of our last name called out so that we might head to the double doors in the front of the room, to reach out and take hold of a tiny child that we had only ever seen a single photograph of, but whom we were already completely and hopelessly in love with.

I kept stretching to see if I could catch a glimpse of her, the one little tiny baby that was to be mine, but there were fourteen babies, fourteen nannies, and several Orphanage Directors with hotel staff and the Adoption Agency folks there too, and I just could not see her. My one photograph, I would later realize made it seem like she was much bigger than she actually was, and it was also very outdated....but still I wanted so badly to start making up for lost time. To start drinking in every single moment that I could, to start reading expressions, to see her, to see that this was real, that it was really happening, that there was really going to be a baby just for me at long last.

Finally, after eternity, they called out "Dillon!" and as I walked forward with wooded legs and my heart pounding so hard that I thought I might be having a coronary event, I saw a Nanny from the orphanage make her way from the very back of the crowd where she had been pacing with my little one (no wonder I didn't catch a glimpse of my baby), we came together at the doorway. I didn't take time for the customary pleasantries, I just reached out and took Evelyn. She was already crying and upset. I could hear that she was hoarse, so I knew right away that she was probably sick, I just wanted her in my arms right that instant. I took her and I never looked back. I never looked back. If someone had said, "Oh that's the wrong baby, or Oh sorry, you can't have her" things would have gone very, very badly for the entire country right then and there. She was mine and that was final.

Adoption is a funny thing. I say all of the time that the four of us came together through pain and that is true, but there is such beauty and love and complexity in the stories of adoption. When you find your children out there in the great, wide world and you make a warm haven for the family you want in life, there is a miracle in that so far beyond biology that involves choice and the diligence of the human spirit, I can not begin to describe it. That is not to say I believe that what I have with my children surpasses what birth families have, but I know, beyond a shadow of a doubt that the love I have for my children is the same. The same. And if anyone doubts that, I would suggest to them that they think upon the words my mother said to me when I was talking about adoption with her, "It isn't the giving birth to a child that makes you their mother, it's the day in and day out of taking care of them, meeting their needs, being there for them and putting them before yourself over and over again- that's what makes you a mother." 

Over the years Evelyn has blessed our lives with a joy that is immeasurable. She is a person of highest quality. She is kind, intelligent, bright, well mannered, she is diligent in her studies, she works hard, she always has a kind word, she laughs easy, she walks around singing and giggling... I could spend entire volumes speaking about what a joy this girl has been. I will tell you this, the moment that I took her into my arms, I knew that my life had finally begun, but I really had no idea just how wonderful of a life it would be. I am so lucky to be able to live this life along side her and have a child such as this call me Mama. 

                                                         

 

She will be thirteen in just one short month and I can not fathom where the time has gone, but I do know that I am eternally thankful that my body was broken and busted so that I was forced to search the world for my children. I have found in these two- miracles beyond understanding. My heart is full to bursting everyday that I am alive because I have these beautiful children in my life. I love the country of China for the beautiful gift, for entrusting me with the lives of these two precious people. 

Evelyn is a person full of light. She shines. I wish I could take credit for that. I can't. It's just her. I tell  her all of the time, I went to China for you, not just any baby girl, but you, because you are my daughter, you are the one that I needed, the one that made us all complete. 

Big Doings for Liam

Liam is eight now.
That is a pretty big time is you are a kiddo born with a Cleft lip and palate. Eight years old means that it's time to get ready for the Almighty Bone Grafting Surgery. Not all kids who have a cleft palate need this surgery, but kids who have a fourth degree cleft do. That Fourth Degree terminology means that Liam's cleft goes through his upper jaw line, his Alveolar jaw. We have been waiting and watching adult tooth eruption and jaw growth for the timing of this surgery and we think we have things narrowed down.
Last month Liam and I traveled from Florida to Philadelphia to meet with his Cleft team, just like we do every year, and we laid out a plan. Everyone coordinates with me calling everyone to keep them in line and all on the same page. By everyone, I mean: The Children's Hospital of Philadelphia, the insurance, the PCM, the local orthodontics team, the local ENT and anyone else we nee to loop in. If this sounds like a part time job, and maddening and fruitless, it is. It absolutely is.
Here's the thing though, Liam doesn't like to do things easy. He likes to keep things interesting. So in addition to this whole bone grafting thing and needing braces for six months and all of that needing to be timed just right and coordinated across half of the country... He decided to display some hearing loss in his left ear when we were in Philly last month. Nice.

So we had to come home and find an ENT to run further hearing tests. Turns out his hearing is fine but he is going to need some tubes in his ears because (insert Charlie Brown adult talking sound here)  mwah mwah mwah mwah mwah ENT ear talk stuff about dimples in the ear drums, bone gaps, fluid build up..... whatever. I may have been a Nurse, but man the ears always bored the shit out of me- just put the tubes in already!
We schedule the surgery. Four days away at 8:00pm Liam hollers from his bedroom, "Mama! My face feels funny!!!" In my head I'm like,"That's an odd effing thing to say but Liam never complains about anything so I guess I better act like a Mom and check this out." Good thing I did. In the space of thirty minutes that kid's face had gone from normal to looking like he was storing a baseball in his cheek for winter! It was warm to the touch and sore and I knew we were in trouble but my family was visiting from Ohio so I didn't say anything because I didn't want to panic anyone. The child had Facial Cellulitis!!! OMG. So the next day, the swelling was worse and the redness you would expect with Cellulits was present and off to the Dr we went, the DR says it's from a spacer in his mouth. A spacer he has from having a tooth extracted. But a nurse in the office and I were like "....." So I was like "Liam we are going to the Dentist. We go to the Dentist. The Dentist was like, "Spacers don't cause infections, abscessed teeth do" (and thus the nurse and I were proven right) so Liam had an emergency tooth extraction and was put on a very powerful antibiotic for 10 days, his tubes were out off until tomorrow and his sister decided that freaking out over having allergies would be the thing she needed to do for 15 days (but that's a whole other blog entry).
 OH! And I totally get that I maybe should have gone to the Dentist first but Liam had absolutely NO TOOTH PAIN. I could bore you with how the infection had bypassed the nerve and made it into the buckle space of the cheek but you would stop reading. I made the Dentist tell me like 37 times how I wasn't an idiot for thinking it was a tooth because there wasn't tooth pain- she was laughing her ass off at me. I kept saying ,"I assessed every tooth!!! Every tooth!!! "
In true Liam fashion, that boy never once complained. Not about his little face hurting. Not about taking that terrible antibiotic three times a day for ten days. Not about being woken up at 4 am for ten days straight to take that stuff. Not about having to swish a horrible mouth wash to heal his gums from the tooth extraction. Not even when his cousin whacked him in his sore cheek with a pool noodle. He is a tough kid and he just takes everything that happens with courage and grace. He trusts me to help him though things. He listens to my explanation of how things are going to happen, how medicine will help him. He is the sweetest and bravest little boy. I hate so much that he has so may things to face in life. I am glad that he trusts me to help him through it all though, it is one of my greatest honors in life.
We did find out that he won't have to have any palate expansion in preparation for his bone graft, for cleft kids, this is a pretty big deal, it will dave him quite a lot of pain and frustration. I am not sure yet when this bone graft will take place, this was my last call of "Hey guys, wtf is happening?" to everyone, hopefully I will have some clarification soon. What is do know is that whenever it happens my son will handle it like a person much older than he is and the maturity with which he handles himself will both maze me and break my heart because he just shouldn't know how to handle those type is situations.

*Ain't It heavy

My daughter is twelve, venturing into teen country, as she will be thirteen in just under two months. I could write an entire fourteen volume set on how unexpected Evelyn turning into a young woman is, how quickly these years with her have flown by and how it all makes my heart ache in the most bittersweet way, and maybe I will someday but, today is not that day. Today I want to talk about a few other things happening. Actually,  things centered around a single conversation, but first I need to add in a little background.

When we started the process of adopting Evelyn, we had all of these choices to make. The first two were: First, did we want a child?  The answer to that was pretty easy. Yes. We wanted a child, with every fiber of our being, we wanted a child. Second we had to decide, did we want to start the adoption process for a "healthy child" or a child with "medical needs"? This, my friends is where you look into the darkest pits of your soul and see what is reflected back at you. For Evelyn's adoption we chose to go the route of a non-special needs adoption. I will not go into the reasons why, I don't feel like I should have to, if you have been there, then you know, if you haven't ever had to make that call for yourself then you can't know. My point is this however, well after we had adopted Evelyn and had her home, I was reading up on adoptions, bonding, attachment, how to be the best parent for your Internationally Adopted child, I read something that struck me. I came across a phrase that said something along the lines of, "Every adoption is a Special Needs adoption." I had to think long and hard about what that meant. I mean, when we got Ev, yes, she had a terrible case of Bronchitis, she had Scabies, she was malnourished- but all of these things were in the realm of what was considered to be expected issues of adopting and accepting a child out of an orphanage in China. No biggie. After I was her Mama for awhile though, I began to pick up on a few things, an independence that was a bit too fierce, a need to control that was just a bit too evident and omnipresent, some borderline OCD behaviors (in an 18 month old child) and that phrase just kept coming back, banging around in my head like an old tin drum.

                                                       The first time Papa ever saw Evelyn's face

                                                                                    Our first family picture
I kept reading. Doing research. I found out about the things that I was seeing in Evelyn's behavior. I found terms for what was happening. Words like Hypervigilence, Grief, Trauma, Obsessive Compulsive Disorder. These things did not scare me, they ripped my soul. I broke because I understood that if my tiny daughter was displaying these things it meant that simply having Les and I in her life wasn't going to enough. I was going to have to take a long hard look at the way we became a family and what that meant for my daughter and then I was going to have to help her.

When a child looses their birth mother that creates a wound so primal and so deep, it is almost incomprehensible. Studies are there to prove that it does not matter if this loss happens when you are one hour old or one hundred years old. The loss of a mother is profound. To compound this wound, my children (yes, Liam had faced this loss as well) were then placed in Institutions where the food was scarce, there were not enough Caregivers to go around so basic needs were barely met, the loving interactions you may have come to think of as part and parcel of a newborn's life did not happen for my children. These things must happen for a child to begin to learn trust and love, to begin to comprehend that someone will come when you have a need. Each individual reacts differently. Evelyn is a fighter. She decided very early on that she would survive no matter what, that she did not need a single person to do so. I have no idea how early this was triggered in her, I can tell you this, it was way too early. We took Evelyn Elaine Fu Mei into our arms when she was 10.5 months old. Her Inner Warriors were already firmly ensconced and doing a mighty fine job of keeping her alive.

                                                          The very first time I held Evelyn
The years passed and we have faced many obstacles together. Those OCD tendencies? We have all but eradicated them. She was still in a diaper and needed to have every single mark that occurred in her skin covered in a Bad-Aid. Every one, or she would freak out. At one point she would have to carry like 7 little purses stuffed to the max with papers and bits of things that she felt was important - all of it junk really, this was everywhere, all of the time. She would hoard food. She would keep food stored in her cheeks for later. The one thing though that we could not get her to budge on was talking about her Birth Mother.

                                                      This was when I had her down to 1 purse

Over the years I must have tried hundreds of times, every time I have met an absolute stonewall of resolution. "They didn't want me, I don't want them." -was a very typical response, but not said in a way that made you think she was mentally healthy, it was said in a closed off, angry way that made me think a storm was coming. She would be in the same room with Liam as he howled in the night in agony over the loss of his Birth Family and she would sit stony and dry eyed, never even blinking, not asking about her family, not offering comfort to her brother, refusing to see the sameness in their stories. She would say, "I have you and Papa, I don't need to talk about my Birth parents."

Recently though, those OCD tendencies are creeping back in, in the form of some Hypochondriac behaviors. This is because I think she is in that twilight of childhood and the dawn of adulthood-feeling so out of control and that is a terrible place to be if you are an adoptee who needs to have a strict level of control at all times. She has started Public School for the first time this year and that's put a lot of new stressors in her life. She has quit Gymnastics, her lifelong sport and started an all new sport. We are in a really strange place with her brother's health issues. Just so many things happening and coming at her that she needs something to freak out over and fuss about and have me helping her with. It's time though, time for me to finally talk with her about why she has these tendencies and why she feels like she has to control and why she might be freaking out over the fact that she is having an allergy attack.

I sat her down and broached the subject, carefully and gently. She was instantly on guard. Face turned to stone. Hands into fists. Complexion pale. I persisted. I had to. Sometimes we have to fight the ones we love to save them. I explained to her that sometimes when a person experiences what she and her brother have experienced in their young lives, that it leaves a mark, that it somehow forms our personality and the way we behave as we move through the future. I told her that I truly believe that the sadness she experienced from loosing her Birth Mother, from being abandoned, from living in and orphanage, from not having a family of her own for ten months was so traumatic that it meant that there were things she was going to live with the rest of her life. I told her that was okay. That to feel that pain meant she was human and that we could work on it together. For the first time in my daughter's life I looked at her and saw her release some of the pain that she has been carrying around. Tears were streaming down her beautiful face. Her shoulders were shaking.

I simply have no words to tell you how my heart felt. It was shattered. My daughter is the happiest, most smiley, helpful, most obliging girl. She walks around the house singing and dancing. She giggles constantly. When I saw her face crumble in that way, when she let that wall down and I saw that pain, I was breathless with the depth of it. The cold truth is that my children carry that pain.  They will. It's my job to help them. I will never be able to fill that darkness, I will never be able to take away that pain, but I can help them learn how to move through it, to find love in this life, to find a peace in spite of it. I can tell them the stories of their beginnings and I can fill those stories with as many possibilities of love that I can and in those possibilities maybe they can find forgiveness and a semblance of understanding.

We talked a good long while that night. She said many things that surprised me. I hope that my responses were what she needed to hear, I hope I was enough for her. I hope I got it right. All I ever want is to be what my children need. I can't be perfect but, maybe, just maybe I can be enough. This was the first time in her life that she ever opened up about her feelings on being adopted, about being abandoned, about having a family other than Les and I. I hope it's not the last as she has so much healing to do. I am so proud of my brave and beautiful daughter. As Shakespeare said, "And though she be but little she be but fierce"

I wouldn't change a single second of my life, it has led me to my husband and my two children. I can't speak enough about how adoption can come into your life and change you, taking you from a person longing to be a mother to having a child in your arms and having all of your dreams come true. I can't begin to describe what it is like to be eating dinner and look up and realize that right there, all of my dreams have come true and I actually got to go to China to meet two of them. I am not naive though. There was a price that was paid. I suffered the pain and grief of infertility. My children suffered the loss of their Birth Families and they are not living in the countries of their origin. But we have love. Love and love and love and love. And we are better together than we would have ever been apart. 

*from a Melissa Etheridge song

**I asked Evelyn's permission to make this blog entry.