Unless you live on a deserted island, with no electricity, no television, no internet, and you NEVER interact with another human being in your entire existence, you know someone who is sick. Be it just a simple, take-a-round-of-antibiotics-and-get-better illness, or a monster like cancer, leukemia, fibromyalgia, diabetes, rheumatoid arthritis. Maybe its a child of a friend, or your own, born with Down’s syndrome, Muscular Dystrophy, trisomy 13, Autism, Aspebergers. You may be like me, and have a child who, at 29, has an “unknown syndrome”, and is listed in his medical records by his “symptoms”: severe developmental delay, microcephaly, interstitial deletion of 7th chromosome, failure to thrive, scoliosis, bilateral cleft lip and palate. Yep – that describes my Ryan.
I talk about Ryan a lot. He has been part of my every waking, my every sleeping for almost 29 1/2 years! When he was born, they said he would be lucky to make 6 months. He has “died” more than once, the first time being when he was less than an hour old. Weighing in at only 4 pounds, 4 ounces, with a complete bilateral cleft lip and palate, my big man started out facing not a hill to climb, but a cliff. Feeding would be an issue from day one, and is still an issue today. You see, children with cleft lips, especially those with the palate cleft as well, have basically no roof to their mouth – it is open to the nasal cavity. Imagine a plastic drink pitcher – you know, the one with the “flip” top. What happens when that flip top is not in place, and you shake the pitcher? Yep – your juice goes EVERYWHERE! Well, with no roof to his mouth, Ryan could not suck. That meant special bottles – they are aptly named cleft palate bottles, and the nipple on them is a crosscut. As well, the nipple is longer than a normal baby bottle, and the bottles are soft sided. Put the bottle in, and gently squeeze, and feeding is accomplished. Sounds easy, right? Yeah, okay. I hope you never have to try it. You see, with an open palate, air goes in with all food. Lots of air. Imagine if you will a balloon, full of helium, contained in a tight-fitting container. Then put water into that container. Then release the balloon. Some of the water will remain in the container, however any water on top of the balloon is propelled ahead of it, because all that helium knows how to do is rise. That’s exactly what happens in the stomach of a baby with an open palate. The air bubble in his stomach sits there, get surrounded by whatever is ingested, and then it releases – taking some of the valuable nutrition with it. What people don’t know is that eating burns calories – that’s right, I said eating burns calories. So does sleeping, breathing – every single thing you do. That’s why you need X number of calories a day (I purposely did not put a number here, because every single one of us needs a different amount). Back to Ryan – he was not getting the necessary calories for him to begin to grow. The medical term is Failure To Thrive. Ryan spent his first 13 days in the hospital, until he reached the magic number of 5 pounds and could come home. Foolish me thought that was it. Okay. His next hospitalization came at the ripe old age of 40 days – massive kidney infection, that to this day no one knows how he got it. But with the kidney infection came the wonderful (not) news that he was back under 5 pounds. 11 days later, home. 3 weeks later, hospital. And so we went, managing to sneak my wedding in when he was almost 4 months old, in between hospitalizations.
Thanksgiving that year was interesting. We didn’t know it at the time, but I was pregnant with my daughter. I got up that morning sick as the proverbial dog – but we drove the 100 miles up to my mom’s anyway, Ryan in tow, and I spent the day on the couch. Back home, back to normal. I went to the doctor, found out about the pregnancy, and kept up with Ryan’s appointments, all while being active duty in the US Navy. I think it was the first week in December, back to the doctor we went, and once again, Ryan was admitted to the hospital. I did what had become my norm – went back to work to finish out the day, then call the hospital to see what time the next feeding was so I knew whether I had time to go change or if I had to hurry to make it. So I call. I knew the number by heart, knew most of the nursing staff by first name. Got a nurse I knew, and asked my question. I will never, if I live to be 100, forget her exact words. “Didn’t they call you? Hold on.” My heart was in the pit of my stomach. My pessimistic side took over with glee, thinking the worst. Then a voice I did not know came back on the line “Your son is not here.” “What? Where is he?” “Ma’am, I can’t tell you that, only that he is not here. The Social Worker was supposed to contact you – it says in his records you were contacted. Call this number and they can tell you more.” click. Do you know this feeling? Do you know that as I sit here, almost 29 years later, recounting this I am crying? This pain will NEVER go away. Yes, they took my son away from me – said I was a DANGER to him. I was 20 years OLD!!!! All I had been told up to that point is that with his cleft lip and palate, he would require a little more care, but that once he had repair surgeries he would be FINE. I knew something wasn’t right – he wasn’t growing, he wasn’t developing, but every single time I asked they told me all was well – he just needed to get big enough to have his first repair surgery so the feeding problems would be less. So I switched gears. I went from the worst pain I have ever felt, to anger. Not your run-of-the-mill, I’m mad at you, anger. ANGER! If I was so inclined, now would be a good time for a massacre ANGER. How dare they take my son?????? Who the hell did they think they were?????? So I called. Another call I will never forget. “You have reached the San Diego County department of Child Welfare. Our offices are closed. Please call back between 8 am and 5 pm, Monday through Friday. If this is an emergency, contact your local law enforcement agency.” click. Deafening silence. I spent that night, after my friends took my keys away, leaning on Ryan’s crib, sobbing my heart out. Because it was shattered in tiny little pieces. I had done EVERYTHING they had asked of me – for what???? For them to show me they didn’t believe me. They said I HURT HIM!!!! I WAS STARVING HIM!!!!! That was the hardest night of my life to date, no question.
It was also the beginning of our ongoing journey. Before that time, I believed. If they told me (they being doctors or nurses) to do something for Ryan, I did it without question. I believed they honestly had his best interests, and my success as a parent, at heart. I was proven wrong. The next morning I got on the phone at 8 am sharp, and was able to talk to a social worker who said, yes, she knew where my son was, but couldn’t tell me. WHAT??????????? Nope, couldn’t tell me, but I was to appear in court that afternoon. DO WHAT??????? You have to realize, up until this time I had one speeding ticket. That’s it. Court was where others had to go. Not me – I never did anything to get me there. So, I talked to my command, took a couple of days off, and headed to court. Let me tell ya, it’s NOT the television version. At least in 1984 it wasn’t. It was a jumbled up hallway of coming and going people. A tall woman came into the throngs and called Ryan’s name. I hopped up – she was my court appointed attorney, and because of her I kept my sanity. Thirty minutes later, we were in front of the judge (this part did look a little like television). I got off on the wrong foot with both the prosecutor and my attorney (who had told me to keep it zipped), because his first question was “Do you understand why you are here?” That did it, my always-ready mouth opened “No, sir, I do not. Can you tell me where my son is?” Immediate recess. My lawyer had to go meet with the other lawyer and the judge in “chambers”. It appears that everyone had been told I knew where Ryan was. My impromptu outburst indicated a slight problem in their “case” – seems that even the most heinous of parents must be informed of the whereabouts of their child, even if its simply the generic “they are in foster care”. Someone signed off that I had been told. I never was. So after their little discussion, back in they came. The judge looking like he was about to toss lunch. We were “continued” til the following week, during which time Ryan was to be in foster care, and I was allowed one 2 hour visit. I knew this time to keep it shut, although the one 2 hour thing was brutal. You will have to understand there was a case in the news not long before this of children being abused in foster care, so I was not feeling good about where my son was. Not at all. Back to court the following week, where it was ordered that he be seen at Childrens Hospital of San Diego. Up until this time he had been seen at Naval Hospital San Diego, commonly known as Balboa, which is where he was born. The judge had also ordered, unbeknownst to me, that all of his medical records be brought to court at this second hearing. Imagine my surprise, shock, and speechlessness when the “prosecutor” said no records had been found. None. I was active duty military, and there was NOTHING in my medical records that I had even been pregnant, or had my son. He had NO records. NONE. No record of the multiple hospitalizations, no record of the weight roller coaster – nothing. I feel quite sure the judge ordered them to be found, but I am here to tell you, almost 30 years later, those records have yet to come to light.
Fast forward to our visit to Childrens. First, by this time Ryan had been in foster care for 3 weeks, and I had seen him twice. I was “allowed” to be at the doctor’s appointment. The foster mother let me hold my son, but said it was “against regulations”. Then came the eye opener. Ryan, bless his red-head, had lost almost 2 pounds! He weighed less than a pound more than he had 7 months before! My son had proven that it wasn’t me. But this was no reason to celebrate – it was life threatening for him. Anyway, the new team of doctors took one look at him and said “There is more going on here than just a cleft palate”. That is the true day Ryan was “born” – the day someone put in words that all was not “normal”. It took me 4 more months to get my son back – he had to be “reintroduced” to me. But I go into all this detail for a reason. This was the first 7 months of the last 29 1/2 year journey. Let me hit some highlights of the other 29 years.
When Ryan was 3, we moved from Southern California, to Northeast Mississippi. My husband had gotten out of the Navy, and we moved to be closer to his mother, who was recently widowed. My mother had passed away in June, 1985, when Ryan was 13 months old. She never had a lot of interaction with her first grandchild, mostly because of the advanced state of her alcoholism. In August, 1985, Ryan got his baby sister – healthy as the proverbial horse, and to this day a joy to me. I hope that having Ryan as a big brother was a positive for her growing up. This move was a big one – 2000 miles, with two small children. But that was not all. We had to move all of Ryan’s care. I was so blessed by the doctors at Childrens Hospital San Diego – especially Dr. Marilyn Jones, who headed his care team. I had referrals to all the doctors I would need before I ever left California, which made at least that part of the transition easy, or as easy as it could be. The doctors and therapists at Childrens had become family, and I would be lying if I said it was easy to leave. I was frankly terrified. Not of moving, or living in a different part of the country – but of how it would affect Ryan. At 3 years old, we still had major feeding issues, among other things, and I was scared he would not adapt. I should not have worried. If the last 29 1/2 years have taught me anything, it’s that Ryan has this. No matter what it is – Ryan is in control. He has proven this over and over – and he has laughed in the face of my nervous and scared tears.
After the move, we got Ryan lined up with doctors at LeBonheur Childrens Medical Center in Memphis, and a local pediatrician, as well as the Cleft Palate Team through Regional Rehabilitation. They were great – and helped us a lot. There were some things I wouldn’t have done knowing what I know now, but at the time everything we did was for his benefit. There were mouth surgeries, to repair the palate and lip. He still has what is called a fistula – or opening – in his palate, but it is very small. It was left to accommodate growth, and later it was decided that it was not hurting him to have it, so there was no reason to put him through yet another surgery to fix it. Ryan also developed a scoliosis, and we had multiple issues getting funding for his care – you see, people who do the funding want the child to have a diagnosis. Ryan had multiple symptoms – but to this day has “no known syndrome”. Yep – he is Ryan. But his scoliosis was to prove to be the turning point. His size was an issue for spine surgery with the doctors in Memphis, and his curve was beginning to compromise his lungs. So I did what any thinking parent would do – I called University Hospital in Jackson, Mississippi. I got a return call, not from a nurse, but from the orthopedic surgeon, who agreed to see us. Dr. Ronald Kendig – my angel, Ryan’s savior, and now truly an angel looking over us. Through Dr. Kendig – we were “hooked up” with all the doctors and specialists we needed. Ryan had his initial surgery to place a “growth rod” in his spine, which would be “adjusted” to straighten him up as much as possible. Years of adjustments. Hospital stays. Outpatient surgeries. 64 of them on his spine, including the first and last – the fusion. Ryan has double titanium rods in his spine now, and his curvature is stable at 38 %, but he is starting to “twist”, a common problem for which nothing can be done. We had a feeding pump for a while, to stretch his stomach. That worked too, and now he is a svelte 75 pounds, at about 4 and a half feet tall. He has arthritis – no surprise, with all the other skeletal issues. Ryan has had 19 sets of PE tubes in his ears, and finally outgrew the constant infections. I realized, writing this, that his initial back surgery was 20 years ago this past January. I know this, because part of his recovery meant that we were both off work a lot, and in December of that year we had our youngest son, who is now a sophomore in college.
Yes, I blasted through 28 of the 29 years, and for that I am sorry. I hope to one day have a chance to fill in the rest of this – year by year, surgery by surgery. But the whole point is – Ryan is coasting along toward his 30th birthday next May. No one can even hazard a guess as to how many more birthday’s he will have – but it doesn’t matter. This child changed my life. I know – all children change their parents lives. But Ryan, my oldest son, changed me. He taught me how strong I really was – without my knowledge. He showed me how to smile in the face of adversity – no matter how bad. He allowed me to bend in the strong wind, and not break. No one who has seen him go through surgery after surgery, illness after illness, and continue to smile, laugh, and be happy – when I’m here to tell you that you or I would have been in a fetal position sobbing if it were us – can not be changed – for the better. He is my constant silver lining, no matter how dark the cloud. I just wanted to share him with you. Because it is because of him that I understand. He is my Angel Here On Earth, and it is because of him that I can do what I truly love to do – help others. Because of Ryan, I understand adversity. Because of Ryan, I understand medical issues. Because of Ryan, I know what pain is. Most importantly, because of Ryan, I know compassion. I have written a lot about cancer – and there have been those who have said “how can you understand, with no experience with it?” This is my answer. This amazingly exceptional young man, who will never marry, will never speak words, will never leave home, will never hold a job. You see – Ryan’s symptoms will eventually end his life. There is no treatment. There is no cure. There is no surgery. There is no research. This is my reality. After 29 1/2 years, I know I will never have a “syndrome”, a “disease”. My son is my son. Quite literally, there is not another person on this earth like him – at least not the last time the medical databases were checked. So you wonder why I understand? Why I get it? Now you know.
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