Written for Prescription Parents. Karen can be contacted c/o B&R Samizdat Express, 33 Gould St., West Roxbury, MA 02132. firstname.lastname@example.org
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At the time I am writing our story, five years have passed since our second son was born with a cleft lip and palate. How can I put all of the emotions and triumphs to words? I can only try to touch the surface of our experiences. But before I begin,let me first say that we could never have gotten through our "first year" without the many gifted, talented, caring, giving, generous, and loving people that we had for our support system. We were so fortunate to have had our surgeons, specialists, nurses, staff personnel, support group members, friends, and of course our families to help guide us through what could have been a difficult year.
It was January 1993, our baby was due in two weeks. We were at the obstetricians office for our routine visit, when we found out that our baby had a "questionable cleft lip." The next day, by ultrasound, it was confirmed that the baby did in fact have a cleft lip. It was one of those days that you never forget. Our oldest son was 32 months at the time. My husband and I put him in for his nap, and that's when we spent three hours trying to sort though what this news meant. All we had was a book from the public library and a million questions, some of which, to this day, go unanswered. I cried. What did I expose my baby to? Why was this happening to us? It wasn't fair to our innocent baby! I cred. Our baby wasn't even born yet, and we knew he/she would have it a bit rougher from the start. Within the one day I felt guilty, angry, sad, and scared (after our son was born I read somewhere that whenyou ahve a child born with a birth defect you have to mourn the "perfect child"). That was the first and last time I ever felt sorry for any of us.
I knew I had to focus my engergy on delivering our baby, and that I did! Matthew was born January 28, 1993 at 9 lbs. 3 oz. What a healthy big boy we had. My husband's first words were, "It's a boy! It's only on one side! He looks fine!" We were truly ecstatic. We had prepared for the worse, we had seen many pictures and we were grateful for what we had been given. For that first day it was such relief and elation. We loved him immediately. Cleft lip and all, he was truly beautiful in his mother's eyes! The nurses seemed to ask me often if I was okay with everything. I spent a lot of time telling everyone that I was fine.
The second day was the hard part. We had to learn to feed Matthew so that we would be able to take him home. We tried several different styled bottles and nipples. It was a long and somewhat frustrating day. At 11 PM the day before we were supposed to go home, a wonderful nurse came to my room. She had worked in the cleft clinic at Children's Hospital, Boston (where we had chosen to have Matthew receive his care). We practiced feeding. She wrote down notes, told me stories of what to expect. I slept much better knowing that I had successfully fed our son.
We were a little nervous about going home, "could we really do this on our own?" Who had time to think?! It was action from the start. Appointment with the plastic surgeon to find out when the "good stuff" would happen. Appointments with the pediatrician for weight gain checks. And, of course, the usual baby stuff -- shots, etc., and coordinating all with the insurance company, and baby-sitters for our oldest son, and my husband's work schedule. Now that I look back on all of our experiences, the first ten weeks were the most intense. We were just going and going, and receiving so much information. In addition to all of the "cleft issues" we were dealing with all of the normal things too, adjusting to life with two children, explaining a lot to a three-year-old, finance, and work schedules.
I remember during the time from Matthew's birth until five weeks (the day of his first surgery), I told myself daily "all we have to do is keep Matthew healthy, keep feeding him successfully so he gains weight, and take everything else one moment at a time." It was difficult, very difficult. Even knowing that we had the best medical care in the world, as a parent all you want to do is keep your little baby in your arms and protect him forever, but we knew the day would arrive when Matthew's "repairs" would begin. The hardest part of loving your children is the conflict that arises from letting them "go."
I have to stop my story here in order to share with you some thoughts I have about our son, Matthew. When I held our newborn son in my arms for the first time I immediately felt a strength and peace from him. He has always been so easy-going and content. He finds pleasure in the simplest things and enjoys so much of life. I believe that he was born with a personality that has enabled him to be able to cope so well with everything he has gone through in his short life thus far. Matthew is such a special person. It may sound strange, but I have learned so much about myself and life from him that I will always be grateful for him in our lives.
Matthew had his lip adhesion surgery when he was five weeks old. We were so nervous about everything. The first time with anesthesia, the hospital stay, taking care of him afterwards,and of course his overall comfort. They were intense feelings. I didn't want him to have to go through it all, but I kknew he had to. The details are what make the story sad and negative -- not being able to feed our infant before surgery, looking to his trusting eyes as the anesthesiologist took him away, and of course waiting and wondering if he'll wake up and be the same child we had known. The saddest moment of helplessness I have ever felt as a mother came when my husband and I entered the post-op area after the surgery. Matthew was hooked up to the IV, he looked puffy, and he was lifeless from the drugs. All I wanted to do was pick him up and take him away from all of "it." I must say, our first surgery was the worst. Even though we were well informed, nothing prepared us for the whole ordeal. We learned a lot about hospital procedures (that, of course, would help us for the future surgeries), and we went through the full emotions you feel with any "first time." It was difficult, but we knew we had to face it for Matthew's sake. The biggest lesson that I learned from our first hospital stay was that we were the voice for our child, and sometimes we had to be loud in order to be heard.
Matthew's final lip and nose repair was done when he was 15 weeks old. We were actually living a somewhat normal life until about 2 weeks before the surgery when we went into "hiberntion" so none of us would get sick and pass it on to Matthew which could potentially delay the surgery. so there was that narrow window of contentment that lasted for about 6 weeks -- from 2 weeks post-op to 2 weeks pre-op. As I write this, I noticed that I have yet to mention the "welcoming sleeves." We called them arm restraints. While others saw them as cruelty, we knew they were serving a purpose. I had my days when I chose not to go places because I couldn't stand the look of pity and puzzlement ont he faces of people as they looked at my son. I guess with everything else that we had to deal with I wasn't going to subject myself to the ignorance of others.
The magical moment came for me when we removed the Logan's Bow after the final repair. Matthew was always "normal" to us, but now he looked "normal" to everyone else. I wanted to invite the world over to see our miracle. That's when we all said, "Wow, thank God for modern medicine and for he opportunities we have to help our children." To this day people don't know that Matthew was born with a cleft lip. He looks absolutely outstanding and all of our thanks goes to our plastic surgeon. That day it was as if Matthew was reborn, and with that came all of the emotions that come with the actual birth of a child. Those feelings are indescribable.
The next 4 months were delightfully uneventful. We passed all the appropriate milestones, but always in the back of my mind was the thought of "one more (surgery)." Then it was the cup issue. Matthew had to get used to feeding through a cup because after his palate repair he would only be able to use a cup. To be honest, I don't remember it being too difficult. I must say that I think it was because Matthew was such a content baby who, to this day, enjoys his food no matter how it is served to him. I also believe that if it has to be done, it will be done. Attitude towards anything can make or break the success of the "mission."
We made it to the palate repair surgery in good health, with no more bottles. I still think it's incredible to have a 10 month old baby feeding solely form a cup. This post op was, for lack of a better word, interesting. Matthew's mouth seemed to be filled with the "packing" used to promote the healing of the palate. It was a bit messy at first. It also seemed strange for us not to be feeding him. The hardest part about this hospital stay was that we didn't sleep much at all, Matthew thought we were at the circus and everyone who came in to check on him was there to play. Like I said before, with all of the stress and tensions that this surgery brought to us, there was Matthew, the patient, having fun and making us all laugh. For some reason, the 5 weeks post-op time seemed to fly by, probably because we knew we would never use the weloming sleeves again, and it would, hopefully, be the last surgery for at least a few years. At one of our post-op visits to our surgeon, he told us that we have no worries as far as Matthew's palate was concerned, he ws like any other child at the same age. Those words were incredible.
Our "first year" was over. Our focus could turn away from lips, noses and palates and turn to life. "Normal" life that would still include more frequent visits to the doctor, and occasional visits to a specialist now and then, but a life full of appreciation for some experiences being in the past. As of this writing, Matthew is almost 5 years old, he is completely healthy, with an average of 5 ear infections per winter. He sees a speech therapist only twice a month, and we are anticipating that need to end before he begins kindergarten next year.
I believe that we are only given situations in our lives that we are able to "handle." Through adversity, we grow stronger. We have learned so much and have met so many people through our experience. We are so fortunate to have gifted, giving and loving people in our lives who are able to give of themselves so that our children can have a better life.
It was only after we had named our "Matthew" that we found out that his name meant "gift from God" -- what a powerful and beautiful gift he is. Thank you.
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