Cam’s entry into our family was not as abrupt as Ty’s because of the severity of his special needs. But just like with Ty, I remember it all so clearly. We were in the process of moving out of our condo and into a house and I was at the new house painting the master bedroom when the phone rang. The placement worker didn’t have many details but she knew they had a newborn in the NICU who had some special needs and would be discharged into foster care. She requested that we come to the NICU for a meeting for further information if we were interested in the placement.
I admit that I was hesitant at first, not knowing how severe the baby’s medical needs were going to be but I couldn’t just say no after she told me that there were no other homes that could take him in our county. If we turned down the placement, he would be placed 3 hours away in a pediatric facility. That hurt my heart so I agreed to the meeting with the understanding that we would need a lot more information before making a decision. At the meeting we were told that they had a 2 week old baby boy who had just been diagnosed with Prader Willi Syndrome.
Prader Willi Syndrome (PWS) typically causes low muscle tone, short stature if not treated with growth hormone, incomplete sexual development, and a chronic feeling of hunger that, coupled with a metabolism that utilizes drastically fewer calories than normal, can lead to excessive eating and life-threatening obesity. The food compulsion makes constant supervision necessary. Average IQ is circa 70, but even those with normal IQs almost all have cognitive deficits and require special education. Social and motor deficits also exist. At birth the infant typically has low birth weight for gestation, hypotonia (weak muscles), and difficulty sucking due to the hypotonia (“failure to thrive”). The second stage (“thriving too well”), with onset between the ages of two and five throughout lifetime, usually is characterized by increased appetite, weight control issues, and motor development delays along with often severe behavior problems and medical issues.
He had just undergone surgery to have a gastrostomy tube placed because he was too weak to suck from a bottle and he was very small even though he had been born full term. We were given a whole packet of information about Prader Willi and what to expect for the first year. Cam’s biological mother was present at the meeting and was very sweet. She had 2 other children who were in foster care but were at the final stages of reunification. The original plan had been for Cam to be released into her care and start the older children transitioning back home. Unfortunately that plan was scrapped once the extent of Cam’s special needs was discovered. His mother, sweet as she was, also happened to be on the lower end of the functional IQ scale. She was not able to understand his syndrome or how to care for him.
Cam rarely woke up at all, sleeping up to 23 hours a day sometimes, and he had to be fed through his g-tube every 3 hours round the clock. His mother expressed her own concerns about her ability to care for him and agreed to temporary custody being given to the state while she learned how to care for him. We expected that Cam’s case would end in reunification once his medical needs were stabilized. That was what everyone expected.
We were given the chance to see Cam in the NICU through the window and he was so tiny and he looked like a cute little alien baby. I knew right then that we would be accepting the placement. No way was I going to be able to let this baby go to a pediatric facility where his mother would only be able to see him every 4 weeks. We had 2 weeks to prepare before his release date and it was a whirlwind of education and specialists and paperwork. I spent 2 hours every day in the NICU room with Cam and his mother, we got to know each other very well. She was such a nice person and I really enjoyed getting to know her better. I had some concerns about her ability to parent a special needs child but figured we had time before we had to worry about it.
The day we brought Cam home
We brought Cam home from the NICU when he was exactly 4 weeks old. He was an incredibly easy baby as he never cried, he didn’t demand anything- the very things that put him at risk in his mom’s home made him very easy to care for in my home. He literally slept 23 hours a day and I tube fed him every 3 hours. I supervised visits with his mother twice a week and he got to visit with his older siblings every other week. The next few months were a whirlwind of doctor’s appointments, therapy appointments, specialists appointments thrown on top of the other stuff that comes along with caring for a child in the foster care system.
What started out as simply Prader Willi Syndrome, and I say that with tongue in cheek because there is nothing simple about PWS, evolved into a slew of other medical issues. Severe reflux cause sleep apnea which led to a surgical intervention, a NissenFundoplication. Cam had a bad reaction to the anesthesia which led to him being on a ventilator for 2 weeks. Then, as we were getting ready to plan his discharge, he got an infection. It was scary how fast he went downhill. He was fine in the morning, I left to go run some errands and got a call about an hour later that I needed to come back immediately. He had been transferred to PICU because they were concerned he had an infection. Prader Willi children do not typically run fevers and they have an almost impossibly high pain tolerance, both of which make it incredibly hard to know when they are really ill. That began our 9 week stay in the PICU that included 2 additional surgeries and quite a few unexpected complications. Two steps forward, three steps back. It was incredibly frustrating and disheartening. We had other children at home, we had 2 full time jobs, we were struggling.
When Cam finally came home we were anxious to get back to normal. He had only been home for 2 weeks when the seizures started. At first, I wasn’t sure what was happening because his symptoms were unlike those of any seizures I was familiar with. He would start with a small twitch in his left eye that would move down his face to his mouth. His eyes would roll back and he would stop breathing. Most people who experience seizures will spontaneously resume breathing once the seizure ends. Cam did not. He required CPR rescue breathing after every seizure. He had to go back on the apnea monitor. It took 3 pediatric neurologists before he was finally properly diagnosed with an uncommon seizure disorder. One more medication to add to the daily regimen. It took us 14 months to get his seizures under control to the point where we didn’t live in daily fear that he would die.
This is just the tip of the iceberg of Cam’s medical needs. He required many surgeries over the years. He was g-tube dependent long after he was able to eat by mouth because he suffered from tracheolyringomalacia. Removing the g-tube was an ordeal in itself. What should have been a simple, outpatient procedure turned into a 2 month nightmare. Two days after the outpatient procedure to remove the g-button and stitch the tract closed, it split open. Literally split open, spilling the contents of his stomach all over the floor. I was in labor with Maia at the time and Cam was with my mom. He was rushed into emergency surgery and they stitched it closed once again. Four days later, the tract opened again. This time, he required major abdominal and stomach reconstructive surgery. They actually took his stomach out of his body, removed a part of it, sewed it closed and put it back inside his abdomen. They used muscle and tissue to close fill in the original tract and told us to pray. I was still hospitalized recovering from a blood clot after delivering Maia so poor Matt was rotating between my room and Cam’s room. We lived in fear for weeks that it would split open again. But it didn’t. Finally, he could eat and drink by mouth, he could wear cute short and t-shirts without the fear of getting the button caught on something. I didn’t have to worry about him opening the button or pulling it out. Progress.
When we were first approached about adopting Cam (when he was 17 months old), we were hesitant. I won’t lie about it. I had missed most of Ty’s third year of life due to extended hospital stays, surgeries and unexpected hurdles. Cam’s mother had long since realized that she could not care for him properly and was willing to relinquish her rights but only to us. If we were not willing to adopt him then she was not willing to relinquish. Nothing like a little bit of pressure to help you make a decision that will change the rest of your life. By this point, Cam had been a integral part of our family for 16 months. But those 16 months had been fraught with uncertainty, stress, and fear. We asked the social worker to pursue other adoptive placements for Cam while they prepared for a TPR trial. We were not sure we were ready to adopt a child with these needs, who would also require life long care.
Cam’s geneticist put us in touch with the Prader Willi clinic in our state where we were able to get a lot of information and support. We were assured that Cam would live a relatively normal, if restricted, life. He would require constant supervision around food and probably some special educational modifications but it was highly unlikely that his previous level of medical care would continue. The department searched, and I say that with sarcasm, for 3 months for an adoptive family for Cam. They determined that if we were unwilling or unable to adopt him, Cam would be placed in a pediatric facility long term. At 20 months of age, they would place him in a facility. There was no way that we were going to let that happen.
Still harboring some uncertainty that we doing the right thing, we signed the intent to adopt papers. I still feel anger to this day at the pressure the department applied to us. We were backed into a corner and given an ultimatum. I hate that. It’s not that we don’t love Cam, we do. That was never the question or in doubt. But with his sweet smile, big kisses and belly laughs comes huge responsibilities. We were stuck between a rock and a hard place. We loved him and couldn’t bear the thought of him being in a facility but we also knew that his disabilities were extensive already and realistically it could be years before we saw the full extent of his disabilities. We knew we were making a life altering decision, not just for us and for Cam but for Ty and any future children. Cam would need lifelong care. I wouldn’t change the fact that we adopted him. But I am still a tiny bit bitter at being coerced into it and I imagine that I always will be. He deserved to be adopted into the very best family that fit his needs. His interests would have been best served by being an only child. The system failed him despite how very much we love and adore him. His needs should have come first.
We finalized Cam’s adoption on June 26, 2004. He was 21 months old and had been in the system for 20 months.
You can read some more thoughts on our reality of special needs parenting here:
I remember the day like it was just last week. It was a Tuesday evening, around 6:30pm. Matt was in class and I had just gotten home from a quick after work Wal*mart trip. The phone was ringing and I was tripping over bags trying to get to it. The caller identified herself as the after hours social worker for our county and asked if we were willing to consider an emergency placement. She said they had just taken custody of a 4 week old little boy who had been abandoned in a motel room. I couldn’t get the word YES out fast enough! We had only had our license for a little under 2 weeks and we had been told to be prepared to wait for up to a year for the placement of an infant. She told me that the on-call worker would bring the baby to us within a few hours and that he basically had nothing with him. No clothes, no diapers, no formula, nothing. I had no way to get in touch with Matt but I knew he would not object to the placement, after all this was the whole reason we became foster parents in the first place.
After I hung up the phone, I did a happy dance around my living room. By 9pm I was so anxious that I couldn’t sit still and I almost jumped out of my skin when the doorbell rang. I opened it to find a very tired looking social worker holding the most beautiful little redheaded baby boy. He was strapped in a carseat and wrapped in a towel and a fleece blanket. He had one little diaper bag with him that was pretty much empty with the exception of a bottle with mold growing in the bottom of it, a few crumpled up diapers, a couple of outfits that reeked of cigarette smoke, and a half empty can of powdered formula. I got the bare basic facts from the social worker: baby’s name was Ty, he was exactly 4 weeks old, he had a junky cough, he had been found in a motel room alone. We signed the necessary paperwork and she was on her way in less than 10 minutes.
I had just settled down to feed him a bottle of formula when Matt arrived home. I wish I had been able to capture the look on his face when he walked in and saw a baby. Surprise, it’s a boy! Ha!
The night Ty came to us
Ty’s case dragged on at the speed of molasses, throwing curve balls at every turn. Ty’s biological mom was sincere in her attempts to get her life in order but she had so much working against her that it was an almost impossible task. We got a call the week after his first birthday that his mother had made the unselfish and heartbreaking decision to relinquish her parental rights to Ty so we could adopt him. Ty’s biological father met with me a few weeks later at the agency and soon after he also made the decision to relinquish his parental rights. He was a really nice guy, just unable to care for a child. I made both parents a memory book filled with pictures and notes about Ty at different stages of his first year and made a memory box for Ty full of the letters and pictures that his biological family wanted him to have when he got older.
Less than four months later, on September 25th 2001, we celebrated the adoption of Ty. He was 22 months old and had been in the custody of the state for 21 months.
There’s a story, of a lovely lady, who was….oh wait. That’s The Brady Bunch. I’m supposed to be telling our story. Let’s start over.
Matt and I met the first week of our freshman year of college. We lived in the same co-ed dorm, I was on the first floor and he was on the third floor. I had seen him several times in passing coming to and from our dorm but we’d never spoken until the day Matt got a cold and went around the entire dorm begging for medication. I took pity on his poor, sniffly self and helped him out. When he was recovered, he took me out to dinner and a movie as a thank you.
You know that moment, when you just know that this was the person you were meant to be with? I had that moment and I wish it was a classier story but you know I keep it real around here. That moment came just a few weeks into our relationship when I had food poisoning and Matt spent the whole night holding my hair back while I puked and prayed for death. When it comes to sizing someone up for future baby daddy potential, any man who doesn’t run screaming from vomit gets a point in his favor.
We had the best dorm on the campus, it was one of the only co-ed dorms and the RA’s were usually the first ones at all the parties. Matt walked me to every one of my classes, holding an umbrella for me if it was raining, and he was always there waiting for me when my class ended unless he was in class himself. I wrote all his English papers and he did all my calculus and statistics work. Negotiation at its best. Christmas break of our freshman year was terrible. Almost a month away from each other, on opposite ends of the state. It was torture. We racked up some super high long distance bills- this was before the age of unlimited long distance and cell phone coverage. Fortunately neither of our parents received the actual phone bill in the mail until after we were already back at school.
We got engaged 3 months later- 8 months after we first met. I wish I had a syrupy sweet, make you gag, engagement story for you- but alas, that is not how it happened. We were at the mall. I was shopping in American Eagle and Matt was supposedly a few stores down checking out all the crap he didn’t need in Sharper Image. I was in the dressing room trying on clothes when all of a sudden, a ring appears under the door of my dressing room. I stared at it for a minute trying to figure out what was going on. Then I heard, “So….you wanna or what?” Insert sarcastic eye roll here. I was half dressed, trying to put my shirt back on before he opened the dressing room door that had a broken lock. Accepting a proposal in my bra in front of everyone shopping in American Eagle was not the fairy tale I had imagined but we never did do anything the predictable way.
We knew we wanted to be married before our sophomore year started which only gave us about 4 months, a fact that gave my mother heart palpitations and night sweats during the planning phase. I knew I didn’t want a big church wedding, there was no question about that. I wanted to be married in an outdoor ceremony, I didn’t want a big wedding party and I absolutely did not want a formal, stuffy event. I wanted our wedding to be fun. I wanted to enjoy my day and not feel the pressure of putting on a grand, elaborate show for other people. In fact, we would have eloped if not for the death threats issued by both of our mothers.
There was a lot of negotiating, a lot of compromising, and a lot of eye rolling. But we managed to plan an outdoor ceremony and reception for a couple hundred people in just over 4 months. This is something I do not recommend, it is not good for your health. We wanted to get married in my hometown so there were a lot of trips back and forth to choose a caterer, flowers, DJ….you don’t realize how much goes into planning a wedding until you only have 4 months to do it. Luckily for all involved, I’m a very decisive person and Matt did not desire to be involved in every single decision. He had only 2 requests- a buffet instead of a sit down dinner and an open bar. Both of which I was in perfect agreement with.
We got married on August 4, 1996 in an outdoor garden ceremony at a gorgeous gazebo overlooking the most beautiful and serene lake. I chose a vintage style gown that had a long train and lots of beading. It was a dress that was also worn by someone close to me and it had very special meaning for me. I knew it was the dress I was meant to wear when I tried it on the very first time and it fit perfectly. It didn’t require a single alteration, which was amazing considering I only weighed 98 pounds and was a size 00 on my wedding day. But that’s a story for another day.
It was supposed to be in the high 70’s on my wedding day. Bob the weather man was wrong. Boy was he wrong. It was 98 degrees on my wedding day- hot and humid! My dress, although gorgeous, was also long sleeved. The men were wearing tuxes….it was HOT. Did I mention that it was hot?! Because it was H-O-T. We chose to have a small wedding party, mainly because all my close friends were spread out across the country and they were all poor, college students. They did all come together and throw me one heck of a bachelorette party before the wedding though. I would love to share the stories of that night but we have all sworn a vow of silence about that party. That’s how good it was. Ha! My sister was my maid of honor and Matt’s older brother was his best man. We had a gorgeous ceremony complete with handwritten vows, it was everything I had ever hoped it would be. Then we spent hours partying under our reception tent before heading to a quaint B&B for the night.
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Cam’s entry into our family was not as abrupt as Ty’s because of the severity of his special needs. But just like with Ty, I remember it all so clearly. We were in the process of moving out of our condo and into a house and I was at the new house painting the master bedroom [Read More]
I remember the day like it was just last week. It was a Tuesday evening, around 6:30pm. Matt was in class and I had just gotten home from a quick after work Wal*mart trip. The phone was ringing and I was tripping over bags trying to get to it. The caller identified herself as the after hours [Read More]
There’s a story, of a lovely lady, who was….oh wait. That’s The Brady Bunch. I’m supposed to be telling our story. Let’s start over. Matt and I met the first week of our freshman year of college. We lived in the same co-ed dorm, I was on the first floor and he was on the third floor. [Read More]
ContactYou can drop me an email at firstname.lastname@example.org if you need to. Fair warning- my inbox is a disaster zone so even though I have the best of intentions it may take me a few days to get back to you. I blame the kids- always asking for food and stuff. PR & Advertising At [Read More]