If you listen...listen close...you can hear when the heart stops...when it broke.
On August 8th, 2011, I got up uber-early for work like I always did. But on the drive and for the first few hours, I noticed I didn't feel the baby move. I knew from all of my obsessive reading that a baby is supposed to move 10 times an hour. Wasn't even close. And he didn't move much the day before actually. But I never assumed anything could possibly be wrong. Bad things don't really happen. Not to people I know. Those are just stories you read about or see in movies. There's no way I'd be a statistic. I went to the hospital just to be safe and they had me wear a monitor and click a little button when he moved, which wasn't often, but he WAS moving. Todd showed up while I was getting ready for an ultrasound with my hospital bag and pillow (I'm weird about my own pillow) and I laughed because this was just a precaution. He was jumping the gun. No way we were having a baby today.
The ultrasound we were doing took half an hour and looked at several different things then assigned the baby with a number between 1-10 that would determine what happened next. The tech told us she was assigning him a 4. She said that wasn't high enough to be comfortable but on the bright side, her money was on me having a baby that day! The doctors agreed and before I knew it, I was being induced. Todd called our moms and some friends and blew up Facebook. He got me a magazine cause we figured this could take awhile but before we knew it (literally, like an hour after induction began), I was being told that the baby wasn't tolerating the induction medication and they wanted to do an emergency c-section. Fine by me! Even though he was tolerating things, I was still super calm. I was a naive idiot. My vagina would remain the same! I'd get pain meds! But they don't make meds for the pain that was to come.
They took Todd to another room to get ready for the delivery and then I was alone with strangers. I knew no one. My doctor wasn't there. I was cold. The room was so sterile and terrifying. They were about to put a needle in my spine. Panic took over. I was no longer calm. I went from zero-to-freakout in no time flat. They were positioning me on the edge of the table for the spinal, telling me how to sit and what to do (or not to do) and I lost it. My heart was pounding and I couldn't breathe. It was my first dose of "This isn't the way it was supposed to go". The anesthesiologist tried to calm me down, saying with my heart rate so high, it was dangerous to put the needle in. I had to suck it up. I was just prolonging getting to bring my son into the world. So they began and I did some hippie nonsense deep breathing but I felt an electric shock through my leg and the terror began again. I thought they did something wrong! I screamed! I guess that's common with spinals and making sure it's going in the right place but DAMN! Give a girl a heads up!
Then I realized I couldn't feel my legs and that is very unsettling. I kept trying to will myself to make them move, like in Kill Bill. It was still cold. Still so sterile. And not a single friendly face. Probably because they knew. They could tell from the ultrasound and I couldn't. But I do have faint memories of a nurse holding my hand and rubbing my head as hot tears rolled down the sides of my face. The sheet went up and Todd came in and took over hand-holding duty. I felt so strange. Doped up. And like I wasn't even in my body. Spaceship. They asked me how I was doing and I said I was nervous. They told me there was nothing to be nervous about since they started cutting already. We would be seeing him soon. I felt strangely calm again. They had Todd stand up to see his baby being born. When they pulled him out, Todd cried and then I cried. I asked how he looked and Todd said, in a happy, quivering voice, that he was beautiful. I didn't get to see him right away. They were fussing over him and stamping his footprints. They even stamped them on Todd's gown, so cute. Spencer Lee Fonzarelli was born at 3:53pm on 8/8/11. He was 6# 1 ounce and 20" long. My string bean. When I saw him, I was in love. He had a tiny nose and full lips and cheeks. The rest is kind of a blur but in retrospect, no one in the room really made a big deal over him. It was very quiet. Not like on TV. I thought they were letting Todd and I have a moment as our new little family. And his APGAR score wasn't great but still, in my mind, he was here and everything was fine.
Eventually, I was wheeled into recovery where all I did was vomit from the spinal and probably all the freaking. My parents, sisters, nephew, Todd's mom, 2 of my best friends...they were all there while I tried not to puke in their presence. I was still on Cloud 9. My boy was here. I was just so tired. I didn't mind everyone else spending time with him because it gave me time to just feel junky and stoned. I'd have his whole life to spend with him. Spencer's hands and feet were a little blue but I thought nothing of it because no one said anything bad to me. Everything had to be A-OK! When we finally got to our room, they were concerned because he was having trouble regulating his body temperature so our guests left and we were alone. I just stared at him and took pictures of this adorable little dude! He was soooo sleepy and sweet. Again in retrospect, they never had me try to nurse him. They just kept taking him here and there and again, I never thought twice. Around 11:00pm, Todd and I were beat. I actually asked if Spencer could stay in the nursery so I could just crash. During that time, they never brought him back to nurse either. Not all night. Just another thing I'm noting now. I was happy to just have that time to sleep. I was selfish. I had no idea how much a c-section takes out of you. I'm sure it's nothing compared to labor and delivery but it was still surgery. Still tough. But I was thinking of me. If I could go back in time, I would've kept him with me all night. I can't believe I had them take him. I was just so out of it. The next time I would see him, it would be after the worst moment of my life. When I saw him again, I would not be crying tears of joy.
In the morning, as I said, I wrote a quick blog announcing his arrival and how fulfilled I was. How I would write more when I could but for now, I was just so happy. I kept wondering when they would bring him to me. I'd been up for awhile. That's when his pediatrician, a family friend, came in. She said she had just examined him, which I didn't think she'd do for a week but was still clueless. I never thought they'd call her in to deliver bad news. I remember how my bed felt, what the room looked like, how the light came through the window, how her face looked. I remember when she spoke and her voice. She said, "I just saw Spencer and he looks great. Adorable. My only concern is that he's exhibiting some signs that are consistent with...". At that moment it could've been anything. I STILL was so naive. So clueless. Nothing bad could happen to us. I was STILL SMILING LIKE AN IDIOT.
"...Down syndrome".
After that, she could've said anything. She could've filled the room with tigers. She could've shot Todd in the face. My heart stopped and my mind stopped. She told us that a genetic specialist would be coming to talk to us at some point. Todd and I held hands for a moment but I couldnt feel anything and I couldn't look at him. I just stared. I think he just stared, too. We stared and held hands and I just died inside as the seconds went by. A nurse came in and all you could feel was awkwardness. She was in pain for us. She returned with Spencer a few minutes later and handed him to me. Like she thought he would make me feel better. Like being with him would make it hurt less. When the pediatrician left, we didn't say anything to each other. We didn't move. I just looked at Spencer. To me, he did NOT look like he had it. He didn't have the line down his hands or a thick tongue. I GOOGLED images of babies with Down syndrome like a psychopath and they looked nothing like him! Still precious but not like Spencer. Not AT ALL! He looked like me, and Todd. He was adorable. He was small and perfect. How could this happen to him? This was OUR FAULT. We wanted him. We got pregnant. Our genes got fucked up. We did this to him. The pediatrician returned with the geneticist, and it was like I was watching this happen to someone else. And I still couldn't accept it. They didn't say he had it FOR SURE. They just SUSPECTED. I was bargaining with a higher power. If he didn't have it, I'd be a better person. I'd do anything for this to be a mistake. I'd change. I'd be different. But it was pointless.
Once all the doctors left us, taking Spencer with them, two of my aunts came in and I felt like I was going to vomit. It was obvious we'd been crying and we couldn't hide this for long. I couldn't stomach it all. They came to my bedside and asked what was wrong, we had to tell them that they thought our son had Down syndrome. It was so painful. I'm crying now as I type this. It's like it was yesterday. I asked them to call my mom then Todd and I went to the nursery. At this point, everything just gets worse and worse. They had been trying to feed Spencer but he wouldn't eat. They thought it was possible he was having heart issues, which are common in kids with Down syndrome. But I still couldn't believe it was true. They had a hard time hearing his heartbeat. He wouldn't nurse. He wouldn't bottle feed. I begged him to eat as I cried and rocked him. I couldn't stand thinking he was hungry. Or that he might be in pain. Or his heart might be hurt. Things weren't falling apart around me but I loved him! He was my son and he was suffering! They told me they thought it would be best if he was transported to Rainbow Babies & Children's Hospital. I took a shower while they ran tests. I just stood under the water, crying and throwing up. He was going to be made fun of, picked on, called a "retard", have his feelings hurt. Would he have friends? Get married? Ever live on his own? Would people come to his birthday parties? Invite him to sleepover? Would he play sports? The more I thought, the more I broke down. I didn't even recognize myself in the mirror. I just looked painfully ugly. Ugly inside and out. My sister had texted me saying that her husband was sick as they were about to get on a plane to Las Vegas. Jokingly, she said I should pray for them. I responded, "They think Spencer has Down syndrome. You should pray for us".
My mom arrived and was relatively calm (I only found out recently that she suspected the moment she held Spencer that he had it, and she knew how much pain I would be going through). She and I even cracked a few jokes while Todd got something to eat. Then I would feel bad for laughing. It came in waves where I would feel like myself and then I'd remember and die all over again. It's like I felt guilty whenever I felt like myself. They wheeled Spencer into my room. He was in an incubator strapped to a gurney and there was an entire team surrounding him. Things suddenly got very scary. And very sad. They were bringing him to say goodbye. I had major surgery less than 24 hours before so I couldn't go with him. I felt like I was abandoning him. I could've left against medical advice but they begged me not to. So I rubbed his head and squeezed his hand and then he was gone. I fell against Todd and sobbed but then he, too, was gone. He went to Rainbow so Spencer wouldn't be alone. My dad, sister, and my cousin went, too. He wasn't alone but I wasn't there. His own mom. I was the most emotional and fragile I'd ever been and then my damn milk came in. Perfect timing. Milk for my baby that wouldn't eat. So I was behind a curtain in my room, pumping and storing breast milk for a baby that wasn't there. They took him from me.
I was surrounded by family and friends all day, everyone probably worried about my sanity. I worried about it. Todd kept me updated via text and sent pictures. But things were bad. First, we found out that he did NOT have a heart issue, which didn't help me to except that he had Down syndrome. Heart issues are super common, and he didn't have a heart issue! Maybe he DIDN'T HAVE IT AFTER ALL! Genetic testing took 21 days! But that's not the point. It turned out that he had a pneumothorax, which is just a fancy name for a collapsed lung. When the lung collapsed, it moved his heart over so they couldn't hear it well. They were going to give it some time to see if it would resolve on its own and if not, they would have to put in a chest tube. A chest tube in my poor little baby. On top of that, he had jaundice, which I know tons of babies have but it was just another thing! They had to put him in the incubator under the lights with little goggles on. When Todd would send me pictures, he would say that Spencer was catching some rays. I think he was trying to make light of it so I wouldn't be upset. After all, I wasn't there. Then there was the issue of infection. Spencer's bloodwork indicated that he had an infection, and possibly sepsis. Now I was only very early in my schooling but I know what sepsis means. It's bad news. He was losing weight and struggling. He had a crazy EKG with tons of wires attached to him. He looked more robot then baby. I sobbed.
That night, Todd sent me a picture of Spencer and his incubator with a stuffed frog my aunt had given him next to it. She told us that frogs can only move forward. It seems so appropriate at the moment. I just cried and cried when I saw the picture. He has to move forward. I told the nurses that I wanted to leave. I wanted to be with my baby. They told me we would talk about it in the morning. Todd came back to my hospital and slept with me. In the middle of the night, I woke up shaking. I had a high fever and was in incredible pain. It turns out that I was engorged, and if you don't know what that means it has to do with breast milk. My breasts were gigantic!! I'm talking porn star grade breasts. I even made Phoebe look at them. And they were hard as rocks. The nurses gave me some medication and hot towels and I took hot showers to try and get the milk to flow again. Breast-feeding kind of creeps me out so even typing this is a little weird for me. I was just miserable. I almost wish that Todd hadn't come back to my hospital. I just wanted to feel lousy alone. I WANTED to be lonely. Anyway, when the milk started going again, it really started going. I had a really fantastic supply which was good news...if Spencer would ever start eating. I pumped all night long and never slept so that Todd would have plenty of milk to take to the hospital with him in the morning.
The next day was a lot like the last. I hadn't seen my baby in 24 hours. I had a lot of visitors so that I wouldn't be alone. It was the moments when I WAS alone that I couldn't stop thinking. And the more I thought, the worse I felt. When they would bring my meals, I would always get some sort of little present commemorating that I had a baby. A little engraved spoon, little notes, etc. every little gift I got just made me hurt more and more. People have told me that in situations like this, it's almost like you have to grieve. You were expecting something else. You have to grieve the loss. But whenever I think of that, it seems so unfair to Spencer. It's not his fault that he wasn't what we were expecting. He was awesome. And I KNEW he was awesome. My aunt spends time with the woman who practices Reiki. I don't really believe in that stuff but some of the things she said struck a chord with me. The lady said that Spencer picked us to be his parents. And it sort of makes sense because we know what it's like to be different. But even though it made sense, it was still difficult. She also said that Spencer was trying really hard to get better so he could go home with us. Thinking about that makes me cry even now. Thinking about him working hard for US, that he wanted US? I needed to be stronger for him. I needed to BE WITH HIM. My dad spent most of the day with Spencer. He was hooked. They are still best buds to this day. And Todd kept updating me and sending pictures but I wanted to be with my baby. Was seriously losing it. I told the nurses that I wanted to go but again, they begged me to stay. They said that most women who have C-sections stay for five days. There was no way that I was staying in the hospital away from my sick child for five days! They thought he had sepsis! What if he died and I wasn't there?? I felt like a prisoner. It was comforting to know that Todd and my dad and my sister were always with Spencer and I know that they are great people. But they're not Spencer's mother. I am and I wasn't there. I don't think I'll ever get over that in my lifetime. There was one spot of sunshine that day. Todd called me and told me that Spencer had eaten! They tried giving him formula with a bottle and he drank a little bit so they wanted to know if there was anyway I could get my breast milk over to that hospital. My poor dad who had spent alllllll day downtown and had JUST gotten home came alllllll the way to my hospital and collected the milk and drove alllllllll the way downtown again and took it to Spencer. What a guy. Handing my dad a box full of my breast milk was a little weird, but it was all for a good cause. My guy was eating!!
The next morning, I insisted that I be released. They really wanted me to stay one more day but I just couldn't take it. Even though I was in pain, I needed my family to be together. Todd had been posting pictures and things on Facebook mentioning how much mommy missed her little boy and it was killing me. Even though people knew that Spencer was struggling and in the NICU, we never did, and still never have, said that he had Down syndrome on social media. Just couldn't bring myself to do it. A friend of mine said that our friends in common were asking her what was going on, and she wanted to know what to say. I told her to tell the truth. I told her to tell them what the doctors suspected. I wanted people to know. I wanted everyone to know what they suspected because I could not say it out. I didn't want to have to say it. And at that point, I still didn't believe it. I was still holding onto hope. I packed my belongings and Todd came and took me to my baby. Itbwas the longest car ride of my life. When they took my ID badge picture, Todd said, "This is mom!". I walked into his NICU room and he was in his incubator catching some rays. I sobbed and reached in and held his little hand. I was so glad to be back with him. He was still eating, though not enough. His jaundice was almost gone. And not too long after I arrived, they said that his pneumothorax had resolved and there was no need for a chest tube. We also found out that there were no heart defects! And no intestinal issues. When Todd posted an update on Facebook, he said it looked like all Spencer needed was his mom. That made me feel so good after feeling so rotten. This was the first time that I had been there for rounds, and when the doctors would say that it was suspected he had Trisomy 21, again, I would die inside but I tried to focus on the positive. Things were looking up for Spencer. The attending doctor said he never looked or behaved like a sick child she said that she never believed he had an infection. And it turned out he didn't! He never had an infection and was never in danger of becoming septic. The sample taken by my hospital was contaminated by bacteria from someone's mouth! That pissed me off to no end!! But I just had to focus on the bright side… Spencer was getting better. Even though he was eating, he wasn't getting enough. They had to put and NG tube down his nose into his stomach. When he wouldn't finish a bottle they would pump the rest through the tube. We laughed because he had a tape mustache. There was a great moment where they asked me if I wanted to feed him. I didn't get to hold him a lot when he was in the NICU so it was like Christmas morning! I finally got to hold and feed my baby!!!
But there were still low points. I couldn't sleep. Even with the pain medications I was on post surgery, I never slept. I pumped breastmilk every three hours and watched mindless television at night trying to distract myself. The goal was to get Spencer to the "step down" unit. Once he moved there, we would be closer to taking him home. But he couldn't go to step down unless he was fully eating on his own or had a picc line. They tried to put one in but he was just too tiny. Watching him lay there squirming under a sheet while they tried to get it in was just horrific. How much was this boy going to go through? At this point, he was only 3 days old! Everything was better when my friends or family were there. Phoebe brought me a care package (and I should note that I would not have made it through this ordeal or anything following without her), Jess brought me cookies and pastries, Ben rode his bicycle all the way to the hospital to sit with us. I remember when Karen walked in the first time to visit Spencer, she took one look at him and cried…but they were tears of joy. My parents were always there...my dad came every day before work and brought my mom every day after. My sister Wendy came on every lunch break. But when I was alone, it was a nightmare. I was just in so much emotional pain. One night, I was putting breast milk into the refrigerator when a nurse came in to examine Spencer as they did every two hours. He asked me if we knew before his birth that Spencer had Down syndrome. I snapped at him and told him that we didn't even know for sure NOW that he had it!! I was sort of angry. But Todd was awake behind the curtain and he said he just shut his eyes and cringed. Todd had accepted that Spencer has Down syndrome and knew this conversation was going to hurt me. BREATHING hurt me. I was weak.
By some miracle, Spencer began eating on the regular. I got to hold him more often, and Todd got to change his diaper! He was probably 5 pounds or less at that point but we referred to him as the Fat Bear, because when the nurses would burp him his cheeks got all squished like a fat little teddy. Things like that provides me with happy moments. Since he was eating better and had the NG tube if needed, they agreed to let him move to the step down unit! He had graduated! But when I inquired how long we would be there, it was very vague. They said it would really be a day today thing. The uncertainty was unsettling. Knowing that we were going home would mean that he was all clear, medically. That was a ways off. We were told it would probably be at least a week of living in the hospital. We dressed him in clothes for the first time (and had to send my sister to the store for more baby clothes because we weren't expecting to be there that long and we weren't expecting him to be so small) and moved to our new space, which was kind of exciting. We were able to hold him more often then. They recommended that when he was in his crib, that he be hooked up to his monitors (Todd and I still feel sick if we hear those monitor sounds...we're conditioned to feel pain when we hear them), but if we wanted to hold him all day, we could! It was the first time that I got to do kangaroo hold with him! I took off his clothes and put him in my tank top. It was the happiest I had been since he was born. But it didn't last. At this point, I was flipping between being angry and being sad. I was so mad that women everywhere, even horrible women that I knew, we're having healthy, happy babies, problem free babies. Now don't get me wrong, I would never, ever, ever wish for something bad to happen to a child. But why was something bad happening to MY child? Why was I being punished? Why was HE being punished? Even when Spencer's half brother came to visit, I had to hide in the bathroom. He didn't know yet about Spencer's developmental disability, he just knew he was sick. I just couldn't handle anything. I kept thinking about all the things that Aiden could do that maybe Spencer couldn't do. All the things that Spencer might struggle with. I know differently now but at the time, I was a fragile egg. So I hid in the bathroom. I laid on the floor and cried. I took a shower, I pumped milk. I hid.
Eventually the genetic counselors came to visit us. Even though results from genetic testing takes 21 days, they had received preliminary results. Spencer did have Down syndrome. There was no more praying. There was no more bargaining. This was now our reality. The genetic counselors examined him and took photographs. They asked us a lot of questions. And they told us that if they hadn't been told he had down syndrome, they wouldn't have known right away. They said that the physical characters we're extremely mild. This was strangely comforting to me. I thought he was adorable! I was in love with him from minute one. I've never stopped loving him from the day I found out that he was going to exist. I would have loved him if he was nothing but a giant eyeball! But knowing that his physical characteristics were mild just made me feel better. Maybe if people didn't know right away, when they first saw him, he wouldn't be picked on. At this point, I was not putting a lot of faith in the children of the world. I know children to be extremely cruel. I know that it's hard to be different. I know that I've been a mean child myself at times. And I know that I've been a victim at times. I was not giving kids these days enough credit. Not at that time. I know so much more now. Having Down syndrome now is not like it was 20, 30, 40 years ago. But that's another story, not the one I'm trying to get out of my system. So there we were, our son had Down syndrome. A social worker did come to talk to us about our options. There are 250 families in Cleveland waiting to adopt a baby with Down syndrome. Until she came in, there were no options. At my hospital after he was born, before I knew about the Down syndrome, someone came in and asked us if we were considering adoption and I screamed no!! I had never considered anything other than getting Spencer home with us. His room and his home and his family was waiting for him! But once it was official, I started questioning myself. I started questioning Todd. I was questioning our marriage, and our ability to be parents to a special needs child. I tried several times to talk to Todd. But it was so difficult to get the words out. I asked him if we could talk…about whether or not Spencer should come home with us. Then and now I feel sick even thinking about it. Sick saying those words. Sick even considering that he wouldn't come home with us. What if we really truly had considered adoption? What if Spencer was not here in his footie pajamas watching Thomas the Tank Engine with his little brother?? I can't imagine the hole that would be in my life. And in the lives of so many other people who love him. He has changed a lot of people. He has taught a lot of people. He's amazing and for a split second I considered whether or not I should be his mom. That will be the worst thing I've ever done in my whole life. Nothing was wrong with him. Something was wrong with me. I had to grow up. I had bonded with him the day the pink plus sign showed up. He was MINE. And while several of my friends said that no one would judge us, one of them told me that she truly believed I would never forgive myself if I gave him up. She believed that I wanted him and would never forgive myself. She knew that he was my son and I was his and I was only questioning myself because adoption was presented to us. I was worried about me not being the best mom, not about him. And that was that. He was coming home with us...eventually.
Every day, they'd say maybe tomorrow, maybe tomorrow, maybe tomorrow. My parents brought us meals, brought tiny baby clothes for Spencer, brought me a new fluffy blanket and pillow, new underwear, new socks, new pajama pants. Anything to try and make me feel better. And I was still riding the waves. Some moments were just perfect. Anytime Spencer was tucked away in my shirt, and Todd would be reading a book, I would think, this is okay. We can do this. He's perfect. It's perfect. But it wasn't perfect. We had just had a baby and were living in the hospital. I hadn't slept in days and couldn't bring myself to eat much. I was below my PRE-baby weight. Todd and I didn't talk much. And things were about to get worse. My other sister came home from her Vegas vacation, and when she walked in the room she cried and told me how sorry she was. I cried and for the first time out loud said how unfair this all is. She became a total Spencer hog. It didn't matter who else was there, she was going to hold him. She still is Spencer hog, ha. That day, another bomb dropped, a new pair of doctors came in to talk to us. They were from the Oncology and Hematology department. I knew what that meant. Cancer. They were there to tell us that Spencer had a pretty leukemic condition called TMD which is common in children with Down syndrome. They said there are abnormal cells in the blood that look like leukemia, but that it typically resolves around 12 weeks old but means it's possible that he will develop actual leukemia sometime in his life. I looked over and saw my mom making a face that sort of said, "Well of course he has this...what ELSE could happen to this boy?". They asked me if I would consider letting Spencer be part of a national clinical trial that studies TMD. There are two children from every state involved. I agreed because if anything he goes through could help someone else, why not? But when those doctors left, I realized my whole family was sitting in silence. And that's when I lost it. And I mean LOST IT. Todd was in the bathroom and I just screeeeeeamed. Why is this happening? Why is this happening? I did everything right! I did every single thing right! It's not fair!! I could feel the pain in every inch of my body. He has Down syndrome and now he has cancer? In what reality is this fair? What the hell did we do in our lives for this to happen to him? My dad had his arms around me as I just babbled incoherently. I'm not really sure what else I said. I know that some people in my family were crying, and I know I looked over and saw my 15-year-old niece and felt terrible that she had to watch me fall apart. When Todd came out of the bathroom, he took my Dad's place. I was still screaming and sobbing and staring out the window while my poor family sat in silence. Finally, I heard my mom quietly ask Todd if he thinks they should get me a tranquilizer. That's when I stopped crying. At that point I realized that this was rock-bottom. I had hit it. When your mother asks your husband if they should get you a tranquilizer, you can't get any lower. From that point on, I just had to stop. I focused on getting Spencer better and getting him home. They had a plan to monitor the TMD, and there was nothing I could do about the Down syndrome besides love him, be the best mother I could be, be his advocate, and give him the most normal life possible. To me, he was just like any other boy and that's how I was going to raise him. And that's how I HAVE raised him. The hospital armed us with the resources and prepared us in ways we could not have done on our own. And after 10 days at Rainbow, we brought Spencer home to start our new normal.
I'm not going to say being home made it easier but it definitely made it better. All the nurses circled around him to say goodbye. I fell asleep for the first time in about a week with my head on Spencer's car seat. When we got home, we took a picture of Spencer by the front door. We brought him in and introduced him to his new home. My family came over with food and helped us unload and unpack. I had a lot of blue moments that day. I was so ecstatic to have him home but so broken, not so much by what had happened to us, but by what I feared about the future. I said some things out loud to my mom that I can't believe I even said. I just had to be honest about how I was feeling or it would hurt me even more. Stomaching things is dangerous. I didn't want to be "Down syndrome mom". I didn't want to join support groups and suddenly become friends with a bunch of moms whose kids have Down syndrome. I just wanted to live our life. But every time I held Spencer or fed him or played with him, I was so happy. I really felt unconditional love for this little noodle. He was so strong, so brave, so tough. And just all-around awesome. Those were the moments were things WERE exactly as I had planned. But It was difficult to balance my emotions. It still is sometimes. The whole experience has made me really soft yet really hard. There isn't much of an in between. When something new comes into your life, you suddenly see it everywhere. You can't escape it. Every morning, I couldn't wait to get Spencer out of his crib. Every day was an adventure. But the moments when I was alone, or he was asleep, I just had no control over my brain. Or my heart. I couldn't help thinking about the future. Worrying about things that might never happen. About things that are out of my control. I remember once saying I was going to take a shower and Todd telling me to take my time, to try and relax. And I started bawling saying that I HAD to take a quick shower. It HAD to be fast. I could not be alone with myself for too long. I'd say for about a month, my parents or sisters came over every day and that helped. Everyone loved him. Everyone LOVES him. It's a huge comfort. It's a huge relief. No one that I give a damn about has ever treated him differently than your typical child. He has a huge network of family, adoptes aunts and uncles and cousins, all of our friends, all of his healthcare professionals, his teachers, his therapists...he has more friends on Facebook then Todd and I do combined! I never thought I would shake the pain but one day, I just woke up, had stopped crying, and had moved on! I still worry and it's still hard, but the pain endes. My son is perfect. Yes, he is not what we expected, but honestly, what DID we expect? He really is more. He is more than I could've asked for and better than I expected. He has been awesome since day one. He has made me a better person. He has taught me more about love than anyone in my life. He has made me stronger.
Not every day is easy though, and I've accepted that there will be harder days ahead. If you've visited this blog before, you know that Spencer did get diagnosed with leukemia at 18 months old. Also at 18 months old, while going through chemo, he was called "that retarded ass kid" by a total bottom dwelling bitch. I sometimes wonder if she ever feels badly about that, but I'm pretty sure I know the answer. It's people like her that make me worry about his future. It's not him, it's the world. But I've come to realize that things like this happen with any kid! You could be the most popular, most beautiful, most athletic, smartest, funniest, whatever, and you are going to have a hard time at some point in your life. And no matter what child you end up with, as soon as you become a parent, you wear your heart on your sleeve. You are open to all kinds of pain you never thought possible. But you're also open to all kinds of love you never knew existed. All kinds of awesomeness. I'm not going to say that I don't wish things were different. I wish that things could be easier for Spencer. But if things were different, would he still be Spencer? I wouldn't trade him for anything. Not for all the money in the world. If I knew THEN how it would be NOW, how I would feel about him, how well he would be doing, how awesome my little family would be, I wouldn't have shed ONE TEAR then. And that's the truth. Maybe this is difficult to read. It was difficult to write. But it's something I've been holding in for three years. I'm notashamed of Spencer's disability in ANY WAY! I'm not embarrassed about his Down syndrome. Writing this is just another step towards moving forward in life. I think I've gone through some of the most difficult things a person can go through and I'm still holding my head up high. We're all happy, healthy, and truckin'. Life is good.
