Its been a long time

I think about coming back here and writing and just haven't. I don't know if anyone has read this in a long time. It makes me smile and cry to read my own words. I am grateful that I have been able to put words to my experiences and thoughts.

As "the anniversary" came around this year, I realized that Greg's pain is far greater. His mom is gone now too. She was too young as well. I feel for the pain he is going through. We can hold out hope for heaven.

Another thing I've realized is that I no longer really "wear" my grief. I was having a Very Bad Day at work about a week or so before the anniversary. Between groups of kids, I would break down and bawl. Not cry, not leak tears, but bawl. I had to go to the bathroom once and thought I had it together enough to get that done, but by the time I made it to the "private" teachers' bathroom, I was nearly bawling. I went in and kicked the wall for a minute, took care of business and tried my best to get it back together. I couldn't meet the classroom teacher's gaze as I picked up my next student. Since I don't wear my grief as much as I used to, my VBDs are pretty much kept to myself. Not many people can nod and say, "I get it". If my red eyes (and nose - I turn into Rudolf when I cry) makes someone stop me, I'm going to have to tell them the whole story.

I feel bad that I don't wear my grief as much. I miss Caleb as much today as I did the night we lost him. I will never be the same person I was January 20, 2003. Yet, I remember and am so acutely aware, that I am blessed with 2 fantastic boys that NEED me here. I have to live in their moments or I will miss the boys I have. Someday, I will have time to wallow. Today I have moments to live in. I love you Luke and Colin.

Apple Cider

It seems to sneak up on me every year at Christmas. You would think I would be ready for it. I'm looking for the oppressive grief around the time he died and around his birthday, but I'm never looking for it at Christmas. Usually it hits me as I hang his stocking. This year it hit me when Colin came home from a field trip and was talking about apple cider. Here I am driving the boys to get hair cuts and silently crying in the front seat of the van. Apple cider was a "Daddy and Caleb" thing. They always got it at Cracker Barrel on our regular Saturday breakfasts. Christine our waitress would greet us at the table with our drinks before we even told her. Cracker Barrel was our safe place - they took care of us there. When we could finally came back after Caleb passed away, I was showing with my baby bump from Luke. They rejoiced with us as much as they had grieved with us. There was a picture of Caleb on a bulletin board somewhere in the back. We've moved far away from Christine and our Cracker Barrel, but the boys and I ate breakfast at our "new" Cracker Barrel today. I just needed it.

It takes courage.

Courage.

That was the first word that truly spoke to me as a mom that no longer was able to hold her child whenever she wanted. I was several months pregnant with our second child, our first child had passed away in January. I was sitting and chatting with some teachers at the Headstart that I was the fulltime SLP for in Alexander County, NC. One teacher out of the blue says, "I tell my mom all the time about how much courage you have."

I had never thought of it that way. At that point, I felt like I was putting one foot in front of the other just to get through the next moment. I had a baby growing inside of me, depending on me to keep it together for him. There was nothing courageous about it to me. Not until that word was given to me.

She was right. It takes a ton of courage to move forward from the crushing grief of a sick child; the incomprehensiable saddness of death. It takes courage now to answer the question: "How many children do you have?" I have 3. Luke is 5, Colin is 3 and their older brother Caleb passed away from a heart defect before he was 2. It takes courage to deal with the reaction to that. Sometimes, I don't have the courage. I have 2 boys at home.

Today I have the courage.

On a lighter note ...

I thought I'd share how we got from there to here.

Caleb had just passed away. We went to my parents house in Florida for a week to try to find some sense of self away from the house he had lived in (and away from the house we had closed on a few days prior). After that week was over, I had to get back to work. My company told me that they would hold my job for me but not necessarily my caseload -- so there I was working again only a few weeks after losing the light of my life.

I didn't spend a lot of time working those first few weeks. I spent a lot of time talking to the other wonderful teachers at the school I was assigned. One teacher's aid in particular who had lost her 16 year old in a car wreck.

During my first week back, on a Thursday Feb. 13, I sitting there talking to her like I'd done for so many days when I commented, "I don't feel so good." We chatted for a few more minutes and I just kept feeling -- icky -- for lack of a better term. I guess I was getting a little greenish because she stopped mid-sentence and just started grinning at me. "What?" I asked. She says, "You're pregnant." "No." I argued. "I had my period the week Caleb died. Too early." "O-k" she says. She wasn't buying it. Neither was I. Come to think of it. My boobs HURT.

Yep. You know what I did as soon as school was over for the day. I bought a round of pee on a sticks and took one (hiding from Greg -- wouldn't that make a decent Valentine's Day present after the shit we've been through?). Nothing. Nada. Mind you, I was WAY early -- no period expected for at least a week. But I'm nothing if not persisent. So Friday morning rolls around -- morning pee. POAS gold. Nope. Still no lines. ARGH!

So I keep my mouth shut. Can't even remember what transpired that Valentine's Day. The day after we made our first trek to Winston-Salem to the mall that we all loved to go play in. We just needed to do. We made a bear that we call "Bucky" in Caleb's memory. He's in our family pictures. During the required trip through the tool department I got light headed and sick feeling. I told Greg that I needed to sit down. So he grabbed the stool that I always sat on when I was pregnant with Caleb and I sat while he looked around. I peeled out of my coat -- I was hot. Who cares that we are expecting an ice storm later that night? Greg abruptly puts down whatever man toy he was holding and says "You need to tell me something?" Smart boy. I said, "Well, its too early but I've taken 2 test and they don't show anything."

It was a quiet drive back to Statesville as we both mulled over the implications of this. As we pulled into town, Greg quietly asked, "Do you need to go to CVS?" At CVS I bought another 2 pack. I took one that night. Nothing. Sunday morning -- a very faint line. Yes? Sort of, but with that brand of tests I'd had it happen before only to have Aunt Flo show later in the week. Later that day we went to the Dollar Store. Their tests are supposed to be super sensitive according to the POAS gurus online. And they are cheap. So I bought 2. One yes. One no. WTH?

By this time yes all the symptoms are really raging! Sore boobs, feeling green, crampy -- all the joys of being pregnant. So I gave up on the POAS and just realized that I was in fact expecting my second child in October of the same year that my first child left my arms.

For good measure, about a week later, I took test number seven. It was positive before it even hit the bathroom counter.

A little bit about Caleb

Friends of my parent's group have asked me to share more about Caleb. Let me say now that I do not have a problem talking about him or sharing our story. I tend to keep to myself and therefore do not share his story as much because that is putting a lot of myself out there. I have used this blog some as a way to talk about him and only recently shared the address of the blog. I am not asking for pity. I'm just sharing because I've been asked.

Caleb was born on June 13, 2001. He was full term and healthy as far as we knew. He was having trouble keeping his temperature up so the hospital was keeping him in the nursery under warming lights. He hung out with us some that first day to eat and be admired. They brought him in every 3 hours during the night to eat then took him back so I could sleep -- hospital policy. I woke up at 6 and was waiting for them to bring him in. As a first time mother I was very anxious and nervous about doing it all right. No one came. I woke Greg up and asked him to go get him. He wanders out of the room. He comes back shortly with no baby. He's not sure what's going on but they say the baby isn't getting oxygen to his system and they've paged the pediatrician twice. I'm shocked and scared. I really don't understand. The nurse comes in and tries to talk to me, but can't tell me much. She's a nurse not a doctor and we all know its the doctor's job to share information. What she can tell me is that the night nurse didn't like his color and put him on an O2 sat monitor and his saturation levels were not what they should be. Dr. Jerk finally shows up, looks him over, orders some extras and decides to have him transported to the better hospital in the region. I ask Dr. Jerk some questions. His response, "I thought I already answered that." Yep. That's what he said to me. Me -- a frantic mess of a person because now Baptist Hospital is coming to GET MY BABY! So the phone calls begin. I call my mom crying. I tell her that I don't know anything but they are transporting him. Something about him not getting oxygen -- but he looks like he's breathing fine to me. (Can you tell I was clueless about how the body works?) My doctor shows up, checks me out of the hospital and gives me a hug. Tells me they'll be checking on us, but his vacation starts that weekend. The transport team brings Caleb in to see us in the incubator, looking so tiny and so sick. The transport nurse is an angel who hugs me and tells me they will take care of him. She tells me EXACTLY what to expect when we get to Baptist and asks if we are going to follow them. I tell her that no, we will be there shortly. We only lived 5 minutes from the hospital and we didn't pack much of a hospital bag -- Greg was to take care of getting what we needed. The hospital staff LOADED us down with stuff, a carseat, diaper bags, diapers, formula and rolled me to our car. We ran home, made some more phone calls, stuffed things in bags, went to grab some lunch (I couldn't eat.) and hit the road for Baptist Hospital (45 mins away). I look at the clock at one point. My baby is exactly 24 hours old and he is not with me.

We arrive at Baptist and the blessed receptionist begins working on getting us a room at the Ronald McDonald House. We are expected to be there awhile. Cell phones are not allowed even in the waiting room so I make friends with the pay phone and pay as you go phone cards. We are not allowed in the NICU yet because they are still running lines and doing tests. The cardiologist breezes in and introduces herself. She is a confident, awesome woman with a bulldog of an attitude and I immediately love her. I don't get it though. Its the oxygen -- why a cardiologist? We call a good family friend -- a pediatric pulmonologist from Duke. I explain as much as I possibly can (t'ain't much) and he helps me to begin to understand. He asks who the cardiologist is, Dr. Raines, I tell him. He says, "Good, I've worked with her." Sometime later, Dr. Raines and her entourage (its a teaching hospital) usher us into a family room. I can still see those walls and that decor. She draws a simplified picture of the heart and explains what is going on. I still don't get it, but just nod my way through it. I know there will be time for understanding later. He has pulmonary atresia with a vsd. Pulmonary atresia where the pulmonary valve either doesn't form correctly or fails to open. A VSD is a hole between the lower 2 chambers of the heart. Caleb desperately needs this hole because otherwise all the blood would back up in the right side of his heart and go nowhere -- he'd not have made it this long. Because of the hole, the blood escape into the left side and is pumped through the body. BUT, since he doesn't have a pulmonary artery, this blood hasn't had a chance to make it through his lungs and get oxygen. God is wacky and weird and made up for this by giving him 100s of tiny little vessels from his heart to the lungs. Not that this was much use, but it was getting him SOME oxygenated blood.

They finally let us in to see him. Oh, it felt so good to finally SEE this beautiful baby. Caleb's primary nurse is Julie. She becomes our best friend for this endeavor. (More on her later). Caleb has wires and needles running from everywhere. (Okay, I'm not going to sit here and give you every detail of the 10 days there -- maybe some other time).
Jumping ahead -- he gets surgery at 6 days old. The surgeon has had a rough day of it and Caleb's surgery didn't make it any better. All the aspects of his surgery went well. But there wasn't much that could be done. His vessels are too small. Think of this: your heart is the size of your fist. Caleb's heart was the size of his fist. (A large grape maybe?) His vessels need to be the size of a piece of fettuccine. They were thin spaghetti size. Even the most talented seamstress can't sew anything to a tube that size. The hole from the needle would be bigger than the space inside the tube. (Remember -- this perspective is all MANY years later -- during all this I just wanted to know WHY! and FIX IT!)

So Caleb comes home at 10 days old. My beautiful baby boy -- blond haired, blue eyed. He eats great, he's growing a tad slow, but them maybe thats my genetics. He needs to stay healthy because it will take him more to fight off infection. Doctor appointments come and go. Everything looks THE SAME. No worse -- yeah. No better.

Caleb was what you call a blue baby. Think about how you look when you are cold. Funny skin color, blue lips. Really cold? Blue finger and toenails? He is basically oxygen deprived. He breaths very hard but he is SO determined. He crawls -- FAST. But then he has to stop to pant. He only walked 3 steps unassisted. For me, on Christmas, just a month before he died. No on else saw. I cry for that a lot. Oh the joy on his face. Its like he knew I NEEDED it.

The weekend Caleb died, he'd had croup. We'd been in the hospital but I told family that no one needed to come out, it was just croup and we'd be fine. I went to work on Monday and Daddy stayed home with him. Since it was MLK Day many of my kids weren't available. I came home for lunch, bumped an appointment up, said my good-byes to Greg and Caleb (who pushed me away because he was watching Sesame Street). I told Greg he need to get Caleb down for a nap and I'd be back in an hour. That was my last time with my boy. I am racked with guilt still over the night before. It was our first night home from the hospital and I had slept the previous night in the crib like thing with the croup tent. I was tired, I was not in best mommy mode and I didn't give him a great bath like usual. It was just a quick one and then into bed. I don't remember if he slept with us. He probably did. I don't know.

Caleb developed some standard blood clots, but because of his anatomy could not pass through his system. He started crying when Greg put him down for a nap. He had a seizure, Greg rushed him to the emergency where he took his last breath. Our pediatrician still had red eyes when I got to the hospital. I'd left my phone in the truck while I was working with a child (who spoke to me the first time during his session) so I'd missed the calls from the emergency room. Not that I could have gotten there in time. I held him again -- in shock, disbelief and sadness. The day had come. We knew it would. He was gone.

Scissors

I really hope this phase passes soon. Luke is addicted to cutting things. He constantly wants his scissors. I have placed them in an unreachable place so that he can't cut whatever he pleases. Well, I've learned that this does not deter him. No. He finds other scissors. MY scissors which are sharp and will cut through more than paper.

I came downstairs from a shower last week to find 2 cuts in my curtain -- my overstock.com, CLEARANCE curtain. Any chance that I'll find a replacement for that? I'm trying to decide what to do about the 3 inch gash in my curtain. Any ideas? Decorative patches?

Last night, I come downstairs from putting Colin to bed to find a plastic bag that I was saving for scrapbooking stuff cut in half. SON! He already lost tons of privileges and favorite toys after the curtain. What else can I do? I sent him to bed. He proceeded to scream and beg and cry. You see, it was too early for him to go to bed. So I went up to talk to him -- he wanted to go downstairs. I asked him what he would do to get to go back downstairs. Clean up the toys. Ok, I agreed and worked at getting Colin settled back down. Now, I'm thinking 4 year old cleaning up the toys means grabbing a few little happy meals men and putting them in on the couch instead of on the floor. I was not prepared for what I found. He was actually putting away the toys in the playroom! This was a daunting task because earlier in the day there had been 2 other boys helping to destroy the room. I was so proud! I helped him put away a few more toys and then asked him again what we are allowed to cut. "Paper, mommy".

Wonder what he'll cut next.

Edit: Found out what he'll cut next: He snuck his "school/safety" scissors in the van for the ride to Greenville. Oh, yes, he did. He cut a 1/4 inch gash into his carseat straps. Needless to say that carseat is in the garage waiting for the new straps to come in. And those scissors have had a throwing away ceremony. No more scissors until some nurse hands them to him to cut the cord on his first terror, I mean, child.

This is tough

Tomorrow would be Caleb's 7th birthday. I can't begin to put words to my feelings today. My imagination doesn't see Caleb at 7 and that is really tough. At his 5th birthday, I could still imagine who he would be, six was getting tougher, but seven I just can't get ahold of, and it bothers me. He would be going to 2nd grade; no longer a baby. Not even a little kid anymore. Just a kid. Riding a bike, playing ball. My heart breaks to think of what he never got to experience. I know that he would never had the same chances as other children. He was too sick. By dying and being forever healed he missed the torment and teasing of other children because he was different. He missed days, weeks, months in the hospital. But I miss him. He was a wonderful little guy. He was only here for 19 months, but those were wonderful scary months.

My pediatrician wouldn't let us sit in the waiting area like the other kids. He either had to get an exam room immediately, go sit in her office, or we would wait in the car. She was scared of what he would get just by being there. We weren't allowed to go to church or be anywhere there was much contact with people during cold and flu season (October to March). Greg's church never understood that. No one came to check on us during those days of confinement. Greg had to strip out of his clothes in the garage and come straight in and take a shower for fear of spreading germs. I was alone with Caleb to watch him play on the floor, watch Baby Einstein, read books, play with the dog.

We knew Caleb wasn't bound to be with us for long, but I never imagined he would be gone so fast. I knew in my heart that kindergarten would not happen for him. I knew I wouldn't see him to prom or get married. Yet I still dreamed of it.

Caleb visits us often in odd happenings at the house. He is remembered and loved everyday.