Cole's Story

Now it is time to tell the story from another perspective.  Cole was just a little guy when all this happened, so he doesn't specifically remember much that he hasn't been told about or been shown pictures of. But he most certainly has his very own story that needs to be told. 

When I was at Evergreen on bedrest, Cole was staying with my parents in Colorado (where Cole and I had just temporarily moved until after the baby/ies were healthy).  At first, we thought I'd be gone for a couple of days. When it turned into several weeks, we realized we needed to think carefully before deciding where and with whom he'd stay. 

It was so painful having to make such a decision in the first place, when all I wanted to do was have him there with me (or me with him!!). And choosing one set of grandparents over another, while not a personal evaluation of their parental abilities, still seemed unfair. When we had to make the decision, it came down to the question of what would be best for Cole, naturally.  We decided that, since Charles would be returning to VA to work and wrap up the sale of our house, he would be more likely to be able to visit with Cole if he stayed with Jim & Diane (my in-laws) in Ohio (only about 5 hours away by car). 

We started writing up the necessary documentation to grant power of attorney to Charles' parents on the day that Conal & Braychan were born. The plan was for my mom to fly Cole out to Ohio in a couple of weeks, then continue on to VA to pick up the rest of the things I'd need for Cole, baby/ies, and me once we settled in CO again, and drive my car (plus UHaul) to Colorado. In the midst of that plan, the word "plan" lost all meaning to me. 

Once Conal passed away, everyone who wasn't there (and needed to be) arrived quickly. They stayed the weekend, and my mom's cousin was generous enough to offer their lovely home (not far from Kirkland/Evergreen) to us for the week while they vacationed.  Cole, Mom, and I had a week to ourselves -- for us to spend together, with Braychan as much as we could, to get as much lined up as possible for my living situation (another entry in itself!), and simply to BE. 

I know that week was rough, emotionally, for all of us...But all I remember is the sunshine. I don't mean the sky, though it was beautiful that whole week. I mean Cole. That sweet little man and his endless smile and sunshine was what got me through everything. His beauty, humor, energy, and love propelled me through the next 15 weeks, which were to be some of the most challenging I'd ever lived through. But knowing I had a boy like that, who loved me more than anything...I knew I could make it through anything. 

Thinking back on it now, I don't remember much about that week, except getting lost A LOT, having a picnic in the park (with some great pictures!) and desperately trying to find a Red Robin for lunch in Bellevue. And getting lost some more. But I do remember specific moments with Cole that I can't even put words to -- all I can say is, those moments are still so dear to me, so ingrained in my body that they have become who I am in many ways. And that's why saying goodbye was so hard.

The day came that Mom and Cole had to leave...I will never forget putting him into his carseat, crying, and he poked his little 17-month-old finger at one of my tears, not really sure what it was. I didn't need to cry as much when he was around, even with the pain of losing Conal. Mom, Cole, and I had spent the last week giggling and smiling despite our grief, which was a miracle for all of us. But now we had to "pop the bubble" and return to the reality that included him being a couple thousand miles away from me for several months. 

Even propelled by all my sunshine, it took me a few days to recover after they left. 

Cole did very well staying with Jim and Diane, and I know that it means the world to them that he was there.  And he *definitely* wasn't spoiled at all. :) 

A few weeks after he went to Ohio, Cole (finally, at nearly 18 months) learned to walk on his own. I saw his first steps via cell-phone video, which is definitely better than not at all. I'll still never forget that day, seeing the video, and hitting the nurse call-button because I needed a hug so badly. 

Thanks again to my mom's cousin, Brad, and his extreme generosity, I was able to fly to Ohio for a few days, to visit with Cole in mid-September (right after B's PDA ligation). It was hard to leave Braychan, but I knew he was in loving and very qualified hands at Evergreen. And I needed to see Cole so badly it hurt. Before I knew it, I was on a plane headed back to Seattle again.

Once B and I arrived in Denver, Cole was not far behind.  Jim and Diane arrived with him less than a week after we were transferred (right around B's final surgery), and I cannot begin to describe the feeling of relief I had to have my big boy back in my arms, for good. 

He wasn't so sure about this new guy, Braychan, who arrived home about a week after he did...Just a little thing, and he needed so much attention. And that tube! Cole kept tripping on the oxygen tube! Eventually we all adjusted to all the details that came with life in Colorado, and we had our "new normal."

I can't help but wonder how much of this experience (regardless of how much he remembers) shaped who he is today and forever. He is a very securely attached kid, which is a blessing to me. He never forgot who I was, and even if he probably has a little resentment tucked away in his subconscious about the fact that I was gone for about 13 weeks of his life, he truly loves me unconditionally. And the latter is probably just my guilt overwriting his feelings. 

These days, he is a bright, kind, silly four-year-old with a lot of opinions. We clash a lot (he's in a "testing" phase...), but we both know that there is nothing that will stop us from loving each other. He is a snuggle monster, and he can't stand anyone wiping his nose despite his insistence upon never blowing his nose. His favorite word is "booger," and he thinks that "garbage" is a bad word so he says it a lot. He loves to show affection, especially for Braychan, whom he still occasionally calls "my baby." Braychan wants to BE Cole. And if he's going to pick anyone to be, I'm pretty sure B couldn't have made a better choice. 

Braychan's Story

So now you know The Story. And I'm pleased to know that you do, both because sharing creates healing and awareness, and because that means I am done writing The Story for now. (As I'm certain you can imagine, it extracts every ounce of emotion from me to go through it in detail like that, which is honestly why I don't do it more. Usually I just state that Conal passed away, "We're OK," and move on.) That also means that I can share more with you!

Next, I'd like to tell you Braychan's story. His is a very different one, and not without its setbacks. But I don't think that he has ever even considered anything in his life a setback. I have to confess...He's kinda my hero. I mean, all my kids are, in one way or another. And in no way does that make him perfect (not by a longshot)! But I really admire the kid.

While everything was falling apart with Conal, Braychan was quietly growing stronger.  By four days old he was receiving NG tube feeding (that's the tube that goes through his nose or mouth to his stomach) of my milk. When he was ten days old, they attempted to extubate him (remove the breathing tube that did all the breathing for him). It didn't take, but he was successfully extubated about four days later.

I first held him when he was about ten days old, and I was so freaking terrified. The last time I'd held a baby that tiny...well, you know. And now I was holding this little guy for the exact opposite reason. I remember telling Cheryl the chaplain, "It was a beautifully opposite moment." There is no other way to describe it. And it was, in other ways, completely unlike holding a child.

There are many of you who have lived through a NICU experience, and there are many who have not. If you have not, I will paint a picture. Braychan was 1 lb 14 oz, and the ventilator tubes, pulse ox monitor, cardiopulmonary leads, and miscellaneous tubes etc definitely weighed more than he did. He was so tiny that his body had literally no way to maintain heat (which is why he was in his giraffe bed -- it's a heat/humidity controlled environment!) on his own. So I was wrapped in about four layers of blankets myself, then I had a few on my chest, and he was wrapped in a couple more, and he had a hat on. It *almost* felt like I was holding a full-term kid, because all the blankets and equipment weighed my arms down.

He progressed well, getting numerous transfusions, and then he got a little sick with some sort of infection.  Once that cleared and he still had barely gained any weight, the docs started to wonder if the PDA that he had (very normal at his gestation, usually closes on its own --http://www.nlm.nih.gov/medlineplus/ency/article/001560.htm for more info) was keeping him from growing. They tried waiting it out. They tried using medication to close it. It seemed like it took forever to come to the decision that he needed to have the ligation (surgery).

He had to be transferred to Children's of Seattle for the procedure (Evergreen was just a couple of weeks short of being able to do PDA ligations in-house). It was a bit of an adventure, and I swear I didn't sleep for four days because I wanted to see every second of him improve afterward.  Seeing him back on the ventilator was really hard; it was clear that he "got" it to a certain degree, and he didn't like losing his freedom (those of you who know him now will certainly get a little chuckle from that) that the cannula gave him.

After about four days, we were sent "home" to Evergreen. The absence truly made my heart grow fonder of a place I had grown to love so much already in the previous six weeks. I don't want to go off-topic, so I'll just save that thought for another day, but I will just say that I never felt like Evergreen was an institution. It was more like a sanctuary, a home. And that has a little to do with the structure and a lot to do with the people I met there. And now back to Braychan's story. :)

I went to Ohio for a week to see Cole, whom I hadn't seen since about a week after the boys were born.  While I was gone, B had his very last transfusion, and when I came back he looked like a different kid! His previously brick-red skin was now a mottled-ivory tone much closer to my own. He started to look an awful lot like my dad. He was growing. A lot.

And after that, things started happening, quickly. Before I knew it, he was wearing clothes, and then he was in an open crib, and he was nursing and taking bottles, and generally just acting like a baby! I could even hear his cry! (Did you know that, when they're that tiny, their vocal cords are too small at first to make any noise at all, then it starts to sound like a kitten, then a cat, then a really tiny baby, then a baby?! It's pretty cool!)

One day, one of Braychan's favorite night nurses, Mary, called to say that we'd finally gotten our transport to Denver settled. Remember, we were "stuck" in Seattle, because I delivered there instead of here in Denver. Once he was down to 1/4L of oxygen he was able to fly. We had a long, feisty fight with the insurance company and lost, and then Air Life Denver and PSL decided to split the bill to fly us there, thank goodness.

Once we got to PSL (Presbyterian/St Luke's Hospital in Denver) we were nearly done with the NICU. It was a big, ward-like NICU, with tons of babies crammed in together. The nurses were nice, but stretched beyond their limit. If I wanted to pump my milk, I had to be in a room by myself (not in B's room), which was not great for milk production. PSL is a great hospital if you have nothing to compare it to...but it just wasn't home.

That turned out to be OK, since Braychan was almost done. He still needed some oxygen, but otherwise his apnea and anemia were going away, and all we had to do then was fix his hernias. (Most preemies get them, especially when on oxygen. He had a couple, so they fixed them all right before discharge.) He had to be intubated again, and again it was so hard to watch him fight (mentally) with the idea of being physically restrained. Thank goodness it was only for about four days again, and then we got to go home!

And that's when the fear hit me.

WHAT THE HELL AM I DOING? I'M NOT A NURSE! I DON'T KNOW HOW TO TAKE CARE OF THIS KID! WHAT IF WHAT IF WHAT IF WHAT IF AAAAAAAUGH!

I don't think we were home a full 24 hr before I called our new (never talked to him before the 3am phone call) pediatrician. I'm sure he loved me. Everything went well, I was exhausted, he was fine and still gaining by our appointment the next day, and we were moving right along.

We went through some reflux issues that eventually (at about a year) resolved themselves. We dealt with RSV when he'd been home from the hospital for about two months. (He was admitted for that, for about a week.) We met our incredible pulmonologist, Dr Rusakow, who really helped me to understand the intricacies of Braychan's condition and how we were going to test, wean, and even guess our way through this together. We went to a developmental therapist briefly, who helped Braychan work on his disproportionate upper-body strength. I like to joke that, while the therapy helped, it might have been nice to have made his upper body weaker rather than making his lower body match the unbelievable strength of his trunk. The kid is a beast.

All in all, even considering everything, Braychan has had a reasonably normal post-NICU life. Yes, we still have him on oxygen (when he sleeps), but he barely even notices it (seriously). And we don't even need it when we go to sea level! He is developmentally right-on, and he has never let anything slow him down, even for a second. He has no idea that there is anything different about him.

Now here's where I'm going to get a little squishy-mushy. It just floors me how this kid can come from --literally-- the edge of death to the picture of vitality. He is a true, in-the-flesh miracle. And I think at some level he gets it, because he is so full of joy, and he fights so hard for everything, and giving in or giving up is not an option. He is as laid-back as any kid I've ever seen when it comes to things that will upset a kid, but when it comes time to prove himself he never looks back and just plows into it. He will be the thirteen-year-old who comes to me with the parental waiver for bungee jumping, or whatever the cool, risky thing is then.

And I have decided that, contrary to my "mother's intuition" wisdom, I know that I might as well sign it. He's going to do it anyway. And when he does, the look of pride and joy that I can imagine on his face is enough to convince me right now that he *should* do it.

I just won't be able to watch. :)

The Story, In Five Parts

Part 1

I was That Mom. You know the type: Really Needs A Lesson In Humility Mom.  I had a Perfect First Pregnancy and an Above Average Baby (IMO of course) and because I do my homework (I am an obsessive reader when delving into an area of life with which I am unfamiliar) I *knew* that everything would continue to be in my control. 

When I got pregnant the second time, I learned one of the most valuable lessons in life: there is no such thing as control, especially in parenting. It was a very painful lesson to learn, and I had to learn it many, many times before it stuck. But it made me a better person.

My oldest son, Cole, was just over a year when we found out that we were expecting twins. (Cole was born in March 2008, so this all began around March/April 2009.)  Our reactions were somewhere between hysterical laughter, panic, sickness, terror, and elation.  The pregnancy was a "delightful surprise" to begin with, and we'd only ever considered having two children. But of course we were excited (once the panic subsided) and got to work on getting our lives ready for a couple more babies. 

We couldn't stay in our lovely Reston, VA condo (as much as we'd have loved to) due to its size/layout and its cost in relation to the real estate market of the moment. We'd talked for years about moving to Austin, TX, and if we were going to do it, that was our moment. We listed our house as a short sale and got a buyer almost instantaneously. The proceedings went smoothly and all of our paperwork was in by the end of June, leaving us plenty of time to prepare for the babies and let the bank do their thing. 

I was scheduled to move temporarily to Denver with my parents for the duration of my pregnancy for several reasons: first, we were in a tenuous financial situation and my parents were able to help. Second, Cole still wasn't walking reliably on his own and I could no longer physically carry him due to the enormity that was my pregnant belly.  Third, I was exhausted and getting sick a lot, and with the long hours Charles works (he's in the restaurant industry) it was impractical to assume that I could care for myself and a 14-month old anymore, at least full-time. I figured, around 22 weeks, that it was only a matter of time until I was relegated to bed rest. 

I went in for my 22 week checkup with the perinatologist (the high-risk OB) and learned that the twins (by now we knew they were boys, and we'd been calling them Artichoke and Broccoli for A & B) were likely to be diagnosed with Twin to Twin Transfusion (TTTS), a common complication with the specific type of identical twins they were. (http://www.tttsfoundation.org/ for details) The doc decided to wait a week before making the diagnosis because it was unclear at the moment whether the boys' umbilical arteries were connected (the cause of TTTS; normally the arteries are only attached to Mom, not making any U-turns). 

When I went in for my 23 week appointment, I was prepared to move to Colorado in 2-3 weeks with Cole in tow. (Charles would stay back, work, and wrap up the sale of the condo, but he was traveling with us to help us get to Denver safely.) The doc broke the news that the twins definitely had TTTS, and something needed to be done quickly to fix it. He told me that I should plan to deliver the twins within the next couple of weeks; 24 weeks is the generally accepted "viability age," and his solution was to deliver the babies at 24 weeks if I wasn't willing to undergo a reduction.

A reduction. 

I'd never even considered it, and frankly, even in that moment I didn't. A reduction is a "simple" procedure in which the cord of one of the babies is tied off.  The baby dies, and because there is no further connection between the two, the surviving baby...well, survives. I do not hold any judgment for parents who have chosen this in their own circumstances, --never, ever could or would I judge such a hard choice!-- but I know for myself, I could not choose reduction. 

But what about the surgery? I asked. There is an experimental surgery to sever the connections (I told you, I do my homework.) that is done in extreme cases of TTTS, which it seemed this must be if he was talking about delivering my barely-viable babies or making me make an un-choose-able choice. 

No, he said, can't do it if you're over 23 weeks.  Too risky for the babies. (What?! A minute ago you wanted to reduce!) We just wait until 24 weeks and deliver them in that case. End of story. 

So as we talked, with this dilemma in my mind, I remembered, wait -- I might be homeless with two micropreemies if this happens, if he wants to do this in a week! I won't have time to move to Denver!

Well, my friends, plans change. 

He told me, in no uncertain terms, that I needed to be in Denver no later than one week from that date. I made it happen, with the enormous effort of many people in my family. Six days later, Cole, Charles, and I were on a plane to Denver with all the most important Stuff packed in our suitcases. The rest of our essential Stuff would come by trailer with my car in a couple of weeks. My appointment with the new perinatologist was the next day, Monday.  

Part 2

I was 24 weeks, 1 day (24+1) on Monday, July 20. The appointment started with a beautiful 3D ultrasound that showed Broccoli (who by then we had officially named Conal) with the most blissful, beautiful smile I have ever seen on a baby. Artichoke (then named Braychan) was not visible by ultrasound because of the amount of fluid collected in Conal's amniotic sac.  This is one of the major problems with TTTS.  The extra blood that comes from the donor (Braychan, in our case) goes into the recipient's cord, and therefore his body.  The body becomes taxed by this and creates WAY too much fluid (pee) and the recipient's blood becomes very thick.  This is called congestive heart failure (CHF). The heart's valves cannot completely close and the chambers cannot push blood through the body effectively.  Fluid collects in pockets around the body.  All of this was happening to Conal at a very alarming rate.  We saw it all happen on the big screen in beautiful 3D on that day. 

I held the picture of Conal, and for the first time since the beginning of this complication, I cried so uncontrollably I scared myself. 

While I was crying, the office staff whisked us into another room, began making plans for us, and told us what was happening next.  In a daze, we absorbed as much as we could. There was a doctor, Martin Walker, in Kirkland, WA (near Seattle) who performs the surgery that disconnects the twins -- remember the one the Reston doc said they "never do after 23 weeks"? Yep, they do. And Dr Walker was going to evaluate me the next day in his office in Kirkland.

Thanking the heavens that I am blessed to have such a supportive family, I called my mom and briefly told her what was happening, then explained that I needed two plane tickets to Seattle by the time we got back to their house (about twenty minutes away). She made it happen, and we ran back home, kissed Cole, packed hastily for a four-day trip, and sped off to the airport. 

Wait, you say...Cole! What about Cole? He was to stay with my parents for the four days it would take for evaluation, procedure, and recovery.  What's a little Grammy and PaPa time, right? 

The next day was the evaluation, and things looked even worse for our little guys.  Braychan had nearly no fluid whatsoever (nowhere for it to be!) and Conal's CHF had progressed even more overnight. I was scheduled for the procedure the next morning. We were told to try to relax (!), get some dinner (which, yes, we definitely did, since after all I was still carrying two very hungry little boys), and before bed, Charles was to give me the first dose of the steroids needed in case the twins needed to be delivered early.  (Steroids are often used in premature deliveries to help the lungs develop more quickly.) All of that went to plan, except that, while eating dinner, I began spotting. 

I called the office, and they told me not to worry, and we'd figure it out in the morning. I barely slept that night, and I woke up early feeling like I needed to...something.  I needed to get something done. Who knows what, but I knew I had to be doing something. 

[Warning: the next paragraph is likely TMI, and if you're squeamish about bodily/medical stuff, just skip it.]

While I changed in the pre-op restroom, I noticed that my mucus plug had begun to pass -- I was most certainly in labor.  I let the nurse know, but at that point there was nothing to be done except go ahead with the procedure to see if it helped. 

[For those of you who skipped it: basically, I was in labor and they decided to go ahead with the surgery.]

I have little memory of the procedure. I remember having a panic attack and getting medicated, and I remember at one point that they saw Conal under the tiny camera and verified by video that he, indeed, was a boy.  It was over in less than an hour. 

The surgery (ligation) was a success, and they closed sixteen connections. Most cases of TTTS involve around 6-8. They removed 2.4L of fluid from Conal's amniotic sac. I could breathe again, thanks to the extra room in my belly. (Did I mention that I thought my skin was going to snap because I was so enormous? I measured at about 40 weeks in twin-measure that morning.)  Yes, I said 2.4 LITERS.  More than a soda jug. I felt delightfully deflated. 

But they were having trouble stopping the contractions.  Terbutaline injections didn't help.  Indocin didn't make a dent. Magnesium sulfate slowed them down a little.  

The next morning, at my follow-up ultrasound, I learned that my cervix was incompetent (in the obstetrical sense, not the intelligence sense), and I would not be leaving my bed for twelve weeks except for toilet visits. I needed to be reclined or lying flat, in my hospital bed, in a town where I knew no one, for 12 weeks. 

Again, I lost it. 

Charles needed to go back home to VA to work.  Cole needed a mom.  I was going to be completely alone in a hospital bed, thousands of miles away from my sweet toddler boy who I barely said goodbye to because I assumed (out of survival as much as practicality) that I would see again in four days. 

Again, we tried to run with it, and plans changed. 

Part 3

Charles would stay a couple more days, then go back to VA.  I would (of course) stay right where I was. I had to make a very difficult decision about where Cole would live for the next 12 weeks or so. Because Charles would be relatively nearby in VA, we chose to send Cole to live with Grandma (Diane) and Grandpa (Jim) in Ohio in about a week.  My heart was breaking. 

And within a couple of days, I was living the Bedrest Life, which royally stinks. I could not shower or even stand to brush my teeth. I was miserable, and the magnesium sulfate (mag) meant an NPO diet -- clear liquids only. The mag also made it nearly impossible for my eyes to focus or my mouth to form perfectly intelligible syllables, even though my mind was working perfectly.  So my brain was working about 1000 mph and my body was working at about 10 mph. 

Sunday, the day before Charles was to leave, I reached 25 weeks. At about 3:45 pm, I felt a POP. And then my bed was wet. My water had broken. That cervix of mine really WAS incompetent! I calmly (how!?) pressed the call button and told the nurse my water had broken. Then I puked. Charles had to walk a friend out (he was visiting from VA, strangely) to his car, and while he did I was rushed to the operating room, trying desperately to call him, asking nurses to call him, insisting that HE NEEDS TO BE HERE NNNOOOOOWWWW! 

He made it about 30 seconds before they had to close the door. 

The delivery was quick, and I'll spare you the details. Both boys were delivered by C-section, and there must have been 30 people in the room, not counting me or Charles. The boys were intubated, I was sown up, and I was taken back upstairs to my room.  I caught a tiny glimpse of Conal on his warming bed as the docs and nurses worked to stabilize him.  I didn't get to see Braychan at all from my bed as we rolled out.  

Again, that night I got absolutely no sleep. I'm sure that Ambien works for some people, but not for a woman in my particular situation that night. Charles visited the boys, assured me that they were beautiful and alive, and went back to the hotel to rest. Jim & Diane decided to fly out immediately, and my mom and Bob would stay with Cole in Denver for a couple of days and visit once Cole was in Ohio. 

I still could barely stand the next morning, but I made myself do it. I walked about a day before they recommended that I try, and I withstood unbelievable amounts of pain in the name of GETTING ME TO THOSE BABIES. I knew if I showed the pain they would never let me walk myself down there myself. So I ignored the pain and walked for those babies. 

It was worth every bit of pain, and more. I was terrified and enamored, sad and elated, worried and celebratory, and I tried to take as many pictures as my awful cell phone would allow.  The doctor and respiratory therapists (RTs) talked while I cooed and gurgled at my beautiful boys. I marveled at the miracle of them. 

The news from the docs & RTs was mixed. Braychan was doing surprisingly well. Conal was not doing well, but he was stable for the moment. His heart was still in trouble, and combining that with his extremely premature lungs...it didn't make for a pretty picture.  But the hormones from my body and from the birth had given him a little "boost" that was making him seem at least a little better. 

All I needed was some tiny amount of hope to keep me going. That was enough for me. I knew that worrying excessively does not change outcomes of things that are out of our control entirely. I would have the rest of my life to be upset if the result was negative, and if it was positive I would have been wasting my time being upset. (This is all much easier said than done, but I've learned to live this way over the years.) I went to sleep that night scared but hopeful.

Part 4

Wednesday morning, the boys were three days old, and I was about to be discharged. Charles rushed in to my room, freaking out because apparently my phone battery had died and he had feared the worst. I finished pumping the first of my milk while he walked down to the boys' room.  As I was finishing up, he came back in, a little impatient, which I mistook for his lack of sleep based on the difficult circumstances of the past week and a half for him, too. 

We walked down the hall to the boys' room, and everything went into (now cloudy) slow motion. Conal's bed was open, and a nurse was manually ventilating him with a tiny balloon. The doctor said, "OK, they're here. We need to let them hold him before he's gone." And that was the moment that I knew what was really happening. In a state of disbelief and half numbness, half joy to be holding one of the two babies my arms longed for, I prepared myself to hold Conal while he passed away. They removed as many of the wires and tubes as they could, and then everyone shrank and faded away except the three of us: Conal, Charles, and me. 

I could not stop this from happening, no matter how I willed it to stop. In my arms, Conal took two breaths completely on his own. One very normal breath, and one shaky, shuddering breath before he was still.  

I wish I had sung to him.  I wish I had kissed him more.  I wish that I had told him not to be afraid.  I wish...so many things. But I was unprepared. Bare. Out of the realm of my own control, again. 

We sat with him for a while, but not long enough. The nurses took pictures. I don't remember much after that, except being discharged and not knowing what to do with myself. Jim and Diane had a hotel much closer to the hospital, so I would stay with them Wednesday night, and my parents, Heather (my sister), and Cole would get in late that night and meet up with us Thursday morning. 

For those of you who were in Seattle in July 2009, this was the midst of The Heat Wave. As I understand it, no one there has air conditioning because "it never gets that hot" there.  Except that last two weeks of July in 2009.  Everyone's solution was to check in to all available hotel rooms in Seattle, leaving literally none for my family to stay in when they arrived. My mom's cousin lives nearby, and despite already having houseguests, they opened their home to us.  My parents and Heather stayed there, and Cole came to stay at Jim & Diane's hotel with me. 

On Thursday we had to make decisions and arrangements. I literally remember nothing other than handing my mom the phone and telling her, "I can't do this. Find a place that can help us." She found a funeral home, and off we went.  I remember sitting at the table with the director as she showed us a variety of very lovely tiny caskets and urns, and I told her, "I don't want these.  I don't want any of them." I didn't want something not listed either. I just didn't want to be making the decision of what to do with the remains of a son I just gave birth to. 

She excused herself, and Charles and I were left alone to figure out what to do. Burial made no sense, since we were awfully transient at that moment, and we had nearly no ties to Seattle. And where the heck else would we send his body to be buried? So cremation was the default choice. I knew that I could not cope with my child's ashes becoming a knick-knack on a bookshelf, which I dismissed all urns as (again, nothing personal to those who made that choice, just not for me). They would put him in a plain cardboard box for us to carry his ashes in until we decided where to scatter them or how to store them. No parent should ever have to make decisions like this for their children. Ever. 

The next day we had a small, family-only service in the hospital's chapel. Conal was dressed in the tiniest clothes (which were still too big for his tiny frame) I'd ever seen, and wrapped in a blanket, then placed in a bassinet.  Before we left the chapel, I knew that it was the last time I would see his face.  I was two feet from the door when I turned around, walked back up to his bassinet, told him one last time how much I loved him, and kissed him goodbye. 

Part 5

My life has continued since then. Sometimes I'm happy about that. Sometimes I wish time had just stopped the moment he left us. But I try to continue to live for all three of those boys.  Braychan needed a mommy to provide warmth, love, and a lot of care as his condition improved. Cole needed his mommy to be strong and continue to connect, even from a vast distance. Charles needed a wife to lean on and to share the grief with. And Conal needed me to keep moving toward discovering some sort of faith so that we could see each other again in heaven. 

I am no longer That Mom. I am That Mom Who [whispered]lostherbabyshhhdon'tlookdon'tremindher. It's ok. You can't remind me of something that is literally always on my mind. I am a better mom because of my journey (sure, I'd rather be That Mom again, but that's inconsequential). And I know that parenting is just a huge lesson in giving up (the ruse of) control over the things you have no control over anyway. Just gotta keep swimming.  

We'll get to more later about other areas of my story, like what happened with Braychan, how on earth I lived without Cole for that whole time, and what has happened since, but if you want to know more, please refer to my "in-the-moment blog" at http://hodgson.typepad.com to read my observations as they happened. For now, I think I've made it through writing The Story about as well as I am able. And now that you know, I hope that we can move on to the many contexts in which this colors life in a more abstract way.  I can only hope that sharing my story can bring good into someone else's life, whether yours or someone you have passed this on to. Please, share links to your own blog if it is not already listed (and let me know if you are ok with me listing yours on my blogroll), or simply share your story if you want. And if you would rather just read or share some thoughts, that's just fine. 

Thank you for letting me get that whole thing out there. It is always hard to sit down and write out, but it always feels great when I get through it. 

xoxoxoxo

Keep Swimming?!

Many of you are familiar with the above title, which comes from Finding Nemo's Dorrie...For those who are unacquainted, Dorrie has a bit of a memory problem.  But she knows that everything will be ok if she just keeps swimming.

This is an ongoing theme in my life.

I am here to write my thoughts, feelings, advice, & occasional rants, and hopefully to enable a community of families who have experienced ANY hardship in parenting/grandparenting and need to be around others who "get it." I will start out with my own story, and I will share a variety of links and resources that I or others have found helpful, and I would love to hear your experiences as well.

Love and hugs to anyone out there reading this right now, and don't forget to keep swimming!