Two years, two months and two days is not long enough. But that’s how long we had with our little boy and we loved every second of our time, and every inch of him.
So how did Clae’s little life begin? Well, I always knew I wanted children just someday never now. I was never much of a baby person, friends would get married and have children, I would go to showers, and usually hated every second of them. Girl friends would ohh and ahh over newborns and want to hold, and cuddle them and I could never understand the fascination. I would get babies crammed into my arms by hopeful friends and family members, thinking I might say something like most women, “Oh, I can’t wait till I have my own,” or “she’s so beautiful, can I take her home?” and of course I only ever felt awkward and clumsy, and couldn’t wait to pass the baby off to the next set of open arms.
I remember the day it happened, it was almost overnight. I was ready, I still have no idea why but I was instantly ready. Paul and I talked about it and he was just as ready, but I wasn’t prepared for an instant pregnancy. I thought we’d have a year or two of trying and getting used to the idea that we would soon be a family. “What did I get myself into?” “I’m not ready for this, I’ve jumped the gun.” Instant panic has set in. I hadn’t even told my parents Paul and I were trying. So the day after my 30th Birthday I head to my parents to tell them that I’m pregnant. Moments later, my father tells me he has prostate cancer. My fears and worries about being pregnant are gone.
Being a grandfather gave my father hope. He got to watch my belly grow, feel the baby kick and move. My pregnancy was beautiful. I never felt better, emotionally, physically or spiritually. I felt unconditionally beautiful for the first time in my life. I loved being pregnant, and then on October 17th 2002, I loved being a mom. All of Paul’s and my family were there waiting hopefully for wonderful news. All of a sudden our parents were first time grandparents. Clae instantly changed everyone’s life.
Clae was born with a red mark over his nose, and between his eyes. Originally we thought it was just some bruising during labor, then a stork bite, and finally when no fading wasnoticed at his 2 month check up our Dr. told us it was probably a Port wine stain. Because of it’s placement we should get him checked for Sturge Webber Syndrome. Instantly I go home and start researching PWS and SWS on the internet. Oh, the overwhelmingly scary information you can find on the internet is enough to make any parent, let alone a first time parent a nervous wreck. I became obsessed with finding out as much information as possible. My Doctors were great though. They pretty much told me right away that they really didn’t know anything about SWS and very little about PWS. I was given so many appointments with specialists at the children’s hospital that after awhile I felt I could drive there (45 min. away) blindfolded.
Clae’s first dermatologist told me to start putting make-up on him because nothing could be done to help. Wow make-up on a baby. A baby boy at that. I just couldn’t do it. No way. Paul and I discussed what would be worse for him growing up. Telling friends about something he was born with or trying to explain away makeup on his face? That’s when
I joined the support group from birthmarks.com. They helped me through many difficult decisions and informed me that there is help available. It was quite a struggle for me on weather to treat or not. I loved my boy birthmark and all. Why get rid of it? The issue of
Bullies were there but not strong enough to seek treatment. Then everyone started talking about complications that can arise in adulthood. After researching this (still being an obsessive first time mom) we looked into treatments. Canada is different from the US in the treatment of PWS, and the one clinic in the area, wouldn’t even consider treatment until he was at least 2 years of age. So it was settled. We would start treatments once he turned two and if he decided when he was older to stop we would. But, for now we still had to rule out Sturge Webber Syndrome
Well after two MRI’s with contrast, and two EEG’s it was determined that Clae did not have SWS. He had multiple eye exams and tests for glaucoma, appointments with neurologists, more dermatologists and developmental specialists. So many tests for such a little boy. But he never minded, nothing ever seemed to bother Clae. He grew into such a smart, handsome boy. He had a huge dimpled smile that would melt any heart that saw it. His laugh made everyone turn and laugh right along with him. Everyone that ever met Clae was touched in some way by his magical personality.
Clae was lucky. He had so much love in his life; more than I thought was possible. Paul’s parents went their separate ways when he was younger, but it enabled Clae to have three sets of grandparents. We never had to worry about a sitter considering all the grandparents were within a 20 min. drive from our home. They all took part in a Clae day that was one day of the week that one set of grandparents got him all to themselves.
All parents brag about their children, and I am certainly no different. This one moment on his second birthday is fresh in my memory and I tell any ear that will listen, in this case any eye that will read. We had one of those magnetic sketchpads for him and he was great at telling us what each thing we drew sounded like. A car, made vroom vroom sounds, a snake hissed, a dog barked. He could point out any letter from 26 letters of the alphabet that we asked. It might take him a minute of looking, but he would never give up, and would always find it. He was truly a brilliant little boy. (I’m not biased though.) On Clae’s second birthday, Grampy (Paul’s dad) wanted to show us what Clae had learned at their house. Grampy took the sketchpad in hand and wrote out the letters m, o and m. Oh the proud tears that filled my eyes when I saw Clae’s little finger underline the letters and read out loud, mom. Everyone screamed with excitement and he clapped right along with all of us. Then he did the same for the words Dad, and Nan. A few days later he was reading, ball. Well I could go on and on at how brilliant our little boy was, let alone handsome.
Unfortunately, all we have now is memories. And every one of them makes us smile, except those from the last two days of our baby’s life. Clae only ever had two colds in his two years. Neither were even that bad, just a runny nose and a cough, not enough to stop him from playing and falling over from laughing so hard. So the morning that he woke up vomiting scared me a little. “Oh, don’t be silly mom,” I thought to myself “his first flu bug and you overreact.” By suppertime he has eaten a little and goes to bed early, but wakes up at 3:30 am with a high fever. Again, I don’t think it’s much to worry about because he is full of energy, a little crankier than usual but seems like his regular self. All Friday he’s back to normal, playing and laughing, and eating so much I don’t know how he can pack it away. All of a sudden Clae climbs up on the couch beside me and starts sucking his finger, which always meant, “Iím tiered mom” but when asked, would climb off the couch and continue to play, because no little boy ever wants to go to bed. Well, this was the first time he ever put his arms up to be picked up and carried to bed. Later that night when Paul and I decided it’s time for us to go to sleep, I go in to make sure Clae is still covered and see him laying there wide awake in a bed full of vomit. Paul takes him out of bed and cleans him up while I try to take his temperature. He’s irritated by us being so close to him and I can’t get a full reading, but it’s over 40 and still climbing. “Why didn’t he call out to us?” We wonder as we rush into emergency
We wait for hours in the small waiting room with other children who all look like they have the flu, it must be going around. By the time we get to see a Doctor, hours have passed. She asks us how long he’s been vomiting and having diarrhea. We explain that he hasn’t had diarrhea at all, and only vomited yesterday morning and this evening. She does a neck manipulation on him, which I’ve always known to be a test to rule out meningitis. Clae has never responded to pain in the same way that most people do, so during the test, I’m watching his face and tell her that his neck is sore. She dismisses what I say, so I think that the test must not be for soreness but maybe for stiffness. She’s the doctor; she knows how to make him better. So she gives us Pedialyte, tells us it’s just the flu and sends us home. It is 7:20 in the morning when we get to go home and she tells us to get some sleep because we’ve been up all night and continue Pedialyte ever 10 min. once we wake.
We wake up a few hours later because our 2-month-old daughter Cyenna needs to be fed, and we continue with our instructions. I go in diligently every 10 min., and Clae only opens his mouth wide enough to suck on the syringe and wont open his eyes. All I can think is, he should be getting better by now. The Doctor never told me what to expect from him, how long to continue giving him the Pedialyte, when he should start getting better. I don’t know anything. She’s the doctor; she knows how to make him better. I’m just an over protective, over reacting mother who rushed her child into emergency at the first signs of flu symptoms. Right? Well, he’s still not looking any better a few hours later and still hasn’t wanted to get out of bed. So we decided to go back to emergency. We figure they’ll only just tell us he has the flu again, but we know he just doesn’t look right.
This time, there is no wait, we are sent right into triage and the Doctor (a different one from this morning) realizes he is badly dehydrated and starts him an IV. He assesses him awhile later, and he seems to be coming around a little. Little do we know, at this time the Doctors shift is over and he goes home, happy that Clae is getting better. That’s when Clae starts to go downhill, fast! Now he can’t hold his head up. His little head is just like a big ball of lead, and he starts to moan and grind his teeth. I run out to tell the first person I see. Still at this point they all think it is dehydration and the nurse tells me it’s typical for a dehydrated person not to be able to hold their head up because they are so weak. Many doctors see us in the next few hours, as Clae is getting progressively worse. He is starting to posture and scream, and can no longer move his legs. All of the Dr.’s are asking about his PWS, and when looking at his body language they ask, “ is this normal behavior?” Of course not we tell them all. Meanwhile thinking, what kind of 2 year old has normal behavior like that? It is hours later when Paul and I are frantic when a new doctor comes in and looks at Clae for 30 seconds and immediately orders a spinal tap.
When the test results come back positive for meningitis, they bring him up to PICU. Paul and I have to wait until they have him settled before we are allowed to go into the room to see him. When we are finally allowed to enter we have to wear smocks and a mask and go into a room that is glassed in and separate from all the other PICU patients. There are so many tubes and machines hooked up to him we can barely see him through all the wires. We are by his side the whole time telling him how proud of him we are and how much we love him. Telling him all the wonderful things we’re going to do when he gets to go home. We are hollering in his ear how much we love him because in emergency the dr.’s told us there are really only 3 outcomes of meningitis. They go home healthy, become deaf, or die. So we are trying to make sure he can at least hear us. He just has to know how much we love him!
After hours of being beside Clae crying and talking non-stop to him the Doctor tells us, “We need to talk.” No! how can this be happening! He’s not going to say it! no, he’s not going to say it!! But, he does. Clae is brain dead.
Paul and I get to say our goodbyes. They bring in a rocking chair for me to sit in and hold my little baby boy as all of the machines are turned off. How can this be happening, how can we say goodbye when there are so many things left to do? I don’t want to leave, I want to hold him forever, I don’t want to forget how he smells and how he feels in my arms. I can’t leave, I can’t let go!
I know now that I never will. I will be holding him forever!