I remember.

This one might be harder for people to read.  It's what I remember from Catelyn’s hospital stay:

• I remember the diarrhea with blood in it.
• I remember the lack of urination, eating and drinking.
• I remember the doctor 'huddles' every day in the room, when her case was discussed.
• I remember being so scared for the first dialysis treatment and that I didn’t want to be in the room.  I had misunderstood that they were going to just be putting lines into her veins in her groin area, so I asked if we could leave for that part and was told yes.  
• I remember coming back to the room, thinking it was all done, and finding out that they still needed to do the dialysis.  Overall, I held up well for the dialysis, but I really relied heavily on my husband to stay by Catelyn’s side during the procedure.
• I remember discovering that the anal fissure was too much to take when trying to change her diaper, and feeling like such a failure because I couldn’t even stomach the sight of the ooze seeping from her bottom.   
• I remember being so grateful for the nursing staff who was willing to change her diapers to spare us from the pain of seeing the anal fissure leakage.
• I remember that on the day of Catelyn’s 2nd dialysis treatment, I was less worried about the procedure, but more so worried that Catelyn was going to be awake and not wanting to lie in bed for the duration of the procedure.
• I recall one of the technicians singing to Catelyn through most of the procedure, and that she tried offering ‘Backyardigans’ on her iPhone and saying that one of her children had a procedure once and she laid on the bed with her child every day
•  I remember contemplating lying on the bed with Catelyn for the duration of her stay, but not wanting to get caught up in her lines.
• I remember getting ready to make a quick run home on Saturday night, and seeing Catelyn look so bright eyed, and then hearing her exclaim ‘mama’, for what would be her last time, as I walked out of the restroom and she sat on my husband's lap coloring in my crossword puzzle book.
• I remember thinking we were on the upswing.....for a moment.
• I remember driving home on Saturday, and having this odd feeling that she was in trouble and my husband was going to call the house and say we lost her while I wasn’t there.
• I remember thinking that Sunday would be a day of ‘rest’, and that we would have a nice low-key day as she recovered from her 2nd dialysis treatment.
• I remember picking up a few things from Target mid-Sunday morning (including socks to fit her better), and looking forward to watching veggie tales movies and doing other little things with Catelyn, while my husband was at work that next week.
• I remember giving Catelyn a sponge bath – with the help of a nursing assistant, and putting her own clothes, a dress, to try to help her feel a little better.
• I remember holding Catelyn and trying to give her comfort, though it really seemed like she was in pain.
• I remember telling the nursing assistant about Catelyn’s behavior and reactions, and realizing that she was no longer cognizant of her surroundings.
• I remember snapping my fingers in front of Catelyn’s face, hoping she would come to, and when she didn’t, knowing that there was a real problem.
• I remember running down the hallway with the doctors and nurses trying to get her to the CT-scan. 
• I remember not being able to stay in the room for the scan because it was too scary.
• I remember sitting down in the hallway texting my dear friend because I was so afraid and things didn’t seem to be going well.
• I remember being in the P-ICU and one of the dr’s telling us that they needed to take action or she would be dead (though I can’t remember anything else he said at that moment except ‘sorry for being blunt’).
• I remember going into the room next door to call my folks and yelling at my mom because I needed her to understand that "Catelyn [was] in trouble"….which was all I could bring myself to say. 
• I remember our nurse, at that moment, politely taking the phone from my hand to talk to my mom and explain the situation.
• I remember calling my sister and telling her to come.
• I remember calling others to come.
• I remember waiting.
• I remember panicking.
• I remember talking to another dear friend, while pacing in another room.
• I remember going in to see Catelyn before her surgery, and singing ‘You are my sunshine’ to her and holding her hand. 
• I remember the horrible squeaking sound of the air pump they used to give her oxygen.
• I remember hearing the oxygen pump sound in the hallway outside the room we were waiting in
• I remember being informed that her blood pressure had been very low for too long, so if she started to crash during the surgery, they would not be able to resuscitate her.
• I remember feeling very anxious.
• I remember wanting to be away from everyone.
• I remember feeling like I needed to get some rest.
• I remember deciding to rest next to my husband.
• I remember knowing exactly what it meant when the three doctors/surgeons entered the waiting room, though they didn't say a word.
• I remember the staff sitting across from us.
• I remember staring at the surgeon's shoes.
• I remember them telling us she was gone, and they couldn't say why for sure.
• I remember them telling us that they tried for an hour to resuscitate her.
• I remember saying 'thank you for trying', as I looked all three of them in the eyes.
• I remember the surgeon giving me a look that almost said 'how dare you'
• I remember calling my parents, and my sister.
• I remember calling my aunt.
• I remember that Catelyn's daycare mom called me because she had arrived at the hospital to, so thoughtfully, surprise us.  
• I remember the feel of her body collapsing in my arms when I told her Catelyn didn't make it.
• I remember going in to see my baby and not recognizing her.
• I remember thinking this couldn’t be real.
• I remember her hair looking so blonde next to her grayish-purple face.
• I remember the blanket she was swaddled in.
• I remember being almost afraid to touch her.
• I remember her rigid little hands.
• I remember how soft her hair was.
• I remember that I wanted to cut a lock from her hair, but was overwhelmed at the thought of it being her first haircut, so my sister-in-law did instead.
• I remember my sister and sister-in-law doing a lot of the work that no one should ever have to do to preserve memories.
• I remember feeling broken.
• I remember feeling empty.
• I remember feeling this could not be real.
• I remember....

a day of trials

Today has been a moderately hard day.

I went to work this morning, expecting things would be 'normal' in terms of my job duties.  I had a crew of volunteers (who are amazing, by the way), coming in to assemble a mailing, and for the first time, in about two months, I didn't feel completely behind.

The second woman to arrive brought her granddaughter along.  She is nearing 13 months old.  Oh my was she ever sweet.  She had light brown hair and bright blue eyes.  She was so similar to my Catelyn, in the tiniest ways....she even made the same pacifier vocalization with sucking sound that Catelyn did when she would get tired.

Wow, was that ever a connection.

It was so hard for me to leave her alone when all I could find myself wanting to do was pick her up, snuggle her, and sing and cry.  Yep....it still hurts.

When they went to leave, that little doll blew kisses to me....they weren't the same as my Catelyn's, but they were a wonderful treat.

My heart was so full, so warm, and so sad.  It was certainly a bittersweet moment....

After I got home, I got on Facebook to find that a friend of mine, with three boys, had to take her youngest (around 18 months old, I think) to the ER.  He was having trouble breathing due to pneumonia, and was admitted.  My friend posted a couple of pictures of him at the hospital.

It was so hard to see those pictures.  They immediately took me back to Catelyn's time in the hospital.

I know that my friend's son will be well again soon enough, but I couldn't help but write her to tell her that she's in my thoughts and prayers.

In my opinion, there aren't many things harder than watching your child enduring needle pokes, and trailing a string of tubes around (making it hard to pick them up and hold them for fear of moving something the wrong way - though you still hold them because it's your baby and you want to comfort them somehow), and laying them down to rest in a crib that looks like it's a jail cell for babies, because it's fully enclosed by bars.

My heart aches for her to have to see her son that way, but I'm glad it's just a short term stay, and soon he will be back home again, in his own bed, with his brothers and parents close by.

Today, like many days, was certainly a day of trials for me, but I made it through, and that counts for something.

I'm Broken

Today I cried.......no......I wailed. 

This has only happened to me three other times.  Usually I have been in a seated or laying position, but today I was walking through my house reading my email, via cell phone, when this spell came on.  I haven't had a crying spell like this in a few months, but they are pretty horrifying when they come on (and this is coming from the person who is experiencing it, so I can only imagine what it looks/feels like to others).

Here's the best glimpse I can offer of how it went today:

Heavy sorrow swoops over me, and all of the sudden, all I can do is cry.
I sob and sob.  Uncontrollably.
Tears, warm like a heating pad and as large as quarters, stream down my cheeks and neck.  Into my mouth.  Onto my shirt.
My mouth gapes (and let me put it this way, if I were a fish, I'd probably be a large-mouth bass).  
Somehow I go from standing to kneeling, and frightful moans begin to come out of me.
My cat comes to my side to comfort me.  This makes me cry more because he was my baby's friend.
I begin to say (through my sobs) "I'm broken.  I'm broken.  I'm broken.  I'm broken.  I'm...."  Finally I run out of strength to say anything.
Slowly, I begin to re-collect myself.
I look up at the clock.
Ten minutes have passed (this is five minutes less than the other three times for sure).
I try to wipe some of the heavy, wet tears away.
I hear my husband come through the door.

I hadn't even been home two minutes, when all of this came on.  The back door to our house was open because I knew my husband was close to coming home....fortunately he didn't walk in to find me in this state, and neither did my neighbors, though I thought for sure they would.

This may sound odd, but I actually fully appreciate these scary moments when I'm caught up in my emotion.  I appreciate them because I know that I'm fully feeling in those moments, and at other times, I'm not always sure I am.

People don't usually get to experience this side of me.  The only one "lucky" enough to have seen me in this moment has been my husband.  He was amazing.  I thought I was going to hyperventilate that time, but he just held me and reminded me to breathe.  I couldn't ask for anything more.

So, if you're wondering if I'm 'okay', or you've been admiring my 'strength', please understand that I'm not 'okay' or 'strong'.  I still feel and mourn the loss of my daughter every day, and I always will. 

I just try to do the best that I can, and that is all I can expect of myself.

Hope

One of my friends, a very sweet woman who lives in my town, has been helping me process my pain.  She is simply wonderful.  She has three daughters.  Her middle daughter was 24 when she died of leukemia.  Though her daughter died several years ago, my friend has met with me on several occasions where we talk about our deceased daughters.  I very much cherish those moments.  I am learning a lot from my friend.

The other day I received an email from my friend saying, 'losing my daughter at 24 was hard enough, I can't imagine what you and your husband are going through.'  How very kind of her to say.

Here's something I have learned about losing a child.  It doesn't matter if your child was anywhere from gestation to 499 years old in age.  When you lose a child, your heart is broken, period, and I don't believe that it matters what age that child was.  No one is prepared for their child to die....even when you can see that they are very ill.

So why is it that we aren't prepared?  A small part of me thinks we are ignorant or naive, but a larger part of me thinks that it's about faith....love....hope...

You see, without really thinking about it, from the second you learn you are going to be a parent, forward, you immediately begin to plan ahead.

You begin to think about where the child will sleep, what kinds of things you will need for them, where they will receive their care (if you work outside of home) and of course, what their name will be. You wonder will you have a son or a daughter.  After they are born, you begin to think about people to see, places to go, things to do, all of the new things you didn't know you'd need.

And, as they age, you start to plan more and more....sports, cars, college, etc...  

I was the kind of parent who liked to try to be prepared for anything....

The day before Catelyn died, we had been told another round of dialysis would be needed for sure, so I took a quick trip to a store where I picked up things I thought we'd need in our hospital suite:  snacks for me, things to do, a couple of videos for her to watch while we snuggled, etc.  I picked up new socks because I felt that her socks were getting too tight, and as I walked past the clothing section, I noticed a really cute little pair of shorts in the next size bigger on clearance for $3 dollars, so I grabbed them too.

Catelyn ready to swing!

Please understand that part of me had been worried as to whether Catelyn would be okay.

There was that teeny-tiny (5%) chance things would not go well....there was a chance that she would have to have kidney treatments (dialysis) for life.  There was a chance...

...so why did I buy those things - especially that little pair of shorts (which I never did return)?

Because parents never stop planning ahead.  Even when our children are sick we keep the hope that things will go well.  Our children will get better.  We love them so much we refuse to give up hope.

Yay for hope!  What a wonderful thing.  Without it our lives wouldn't be nearly as joyful, and our pain could not be felt so deeply.

In other words, we would not really live.

Quick memory

My dad's birthday was yesterday.  Last year for his birthday, my sister, my husband, Catelyn and I all drove out to surprise him, and have family pictures taken.  It's so interesting how the little things end up becoming big things.  When we did our family session, we had no idea that it would be the only photo of all 6 of us together.  I guess it's a good reminder to seize every chance you can at any given moment.

This particular picture of Catelyn was taken at my parents house last April.  We had also traveled out to my parents for Thanksgiving of 2010, and she did the exact same thing with the black friday ads!

Either this little girl was easily entertained (just like her mama).... or she already loved to shop.  :-)

Say my child's name

If you mention my child's name, I may cry. But if you don't mention it, you will break my heart. 

- Unknown

For me, that quote says it all.  

I attend a monthly grief support meeting, and I cannot tell you how astonishing it is to me when people whose children died later in life - even when the child was in their 30's, 40's, etc - will tell stories about going to family gatherings, and other places, and their child's name is NEVER mentioned.

Here's the one of the main points that I think people need to know.  

Parents, siblings, and grandparents (not to mention aunts, uncles, etc) NEVER forget their child/grandchild, etc, and when you don't mention their name, it feels like that child never existed.  

Can you imagine how painful it is to feel like your child never existed?

I realize that there aren't classes on how to help people who are grieving, but maybe their should be....

Don't be afraid to say, "I remember one time when (insert child's name)....." to the survivors.  Yes, they are very likely to cry, but part of the tears are filled with the JOY that their child lived and YOU remember it.  

I simply cannot stress how important this is.

Yesterday my husband saw a family from the daycare that Catelyn went to.  The older child, a girl, said, "Are you Catelyn's dad?"  My husband said yes, and then they shared memories, and he showed a few pictures that he had handy.  It was the best moment - emotional, of course, but good.

We love hearing stories about Catelyn.  It reminds us that she lived....

....and that is the coolest gift ever.

How it happened

I was blessed to give birth to my daughter, Catelyn Anna on 12.30.2009. She was an amazing, sweet, bright and spunky little thing, and I couldn't have asked for a better child.

At 20 months and 6 days old, Catelyn became quite ill (she suffered from bloody diarrhea, and was barely eating), so we took her to the clinic.  After we were seen by the doctor on duty, we were sent to a local hospital and told to go directly to the Emergency Room.  We stayed a couple of hours under observation, but were released when Catelyn proved she could take in fluids on her own.

The next morning, she was very lethargic, and slightly irritable, and showed no signs of improvement at all.  We tried to get her to eat, but all she wanted to do was sleep.  We took her back to the ER.  That day, she was admitted. 

The next morning we were told that Catelyn was diagnosed with HUS (hemolytic uremic syndrome), which basically harms the kidneys and destroys red blood cells. You can read all about it on your own here.

We were told that there was a 5% chance that the disease could be fatal.  We felt that the 95% chance of being okay was very good for our odds, so we felt a little nervous, but not overly worried. 

Because Catelyn's kidneys were being affected by the disease, she had to have two treatments of dialysis during her hospital stay.  After the first treatment, she was a little spunkier, and things felt like they were looking up.  Her second dialysis treatment was on a Saturday, so we teased that Sunday would be our day of rest.

By the time Sunday rolled around, we had been at the hospital for almost a week.  We enjoyed the company of a few visitors, around mid-day, but by late afternoon things started to seem odd, and it wasn't very long before our world changed forever...

Looking back, it feels like it was a total of 5 minutes that everything took place - even though it was far closer to 7 hours.

Minute 1:  We realized she was unresponsive (while the nurse was taking her stats), the next second we were flying down the hallway with the doctors and nurses to the room where they could do the CT-Scan, and in the blink of an eye we were being told that they had to act now or there wouldn't be time.

Minutes 2-3:  We made phone calls to our immediate family, waited for a variation of dialysis to work and for a cause and treatment to be discovered.

Minute 4:  We were told that they were concerned that her intestine was mostly dead and that there was a slim chance for repair, but that time was limited.  We went in to kiss, hug, sing to and talk to her.

Minute 5:  Just as I began to come to terms with the fact that it would be a long night, our world came to a crashing halt.  The doctors were back telling us she was gone.



Catelyn died on September 11, 2011.   For our family, it is one more reason to cringe at the thought of Sept. 11th.