Onward Through the Fog

It’s the question I hear the most and have the hardest time answering.  “How are you?”  My baby died.  He was about to be born, and he died.  And we don’t know why.  At times I can think, “Okay, this is part of us now, part of our story.  It is who we are.  It is something Wes & I share that no one else can understand.”  But other times, the grief sneaks up on me when I’m least expecting it.  When I’m putting the kids in the car, when I can’t find clothes that fit, when I wake up thinking about him and just can’t stop, when I see people looking at me and wonder what they’re thinking.  At some of those times there’s a lump in my throat.  At others it hits like a train.  It’s like something is digging into my chest.  It has surprised me how circular grief is.  One minute I might feel like things are getting better, but then when it comes it’s like starting all over again.  How can emotional pain be so physically palpable?  My arms ache to hold him.  I think about all the times I complained about getting up with babies in the middle of the night.  I would wake up every night for the rest of my life if it meant Cullen was alive. 

It’s hard not to ask “what if?”  What if I had changed my appointment to that Monday as I had considered doing?  What if I had said yes when the doctor asked if I wanted to be induced?  What if Tuesday hadn’t been such a busy day?  Maybe he would be alive.  Or maybe he wouldn’t. 

Austin talks about him, and I love that.  He talks about missing him and wishing he were here, but he also sometimes talks about him as if he weren’t gone: “Cullen doesn’t know how to play with little Legos” or “I think Cullen would like this.”  The matter-of-fact-ness of an almost 5 year old is refreshing.  He doesn’t worry about what to say or if he’s saying the right thing.  He has a question, and he asks it.  When is Cullen’s birthday?  Where’s heaven?  Are there Legos in heaven?  He tells people we meet, “our baby died.”  I wish I could do that sometimes, but that’s kind of conversation-stopper.   And I don’t really want to be known as that weird lady that lost her baby. 

Our kids are a huge help in keeping us going.  We don’t have the option of shutting down or staying in bed all day.  They bring joy and laughter.  Their hugs and snuggles are better than any medicine or comfort.  And I appreciate them more.  The smiles, the “I love you’s.” Even the annoying noises and bickering are somehow not as bad when you realize the alternative is not having any of it. 

We know we will be okay.  We know a day will come that we can see more clearly and breathe without the weight of our loss feeling quite so heavy. And so we will move onward through the fog.

That Dreadful Wednesday

On that Wednesday morning I was awakened at 3:30am by a crying 2-year-old. After helping her get settled, I lay back in bed & realized I wasn't feeling Cullen move & didn't remember him having an active time the evening before, which he usually did. I thought he was probably sleeping, but prayed for even the tiniest movement to calm my fears. I never felt him move, but I was having contractions every 10 min for about an hour & 1/2.  We had a very busy day Tuesday, so I thought I probably just hadn't noticed him between work, kid's dr appt, practice, meetings, etc. Plus, I was thinking I would probably be going into labor soon, so I figured I was just more focused on my contractions than his movements. I finally fell back to sleep for a bit, but the next morning I still wasn't feeling any movement. I had my 38 week appt scheduled for 11:00 that day. I called the office & asked if I should wait until then or if I needed to come in earlier. They told me to come as soon as I could, so we called Wes's mom to come stay with the kids. I told Wes I thought I'd take my bag I had packed just in case (more bc of the contractions I'd been having than anything).  I was nervous, but still just had not even considered the possibility that he was gone. When we got to the doctor's office, they took us right back & started my ultrasound. She put the transducer on my belly & a very clear picture of his still heart appeared on the monitor. She moved it & came back to the same image. I said "there's no heartbeat, is there?" The tech stood up & said, "I'll get the doctor."  And so began the worst day of our lives. The doctor offered to let us go home & come back the next day, but we both just wanted to get this nightmare over with. So he walked us upstairs where they induced my labor. Cullen was born at 4:07 pm and weighed 5 lb 15 oz.  He looked like a combination of Austin and Kate.  He had Wes’s big toe and the Ruttmann little toe that curls under the one next to it.  Wes’s parents said he had the Peek nose.  He had long skinny fingers and a scratch on the side of his nose.  He looked perfect, as did his cord & placenta. The dr's best guess is that it happened quickly that night, given that there was no degradation of his skin or other changes.  There are many tests being done looking for answers which we may never get. Most of our families were able to be there & meet & hold Cullen after he was born. My doctor and nurse were both fantastic. We were able to hold Cullen as long as we wanted & see him anytime throughout the night. We were discharged the next morning & drove home empty-handed to deliver the news to our children. We've spent the last 3 weeks learning how to live our lives as we previously knew it, but now with a hole that will always be there.

These Are the Days

Since my last post I’ve written about 4 blog entries- in my head.  After certain experiences I tend to reflect and think about our life as it is.  After losing Addison at the Baylor Homecoming parade I was thinking, “These are the days.”  These are the days of her running at every chance she gets. These are the days of having to leave events early because our kids are cold and falling apart.  These are the days of leaking diapers, hungry kids and naptimes.  These are the days of neverending laundry, nonstop errands, homework and some days, just trying to make it to bedtime.  (We found Addison, by the way, about 15 minutes later when some nice man carried her back down the street as we searched frantically.  She thought the parade looked like so much fun, she joined in.)  I was reminding myself that this is all temporary.  Then I realized, this is all temporary.  These are also the days of snuggly kiddos.  These are the days that my kisses make scraped knees better.  These are the days of mispronounced words that are oh so cute.  These are the days of kids insisting on going to the grocery store in capes and frog boots or tiaras and bracelets.  These are the days of a full dinner table, dance parties and kids screaming with delight as their Daddy chases them around the house.  Soon enough our house will be full of smelly, moody teenagers who think their parents are dorks, and eventually it will be utterly quiet and will stay beautifully picked-up after I clean.  So I will do my best to keep smiling through the diapers, laundry and meltdowns because I know that I am immensely blessed.

My Gluten Soapbox

I have seen so many articles, cartoons and Facebook posts lately making fun of people on a gluten free diet.  I feel I owe it to my daughter to clarify a few things. 

Yes, eating gluten free seems to be a bit of a fad these days, and, honestly, I have to wonder if people who are “trying” to eat gluten free have any idea what they’re talking about.  It is a life-altering commitment to live a gluten free lifestyle.  Yes, I said lifestyle, not diet.  When Addison was diagnosed with celiac we had to change not only the foods she ate, but our shampoos, make-up, lotions.  She can no longer play with regular playdough or certain paints.  Anytime there is a craft activity involving pasta, cereal or any other foods- guess what?  Addison is at risk for being sick for a week. 

Learning a list of literally hundreds of ingredients to avoid, scrutinizing food labels, paying 3 times as much for gluten-free alternatives, making alternate arrangements for every birthday party, restaurant outing or holiday event is not something many people would choose to do.  We have a separate toaster, separate cookie sheets and dish brushes.  We have a constant awareness to not contaminate her foods by sticking our hands in the chip bag or by touching her food with gluten on our hands.  I’m sure Addison would love nothing more than to down a box of goldfish and a real chocolate cupcake. (Don’t get me wrong- I am happy to do it to keep my daughter healthy, but it is not something I would do for fun.)

Celiac is a genetic autoimmune disorder that affects about 3% of the population.  For these people, gluten is a poison to their systems.  When exposed, their intestines lose the ability to absorb properly, which puts the person at risk for anemia, malnutrition, intestinal cancers among a laundry list of other health problems.  I don’t see anyone making fun of diabetics on a low-carb, low-sugar diet or hypertensives on a low-sodium diet.

Gluten is found in wheat, barley, rye and contaminated oats.  For those without celiac or gluten intolerance, it is not harmful.  In fact, most of the breads and cereals that first come to mind are enriched with vitamins to promote health even beyond the benefit of the whole grains and fiber inherent in the foods themselves.  That’s right, those of you using your noggins are realizing that means that a gluten free diet also requires some effort to make sure that person is getting enough fiber and grains elsewhere in their diet.

As I mentioned before, please don’t think I’m complaining.  I am grateful that there is a relatively simple solution to the life-threatening condition we would otherwise have on our hands.  But the next time you choose to make fun of someone, do it about something they can control.

First Day of School & Other Sundries [I'm a little late. What's new?]

Well, the kids have all started school & are settling in well.  Addison has a few weeks of kindergarten under her belt.  We’ve had a few little logistical kinks to work out in the beginning, but I think we’re pretty good now.  Her school has never had a student with Down Syndrome before, so this is a learning experience for all of us.  We’ve always known that school was going to be a lot of work for her and us, but the reality of that is starting to sink in.  It’s going to be a lot of work.  But I think she’s going to shock them at how much she can learn and do!

Austin & Kate are enjoying preschool.  Well, Austin is.  Kate is getting used to it.  She didn’t cry the first few days, but now she does.  I think it was all new and exciting in the beginning and now she’s thinking, “Whoa!  I know what’s about to happen now.” I think she has fun once she gets over the separation.  

The kids have been a lot of fun lately.  Kate is really starting to develop a cute little personality.  The other day she wanted me to help her put on this dress.  I turned around a few minutes later and saw this:

I started trying to get a picture, and all the kids wanted in on the action.  They were cracking me up posing and lining up all by their own doing.  I’d like to see this kind of participation at our next family photo shoot!  It has been really fun to watch them all play together and become better friends.

We've had a lot of fun around our house celebrating birthdays the last week or so.  My sweet mom threw a little party for me here in Allen, and Austin's celebrations are dragging out over about a week.  More on that next time.

The Beach

Yes, we did just make two 13-hour road trips in a week with 3 kids 5 & under.  It was actually not nearly as bad as I was expecting.  The kids did great in the car and loved the beach.  We logged some serious movie-watching hours, but when you spend longer in the car than the kids are normally awake, you do what you have to do.  It was really nice to have a week to not think about stuff that needs to be done around the house or before the kids start school.  Eleven people in one house with some pouring rains did make things a bit hairy at times, but we still had a great time and got to spend some time at the beach every day.  We were once again reminded of how thankful we are for our families & the opportunity to help our kids make memories.

 This week is back to reality!  We have a week full of catch-up work, kindergarten orientation, IEP meetings & back-to-school night.  Ready or not, here we go...

Summer Days

Well, so much for being better about updating the blog.  It’s been a long time since we’ve moved, and never before with mobile children.  Let me tell you, it’s work!  We are finally feeling settled and have unpacked all of our boxes!  We’ve had some very long days around here with no school, church or friends to speak of, but have loved being closer to family.  The kids have gotten to play with their cousins a lot and have loved every minute of it.  We have met a few new friends and neighbors and enjoyed some outings with them.

I’ve discovered that my kids fight, argue & whine more when they’ve been watching tv, so - until last week when we had 3 sick kiddos and daddy out of town- we’ve turned off the tv.  I was a little nervous because I thought it was going to be brutal (for me!), but it’s actually been great! They do still ask to watch, some of them incessantly, but it has been so fun to watch them read books, make up games together, build forts, play hide-and-seek.  The other day Austin had quite the elaborate scenario with his monkey, the fridge, a tube of toothpaste and a car.  

Addison has been all about anything princess lately.  She asks to wear a skirt or dress every day, and has “glass slippers” that are a necessity to daily life.  Her tiara and jewelry are intermittent, but still just as crucial when the mood strikes.  Ironically, she also loves to clean- maybe just channeling Cinderella.

 Addison cleaning (with Wes still sanding) saying,"No, Daddy, no.  I clean."

Austin has gotten really good at playing.  His imagination abounds while he plays with his cars, trains, legos, imaginary cupcakes with his sister or makes up a story for us.  All of my kids, but especially him, love to pretend to sleep.  He will drag his comforter, pillow and all auxillary sleep essentials (i.e., blankets, stuffed animals, etc.) into Addison’s room or downstairs to the couch to have a “slumber party” at any hour of the day.  If only it involved truly sleeping, I’d be all in!

            Kate is so wanting to be a big kid.  She wants to sit in a chair at the dinner table, climb up on the bar stools, jump on the trampoline and wear a tiara like her sister (enthusiastically shouting “Yeya, Yeya” anytime she spots Cinderella. She gets a fat lip or bonked noggin at least once a week and just keeps on movin’.  I guess that’s the life of #3.

We’ve all loved having Daddy around more.  It’s only been a couple of months, but we definitely feel like this is a good move for our family.  Until next time...