31.1.14

IT'S OUR HALFWAY SHOW

Today we are at 20 weeks with Baby Number 2. Next week, we get to find out if we are having a baby boy or a girl. Matt thinks we are having a little boy and, while I used to think we were having a boy, I am kind of picturing a little girl.



Either way, we can honestly say that we just want a healthy baby. We said that with Lauren and of course we meant it, but this time we REALLY mean it!

I've been feeling this little one wiggling around since week 16 and this morning I was woken up with his or her kicking. I think that is the one thing that I love the most about being pregnant - that feeling of the baby moving inside, the life that is growing and will be exploding into our lives very shortly as a bundle of sweet, crying, away-during-the-night baby goodness.

I can't wait to snuggle a baby again.



I am also trying to enjoy my time with Lauren as an only child. I am well aware that life will change again shortly and we are in such a comfortable groove right now. Of course there are the terrible twos sneaking up on us and that is being shown as crying and Lauren's attempts to assert herself. But on the whole, Lauren is an easy kid. When asked if she needs to go to her naughty spot, she usually says, "Yes" and walks into her room, closes the door behind her and sits down for a moment. When she comes back out, she says sorry, gives us a hug (and sometimes a kiss if she is really sorry) and then modifies her behaviour to do whatever we were asking her about in the first place. Matt and I spend the whole time looking at each other and laughing silently while she marches herself into her bedroom.

On my days off, Lauren and I go on fun outings like gymnastics, swimming, runs with the promise of a playground visit with the world's steepest slide (which she LOVES!), Target (or is that just fun for me?), to Central Park to feed the ducks, to visit family and friends and off to Starbucks to share a hot chocolate. Have I mentioned that I love my time with her. I just want to eat her up! And how blessed are we that we will get to have that again with another little one.

But for now, I am relishing each and every moment that I have with my little girl.




25.1.14

THAT'S ONE DRUNK BABY


On Tuesday, Lauren went back to the hospital for her heart check up. Like every other time, she had to be sedated with a drug that makes her drowsy and uncoordinated. It is pretty much like she is really drunk. It is cute because when she's under the influence, she looks at me and gives me such a smile of love that it makes me all warm and fuzzy inside. She will gently reach up and pat her hands on my face with that dopey love smile on her face and I use the time to steal lots of kisses and cuddles.

During her echo we laid together on the exam table and watched Dino Dan. She did really well until the meds started to wear off. At that point she gets frustrated because she wants to do everything herself but when she tries to walk, she struggles to stay vertical, much less being able to walk in a straight line.


After her Echo, EKG and pacemaker scan, the doctors called us in for the report. I love that her cardiologist started the appointment with, "I'm not going to beat around the bush, everything is looking really good." That was so nice to hear. Until that moment, you are trying to remain calm, but really you're sitting on pins and needles.

So the news was 92% good and 8% cautionary tale. 92% good because Lauren's heart is pumping blood like a normal heart would, her heart rate has slowed as it has recovered, her pacemaker leads and battery both look good, and her meds are doing a good job. They took her off of her aspirin and all of the other drugs are going to stay at their current levels so that as she grows she will be naturally weaned off of them.

The 8% is still the aorta. Lauren's aorta is shaped like an hourglass where she had her first repair. Her heart muscle is thickening because it is having to work harder than it should to push blood past the point that is narrowing. We were told that this will go one of two ways. Either it will relax and widen as she grows or it will not and then it will be more serious. Right now, her heart is able to function well even though it is dealing with that. I am going to be praying my heart out (pun not intended) that her aorta relaxes and widens so that her heart can continue without any other intervention. God has given us so many miracles in how her heart has recovered and is now functioning and this is the one last piece of the puzzle. I know that it is 100% possible. Please join me in this prayer and continue to keep Lauren lifted up. I can't wait for the day that I get to write that her heart looks totally normal with no issues or concerns.

The day after Lauren's appointment, I gave her her morning meds but she didn't get her aspirin as per her new regimen. She kept looking at me with one finger held up which is her sign for "one more" because she knew that she should take one more medicine still. She only accepted it once I showed her the empty pill splitter box and said, "All done." Yep, all done.

Nine more months until our next appointment. So much will happen in those nine months and I pray that one of them would be the final step in Lauren's miraculous healing. God is so good.

When Lauren woke up from her nap, she was feeling much better and I helped her along with some popcorn (a recent favourite). It was hard to tell but I think she liked it.



(On a side note, I also arranged for Baby Number 2, who has been kicking me like crazy for the past few weeks, to have a heart Echo done when he or she is born since ALCAPA can only be detected after birth, not in utero. Dr. Duncan said that it would be like getting struck with lightning twice to have two kids with this condition but I know that I will sleep better at night - in limited, short, newborn baby stretches - knowing that Baby Number 2 doesn't have a hidden heart issue.)

20.1.14

HEART CHECK UP COMING TOMORROW

I've noticed that my anxiety over the past few weeks has been slowly increasing and it is very likely that it is due to Lauren's appointment at Children's Hospital tomorrow. While all indications around here (constant playing, jumping on her bed and a general go-go-go temperament) suggest that everything will come back just fine, until I hear those words, that niggle in the back of my mind will remain.


Please pray that Lauren's miracles have continued and that there is no further tightening of her aorta present. Last time we went in, her heart was functioning "normally" and the plan was to start to wean her from some of her heart meds at this appointment. We would ask that the Lord let everything go smoothly tomorrow with Lauren's sedation, that they get the clear pictures that they need and that the decisions that they make help her heart to even further recover.



Oh, it looks like we're off to drink imaginary water from the tap of her new play kitchen. We have important business to attend to!


17.1.14

CHURCH: THE WORST TRIGGER

I have written before about some of my triggers - those things that cause me to cry, usually uncontrollably, about everything that we've gone through with Lauren. Unfortunately, though I've been able to work through many of those triggers, one of the worst ones is going to church.

It is embarrassing to share that because you would think that after everything church would be a place where I could focus on the future. Instead, it is the worst trigger. It is the worst in two ways: because it is the most consistent and most difficult trigger to control but also because it is the last place that I would expect or want a trigger.

Triggers for me fall into one of two camps.

One type is the flashback trigger. These are the ones where I am transported back to the emergency room or the ICU or the waiting rooms by the ICU. I relive specific moments and they are so vivid and full of excruciating detail. These typically happen when I'm away from Lauren. They happen in the moments when I'm not occupied singing Zoom, Zoom, Zoom for the tenth time in a row, reading a book from memory, having a picnic on the kitchen floor or snuggling on the couch watching a movie. They happen when my brain is unoccupied by the business of my child or when I am unable to see her and be reassured of her health. The flashbacks are something that I know how to work through. I have steps that I use: I find Lauren and look at her, I audibly tell myself to stop, I focus on separating the past from the present and, with these tools, I am able to shut down the trigger.

The second type of trigger I have found more confusing to understand. Let's be honest, Lauren was sick over a year ago now. I should be over it by now. But as much as I wish that was the case, it is not. The second type of triggers that I have cause me to fall into uncontrollable crying. They often leave me exhausted and sometimes sad for a period of time after they occur. However, I have realized that my crying is not usually because I am sad about what happened. It was a few weeks ago that it finally started to make sense. I was reading a blog, Lil Blue Boo, that I started reading shortly before Lauren got sick that helped me realize what I was crying about. The writer of the blog has gone through cancer twice and has been writing through her recovery. She wrote a post that was a synopsis of everything that she's gone through and towards the end she said what turned a light on for me.

"I’m still here. And I’m grateful. And I still cry in the shower at the magnitude of it all. It’s not a sad cry it’s more of a this-is-huge cry." 

That is what these triggers bring up - not sadness or depression (which I was afraid that it might be) but the overwhelming sense of the hugeness of what we have been through. (You can read her full post here.) It was a relief to realize that these triggers and the crying are not a bad thing, but just a response to our past. But here's where it gets tricky. This happens each and every time that I go to church.

I thought that it was just when we go to our church because the pastor of our church was there with us through all of our time with Lauren. He went for coffee with us, sat with us, sat with Lauren and prayed with us. During Lauren's second time in the ICU, when the doctors wouldn't say a single encouraging thing to us (probably because they didn't see anything to be encouraging about), he prayed with us one night when we were at our lowest and we all cried while we prayed and the rawness and pain in that prayer has been seared into my brain. It was in that moment that I felt God move and tell me that He had things in his hands. That was when the song that I have held onto for Lauren "Be Still and Know that I Am God" came into my head and repeated over and over. While that moment led to peace and hope for me, when I hear our pastor pray, I am brought back to that time and the complete lack of power that we had over what happened with Lauren.

So, when we went to a different church this past weekend, I thought it would be easier. Not a chance. It isn't my memories associated with my pastor that makes church a struggle, it is memories attached to God. When Lauren was in the hospital, it was the first time in my life that I actually had to surrender something. And it wasn't just any something, it was the person that I loved more than anyone else in the whole world. A person that I loved more than I ever thought even possible. And I had no power over whether she stayed on the Earth or left me there alone. I had to be still, hand her over to God and know that He was in control. There were times in my lie before where I would hand something over to God but I would still work my butt off to get the outcome that I wanted. There was always an element of control that I maintained. And all of those things that I handed over were stupid in comparison to the life of my little girl. Were things really as bad as I think they were? No, they were actually worse. I lived through much of that time with rose coloured glasses on, thinking that there was no way that Lauren wouldn't survive. But looking at the situation objectively, no word other than "miracle" can describe her being alive and asleep in her crib tonight. She really shouldn't be here. And she definitely should be as healthy as she is. But she is and it is a miracle.

But that miracle has left me broken. I am a weeping mess when I think about the hugeness of what we've gone through. I still struggle to talk about it without downplaying the seriousness or risk losing all emotional control. And I'm broken when I come in front of God. His power and peace, his unfailing presence and sadness were always there with me. I'm broken because I  know that when I was on my face, He was there with me. He wasn't standing far away or even a few steps away, He was right there on the ground with me. However, in the year that has passed, I am still on the ground. I feel like my legs don't work and, spiritually, I am still on my knees. When I go to church and come before God, I can't think of Him without thinking of the power that I saw and the whispers and words that He spoke to me to get me through that time.

When I go to church, at least one line in every song makes my tears threaten to break the dam. Prayer drops me to my knees before God and the sermon gives me time to focus on those ways that I have experienced God. And all of these things bring me to the point of crying. The Kleenex that is stashed in my purse ends up well used as I try to hold it all back and act like I'm not about to cry... and not just cry a little, but ugly cry. I have tricks, like looking at the lights or forcing a yawn to swallow the tears down. Usually they work, but it is exhausting. I hate that I spend the entire time in church struggling. I end up physically and emotionally wiped.

Yet I'm not sure that I want this to change. Being broken allows me to have a gentleness that I didn't have before. I am a better mom because of what we've gone through. I have patience and a depth of love and appreciation that I wouldn't otherwise have had. I am a more understanding person because I give space for the things that are going on in our lives that we don't always share and struggle with alone. I remember when Lauren was in the ICU, anytime that I wasn't with her, I wanted to scream about what was happening so that everyone knew. But I didn't because that is not socially acceptable behaviour. How often do we hold things in because we are trying to fit into the norms of appropriate behaviour? Yet, when I refuse to cry in church, that is exactly what I am doing. My tears might make others uncomfortable, I definitely don't wear waterproof mascara and I know that my crying would be anything other than pretty. I make my behaviour fit the expected patterns but inside it is absolute turmoil.

I am hard on myself for this. I have allocated myself an amount of time that I think is appropriate to get over all of this and I have definitely passed it. But here I am. Still broken. How much longer will I be like this? I don't know. We've gone through something huge and I think that I need to cut myself some slack. I know that God doesn't mind seeing me broken because He is right there with me even now that the imminent danger has passed. I think that after the soul searching that I've done lately, I've come to the conclusion that I have to go back to the words that He gave to me and be satisfied to be where I am and be still and know that He is God. He doesn't set a time limit for us to get over things. He doesn't abandon us thinking that we've been there long enough. So it is okay for me to stay broken.

I believe that everything happens for a reason. While we have gone through something that I never imagined would happen me, I also know that I am better for it. It isn't better that Lauren has a pacemaker or a scar. It isn't better that I struggle with depression and live in fear of falling back into it. It isn't better that Matt lives with triggers and flashbacks as well. But there are some things that are better, though sometimes they are hard to see or take a long time to develop. We are stronger as a family. We have a depth of understanding that wasn't there before. We care more. If I need to maintain some sort of brokenness to hold onto these gifts, then so be it. I don't really want to go back to the place I was in where I can enter and exit a church unmoved. So I guess, for now, I will exist in this hard place that Sundays bring.

Update: Have I ever mentioned how wonderful my husband is? Well, if by some chance I've overlooked that, Matt is a wonderful, supportive, encouraging and caring husband. We sat down to talk about this issue and we've come up with a plan. We're going to go together to a service and I'm not going to hold back. I will excuse myself when I need to and just let the tears come if they need to. It is so nice to have him on my side and willing to walk with me through all of this, rather than just dealing with it myself. I think that Matt's support is a big part of why we are doing so well as a family. He's just the best.

11.1.14

GYMNASTICS ANGEL

My sister is constantly making up new names for Lauren. While Lauren has a ridiculous number of nicknames that we all use on a regular basis, Elysha's change with Lauren's activity. The nicknames are pretty much a fill in the blank of whatever activity Lauren is doing with the word "angel" tacked onto the end of it. So as soon as Elysha knew Lauren was going to gymnastics lessons, she became "Gymnastics Angel."

Earlier this week, Lauren started gymnastics lessons. I say "lessons" pretty loosely. But whatever it is, Lauren loves it. It is parent participation and I like getting to see her explore the gymnastics equipment. When I signed her up I thought she would enjoy it, but I wasn't fully prepared for her extreme excitement that she demonstrated. She actually threw a crying fit when she saw the room and had to wait to go in. I thought it was because I had stepped into the washroom and she missed me, but no, she didn't care where I was as long as she could run in and explore. When she did get to go in there, she showed talent on the trampoline, crawling through the tunnel and walking on the beam with a hand. She learned how to roll like a log and also discovered that she is repulsed by foam pits. She opted to use the foam to build a tower instead. It will be great to head back with her next week... but I will make sure that we're not early so we don't have the pre-class, we-can't-go-in-the-room-yet-meltdown.






You can view Gymnastics Angel in action in the video below:

6.1.14

WHAT A (CRAZY) KID

After my waterbottle had a fight with my phone and my phone lost, I got a bit behind on my photo collection. The month of December kept us very busy with special events, Christmas activities and special family time with Matt and I off and home with Lauren for two weeks. Here are a few glimpses of what we were up to.

Lauren and her heart buddy, Lauren as well, were invited a huge Special Children Christmas Party. There Lauren discovered her love of all things bouncy castle. It was a very busy day of child wrangling but the girls had a blast (and thankfully stopped for 5 minutes on the beanbag chairs which gave all of us a bit of a breather).

Matt loves sparkling apple juice and has passed his love onto our daughter. He taught her how to clink glasses and "Cheers!" every time. It got a bit overwhelming as she started to cheers with every glass of liquid in her hand. The mess potential was enormous so we've had to try to take it down a notch.

Lauren's favourite program is Dino Dan about a boy who sees computer generated dinosaurs everywhere. The words Dino Dan have become something that Matt and I have to whisper because if she hears it, she screams, "Da Dan" on the top of her lungs, goes racing to sit down in front of the tv and gives us the remote over and over again until we turn it on. Thanks to Dino Dan (which I have to admit I purchased this evening on iTunes for my phone, ugh), Matt and I get cuddles with Lauren, so we put up with it. This, however, was not the most comfortable cuddling position that Lauren has ever insisted on. She really wanted to use a pillow.

She wouldn't put these on until the day that I was trying to put them away. Typical.
Matt got Lego for Christmas and he and Lauren spent a morning building and playing with Lego. Have I ever mentioned how great he is?

Out for walks.

We've had renovations done in our basement to help fit upcoming baby number two into the house. Lauren LOVES the reno site because she finds pencils that she is allowed to use to write on the floors and walls, brooms to drag through the space and dustpans to wear on her head. What's not to love?!
Matt and I took Lauren out for a date to Starbucks. She and I both have the same favourite drink - hot chocolate. However, I typically manage not to get it all down the front of my shirt. Starbucks date = laundry.

Her many faces kill me.

She saw me once stand up on the stool and put two and two together to realize that she could stand up on it and get at that elusive white board that she always wants to scribble all over.

Lauren loves books and I love that it is one of the few times that she will sit still with me. Books and Dino Dan.

Our time together has been so much fun. What a perfect Christmas vacation we got to share together.




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