Lake House 2011

We go out to my brother's lake house every year. This was Alex's first trip. My 5 year-old nephew was quoted as saying this weekend "was the most fun he's ever had in his entire life. Better than Disney." There was swimming, boating, fishing etc etc etc. The kids even caught a turtle! All of Alex's cousins were there! He had such a good time with his cousin Abby who is only a few months older.

out takes.

I got the CD in the mail today with all "the rest" of the pics from our photo shoot done about 6 weeks ago now. There was picture after picture of both twins looking adorably and looking as awkward as an out take can get. The I came across this picture and cried. You see, my original idea was for me not to be in ANY of the pictures..this was a photo shoot for the twins. This photographer (who is AMAZING BTW) was just taking pictures on the fly. This particular picture was taken at random. She caught a moment that I frequently had with Lauren. I would sniff her head. Weird, I know. It was just me, soaking up Lauren.

This post is to show how stinking cute Alex is!

I just love him!

Alex gets older...quickly!

Alex got his fourth (or is it fifth?) haircut last weekend and seemed to age an entire year. He's losing his "baby look" fast. He's starting to eat more but the process is slow. For the past month while I work he's been at "his best friend's house". This is a little boy who is exactly Alex's adjusted age so they play together and he shows Alex how to eat. In fact, He even taught Alex the sign for "please". Apparently, these two boys speak the same language and Alex just learned he get get anything by using the sign for "please". They chase each other around the house and when his friend's parents are brave enough they take him to the zoo or the library. (I've been told having the both of them in public is like "herding cats".) They have baby chicks at their house and a piano! There is NOTHING Alex loves more than a piano! The parents are both teachers and just really great people so the more exposure to them, the better. Overall it's a great way for Alex to get exposure to other children (which he needs) without getting sick (which he doesn't need).

We meet with a nutritionist every 2 weeks for the past few months. Every time we do Alex's wight, length and head measurements. Last time he was tipping 24 pounds (this means he's gained a pound every month since his G-tube!). We've decided to cut back on his feeds and calories to make him hungrier and more likely to eat by mouth. We do 3 feeds a day, and now he's awake for all 3. We've added back an ounce to each feed as to not decrease his calories too much. He seems to be doing great with it and starting eating a bit more. His new thing is to eat and drink while in the car...this makes for a MILLION Kixs all over my car!

Missing Lauren.

I missed Lauren a lot this weekend. REALLY missed her. She was so happy and gave me so much more than I ever could have given her. People write things like that all the time. Two years ago I would have thought "that's just crap that people say to make themselves feel better". I was wrong. It's actually true.

There's a man who does the Ironman triathlon out in Hawaii every year with his disabled son in tow. A son who he pulls swimming, biking and of course running. Their name is "Team Hoyt" if you'd like to look them up. Year after year I've watched him and heard his story. The questions were always the same. "Wouldn't it be easier to do this enormous physical task without pulling your son?"His answer was always the same. "I couldn't do this without my son". While I always thought this was a nice sentiment, i never really understood it. I do now.

Since Lauren's death if anyone, even for a brief moment, thought I was better off, they didn't know Lauren. If anyone thought, "well now she can lead a normal life again". They didn't know Lauren. They may have met her and even held her a time or two. Or, they may just follow this blog. I cannot describe what a joyful, happy baby Lauren was. I cannot describe the joy it gave me to see her sit up for the first time on her own. Or search for her paci for the first time. Or laugh SO hard at her cousins that her face turned beet red and she would trigger the vent. Pure. Joy. I'm in no way better off without her. If you never got a chance to know Lauren, the loss is all yours.

Miles to go before I sleep....

I haven't posted in what seems like forever. I've been waiting until I felt like I wrap my head around a post without an update on Lauren. At what point will this get easier? At what point will I stop referring to "the twins" or "children" or even "kids". I bet it will be at the same point after my dad died when I stopped referring to my"parents" and starting just saying "my mom".

We live in a culture where we don't talk about death. It is more taboo to talk about death than it is about money, weight or even sex. We are all fooling ourselves because the very truth of it is that no one gets out of this alive. SO why are we not talking about it? What makes us so uncomfortable? We are there not more of us buying our plots and making out our wills? Where does this fear come from. It is very counter-culture to say but the day my father died was the day I no longer feared death. You see, death was never the worst case scenario for Lauren. Don't get me wrong, I would sell both of my kidneys for one more day at the zoo with her. She was pure joy and taught me what giving it my all really looks like. Lauren strengthened my faith in God. All those nights awake giving breathing treatments and at some points doing CPR, it was not me saving Lauren, but her saving me. I usually save this kind of talk for my now-hidden blog but I feel more urgency than before. I believe is was C.S. Lewis who said that God whispers in our joy and screams in our pain. I've been getting screamed at for the past two years. Believe me when I tell you, there is spiritual warfare going on. I can feel it. Whose side are you on? God doesn't make mistakes. I know one thing for sure: I was not meant to live an ordinary life.

Alex is sick :( He has a double ear infection and his lungs are wheezing. He's a little crabby but overall doing well so far. We have started antibiotics and steroids and upped his breathing treatments to every 4 hours. He is now walking 99.9% of the time and is coming close to 24 pounds.
The twins and I did a professional photo shoot the last weekend Lauren was alive. What a treasure these pictures are!!

Lauren's Eulogy

There’s a bible story I’ve grown up with but never really paid attention to until I met Lauren. It’s the story where Jesus heals the blind man.

In the book of John:

As he passed by, he saw a man blind from birth. 2And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” 3Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.

The works of God were displayed in Lauren. I saw God daily as she bloomed. I feel so blessed that I got to be her mother and see her develop into the sunshiny baby she was.

PAUSE

Things most people did not know about Lauren:

1) she was born “in caul” which means she was brought out of my stomach still inside her bag of water. In some cultures this is a sign of good Luck.

2) Lauren was always measuring smaller on ultrasound than Alex. Lauren is the reason the babies were monitored so closely and delivered because of the great amount of distress they were both in. It is this reason I believe Lauren, in fact, had saved Alex’s life.

3) Lauren and Alex had their first fight last week. Lauren was playing with the long stick( which by the way is the prized toy in the house even though it looks like toysrus exploded) and alex jerked it out of her hands at which point Lauren threw a fit. I had to laugh because that seemed so normal.

4) Lauren loved to be tipped upside down.

5) Lauren loved music. Especially music that was sung to her.

6) Lauren would frequently put the whole pacifier in her mouth.

7) Lauren loved her head rubbed.

8) Alex would see us doing chest PT pn Lauren which involves hitting her back and sides so his most frequent interaction with her would be to pat her as well.

9) Lauren and Alex and I would have story time every night at 6pm. I would read the touch and feel books where Alex would touch a page and then reach over for Lauren hand so she would feel it too.

10) Lauren was a much happier baby than Alex. Lauren rarely fussed.

PAUSE

This past memorial day weekend I had the best weekend with Lauren. During the 3 day weekend I had only one nursing shift of coverage. During this 3 days I was with her 24/7. We went to the zoo where she loved the penguins and the splash park. in the I also took her to the splash park on Memorial day where she stood in the water for over 10 m ins laughing hysterically at the kids squealing around her. I finally took the twins on walks with their double stroller. Usually I would go right to be when Lauren’s nurse arrived and Lauren would stay up to play. This past weekend, I put her to bed each of her last 3 nights. It was a magical weekend for me.

PAUSE

People:

Lauren had many special people in her life who I would like to thank for being such a big part. These are amazing women who loved Lauren as much as I did. They were in this with me.

Marie-Marie was with Lauren 5 days a week. She would frequently come in early and stayed late just to be with her. I would call Marie Lauren’s “other mother”. Marie would get just as excited as I would when she learned to sit up or got to eat or started trach trials. Marie took great joy in picking out her clothes every morning. Marie was in this for Lauren.

Carla- Lauren would light up when she heard Carla’s voice. In fact just last week Carla came in at midnight and Lauren was sound asleep. When Lauren heard Carla’s voice she sprang to life and would not go back to sleep until Carla gave her enough attention. In fact, this was one of the rare temper tantrums Lauren had. She wanted Carla to Play even though it was 2am!

Mary- Mary was the nurse who had Lauren during her first night home. Mary was the nurse who started playing “horsie” with Lauren. Lauren would see Mary and just start throwing her body back to “just start the horse” to make sure Mary would play.

I feel sad for all the things I’m losing out on by Lauren’s death. I wanted more than anything to hear her laugh. I’m comforted by the fact she’s laughing now.

My father passed away about 11 years ago. He was the best dad a girl could have had. I know for a fact my father was saved and he was there to meet her. He is giving her the horsie rides and tipping her upside down. She is happy. And I can’t hardly wait to see her again. One day I will understand why Lauren was taken from me so soon. Until that time I will trust that God’s timing is perfect.