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.

The blog continues?

I've been struggeling with if I should continue this blog or not. I made this blog for Lauren. I made it because she had more ups and downs and I wanted friends and family to follow along. I still can't believe she's gone. I can't believe how quite this house is. Alex and I now spend very little time in the back of the house. It screams "Lauren's not here!" I've finally organized most of her things, equipment and supplies sending most of it with medical teams to other countries. I'm not quite sure now what to do with my life. My whole existence for the past almost 2 years was taking are of Lauren. I was ready for the marathon. I was in this. I was excited to barely work and be a mom to twins. I just don't understand why God would take her from me now. I don't think I'll ever understand. I do have a peace about it though. It makes me happy that she is with my dad. They are sitting on the back porch of heaven talking for hours. He is teaching her things and throwing her in the air. He was the greatest dad to a little girl. She deserves that. Alex is the easier child to take care of medically. Perhaps it's all a matter of perspective. My perspective has totally changed. It's like most people cannot imagine running 10 miles but in marathon training that was my short run. That was relaxtion and a recovery day. Alex is my short run. I cannot imagine how easy a full term baby would be for me...You mean the baby just eats? You don't have to put any monitors on? there's no medications? There's no trouble shooting machines?
I do have a heart for special needs children and maybe that is where all of this is leading me...

To a very special little girl...and one of my greatest blessings.

service

Grave side service for Lauren at zionsville cemetery this Sat at 10am. Lunch and continued memorial at my home to follow.