how can you pick yourself back up?

The past two years have been unbelievably hard. To deal with Lilas diagnosis and her eventual death has been, what I thought more than I can bear. Through it all we have always looked for some silver lining, for us it was the hope that we would be able to have more children. As I told some of you we were planing on starting the IVF process this month, now I don't know it that will be a possibility or if children are even in our future. You see we were on track to do the guarantee program, a program where you are guaranteed a child or your money back. I thought our clinic was on board, we had talked about it and not once was needing to qualify or high premiums mentioned. So as we went to pay our fee yesterday we were shocked to find that it would be triple what we thought!! Turns out that after blood work I may actually have fertility problems. That reason and that we are testing embryos is accounting for the price hike.
This is more than devastating for me. How can this happen? How, on top of everything else, could I have fertility problems and actually trying for a child through scientific means be so astronomical that we may not even be able to try?!!  It seems so unfair. I feel like this is just another huge blow that I don't know if I can recover from. We have prayed and prayed for the chance to have children, I thought that it was a reasonable goal. We were so close!  Now I don't know if it will ever be realized and then what will I do?! I will feel lost if I am not a mom. Its all I have ever wanted to do.
I guess why I am sharing is to ask for all of your prayers. I am sure that some of you continue to think of us in your prayers but if you could pray for us, for my little family I would really appreciate it. My faith has been shaken, if not shattered. I am trying so hard to pick myself up after yet another blow and I am finding that this feels like the straw that broke the camels back. I feel broken.

my superhero

Little Miss is sick again. She is so "gunked" up. We had a bad night where she couldn't breathe, we used our suction machine constantly but we couldn't get her to take one easy breath. Watching your child struggle to breathe and be completely helpless is my definition of hell on Earth. It scares me for what is to come...
Anyway, this morning as I got Lila up, spent ten plus minutes sticking a tube in her nose and mouth sucking out gunk. I turned to her and said, Lila your my hero kid, that's when she gave me this huge smile. It literally was between her gasping for breaths. She is incredible. When I feel down and start to throw a pity party I remind myself to try and act more like my two year old.

The Beez game

 Poppy holding hands with Lila

 Lily saving our spot on the grass

 It was fun to lay on the grass and enjoy the summer tradition of watching a ball game, eating treats and having fun with family.

 Kimball!!!! This guy just got baptized and I am kicking myself that we didn't get a picture of him in his suit. Lila was fussy and we somehow left the day without a pic. But we are so proud of this kid. He is such a sweetie and we love him so much. It was so crazy to be at his baptism because the first Kimball family event I went to was his blessing! Love you Kimball!

 Brady and Capree

 Remy

 Eli and Remy

 Joe and Marissa

 Jory and Kathy

 Jax and Poppy

 Jonah

Grandpa and Grandma!

Lifting Lila video

Lifting Lila

A few months ago I got a phone call from my old friend Wendy Richards. She and her husband said that they had been thinking of ways to help us  She had spent hours pouring over my blog and had started to create a foundation in Lila's name. They wanted to call it "Lifting Lila" She had posted research, stories and pictures of tulips, they had already talked to graphic designers, web designers and corporate sponsors. I was in shock. You can imagine how incredibly touched I was. Quinn and I had always talked about starting a foundation, about wanting to make something good come out of all the pain that we had gone and are going through but we had no idea how to start.
 Since that day Wendy, her husband Will, Quinn and I have spent hundreds of hours on the phone discussing what we want Lifting Lila to be. We decided that we wanted to help terminally ill children with rare conditions and their families. We wanted to do this in three ways, connect the families, facilitate research and alleviate financial burdens on the families struggling with a terminal illness.  It has been a long road already. Getting a non-profit up and running takes a lot, a lot of red tape. Thank goodness we have Will! But we are excited to get going. So while we are waiting for our 501c3 status (which means we can legally start to take donations) we are wanting to start the connecting families part of the organization. I am truly passionate about this part. Having moms like Nikki, Rachele, Nichole and others to talk to has been a literal life saver for me. We are looking for families that have kiddos with rare terminal illnesses who want to connect to other families and have a support system who can relate to what they are going through. If you know anyone who fits this description please tell them about Lifting Lila.
And please check us out.......

www.liftinglila.org

I just wanted to give a special thanks to Wendy and Will Richards for  creating Lifting Lila and making it possible. Especially to Will. He has spent thousands of hours on this. All the while finishing up MBA and law school, studying for the bar and being a husband and dad. You guys are awesome!  Thank you for helping us create a wonderful legacy for Lila and for letting her live on after she passes.

Thanks Nikki!!!!

Thank you to Nikki and Callahan who gave us a sitting at a great photography studio. Here are some of the pics. They aren't the greatest representation because they are just pictures of the pictures, but they turned out so beautifully. Thank you! You of all people know how important pictures are and we are so grateful to have these images.

little Survivior

I thought this was kinda funny, out of the tulips Wendy got us the yellow tulip is the tough little survivor. Kinda like my Lila. She is one tough cookie.