Tuesday, November 8, 2011

Lilly Mae

We are going to have some trails ahead of us! We went to a Neonatal Follow-up and a neurologist took a look at Lilly. She told us that she does not only sees Hypoxic Ischemic Encephalopathy (HIE) but she also sees Cerebral Palsy (CP) in Lilly. We still do not know the extent of the CP, but she will have some struggles ahead of her. I just hope that I can be the best mom I can for her. I need to look into some programs, to see if I can get some more help. Cause having twins is hard enough. But I need help making sure Lilly is getting the therapy she needs, so she can have the best possible life. She is such a sweetheart, I just want the best for her. I am feeling overwhelmed, but I know I can do it. I see blessing that were once trails, to prepare me for Lilly. I am so glad I had those trails at the time. For example, when I retired from the army due to my back injury. Now I have great insurance for her, I will not have to worry about outrageous medical bills. I only pay $38 a month, plus $12 co-pays. How blessed we are for that. No deductibles! It was hard at the time, but a huge blessing now!
Something interesting, about 10 years ago, I told my mom that I have a feeling that I will need to know sign language for a child of mine. A lot of kids that have HIE or/and CP are non-verbal, especially in the beginning. So at least I am now fluent in ASL, so I can teach her, and we can communicate no matter if she can speak or not.
I know my little Lilly is a special spirit of our Heavenly Father! I am so grateful for her. I am grateful that she is alive, and hopefully happy. She does cry a lot, but hopefully she will start smiling more than crying soon.
Next week Logan and Lilly will be 4 months old! It has been a stressful but wonderful 4 months. I would not trade it in for the world.
A poem that I heard about 2 years ago, and again about a 7 months ago. Was given to us again. This is how I see things. I hope you enjoy the poem!

Welcome to Holland,

By Emily Perl Kingsley

When you're going to have a baby, it's like planning a fabulous vacation trip- to Italy. Your buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bages and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.

But everyone you know is bus coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever ever, ever go away.... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to
enjoy the very special, the very lovely things... about Holland.

I am lucky, I get to visit Holland and Italy! I get to travel the world and learn more about the world!


  1. Your babies are so sweet Emily- what a blessing they are! You are a wonderful mommy. :)

  2. This is absolutely beautiful!! I love your mother's heart. Thanks for sharing it with us.

  3. Emily,

    I have no doubt that you will give Lilly (and Logan) the care she deserves. I believe that everything happens for a reason. I believe that you and Lilly we brought together for a reason and that you knew in your heart of hearts that in the future you would have a child like Lilly who required special care. Hence, the reason you learned ASL.

    Here is the link to another blog that I think you would find helpful. Tripp doesn't have the same issues as Lilly, but I think its helpful in that both children require special care and maybe you could find peace and strength through Courtney's blog.


  4. Beautiful children! And I am so glad you have the attitude you do!

    Check out your school district's Early Intervention Program. I think for Nebo it's Kids Who Count. They are trained to work with children with various disabilities and can help you get what you need.