Mortality is temporary

Paraphrasing James E Talmage:

The Eternal Father foresaw that death would enter the world, and that the possession of bodies by His children would be of but brief individual duration. The power of death was to be overcome, so that, though men would of necessity die, they would live anew, their spirits clothed with immortalized bodies over which death could not again prevail. Let not ignorance and thoughtlessness lead us into the error of assuming that the Fathers foreknowledge as to what WOULD BE, under given conditions (mortality), determined that such MUST BE. It was not His design that the souls of mankind be lost; on the contrary it was and is His work and His glory, "to bring to pass the immortality and eternal life of man."

What does this mean to me? It means, and I believe, mortality is a temporary condition. It is not what MUST be forever. Just because we are separated by death in mortality does not mean it will always be that way.

Bucketlist item number one :-)

Sitting on the schoolhouse steps in Grafton where Mom and Dad got married ;-) Also on her list is seeing where Mom and Dad got sealed :-)

 

She Smiles!

Genetic testing came back last week and Sophia definitely has pontocerabellar hypoplasia type 2A. Smiling is not something we could expect. "There is no motor or mental development". That's what the NORD says. But she smiles! I can tell when one is coming. She gets in this mood, usually when she first wakes up for the day or from a nap. She's alert, focusing her eyes, and seems pleased. Then, sometimes, she'll smile. I saw the first few, and even had a couple witnesses who assured me I wasn't just being hopeful ;-) Then Jonah saw 2 big ones in a row :-) Then this morning Jason kissed her on the mouth and she smiled up at him! He LIT UP and asked if I saw it, which I did :-) Then this afternoon, she was in her smiling mood, and Sarah played peekaboo with her. I kid you not, she smiled 5 times! LOVE this day!!!

These aren't pictures of her actually smiling, but this first picture is however her "smiling mood".

It must have been a good day ;-)

   I like to listen to the radio. When I listen in the car I sing along. When I listen at home I dance in the kitchen ;-)
   I've mentioned before there were two other times in my life that I found I was crying myself to sleep and wondering why. On the second occasion I was sad for a long time. It didn't feel out of the ordinary to be sad because something sad had happened. So I called it "situational depression".  During this time the radio was still on, but I wasn't dancing or singing.
   Then one day, I distinctly remember, I was driving down the hill. I realized I was singing along :-) It made me happy... that I could be happy again. I expect this trial will be similar, just a lot more intense and it will probably take a lot longer.
   But while Sophia is alive this trial is different than the others. There are emotions that I experience, that could not be more different from each other. On the one hand I'm losing her and so I deal with those emotions EVERY DAY. I'm sad, and scared. Okay lets be serious, I'm terrified.
   On the other hand I still had a baby and brought her home. There are wonderful emotions. It feels so good to have a baby in the house again. She's SO pretty, and fun to be around. I still get to take care of her. Feed her my milk. Have skin to skin time. Dress her up. Bathe her. Smell her. Put bows in her hair. Take a million adorable pictures. There are happy emotions. Even joyful ones.
   I guess what I'm saying is, I'm on a roller coaster, but it isn't ALL bad. Not yet. I realized this when I caught myself dancing in the kitchen yesterday ;-)

Paralysis

This is a journal entry from when Sophia was still in the NICU. It was a very trying time for me. It took all the bravery I could muster. I hope this blog never seems melodramatic. My hope in sharing things like this is to shed light on my experience and to be real about my progress and the things that get me through (on this day it was simply learning to put one foot in front of the other).
 
Day 6 after my daughter's terminal diagnosis:

Sometimes in a dark wave of depression and sadness I feel incapable of anything. I feel incapable of operating a car. Or picking up after myself. I feel incapable of making a call about the insurance. I realized just now that feeling incapable and being incapable are different things. I may feel incapable of driving a car but I am NOT. I may just have to put one foot in front of the other, force my physical body to sit down, apply the break, and turn the key.

Things I want to remember

Dear Sophia,
Some things I don't want to forget about you...
Your stunning blue eyes
Your red hair and fiery eyebrow shape
Your dainty heels
Your porcelain skin
Your double chin
The way your voice sounds
Your little snort
Your Daddy's mouth, just like Max
I love you little Sophie. I may not have gotten everything I wanted. But one thing I did get is a little girl with red hair. I've SO always wanted that ;-)
Love, Mommy

Going to the Doctor

When I first learned of my daughters terminal diagnosis I thought of how heartbroken I was. As I thought of her short life I pictured what it would be like to take her home and lose her. Here's something I didn't picture. Going to the doctor(s)! We go a lot.  She needs it. I need it too. We check in often, with lots of different people. I don't get much done those mornings. And Max is usually really annoying during the drive. But I'll tell you what I DO love about going to the doctor. We talk about her LIFE.

                            2 days old

After the Trial of Faith

Went to church with my husband for the first time in 2 months today! I was reminded of many things that are comforting to me in this time. I know that my precious daughter existed before she came to us. I also have a testimony that she will continue to exist when she leaves us here. I recognize that not everyone who has experienced loss knows this like I do. I am so grateful for this comfort and I do not take it for granted.

I have experienced great loss in my life a couple of times. Although never this great. Twice I have experienced loss that had me questioning why. I have cried myself to sleep countless times wondering why I had to lose precious things in my life. In my experience Heavenly Father shows me the answers in time. And I have, both times, eventually understood why things had to be the way they were. I believe that this time will be no different. I don't understand this right now. I don't know why we can't raise our daughter. I don't know why she won't ever sit up, or laugh, crawl or walk or run into her daddy's arms. I believe that the answers will again come in time. I trust Heavenly Father. He can see the big picture of our lives. I trust that He has a bigger plan here. I would really like to know what it is. And I trust that one day I will. 

Also, in my experience, I have always been blessed greater than my trials. But not until after my trial of faith. I can't imagine what blessing in this life could be greater than this trial. But I do believe that there could be some joy in the next life, big enough to will swallow up this pain.

What she deserves

Journal entry from day 2 after my daughter's terminal diagnosis:

I have to take every day assuming the best. I have to assume every day that she's going to live today. So that I can live in the moment with her and have a normal family existence. Because she deserves that. She deserves to have happy siblings and a happy mom and a happy dad. She deserves holidays and she deserves family meals and scripture study. She deserves for us to take her home and show her our beautiful backyard and the sunlight (our backyard turns pink every night). And every day that she's here with us I am going to give her what she deserves.


Pictures from her first few days of life...

 

Bucketlist/Jonah's Birthday

I want to show Sophia everything I love about this earth. So I've started a bucketlist. An idea I got from a friend of mine who's been where I am. I've begun the list with things from my childhood that I want all of my kids to see and experience. I hope to have Sophia join in on as many of them as we can. Starting this summer :-)

Happy Birthday to our second oldest son Jonah. For dinner he chose steak on the grill, mac and cheese with bacon, and German chocolate cake.  We now have two adult children. huh.