Saturday, October 5, 2013

Capture your grief Day 5

5. Memory: What memory do you have of your child that stands out for you the most. It may be a positive or negative memory. When you think of your child what is the first memory that comes to your mind?

So many memories, it's so hard to know which one stands out most for me. We had 4.5 months with Grace and spent so much time with her. I don't have just one memory that comes first, it just depends on the day. I do have a few that are much more prominent than others, so I will share those.

Many know, that my pregnancy with Grace was probably our biggest surprise and most unplanned baby. My pregnancy with her was filled with so much chaos, we moved 4 times, Adam left the Navy and began a new job, we had school issues with Tyler, and began homeschooling him, we bought a house. There was just so much else going on that we didn't (sadly) focus as much on her. I didn't feel like we'd prepared enough for her and I felt very overwhelmed at how I was going to handle all that we were dealing with, as well as a baby. I remember more or less, panicking when I realized I was in labor with her, thinking "oh my gosh, we are actually having another baby, this is real. I need more time, I'm not ready!"
My labor was so fast. It was so intense and painful because it was so fast. But one of my very very favorite memories will always be, when I looked down and her head was delivered and I saw my beautiful daughter for the first time, I saw her face and suddenly, every single thought above was gone. Replaced with overwhelming joy, and love. She wasn't even fully born yet and I was madly in love, and extremely ecstatic. It is such a good memory. My heart was so happy.

This memory is not so great. Even though the Dr explained to me what CDH was and what ECMO was when Grace was being transferred to Toledo to be prepared to be transferred to U of M, and her exact words were "if we do not get her to U of M, she will die" (not could, will) I didn't think she was really that sick, the whole time I was at Flower. I think I was really in shock. I had been told what was going on, but still didn't really get it I guess. I kinda thought we'd get to U of M, and either she'd have a small surgery, and we'd bring her home within a couple of days, or I also had crazy disillusions that we'd get there and they'd say " wow amazingly we were wrong! She's fine, go ahead and hold her and nurse her etc" Well. Obviously, that is not how the story goes.
We got to the hospital and parked, and went to the main lobby (which really, wasn't even close to the NICU) and got directions. They asked if I wanted a wheelchair and I declined. I had only given birth, I wasn't in need of a wheelchair to go see my baby..Uh yeah. Should have gotten the wheelchair, it turned out that from the main lobby, the NICU was quite far! I had to stop a few times to just rest because well, I had only given birth about 8 hours prior. So we get to the floor the NICU was on and we saw a door that said it was Holden NICU but it looked to us like it might be a back door, that we were supposed to go into a different door, we'd never been to a NICU so didn't know. We saw a woman at a desk up ahead and went to her and told her why we were there, and I'll never forget she said "um, youre in the wrong place. We only have healthy babies here" and the way she said it was so rude. It just hurt.
We went down the hall to the NICU, and we were led to our baby. We walked a short way down and entered a room, the absolute second we walked through that door, I realized that all of my expectations and thoughts of what was going on were completely wrong. I honestly felt my heart break. I never knew I could feel such pain. The tears immediately started just falling. Like rain.
Her nurse said "are you mom?" and I think I managed a nod. She said "come here and see your daughter" and made the dozens of dr's surrounding her, make room for us. To hold her hand, she allowed us to cradle our arms around her in her bed. I could not stop crying. I couldn't even talk. My heart was truly shattered.

And one of my absolute favorite memories will always be this..

Capture your grief Day 4. Legacy

4. Legacy: Do you believe your child left a legacy behind? It could be something very simple but meaningful

I came across this sign at Hobby Lobby a few weeks back ( still waiting to get the entryway painted so I can finally hang it!) and it is perfect. Absolutely perfect. This is what Grace left behind. I never could have imagined how much of a lesson in grace I was going to receive through her. Never in a million years did I think my baby daughter could teach me as much as she did. She may not be alive today, but for the rest of my life, I will try to live my life half as well as she did.
There are many many things I learned from her, that I am actively trying to apply to my life, to the way I raise my boys but she taught me the most about grace.
Because of her, I try so hard to "give grace" I teach my boys to "give grace". Even when we don't want to, because it is what the Lord does for us, and it is what our Grace did for everyone. She has taught me to truly see the beauty and good and love in everything. Because of my daughter, I can love my sons and my husband, my family and friends,better. Because of my daughter, I can actually truly praise God through the storms, I can do things I didn't think I could. I want to live my life like she did. Truly full of Grace.

Thursday, October 3, 2013

Capture Your Grief, Day 2. Identity.

I am participating in CarlyMarie's  "Capture your grief" project for the month of October. Each day this month, there will be a different topic pertaining to grieving the loss of a baby, or pregnancy. October is Pregnancy and Infant Loss awareness month.
Today's topic is
2. Identity: What is your child’s name? Why did you chose that name? What is the meaning of their name? If they were born, what were their birth details. What were their features? Who are they?

Grace. My daughter's name is Grace Fenella. Her middle name is Adam's Grandma. She is a beautiful woman, inside and out and without her, my dear husband wouldn't be the man he is today. He has always spoken and thought so highly of her, so it was no hesitation when he wished to name his first daughter after her. Grace.. well, the long version of her name can be found here. And the short version, is that when I was pregnant with her, I was being taught about God's beautiful grace so very often, and she was just such a representation of that for us, at that time. And to this day, she is. Grace, the name, the word is just beautiful.
Grace's birth was beautiful and  a whirlwind and full of chaos exactly like her life. It was shocking, exactly like her death. She was born at 12:07 am on her due date, after we had arrived at the hospital approximately a half hour or less, before. I know it was about 11:15 when we left for the hospital but I am not sure exactly when we arrived. Anyhow, I didn't think I was in labor and finally decided Adam could call his mom to come spend the night "just in case" and I guess that was probably the only smart thing we did that night. Finally after hours of Adam insisting I was in labor we decided to go in. As we drove through the neighborhood, I realized I might actually be in labor afterall and as we drove on 23, I realized I was REALLY in labor and started telling him to go faster because I started getting worried I wasn't going to make it. We got there finally and suddenly I was having a baby! The second she was handed to me and I looked down at her, I started panicking. She was looking at me, right at me, and I will never forget the look of panic in my newborn baby's eyes. Her mouth was wide open, and not a sound. Adam was preparing to cut her cord and I remember wanting to just yell at him to hurry up already, she wasn't ok! I remember saying. she's not ok! And being reassured she was, but as soon as the cord was cut, and she still didn't cry, but finally made a heartbreaking gurgle, I knew she was absolutely NOT Ok, and everyone else did too.
But what came next, I never expected. 3 words to forever change my family's life.
Congenital Diaphragmatic Hernia. How can something so horrendous even be real?
She left on an ambulance. Adam went with her. My sister in law stayed with me. After being somewhat stabilized, she then left the 2nd hospital on a helicopter. She was not even 8 hours old and was already on her 2nd transport. I never expected that day to go that way.

She was the most beautiful baby. She had dark hair, not a ton of it, but enough. She had beautiful, blue eyes. Chubby cheeks. She was gorgeous. 7 lb 4 oz. My smallest baby. My dainty girl. But oh, was she fierce. She was a survivor, I don't care what anyone says. She was strong. A fighter. She went through more than anyone I know, and she wasn't phased. She lived out her name. She was grace. She went through all the torture, she suffered. And yet, she still loved people. The very people who sometimes hurt her (because they had to give her a shot, draw blood etc) she smiled at. She demanded they hold her,as she layed her head on their chests (which was the absolute most amazing feeling ever)  Aside from the few seconds I held her at birth, Grace was not held in somebody's arms for over 6 weeks, but just occasionally then. She was passed two month old when she was finally held daily. In those two months that she wasn't held, we kept hoping and praying soon we could hold her, we believed that our touch, being held would help heal her. Surely, there is healing power in loving touch. After those two months, we held her for hours and hours. That little girl absolutely hated being put down! I will never forget what Adam told me, after holding her for hours and hours. He said that as he sat holding her, all that time we believed that our touch was healing her, that we were holding her for HER benefit but he realized that maybe, it was the other way around. Her touch, was healing us. She allowed us to benefit from being held. And he was right. The Lord's healing grace.  There is no other word for her, she was and is Amazing.