Lilah's Hope: March 2012

This has been on my heart for a LONG time. I am sure my words will not be perfect, but I feel led to share.

When you are pregnant we all pray for a "healthy" baby. We pray for ten fingers, ten toes, a heart, 2 kidneys, and a functioning brain. These are just a few of the things that we all hope and pray for when we are expecting. Lets' be honest. We all say, "I want a this or I want a that." Rarely, if ever, do you see a Facebook status that says, "God, I am grateful for this pregnancy. Whatever you have in store for my life and this baby, I will trust you. I will be at TOTAL peace with your choice for me and this child." No, we want to have what we consider perfection on this earth.

When the diagnosis comes, during pregnancy, at birth, months or years later there is a period of grief. The grief can range for months to years. Some people even grieve the loss of the child they never had for the life of the child. This grieving process is one I know all too well. I spent so much of the first year of Lilah's life grieving what I had lost. I was sad...a LOT. I was also mad, irritable, frustrated, and really to be honest...I was MAD at God. Heck, lets be really honest, I was mad at just about anyone and anything. I did my best to be "happy" but I was just overwhelmed. I felt so lonely. I tried talking.. daily, hourly, minute-by minute to my husband, friends, and family. But, no one really knew what to say...actually....nothing they said "helped." There was no fixing it, taking it away or managing it. It was real. The pain, the stress, the what-ifs. Oh, the sadness was gut-wrenching.

So many wanted to help. They did their best. I know that... now.

What I wish there was when Lilah was diagnosed was something my family could have read, people they could have talked to...anything to get them to "understand" more. See, I understand now that they WANTED and NEEDED to help. Some wanted to take the pain, the hurt, the emotions, the stress, all of it away.

The words just made me feel less understood. There wasn't a "support group" and my friends and family did not have a child like mine. The words that were spoken didn't feel genuine. They felt like words.

What I know now is that I felt isolated, alone, empty, and I was missing the "blessing" in my home ( THAT made it worse. When people would remind me that she was a blessing and they couldn't believe that I didn't see it. Great! Thanks. That made me feel like MORE of a failure at being her Mom)and I was not the nicest friend, daughter, wife, person to be around.

I was grieving.

The fake it til you make it wasn't working.

Here is what I wish I would have known, done, tried, etc in the EARLY days and months:

Christian Counseling. So that I could tell a person who wasn't personally involved how I really felt. I got counseling, and still do, but I waited so long. Family, if someone you know has a child who has been diagnosed with a disability, encourage them to seek counseling. Don't be mean or rude about it, or pushy. We have so many emotions to process. We need a Godly person to help us see the true gift and to be able to tell us that it is NORMAL to feel the pain and hurt. Also, if they say no. Understand that the denial is part of the pain and process too.
Asked for help. Specifically. And took it. I also would love to encourage family and friends to just show up and do.... something, anything. We Mamas want and need to do it all, but we NEED a break.
Get out of the house weekly. Even for an hour to walk and cry. Friends and family, LEARN the child so that the parent feels 100% comfortable with you taking care of them. My morning 5 Am walks were great, but it wasn't a time away to process as much as I needed.
Understand- I wish I could have seen past my own junk to understand that not everyone wanted, needed, or could see my view.
Laugh. Boy, do I wish I would have scheduled monthly girls nights to laugh until it hurt. Laughter is such great medicine. Or as quoted from my all time FAVORITE movie, "Laughter through tears is my favorite emotion."
Trusted God. Yes, I do realize that this one should have been first in the list, but I placed it last for a reason. This is what I learned to do last. Yep, as a christian this is SO backward. So, in my own thinking, I placed it here last for you to "get it." I remember hating hearing, "God only gives special children to special people." See, I didn't ask, nor did I want to be special. Nor did I ask for my child to be. BUT, her unique, amazing, dynamic, incredible, PERFECT little glorious self has MADE me a better woman. I SO wish I would have learned EARLY on that God really DOES know what is best. EVEN what we think would be the WORST thing to happen to us, really....come on...it really isn't. If I had gotten the counseling, help, breathing room, and TRUSTED God...I might have done things different.

But, I didn't do those things early on...so as God planned it....I am able to share my experiences with you and hopefully help.

To families:

If you are a part of a family that has just been given a gift from God, here is what I would like to share:

Listen. Without fixing it, wanting or needing to change it. LISTEN.
Be present. Show up and STAY around.
HUG. Allow a big fat hug to last for hours if need be. Allow your shirt to be covered in tears, and snot if need be. Just be there.
Don't give advice unless it is specifically asked for.
Understand that your family member is going through a tornado of emotions that have NOTHING to do with you. And if those emotions are about you, well...a heartfelt apology is needed :)

Today I have a new perspective. Do I always do this job as Lilah's Mama Bear perfectly? No way. There are moments that there is still a sting, but those stings get less and less intense. Yes, sometimes the evaluations hurt, or seeing other children your child's age do things your child doesn't yet, may never be able to, etc can hurt, but gratefully I know what to do with those emotions. Yes, I pray. I ask God for peace. I ask God to show up. Yes. I actually ask God to show up and tell me how much he loves me and my children. Guess what? If you ask God, He will. It may not be a big BOOM from the sky, but He will send something or someone that is specific JUST to you. Think about it...the perfect song, sunrise, sunset, friend, gift, letter, etc at JUST the right moment....yes...that is God...telling you He is there, He loves you SO much and HE has great things in store for you AND your child.

I am grateful for Lilah. I am grateful for each moment with her...even those that rip me apart. Lilah Hope is my gift. So grateful I see her as this today. I won't regret the moments I missed it. I will look ahead and know I can face each day knowing I have a beautiful blessing in my home who has changed the lives of more people than we could ever know.

With that...I have much Gratitude :)