Tuesday, May 17, 2016

Hush Little Baby

Tonight, I did my normal nighttime routine. Put the kids to bed and flopped on the couch to scroll through my Facebook feed.

The first post was from a friend, another brain tumor patient's mom. It wasn't just any Facebook post, it was THE post. The post I've seen too many times in my news feed. The post that says hospice has been called in. And just like every other friend who has lost or is losing a child, she requests "hold your babies a little longer and tighter each night".

Immediately as I finished reading the post, my daughter began to cry. I went back to her room and asked "what's wrong?". Her response, like every night when she cries out, "I want you hold me". Most nights, I tell her that I can't hold her but I will sit in her room for a few minutes or I will sing her a song. Tonight was different. Tonight, I snatched her up and hugged her close.

We got in the rocking chair and as tears flooded my face, I tried to sing to her. The song I sang is the same one I sang every night when she was a baby - Hush Little Baby. When my son was first born, I started singing it to him and realized halfway through I didn't know the full song so after "if that looking glass gets broke", I added "mama's gonna buy you a Cherry Coke" and then made up ridiculous lyrics to end the song.

While I sang tonight, I thought of the lyrics - both the real ones and those I made up. It's all about a mama who will stop at nothing to make her child happy. It begins "Hush little baby, don't say a word, mama's gonna buy you a mocking bird..." and continues to offer more and more gifts if the previous doesn't work. As I was singing, I thought about my friend and her daughter. For the past few years, all she's been doing is jumping through hoops to try to save her. Trying different medicines, radiation, chemotherapy. Everything she could to help her baby.

When I finished the song, Tillery looked up at me and asked, "Why you crying?". I said, "Because I love you so much." She just looked back at me and said, "Oh, I love you so much."

I held her longer and hugged her tighter, just as my friend requested and then sang one last song - Turn Your Eyes Upon Jesus. It's the song we sing every night at bedtime and her little voice chimes in with me:

"Turn your eyes upon Jesus
Look full in His wonderful face
And the things of Earth
Will grow strangely dim
In the light of His glory and His grace."

Tonight, I am sad for my friend but I am so thankful for a loving God who has promised us an eternal life with Him. If we turn our eyes to Him, the things of this world will be dimmed and all we will see is His glory and His grace.

Hug your kids and teach them to turn their eyes to the One who can give them everything they need. The mocking bird. The diamond ring. The looking glass. Even the Cherry Coke.

For those who MUST know, here are my lyrics to Hush Little Baby. Enjoy!

Hush little baby, don't say a word, mama's gonna buy you a mocking bird.
If that mocking bird don't sing, mama's gonna buy you a diamond ring.
If that diamond ring turns brass, mama's gonna buy you a looking glass.
If that looking glass gets broke, mama's gonna buy you a Cherry Coke.
If that Cherry Coke goes flat, mama's gonna buy you a ball and bat.
If that ball and bat aren't good, mama's gonna buy one made of wood.
If that wood gets eaten by mites, mama's gonna buy you an airline flight.
If that airline flight gets booked, mama's gonna buy you some food that's cooked.
If that food is not very tasty, mama's gonna take it away very hasty.
And once that food is taken away, Til and Mommy will go and play.

Friday, May 6, 2016

Confessions of Super Mom

Once my child was diagnosed, everyone started commenting on how strong I am and what an amazing mother I am. Some days those compliments are encouraging but many others, they just feel like a lie.

I have often said that whatever your hardest mom thing is, it's still valid and it's still really hard. My hardest days might look harder to you but in reality, we all experience things on a relative scale to what we already know.

Before my daughter was diagnosed with a brain tumor, she had only had well child visits at the doctor. However, my son had pneumonia twice when he was about a year and a half old and both times resulted in ER trips. Those ER visits were a terrifying blur for me. Remembering holding him while they tried to start an IV, my heart still aches. It was the absolute hardest thing I had ever experienced. Ever.

Now, with my daughter, when we have to go to the ER, I take a shower before, pack a snack, and come in like I own the place. I walk to the desk and tell them that we need to go straight back to a room because she has a compromised immune system. When the nurse comes in, I give her the specifics on her port, the best supplies to use, and how to hold it and her to get it on the first stick. I ask for toys, drinks, snacks, whatever I want, as though I'm some A list celeb that can make crazy demands. I don't fear the hospital anymore because it's become a comfortable place.

I have taken my daughter to the operating room 12 times. I have slept on the blue vinyl pullout couch/bed more nights than I care to remember. I have held my daughter while someone put stitches in and when someone took them out. I have had to give her medicine and give her injections. I have been trained on how to maintain a PICC line, a port, and a feeding tube. I have been covered in vomit, blood, urine, poop, stomach contents, and cerebral spinal fluid.

But, it's all relative.

To those who think I'm super mom, to those who think I'm doing something you could never do, let me give you my list of limitations.

I cannot volunteer in my kid's class. There are too many kids, they are very loud, someone has a runny nose, and quite frankly, I'm scared.

I cannot do Pinterest. Any of it. Baking, crafting, decorating, none of it. When someone shares a Pinterest idea with me, I just shut down.

I cannot juggle multiple kids' schedules. Last summer my son took swim lessons 2 days a week and my husband had to take him because I could not remember that on top of my daughter's busy schedule. I don't know what I will do if they both decide to become active!

I cannot plan a birthday party. My son turns 5 Monday and his party is tomorrow. I verbally invited a few people this week and today I gathered some generic party stuff. Know what the theme is? Birthday party.

I cannot clean my house. I'm a stay at home mom who's house looks like a bachelor lives here.. I wish it wasn't so messy. I just don't know how to do it. Seriously, to clean, I just move the mess from one room to the other, or sometimes, from one counter to another.

I cannot make plans. I would love to have people over (the kind of people who overlook my messy house) but I just never invite them. I would love to have a girl's night out but I never think to plan one. I would love to do play dates, I just need someone else to plan it.

We all have the things that we just don't think we could ever do. Often, we just hang up on those things and we forget all the awesome things we can do. Come on ladies, we birthed these people! (Or adopted them, in which case you jumped through some crazy hoops and just getting fat for 9 months probably looks easy!) You keep them alive, daily! Some days, you don't think you will survive, and then you do. You survive so that you can do another unsurvivable day the very next day!

So, to the mom who has medically fragile kids, I salute you, Super Mom!
To the mom who is the Room Mom, I salute you, Super Mom!
To the mom who has more kids than hands, I salute you, Super Mom!
To the mom who has lost a child, I salute you, Super Mom!
To the mom who is still in pajamas, I salute you, Super Mom!
To the mom who reads "Hot dog, Hot dog, Hot diggity dog" and sings it, I salute you, Super Mom!
And, to all the moms who are surviving this thing called motherhood, I salute you, Super Moms!