Holiday at the ER

     We had a plan.  I had a plan.  We made the decision to make a trip our Christmas gift to our family.   We contacted  our first travel agent.  We chose San Antonio for our little family get away.  The river walk over the holidays and some sea animals are what we have in order.  We paid for the hotel rooms and tickets to Seaworld, got scripts early, doctor appointments completed, supplies delivered, and cars washed. I’ve prayed for Grandma Linda’s ongoing wound care to behave.  Shared possible itinerary with fam and embraced the excitement. 

      Due to the trip, we didn’t buy gifts for each other.  We were possibly going to pick something out while on the trip.  We were to have a little meal with Grandma for Christmas Eve, but she wasn’t feeling well possibly after adjustments to antibiotics. So, we didn’t Christmas Eve.  For Christmas we were going to meet Mariah and Derrick for a lovely meal. Reservations cancelled.  Didn’t think this minimal gifting part through very well. 

      Yesterday evening, I flushed her tube in preparation for her shower and witnessed the icky mess on her belly.  Yep.  Her tube is dislodged.   I taped the bejesus out of it, bathed the kid and started the necessary call to our doc on Christmas Eve.  Taped the tube further and put the kid to bed.  

      Libby and I checked into the ER Christmas morning at 8:15.   Remember how we were given the go ahead to have standing orders for feeding tube replacement?   Well Rachael took Libby to her primary care doctor Monday, so I could go to the Wound Care doc with Linda at the same time. The standing orders were requested this Monday.  It’s Wednesday, a holiday, so of course the orders aren’t in and approved yet.  Let the waiting begin.  

      So here we sit. Christmas morning at the ER. Trying not to embrace the guilt of taking other people from their family time today.  Trying not to focus on ugly negativity that could envelop me.  Trying not to think about the possible loss of this much needed trip. Trying not to be sad that it’s Christmas and there are no gifts for this sweet baby of mine.   Trying not to admit that I’ve messed this holiday up with these plans of mine.  Silly little plans.  

        We’re here waiting for the on-call radiologist to arrive, interrupting their precious Christmas Day.  Waiting to be able to give my kid the food and meds she’s having to miss just in case they end up having  to use anesthesia.  Level of suck-age pretty high.  And if I’m to be honest, this is all just so sad.  So sad.   Holidays are hard.   This one is so sad.  

         Right about now I could believe the universe is against us.  That continuing to fight for this damn tube isn’t worth it.   (She’s holding her weight and up two pounds as of check in at Cook Children’s on December 11.)  I really think that giving up is the easiest thing.  Good thing it’s not an option.  

        It’s times like this when I feel like banging my head and heart against the universal wall that I know the light is coming.  The light always comes to remind me of the immense love that surrounds me at all times.   It’s times like these that I know that even though right now our circumstances are so ick-worthy, I know that my God has a plan for me.   Plan for us.  Plan for this moment.  For this day.  For this precious life I’m sharing.   I just have to acknowledge the sad and turn on the Light.   Turn on the lights! 

Pic from Monday evening.   

Now I’m going to pray, cross my fingers and toes and  knock on wood to get the luck/blessings needed to get this tube in, Linda well enough, and everyone on the road tomorrow morning.  

Fa la la la la ......Merry Holidays to all of you.   And if you’re struggling with the Sad, I’ll help turn back on that Light.  Much love

ileana 

To the Bride

      The greatest thing happened: Mariah, my beloved oldest, married the neatest guy.   Driven by peace, love and finally balance, she walked confidently into the engagement and then down the aisle.  She knew that Derrick was the one, and he knew that she was his Love.  After this beautifully planned ceremony, I found myself filled with gratitude for the immense growth that brought us to this day.    

    It was Mariah and I against the world for the first five years of her life.   She was my Junior and wore all the confidence that I lacked.  A force like a tornado who could clear the room with her smiling personality.  She was the first person I talked to after finding out that Liberty was a possibility.  After being reassured that I wouldn’t be able to get pregnant several times, this was revelatory.  Mariah was by side as Liberty came into this world.  (My mom was there as well.)   

      I was and am amazed at the connection these girls have. It was during Mariah’s senior year that we saw that Liberty’s speech, handwriting and eating habits change.   We thought that anxiety over her sister leaving for college and all the changes were causing Liberty to stress in major ways.  Then within the first twelve weeks of Liberty’s 7th grade year and Mariah’s first year of college we were heading to our first children’s hospital.   

       Liberty’s health didn’t improve and Mariah, ever the loving and amazing sister, wanted to schedule her classes around therapy and other appointments.  I prayed and cried a lot then moved my beloved Mariah into the dorms. This was a very hard step to take.  In my mind I had to try to protect Mariah from what I feared was ahead. She had to have a chance at a life outside of her sister’s diminishing health. 

        Over time, it felt like Mariah and I were severed. I struggled to hang on to Libby, to work, to family, to my love and to my life.  I struggled and felt as if I had lost my oldest.  My fear of losing her fostered an environment where Mariah wanted to prove to me that she was okay.   She lied. And I believed her and lied to myself.  Her sister went from vibrant, brilliant and funny to losing motor skills daily- how could she be okay.  Now I know that Mariah was angry. And she had a right to be. She stayed angry for many years. She was angry at so much including God. Now I know that was a reasonable reaction.   

     Now I know that I failed Mariah. I failed to support Mariah in ways that she needed and for that I am terribly sorry. I failed.  Hope failed her.  She drifted and landed, drifted and landed in an almost Gypsy-like manner for years. 

        Now I know that she was grieving. She lost the sister she had, yet her sister was still here- needing her.   That’s hard.  And terrible. Completely.  Unfair with a heavy dose of sucks. 

         In Mariah’s own words: “watching Libby get sick and watching what it did to our family killed me. For a long time I ran. I ran from our family. I ran from joy. I ran from God, and I ran from Libby. I was so mad at the fact that I got to live and experience my life, that I subconsciously worked to destroy it. I lied. I hated. I hurt people.”  She was in so much pain. 

          Over more time, I found my way  to Mariah, or she found me.   It came as the blessed guise of me needing help watching Libby a couple days a week so I could work after Liberty’s graduation from high school. Since then, I have been able to see Mariah every week and she gets to interact and take care of her sister.  Watching them together is awe inspiring.  Mariah is able to get responses from her sister that I’ll never get even though Libby is now down to one syllable responses now. They communicate in a way I don’t understand- always have. 

      Mariah has continued to grow in a way that is smart, funny, hard working and most of all caring.  I describe Mariah today as my Lion’s mane of a daughter who says the things I can’t and handles her life in amazing ways.   She is the best parts of me and so much more.  Her strength is a gift and her faith is what I have prayed for so many times.   I am eternally grateful that she found her way back to faith. She is half of the amazing part of me and all of a blessed God.       As Mariah began planning this wedding she commented that this wedding was for both she and Liberty.  Her desire was for Liberty to feel the love that both she and Derrick have for her.  This is something I couldn’t even think about.  Amongst all the losses with Liberty is this fact: she will never be married or even know that kind of love.   Damn. Yet because of a sister’s strength, Liberty was included and is completely enamored with her now brother, Derrick. 

They can’t be serious around each other.   

     And this is her mom’s story of how she walked down the aisle to marry this wonderful man, Derrick Neusch, finally balanced with him. 

      After all of this, how wonderful it is to know that this woman believes in love.  And hope. And a tomorrow that is blessed. I am grateful and humbled to a be a part of Mariah’s life.  And can’t wait to see how she and Derrick change their world. Mariah says that she “found another beautiful and loving family to add to our own.”  May their union be blessed and their love a blessing to both families who are now joined.  My love, I am and always will proud to be your mother.   Grab his hand and go kick the world’s ass!   

**None of the wedding pictures are professional; those photos are on their way. 

**Mariah gave her consent over this writing and she will be the final editor.