ALS

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Month of May

My Goal this Month in Learning 2 Love & Be Connected:

The time has flown by and again, just like in April, I was unable to update my blog weekly. I had lofty goals for “Learning to Love” in May but the month turned into a goal of “just get our baby well”….

 

My Experience this Month:

It wasn’t until I had a baby that I came to understand my expanded capacity to love. From the moment I saw the positive pregnancy test to the first ultrasound, felt her first movement and saw her beautiful eyes I was filled with a love that I didn’t know was possible. And I also learned how quickly your life can be totally consumed by the well being of your baby. The entire journey has opened up my heart and mind in ways that I never knew was possible.

Other than Kaylee needing medication to control her acid reflux and projectile vomiting as a newborn, she has not been a baby prone to many illnesses that required antibiotics – we were pretty lucky. Then came the month of May. Kaylee had an on-going fever with a persistent cough and she just wasn’t herself. The first visit to the DR was unsettling because they thought it was just a virus going around. But just 3 days later we were back at the DR with a high fever (104) and now she had bronchitis and an ear infection. Double whammy! 1st round of antibiotics and a week and half of her not breathing well, not eating well and not sleeping unless she slept with Mommy – needless to say – none of us got much sleep. My husband, Tim, and I were taking days off work to stay with her on the high fever days and then after work tried our best to be patient through her fussiness. The days were long and the nights even longer.

After a week of meds, she was feeling better and back on the road to being herself again, hooray. Then just 2 weeks later, she was back to having a fever for a couple days and one night it was 105.1! That was scary for us since she had never been a high fever baby. We called the on call DR and after some Advil we were off to the bathroom for a cool bath – luckily her fever came down quickly. We were back at the DR the next day. They tested her for everything and nothing came up so they sent a urine sample to the lab just to be safe. (A urine test that I had been asking for a couple times at the DR since the odor was so bad for several weeks (even during her battle with bronchitis). Come to find out she had Pseudomonas – a very stubborn bacterial infection in her urine. My Dad contracted this same bacteria during his battle with ALS so I was very familiar with the dangers and challenges in fighting it off.

Chances are if you are a parent in this day and age, as soon your child’s DR tells you something like this, you go on the internet for more answers. I have concluded that the internet is a dangerous place for a worrisome Mom. Everything I was reading just made me worry about her more. Once again, we were back to antibiotics, fevers, not eating, diarrhea, not sleeping – the whole enchilada. We barely had time to recuperate from her last infection and here we were again.

And let me just say…the strain on your job performance and relationship with your spouse during something like this is so unexpected and requires true commitment. When you are getting 3 to 4 hours of sleep at best in 1 hour increments, trying to calm a screaming toddler, trying to function at work and still get all the other “crap” done around the house – losing your sanity surely comes to mind. If you didn’t have any issues with your spouse before…you certainly will when going through something like this. But somehow we made it through and after 10 days of antibiotic hell, she was given the clear – no more infection. Hooray! And after a week of going back to our sleep training techniques – we were finally on the road to getting 6 to 7 hours of sleep again. Hooray!

Our lives for the better part of 6 weeks was all consumed by nurturing Kaylee and trying our best to help her feel better as quickly as possible. It is a terrible feeling to witness your child going through an illness and there is very little you can do to help her besides holding her while she cries, watching Cinderella and Tangled all night long, letting her eat as many crackers as she wants since she wouldn’t eat anything else, telling her the medicine will help it not hurt, kicking  your husband to the couch since she wants to sleep with Mommy and there just isn’t enough room for a stretched out toddler and Daddy in the same bed…I really thought to myself…GEESH…I totally owe my Mother BIG TIME if this is what she put up with when I was a baby. (Yes, Mom…I finally get it).

Although, my goals for the month will have to wait for June…I still had moments where I practiced “love, love, love” – during the wee hours of the morning when I thought Kaylee would never fall asleep and my patience was running thin, I would take a deep breath and remind myself “I am so blessed”, “I love having this time with her to be a Mom and just love her”, “I will eventually get some sleep” and “this too shall pass” – having these thoughts playing in my mind truly helped me get through those long nights and tired days. And even as tired as I was, when she would finally fall asleep, I would still spend precious sleeping time staring at her precious restful face, watching her breath and thinking how lucky I am to be her Mommy!

So, the month of May is behind us and we venture on with a few more notches on our “being parents bedpost” and with a new found gratitude that all is well once again.

~ Hoping you find a way to stay connected ~

Love,

Victoria 🙂

 

 

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Week of March 11th

My Goal this Week in Learning to Love & Be Connected:
This week’s goal was to embrace the joyful memories of my father and allow myself to feel the sadness from remembering that this week is the 5th Anniversary of his passing. But also find a way to be happy and enjoy my birthday.
My Experience this Week:
My father passed away the night of March 14th five years ago, the night before my birthday. It always amazes me how much that day still affects me. Just when I think I will breeze through it, the morning comes with sadness and grief because I still miss him so much.

He survived for 3 weeks when the doctors gave him 1 to 2 at best. But that was my Dad. He always said “doctors don’t know anything, they’re just “practicing” medicine”. He always knew in his heart and truly believed in his own power to make things happen. So it didn’t surprise us at all that he lasted 3 weeks. Just like when he was diagnosed with ALS and was given 2 to 3 years to live…he knew he would put up one of the strongest fights ALS has ever seen. And he certainly did…more than 17 years in fact. I am still blown away by his courage, strength and faith through all the ups and downs.

I can still remember the last night I was with him in the hospital before we brought him home. It was just him and me…he had fallen asleep watching the history channel (one of his favorites besides old western movies) so I used the remote and changed the channel to something I wanted to watch. He immediately woke up, looked at me and said “Hey, I was watching that”. I said “no, you were sleeping”, to which he replied “I was just resting my eyes”…LOL…if I had a dime for every time I heard that I would be rich by now. We laughed and started talking about “stuff” – we always talked about everything going on in my life and he would give me advice – this night was no different. He always knew just what to say.

And one point, he looked at me and asked me what was wrong. I started tearing up and said “I’m not ready. There is still so much we need to do. What about my wedding?”. He held my hand and said “I’m sorry sweetie. Everything is going to be okay, you will be fine and I know I don’t have to worry about you. Don’t you worry…I will be there on your wedding day”. I said “it’s not fair” and started crying, holding his hand and resting my head on his arm while he went back to sleep. I sat there watching him breath for what seemed like hours and I started asking myself and God how I was ever going to deal with this. How was I going to have the strength to say good-bye, to take him home knowing this is the last time, to let our family and friends know what was happening, to witness his last breath, to have a funeral, to say a eulogy, to watch a burial, to live without him. How, how, how?

I always thought that after more than 17 years of preparing myself for that day it somehow would have been easier. But it wasn’t. Loss is loss and a broken heart is broken whether you knew it was coming or not.  Those last 3 weeks were some of the most blessed, fun, scary and depressing days of my life. To say I was close to my Dad is a huge understatement. He was always tough on me but he truly was my best friend in so many ways. And I will always be grateful!

So this week, in my year long journey of learning to love more deeply and getting more connected, I wanted to spend time in quiet moments just thinking about him and letting the feelings come – whatever they were. And in the quiet stillness I could feel him near me, and I could hear his voice saying “everything is going to be okay, I am always with you”. The message was so clear and so overwhelming I just cried. But not all the tears were for sadness, because I also felt a slight reassurance that he is not far – that he is watching over me and my family in ways he never could when he was on this earth. And when little miracles happen in my life I can’t help but wonder if he is helping the stars align for me to make them happen.

The second part of my goal was enjoying my birthday. For the 5th year now I have mourned my father on the 14th and then tried to wake up on the 15th in a joyous mood to celebrate my birthday. Each year it has been a little easier and somehow I am able to smile and enjoy my day. Perhaps a little help from him and the Holy Spirit! But I also think it’s because I try to focus on how much fun he must have had celebrating my birthday for so many years. Now that I have a child of my own, I totally get how happy that day is when you remember your little baby coming into the world. I also have amazing family and friends that try to make my birthday special and I am so, so blessed!

This year my birth-DAY turned into a birth-WEEKEND…I was able to spend time with almost all the people I love and care about starting from Friday to Sunday. I felt so LOVED and honored to have so many wonderful people in my life that wanted to spend time celebrating with me. It was a very special weekend and I felt my Dad enjoying it with us! I don’t know if this time of year will ever be “easy” for me and I have no idea if being without my Dad will ever get easier, but knowing that when I am still and quiet, I can connect with him anytime I need him, and in a small way it helps to ease the sadness. The love we shared keeps us connected…always…

I love you Dad and miss you!

🙂 Victoria