May 23, 2015

Finding Strength

Things started off well last week. We had a great time at Alexa's Spring Concert. She looked beautiful and all the kids were the cutest sight and sound to behold. We were so proud and happy for this moment we got to share and we all went out for pizza afterwards to celebrate!

The next day things took an unexpected turn. I was trying to get my ‘head in the game’ sort of speak for surgery, preparing myself mentally and emotionally to stay strong and positive for the surgery and for my family.  The day started off well going to Alexa's school for an art walk to enjoy some of the children's creations. When we returned home around lunch time, Lexi and Luke were happily playing when suddenly Luke my 3 year old had this super scary episode. He became pale, started grabbing his head saying it hurt really bad, looked suddenly weak, like he was going to pass out and said he couldn’t breathe. Now I am a not a new kid on the block when it comes to kids illnesses, being a mommy of 4 I’ve seen many things come and go, yet I’d never seen this. I felt weak at my knees and rushed him to the children’s ER as he threw up several times. I tried talking to him on the way there to keep him alert. When we finally arrived as I opened the door and tried to get him out, he told me “mommy don’t carry me” and I asked “why not?’ he said “I don’t want to get you dirty”. It broke my heart that he was even thinking that and he was being so thoughtful in this situation. But I said “please don’t worry about that, I love you and I don’t care to get dirty”. Long story he puked tons, first food, then phlegm, then something that looked like green Kool-Aid (maybe bile) and finally nothing although he was still nauseous. Docs x-rayed his tummy and noticed his liver was “a little full” so then they ordered an ultrasound which revealed his liver was enlarged. As I was sitting there I became so broken, worrying about what this meant and how I would deal with him being sick and Alexa’s upcoming surgery. As I sat around waiting for results, getting him hydrated and watching Toy Story, I smiled at him through my tears and prayed. Having to hold him down for IV placement and being wheel chaired from here to there for tests I was quickly thrust into the realities of the hospital world. In the midst of all this, I was also worried about my car which I had hurriedly parked in the fire lane as we arrived many hours ago and to top things off I had lost my keys. I was sure by this point my car was either ticketed, towed or stolen. Thankfully my sweet brother stopped on his way out of work and was able to find my keys and car. The ER Physician came back to tell me not to worry too much as his labs looked good but they still referred us to see hepatologist soon, before Alexa’s surgery, to find out more of what is going on.

As a mom who has had the proverbial shoe drop, you always live in fear or if not in fear at least always with the realization that your normal can change in an instant.  To say the least my heart was broken and my spirit crushed.  I was weak, worried and depressed.  I wondered how I would find the strength to get through.  All I wanted to do was lay in bed with my babies and cuddle them forever.  I prayed and prayed and prayed some more.  As soon as I woke up I prayed.  When I couldn’t fall asleep I prayed.  As I struggled to take care of my family’s daily needs and house I prayed.  I decided to look up information on our JW.Org online library about dealing with emotional distress.  I read many encouraging stories of people who have dealt with severe trials and it gave me hope.  I read the bible accounts of Jesus and the story of Job, who although suffering continued to say “Let the name of Jehovah continue to be praised”. (Job 1:21) And let me tell you that although I was worried about how and if or when I would recover from this major setback I am happy to say I have.  As we have faced many hardships in the past, I know that God is always there but when you are in the middle of the storm you doubt.   Slowly I regained my perspective and a positive can do but only through God’s strength attitude.   I could feel the peace of God spoken about in the bible calm and comfort my troubled heart.   I can attest to the fact that God’s word is true – He gave me peace and serenity when I most needed it.  I also continue to ask daily for wisdom, guidance, patience, courage, strength, insight, endurance, more faith and for his name to continue to be praised through our life.  I am so thankful as well for the many thoughts and prayers and even dinner extended on our behalf from family and dear friends.  And thankful for my wonderful husband who listens and encourages me as well. 

We still have a very big battle to face with Alexa and we are still waiting to find out what the hepatalogist has to say about Luke’s liver, although I am hopeful it is nothing of serious concern.   Meanwhile, the nerves still creep up on me here and there and my stomach gets a sudden sinking feeling when I think too much about tomorrow.  But I am trying to apply Jesus advice to take one day at time, so when these feelings return I just keep praying.  I know that no matter what, our God will get us through as he has done time and time again.  But for now I am so thankful to  experience God’s tender mercy and care and the truthfulness of the words found in Psalms 34:18 ~  Jehovah is close to the brokenhearted; He saves those who are crushed in spirit.”  And that was definitely me last week but now I have been “given power beyond was it normal” (2 Corinthians 4:7) “for when I am weak I am made powerful. “ (2 Corinthians 12:10)



May 5, 2015

Just 35 more days

Amazing , that it's been a wonderful almost three years since my last blog post!  We have been busy living our lives and are so thankful that Alexa has been doing so remarkably well!  It's been over 5 years since her last surgery.  

Looking back we had the opportunity to go on many family trips, that included trips to the beach, Legoland, SeaWorld, to San Francisco, the Monterrey Bay Aquarium, Santa Cruz boardwalk, to see the magestic California Redwood Forrest, to the Grand Canyon, Dallas, Austin and San Antonio, Texas and to Mexico and we made many many truly wonderful memories along the way.  Alexa is nearly done with her first year of school as a kinder gardener. She has learned so much and enjoyed the process.  She now knows how to read, how to add and subtract, and many delightful things about about our world. What she is probably most proud of though beside reading is learning how to snap her fingers, how to whistle and how to skate, those all took some extra practice and persistence.  She had a very fun and memorable graduations party and has lost and gained many new teeth in the last the few years.  She has grown to be a beautiful, inquisitive, silly, funny, happy, intelligent, caring, loving, and compassionate young lady.  Watching Alexa and each of my children grow is like watching in awe the blossoming petals of a sweet beautiful rose.  And for each day with them I am forever grateful.

My heart is full and yet it aches from the knowledge that in just 35 short days, it will be time for us to hand her over our precious child and watch her be wheeled away for the 4th time for open heart surgery.   Really it is more than any child or parent should ever have to bare.

This time it is different though because not only must I deal with my own emotions, which are all over the place right now but for the first time I really need to help her cope with hers.  It will be the first time she will truly know and possibly remember this event in her life.  And I am going to do my best to lower the harsh bitterness of it all and turn it into the most positive experience it could be.

Mean time, as I watch her play happily with her little brother, oblivious to the struggle that awaits her I can't help but feel like a traitor to her and my motherly instinct.  Motherhood is suppose to be about love, devotion and protection of your children and yet this (CHD) makes you go against that basic instinct.  Instead of fleeing far away from the danger you must confront it, look it straight in the eye and walk towards it.  You must face it with courage, faith and pure, raw and unembellished LOVE.  

I hate walking this road but know that we are not alone and have received many blessings along the way.  I am thankful for all the support and prayers of family and friends as we travel this path.

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