Sharing stories of fear, frustration, hope and acceptance

Archive for the ‘Hope’ Category

He’s Gone 7-2-2018

My child. My son. ADAM JOEY WEST. One week shy of his 9th birthday. He’s gone. He left to be with the Lord. I realize he wasn’t mine to keep for all my life. He did so good for as long as he could. He wasn’t in pain. He was at home with his mom, dad brother and nurse. I miss him so much, I can’t even describe it. It’s physically made me sick. Grief is a tricky experience. I was doing so good. In shock. Than the shock wore off and than I was busy. Busy busy. I got sick and now I physically don’t have energy to do anything. It’s been about 2 weeks of me trying to get better but I just can’t. I’m not sure how but my grief has to be a factor in this, I miss him so much. I don’t have much interest or energy. I don’t feel good and I’m just here waiting to feel better. Yes antibiotics and vitamins are on my daily regimen. I just want to hug him one more time. Smell him. Squeeze him. I want to look into his eyes and tell him how cute he is. 👼🏻

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The Calendar 

The weeks are long, like a blur. The days go by. The clock ticks louder and louder. I finally got Adam to the right doctor. I finally found out why he was so tired and struggled to even keep his eyes open. I finally had my answers, and it’s not good news. Adam was diagnosed in Summer of 2017 with Renal Dysplasia, as I understand it, it means his kidneys are too small. This can occur in children like Adam who are born premature. He now has stage 3 renal failure and in April of 2018 he was hospitalized and received a blood transfusion. This is when the clock began ticking.. Tick tock… Tick tock

The blood transfusion that should have lasted 120 days only lasted 2 weeks. So than the doctor asked us if we wanted to try shots of medication that would possibly cause pain in his bones or as it was being administered through the site. Shots would be 1-3 times a week. Pain? This is different from your average sting of a shot, we declined to give it. 

Since than Adam’s hematocrit and hemoglobin have declined significantly. Leaving him pale and puffy and so very sleepy. As the clock ticks the calendar doesn’t look the same. 

 

Dare to Believe

 Adam and his brother after his brother competes in a swim meet.   
Adam’s energy level is usually low for multiple medical and pharmaceutical reason. He has alert days now and again but some days (lately most days) it’s a battle for him to just sit with out getting tired. His eyelids are barely open and that’s him, awake. I’ve been noticing his alertness decreasing. He goes to Physical Therapy, Vision Therapy and Teacher Time and lately each therapist  has noticed a gradual decline. So being the mom I am I have taken him to all his doctors and pointed it out perhaps nearly yelled it out. Most don’t listen. In fact none do. I’ve recently changed all but one of Adam’s doctors, now hopefully we stand a better chance being listened to, maybe these next appointments will lead to answers. 

In the mean time the subject of a “Talker” has come up a few times. It’s essentially an eye gaze device that allows the person to look at a picture icon and the device will say the word. I was also given the contact info of a person that could evaluate Adam and let us know if he could meet the criteria to qualify for this device. Immediately my heart was torn. Memories of Adam’s old communication abilities came flooding back, Adam is Deaf and he used to sign (before his brain surgeries) so you’d think the thought of my son once again communicating would be a good thing but this time it wasn’t. 

Immediately my heart  ached and wispered, “please, not again, I just can’t take the thought of yet another evaluation telling me what he can’t do, Please not again, another wonderful piece of equipment sitting waiting for him to enjoy, Please don’t hope so big.” It nearly whimpered.

Every minute of everyday is a struggle for Adam to do the very minimum like keep his body temperature up, even lifting his eyelids is an exercise, breathing or eating is even challenging. So the thought of someone coming to our home to “evaluate” for the possibility of the use of a communication device is overwhelming, it makes me feel frustrated and hurt and exhausted  that I can’t help him with his energy levels. It makes me angry toward doctors because they SIMPLY DO NOT LISTEN. I feel angry with the people who say no he won’t ever… Or hurt towards loved ones who over look Adam or don’t give him attention or time just because he can’t “communicate”. It makes me wonder and dream how different things could be if he could tell me “happy” or “hurt” or “play” or “potty”. Than I ask myself well how can you give up? How in the world can you give up? NO ONE ELSE will be there for him if you give in, no one else will DARE TO BELIEVE.

So I ASK MYSELF the question: DO I DARE? Do I dare to let my heart break yet another way if this idea doesn’t work out? OR Do I dare to believe that some how Adam can stand a chance (a long shot chance) at communication once again. Some how I HAVE TO get over the negative and dig up the strength, some how I have to imagine against all the odds,  and I HAVE TO DARE TO BELIEVE.  Do you dare?

  
 

Days Turned into Years and than his was 7!

 It is unbelievable that Adam is 7 years old. They say time flies when you’re having fun. That’s Mia his dog.  

Sometimes life can get so stressful that taking a little breather is NOT an option. It just needs to be done.

This photo is at Santa Monica Pier, Ca after yet another out of town appointment. This time I squeezed what fun I could in.

  

This is Adam when he’s bright eyed and alert. Days like this are so much fun. He is just hanging with his mom and his snake 🙂

  Adam visits the Aquarium with his brother.  

Adams’s first bus ride.  Queen Mary, Frankie and Adam 2016  At home relaxing with Nana Mary, another bright and alert day. These days are always memorable and fun.  

   Adam celebrates turning 7 with his biggest fans, Nana Angie, Nana Mary and Nina Debbie!

   Sometimes in life all you need is LOVE, and Adam has plenty of that!
  

Adam and GREAT Grandpa, both like to recline and watch the crazy family fun.  
  

Just a good looking boy and his best nurse enjoying a Saturday afternoon.  

Our family favorite movie Dory. He watched 75% of it. (That’s a lot for him).
    

Bubbles are always his favorite.
   

The Tortoise and the Hare

  

  If having a child with special needs is really a race than I wonder… Am I the Tortoise? Or the Hare?

Somebody warned me once about pacing myself in this long race. They warned me that I would burn out, definitely more than the usual parenting circumstance. I heard the warning but didn’t listen. Even right now in this very moment I find myself in a dark, quiet room and I still can not sleep. I still can not shut off and relax. I’m not sure if this is a culmination of all the lack of sleep or if I should go see my doctor. It’s probably both, but there is just too much to do, between being Adam’s night nurse and mommy advocate during the day it’s getting hard to deny the importance of proper sleep and good nutrition. I’m one of those; the kind that go, go, go so I guess that makes me the Hare.

I have a plan: rehabilitate, restore, reroute. These are all words I associate with Adam and his recovery. I see the potential in him and though I have a team of support I can’t help but still feel a heavy sense of responsibility. It feels as if Adam is up against a clock of some kind and when time runs out that’s it. That’s how he will stay and all the people who didn’t believe in him would be right. I can see their smirks right now.  I can hear them say “well there’s just not enough progress”.. Dismissing ALL the progress he’s made. Progress like breath on his own or pee on his own. I found myself saying “slow and steady wins the race.” That’s how I’d describe Adam as the Tortoise because he could care less about what “they” think. He does things in his time, in his way.

I know that sometimes, maybe most times you can’t make others see or believe what you need them to. I know I’m hanging onto a promise that God shared with me, I know the potential Adam has and so I push, I advocate, I cheerlead him through it, fingers crossed his new physical therapist will too.

Perhaps Adam being the Tortoise and me being the Hare (THX SUSAN!) 🙂 means we are running this race together and in the end my Tortoise will win the race.

Batman’s Birthplace The NICU

Ever wonder where Batman was born? Well today we brought Adam back to the place it all started: The Neonatal Intensive Care Unit at the hospital he was delivered at. These ladies were some of Adam’s first cheerleaders even before I had a clue of what exactly we were in for. I can still remember the days after delivering Adam when the time for my discharge came up. I remember looking into his incubator at his tiny 2pound body asking God to give me the courage to leave him there. My body not only hurt from the delivery but it physically hurt to think that this precious time for mother and child bonding would not play out as planned. I knew I had to get myself better and heal from the c-section. I knew the time had come for me to leave my baby behind. Thankfully these nurses were there to help me and my husband feel secure in the thought that they would give little Batman great care and attention. They kept their word. In fact they spoiled him rotten. Even to this day he does not like to have a wet diaper, he will NOT pee and poo in the same diaper and he loves loves loves the ladies. Thank you to theses wonderful nurses who work as a team everyday to give little premie babies a fighting chance. Thank you to all NICU NURSES!

  

   

 

Who is this FLIRTY CLOWN

  
This is Adam during PT.  I’m so proud of him. I’m seeing him ever slowly coming out of his shell. I can’t wait to see him PROVE DOCTORS SO WRONG (the ones who didn’t believe in him). 

Go Adam Go!