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The Journey Through Another’s Eyes

We just returned from Colorado. Abigail’s 7th procedure is now behind us and the 8th is quickly approaching. Due to me being in the hospital a few days before leaving for Denver, a dear friend of mine bought a plane ticket and joined Abi and I on our journey. Heather Olson was a Godsend. Being sick and having some “bumps” in the road showed me very quickly that I could not have made this trip alone. This morning, I logged onto Facebook and had a post from Heather on my wall. I was in tears. Reading about our recent trip to Denver and seeing things through her eyes was overwhelming. I am in this journey and not stepping out of it. I just “do” when I am there. I don’t believe I am strong. I believe that I am simply doing what any mother of a sick child would do in this situation. I am pasting Heather’s post below for you all to read. It is lengthy, but worth every second. Thank you, Heather, for being such an amazing friend to me and my family. And thank you for loving my sweet baby <3

 

To all the Family, Friends, Supporters, Followers and People who keep Abigail in your prayers…
This may be a minute longer than you like and may make you a little uncomfortable as you always see Abigail smiling and hear wonderful updates about her progress. Please don’t stop reading now. I am not a Debbie Downer but I feel the need to share my experience with Jessica and Abigail on this latest trip to Colorado for Abigail’s surgery. Her 7th surgery.
I met Jessica and her family at Outback over a year ago. Abigail’s big gold brown eyes and her beautiful smile stole my attention and my heart at first glance. I complimented her parents on her well-behaved and happy attitude and proceeded to give them my card. In turn they gave me a bracelet right off of their arms. Of course I was curious and looked up her story.
I was touched by how POSITIVE this family stays regardless of the hardship of Abi’s disease. To just know that your child has an incurable disease is enough to break any parent but they have to travel by bus, plane, car, rentals, hotels and states away to have the lifesaving treatment for Abigail. YES! I SAID LIFESAVING!
Abigail may look like the picture of health but she could very easily have her life in danger with the tumors (any of the 9 from the neck up) if they decide to grow or go untreated. They can blind her, cut off her airway, keep her from being able to eat and speak, could prohibit proper tooth formation and are like having brain-freeze in every spot at any moment. Ultimately, if not treated it could be fatal. I do not say this to upset anyone but I saw first hand that the public and those unaware of how severe Abi is look at her and say “She doesn’t look sick!”. Well it saddens me to say she is. As happy, well cared for, loved, doted over, supported, etc… All the love in the world will not compensate for the treatment that is a necessity. It makes for a very loved, happy, wonderfully beautiful, charismatic little girl but she is still ill. With no doubt in my mind at any given moment any of her family would take this disease upon themselves for her but it doesn’t work like that. They do what they can with gusto by loving, nurturing, caring, and supporting their little one to the ends of every single moment in her journey. (Personally and just my opinion but God knew Abi’s journey before we did and he chose her parents, siblings and grandparents personally and carefully just for her )

Soooo… starting Thursday June 26th, 2014 we started the journey to Colorado for Abi. Jessica, Abigail, Alayna and Poppi (Jerry Carter) picked me up and we headed to the airport. Did I mention this was at 5:00 am? We met up with Grandma and Alayna was excited to stay with her and then Grandpa/Daddy took us to the airport. If I had a picture of us we look like a couple of pack mules pushing Abi. Have you traveled with a two year old lately? We each had a backpack (all three of us), two carry on bags and a check in large luggage. This doesn’t include the stroller that is vital, “Lovey” monkey (her favorite and absolute mandatory toy), her binki and a juice cup. Yes we are women and need our stuff 
We check in, check the one large luggage because it is $25 a bag so we carry the rest to cut cost. We then go through security and we have to disrobe our belts, shoes, laptop, phones, stroller, etc… Of course my camera bag and Abi’s toys get pulled. The entire while we are having to make sure a two year old is safe and not bumped, pushed, or runs off. And the very cheery attitudes of the workers at the airport always are encouraging (oozing with sarcasm). Finally gather our belongings and we make it to the gate, get Abigail something to eat and let her stretch her legs. We need coffee. Abi is still smiling and being a very good girl.
We finally board the plane to be delayed by a strong storm and sat on the runway in the 17th position for an hour and twenty minutes. The flight then went well and Abi was energetic and did not sleep one wink for the five hours in the plane  Then when landing we pack ourselves back up and catch a bus to the rental car place. Then bus driver thought he was a nascar driver with a heavy braking foot and the car rental lady had no idea what she was doing. I attempted to entertain Abi while Mommy handled business. We had to advise the rental place that we needed a car seat which was put together wrong and Jessica had to reconfigure. Then the workers had no idea what the latches were that we needed to properly secure the seat. Jess again was super mom and was able to find the latches and get us on the road. We had a huge suitcase, three backpacks, two carry-ons, a stroller, a car seat, two adults and Abi… all in a Kia Soul. Yea we play Tetris.
Next leg of the journey was peak traffic hour in Denver to arrive at a hotel that was not really up to par. They promised to accommodate and provide a crib or pack-n-play and did not. They would not even provide extra pillows and blankets to make a pallet. The extreme rudeness like they were being bothered led us to have to change hotels that actually had accommodations’ that suited Abigail’s needs. This may seem extreme but a little tiny two year old that is groggy from anesthesia, pain meds and in pain cant stay on a bed for the possibility that she may fall after we fall asleep. Luckily the next hotel was nicer and provided what they advertised. By the time we finally were settled it was 9pm and had to get up at 3 the next day.
DAY OF SURGERY. Jessica woke up at 3 to prepare and get ready. She let me sleep until 4 because I begged. I woke, showered, dressed and complained about coffee. We got Abi up and made sure she was clean, pampered, juiced and packed. “Lovey” Monkey in tow. To the hospital we go. Arriving at 4:45 we were the ONLY people at the admissions and surgery waiting area. The lights were not even on yet! We were greeted shortly and Jessica handled paperwork and then the requested task of a “bow” by Abigail. She had already cried by this point ONLY WHEN the desk worker to put her identifying bracelet on her ankle approached her. This is when Abigail realized that she was going to have surgery once again. It broke her Momma’s heart and it was painful to watch both of them be upset, anxious, then stoic and brave. We made our way to the imaging/surgery waiting area and again the lights were not even fully on. We had to tell Abigail about 50 times that she couldn’t have juice or food. That again is hard to deny a 2 year old the simple request of morning juice and watch that pretty little face of confusion. We told her that the doctor had the juice and she would get it soon. I let her hold my phone and watch Mickey Mouse to take her mind to a happier place. Jessica started the much needed and requested task of updated family, friends, FB, Supporters, Followers and especially Daddy which had to stay home and work to support the ever growing cost.
Abigail was finally taken back at 7:30ish and anesthesia came in along with a PA and nurses. As soon as Abigail saw the scrubs she again realized what was about to happen and the tears and crying began. It again broke me but Jessica was stoic and soothing to Abigail in a way only a Mother can be. Next came the Versed and a few giggles. Luckily and thankfully this Doctor allows his patients to have some happy juice before the IV’s and procedures start so the trauma is not as bad. Abigail was loopy and kept asking if Jessica was naked. Laughter is always wonderful but especially while waiting for someone to take your daughter and inject ethanol into her veins…in her face. Then the real big cluster, shock and stress began when the Doctor doing the Endoscopy to make sure Abi’s airways were ok told Jessica that it was in his orders to do a “maintenance tracheotomy” and needed her consent. All hell broke loose. As any mother would Jessica was overwhelmed with this unexpected and never discussed information. Tears, confusion, anger, fear, and complete and total stress filled the room. Abigail’s doctor had never discussed this with Jessica and Travis. I finally stepped in and took Abi, which was getting upset because Jessica was upset. Also I advised Jessica that she did not have to consent to this!!! (I am fortunate enough to have made it through a few surgeries and have a husband that works in that field.) After shock, fear, disbelief, and misunderstanding the orders were revised and the tracheotomy instructions were removed. Dr. Yakes had not and stated he would not give a two year old a tracheotomy unless their life depended on it. Disaster of misunderstanding and communication averted but damage on the nerves can’t be undone.
Jessica carries Abigail while I follow with stroller and bags to the OR. I thought it was wonderful that they allowed Jess to stay with Abigail while she resisted but had some laughing gas and fell asleep. Jessica even was able to lay her on the table before we had to leave. I say it is wonderful for Abigail but seeing all the machines and having the knowledge of what is about to happen and having to leave your baby is something that I cannot and would not want to have to cope with. Watching my friend stand tall for Abi only to deflate after the doors closed showed me a side of this journey I had never seen or understood. Heart wrenching. This family is so much stronger than I even could have imagined. Now the waiting begins.
I get us something to eat and bring it to the waiting area to have the very old grumpy candy striper tell us to leave with the food. We walk back down to the cafeteria to eat which is stressful for Jess because they may call for her in the waiting area. We eat quickly, make a phone call or ten to family and resume our station in waiting area. Jessica is called back about hours later to recovery. I am not allowed as only one person can be there at a time. Other parents had to switch off with their child and you could see the stress on their faces. Abigail was finally able to go to a room in the children’s wing and I met them there. What I saw astonished me. My happy little friend that is always smiling was a mess. She was red from crying, sweaty, disgruntled, and uncomfortable. She had betadine and blood in her hair, all in her ear on her face. She was almost inconsolable but Jessica is the strong Mom that persisted and was able to calm Abi. A very irritated two year old that was tired, confused, poked and prodded replaced our Smiley Bug. Through tears, rocking, talking and soothing, Jessica was able to get Abi to drink some juice and try to eat something. Remember she had not had anything since the night before and it was after 2:30pm the following day. Abigail ate a few bites and drank vigorously. After she calmed for a moment a nurse arrived and the tears, fear and crying started again as the pressure cuff on her leg (which she dislikes profusely) squeezes her. The cycle with Jessica soothing Abi starts again for the umpteenth time. I see the weariness in both of them.
But Jessica being the Mother she is she puts Abi’s needs before her own and takes the time to request that she bathe Abi before we leave the hospital. This way when she falls asleep she can be comfortable, clean and we wouldn’t have to make her shower at the hotel (no tub and Abi freaked out with the shower). We finally had the nurse take out the IV and take off the pressure cuff which helps some. The nurse not only gave us what we needed for the bath but brought Abi some bath toys  Our little Diva is now begrudgingly clean, still grumpy but better and about to be discharged. We continue to wait as Abi holds onto Jessica like a little sticky tree frog. I don’t think there was enough room between them for air but that is what they both needed. Jessica finally has to ask what is taking so long and again there was another misunderstanding and the wrong staff member was called/paged to discharge Abigail. She apologizes and proceeds to have us on our way but before has to listen to Abigail’s lungs, which starts the scary cycle of people touching and bothering her over again. And again Jessica is the strong one.
Exhausted we walk to the pharmacy in the next building of the hospital to wait some more. Abigail is fussy which is fully understandable but settles shortly. She is not sure what she wants at the moment, whether it be fruit snacks or no fruit snacks, juice or no juice, hugs or not to be touched. It is hard being so little with such big issues to deal with on a post operation brain fog.
We finally get to the car and Abigail quickly sleeps. We find a restaurant and pick up takeout and proceed to the hotel. Exhaustion is overwhelming from the adrenaline high stress day. Abigail is extremely grumpy and confused from meds and surgery. However she is such a trooper! As long as she had Mommy the entire world would be ok. Velcroed to Jess Abi finally rested for a good long while. We ate and attempted to rest but nerves were still on edge. At this point Jessica starting feeling really bad stomach pain and it was concerning as she was treated for ulcers and pneumonia before the trip. (That is why I came along. I didn’t want her to be alone after being ill. The thought scared me.) Very uncomfortable Jess tried to rest while Abi did but the pain was pretty bad but she tried not to complain and just focused on Abigail.
DAY AFTER SURGERY. Abigail wakes very early from her restful, medicated sleep. I tried to give her all she needed with juice, binki, monkey, blanket and clean diaper but none of that replaces Mommy. Abi gets in bed with Jess but will not let either rest. At this point Jessica needs medication and we thought we may have to take her to the hospital but she refuses and takes care of Abigail. Abigail now wants to go “Byebye” and eat. Of course we do because we want her to be as happy and comfortable as possible post op. I take her to the continental breakfast to give Jessica a break. Abby eats well even though her face is sore and swollen. But thank the Lord the swelling is minimal considering what it could be! She also has bruising and 28 injection sites in the side of her face and cheek. This does not include the IV.
We return to Jessica and she is worried over Abi and me. We head out for a ride to downtown Denver to distress and have a late lunch. Remember she is in extreme pain. I finally request we go back to the hotel and we attempt to rest. Remember we have not slept pass 3:00-4:00 for 3 days and usually couldn’t fall asleep before 11. Abigail all of a sudden gets a burst of energy and becomes a rolly polly on the bed. Wants lotion, makeup, juice, Mommy (well Mommy’s lap), a game, Mickey Mouse and whatever else a busy 2 year old can think of. We accommodate as much as we can but Jessica is getting sicker. I call my husband and ask what to do because frankly I was scared. Abigail and I went to get Jessica some medicine and sang in the car while on our task. Abi was so proud to get mommy medicine. At the end of Saturday we were all exhausted beyond words and stayed in the room for the remainder. Jessica was finally getting some relief from meds my late late Saturday and Sunday morning (only to have to go to the hospital after we arrived back home that evening).
THE DAY WE GO HOME. Jess again wakes up at three to prepare for the day and travel. I sleep a little longer then wake slowly but determined to get to the airport on time. Abi chatted in her playpen/bed and said “Mommy” 583 times in about 40 minutes. Nothing like Mommy to get you through the day. We took our plethora of luggage and bags, stroller and cute two year old and packed the car. We drive 30 minutes, fill the tank in the rental and drop it off. We then again for it seems like the 100th time take all of our stuff and load a bus for the airport. We unload, check in, check one piece of luggage, go through security (you already heard that ordeal) and finally make it to the gate. McDonald’s taste like heaven (yea it was that stressful) and we finally board the plane. Without a doubt we are delayed AGAIN because they have to change a tire on the plane and unfortunately we are not able to sit together on this flight. The first flight had a very nice gentleman that changed seats with me  We both settle in for the flight wishing we could sit together to make sure if Jess gets sick again I can help with Abi but had to accept we couldn’t. I just made sure to get up and check on them a few times, providing bathroom break and twizzlers.
We land and I swear Jessica had a jet motor to get off the plane and to her loving husband Travis! Her legs are so long and I am so short! I sprinted behind her and we met her husband and daughter. Abigail was delighted to see Daddy and Alayna was squealing with delight at the sight of her Mom. We gather luggage and pack the van. They were sweet to let me sit in the front since I had motion sickness a little from the flight and we made our way 45 minutes north east of Atlanta. I kissed the girls goodbye and went inside. I do not think I have been that mentally and physically tired in a long while. I begged to eat out so I didn’t have to cook and my husband obliged. And then I found out Jess had to go to the hospital. Can they not get a break!?!?!?!?!?! I finally could rest when I knew Travis was taking her home. I crashed. I have an 18 year old and can sit and drink coffee while I write this. Jessica, her Mom and Travis all have to get up, take care of kids and go to work.
Watching this journey is so very complicated. On one hand I want to say how proud I am of this family for their strength and courage. On the other hand I watched the stress (financially, emotionally, and physically) on this family. Watching their precious, 95% Smiling daughter go through her 7th surgery and knowing this doesn’t end, there is not a cure yet, only maintenance. Watching her family be apart and worried, missing one another’s support and encouragement in person. They kept in touch via phone but it is not the same. Watching Abigail as I have never seen her! Uncomfortable, confused, scared and angry. Watching Jessica cross a broad spectrum from most amazing, wonderful, strong, stoic Momma to a scared, worried and completely stressed friend was an eye opener.
When you see this family they are what we aspire to be. Don’t forget that because Abigail does not look sick that she is in fact living with an (for now) incurable disease. Because she hasn’t had to loose her hair like a cancer patient, because she is not disfigured (because of treatment), because she and her family smile so much… we forget what lies behind their eyes and doors. Never underestimate the power of love, support, modern medicine and most importantly prayer. Investigate and educate yourself about this disease that less that 1% of the population has to endure. Remember that this family is stronger than we can possibly understand. I chose to go on this trip to help Jessica and be a friend. I had no idea what was in store. I am physically and emotionally tired but I am so glad I was able to experience this with Jessica. I have a better understanding of what she endures and can hopefully be a better listener and friend. The physical impact of traveling, the mental stress from worry (not just day of but preparing for the trip, finding other family to watch siblings, someone to take care of the Dog, packing, scheduling, etc…) and knowing you have to do it all again in exactly 4 weeks…. These are not pleasure trips!!!! They are a vital part of keeping Abigail alive and healthy! I have heard some people say well they get to travel, eat out, and see new things. Well they are burdened by travel, they have to eat and the new things they see follow tears and pain of their daughter. Don’t think you can fully understand. I thought I did and I was completely wrong.
To Jessica, Travis and Family,
I love and support you every day! I have better awareness and yet can’t begin to understand your life’s’ journey. I am so proud of all of you. Thank you for letting me be part of the more private side Abigail’s life.