Wednesday was hard. I don't know why it was so difficult but I was really struggling Wednesday. I think I was truly disappointed that I couldn't blame Annabelle's problems on a tumor, I wanted badly for an explanation and I wanted badly to hear we wouldn't pursue Mitochondrial Disease. I began doing a very, VERY small amount of reading and understanding about Mito Wednesday and it tore me down faster than my head could spin. I want to bury my head in the sand and pretend this isn't happening to my daughter, but the reality is she is crying upstairs and needs mommy's help - the reality is also that I can't seem to find the right answers to give her help. Wednesday was very hard.
Check out this incredibly handsome little boy!! I think I've found Annabelle a boyfriend ;)
Thursday morning I woke up with a little girl running to the side of my bed. My Father-In-Law bought me a beer at the Petersburg Generals Baseball game Wednesday night and one beer is all it took.. immediately after the fireworks were over, I wanted to go home. I crawled in bed and slept. I SLEPT!!! I actually closed my eyes and rested.. or maybe I surrendered, either way, I needed it. That 9:15am (Yes, you read right!!!) little girl grinning on the side of my bed with a giggle when I opened my eyes was every bit of happiness and light I needed to see. I woke up feeling charged and ready to take on the world. My baby girl was smiling!!! She was so happy and Mady was running around giggling and being sweet as ever. I made myself a cup of coffee and parked myself on the couch without the TV on and spent time with my girls. We visited some family and friends and I poured my second cup of coffee. I kept reminiscing about the weeks events.. the unknown about the Brain MRI, the seizures that I am witnessing everyday, the sadness I feel in my heart.. and then I looked at my giggling little girls and I jumped up and told AK "We're getting out of the house! I can't take it any longer!! We're leaving the house today regardless what it means to Annabelle, these girls deserve to have fun and I'm motivated to take it on".
I am terrified to take Annabelle out of the house. I can't risk exposing her to germs, infections, viruses - the worst thing that could happen to her during this time is an opportunity for her struggling weak immune system to be challenged. She needs her rest, she needs to continue her medications and relax to allow her tiny body to fight whatever is going on. She needs to get well!!! She needs to beat this, whatever it is! But she also needs to smile and remember what life is about. No matter how many movies, toys, baby dolls, crayons or coloring books I buy her, she needs to laugh and enjoy life. I told AK we were going to Water Country and he looked at me like I had three heads. I didn't laugh, I told him we're doing it. We will be close enough to the Children's Hospital of The King's Daughter's if anything bad should happen. I have all her medications, Epi-Pens, a face mask, insurance cards and medical records.. most importantly, I'll pack the sunscreen, super-cool baby sunglasses and bathing suits. Both my girls are like fishy's and can never get enough of the water. Last week was scheduled for Myrtle Beach for us and we had to cancel our family vacation, I was due a break and I knew the timing was demanding our family an escape from the reality we're facing everyday.
We spent most the morning preparing and packing for our first family outing with sick Annabelle. Once the car was loaded, we headed East on rt.60 the entire way to enjoy the scenic route. Cops were everywhere on the roads but we never hit any traffic, it took us almost an hour to get to Water Country but it worked perfectly because the girls were able to take a nap on the way. When we got in, we immediately stripped down to bathing suits and headed for the water. It was wonderful. It was every single bit of warm sunshine and smiling faces I was hoping the day would bring.
I cannot tell you how happy both my girls were. I cannot begin to explain the intense beating of my heart the entire day as I watched Annabelle laugh and play. Mady enjoys preschool, she attends playdates and ventures to the park, Vacation Bible School and swim lessons - Mady had a great time at Water Country but it was simply another awesome day of living the life of a very lucky, special 4yo that gets to do lots of fun things. Annabelle on the other hand spends her days inside. She has spent the majority of the last several months in the hospital or in a doctors office waiting room. She's gone under anesthesia 3 times in 3 months, she's had over 50 biopsy's taken, she hasn't eaten in 99 days today, she's had more bloodwork drawn, shots, needles and pricks than I can even keep count of. When she isn't hysterical in a hospital setting, she is at home in a clean sterile enviornment with the same hand-me-down toys as her sister used to play with and the same exact blanket she sleeps with every naptime and bedtime. To see the gratefulness and appreciate of an innocent 21 months olds expression enjoying the OUTSIDE and a water park full of kid sized fun and play, is simply undescribable. As her mother, there is nothing else in this world that I could ever ask for than more and more days like we had yesterday for July 4th.
We enjoyed a couple laps around the Hubba Hubba Highway (fast-paced lazy river), and both girls gave AK and I a swim for our money chasing them around with splashing fun. Afterwards, AK took Mady to go find 'big girl' rides and I watched Annabelle near the shallow beach area with sprinklers as I sun-bathed in the shallow water, watching her run and play. I gazed at my strong little girl with a smile on my face that probably looked creepy and completely out of the ordinary to anyone else that looked in my direction. I was just in awe. . . . then I saw Annabelle start to stumble, she picked herself up and the smile on my face straightened out very quickly when I braced myself to stand at the next inclination Annabelle was possibly in danger. She took a few steps and fell again. I picked her up and headed into the shade to wrap her in a towel.. I didn't know what was going on quite yet, I had all her medical necessities with me, ready to go into action but I waited and watched. It didn't take her long after we sat down on a chair in the shade before she started seizing. It didn't last long though. It was over within 10 seconds, but it did wear her out. She relaxed on me for quite a bit. She laid her wet head and hair on my chest and I covered the both of us in a mermaid towel as I held her.. smiling and singing, "Baby Annabelle, of mine. Everything about you is perfectly fine. I love what you are. And I love what you do. Dear Baby Belle, I love you". She drank some water and we watched lots of other people, living their happy lives run about and play, and I sat there holding my baby.. with every bit of hope that I have inside me that this feeling will never go away - I will always be able to carry the hope for my daughter that she will be able to live a life just as all the others running around, laughing, playing and splashing with their families. In that moment, with all the worry that I carry in my heart, I was just so happy to be where we were. In the chaos of a theme park, as crazy and dangerous as it was to take her out, I wouldn't want to be anywhere else with my baby girl seizing than exactly where we were in that lawn-chair with a mermaid towel and the sun shining. This is our life. This is the way we are going to do things.. if we can make it out the house, this is what we will be doing from now on. Not all days are easy, but yesterday was a wonderful day for both my girls. Mady needed to see mommy less tense, wearing a genuine smile that I didn't artificially paint on for her, Mady needed to see her sister laugh and smile too. She needed to spend time with her sister in a different scenario rather than watching her cry at home and being rushed back to the hospital. Water Country offered more to my family yesterday than I could have ever dreamed. We likely could have gone to the local park and had the same experience, just with less tan lines, but we had a great time. I am so, SO grateful for a good day. We needed it badly.
After we left Water Country, we headed West to come back home and stopped at Colonial Downs for Fireworks. My girls were dressed in adorable matching Red, White and Blue. They were so tired from the day but they were pushing forward. I didn't want the excitement to end, I don't know when we will get another good day like this again. We made our way inside thru the crowds and soon the fireworks started. The colorful lights bounced off their faces as I saw Madelynne yawn most the time and Annabelle in amazement over the colors, while clenching for dear life.. loud noises are not her cup of tea. The girls had a great time however. When we were leaving Annabelle started choking.. then she started coughing harder and gasping. At that moment is when my stomach sank for the first time, I immediately thought "Stupid Ashley! You pushed it too far!!! Now what are you going to do?! You're in the middle of a huge crowd and Annabelle is in distress! Now what?!" Fortunately it only lasted several seconds and she finished by gasping several times before she clenched around my neck with tears in her eyes. I could tell she was in pain and AK looked at me and said, "We really need to get her home.. let's hurry". Hurry wasn't exacly the same thought everyone else had in mind.. we spent 45min in traffic just trying to leave Colonial Downs. Each time I would turn around and see Annabelle swallow, she would cry, sometimes she would scream and other times she would just wimper herself to sleep.
She did have a hard night last night. Several times I wanted to kick myself for pushing her and risking lots and lots of dangers of the day. It was terribly risky what I did, taking her out - but then I remember the smile that my little girl wore the ENTIRE day long. Not once did I see her crying. She was grateful even for the times she was riding in the stroller from one area of the park to another, she soaked up every bit of the day. I believe our family brought a bit of Williamsburgs energy home with us yesterday. I hope it carries this motivation, happiness and joy with us for quite a while, when we need another bit of recharging - we will go back :) So let's also pray for more good days so we can take more of these opportunities!!
Happy July 4th!
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