Most every night AK will drop his head and ask me, "What's wrong Ashley...What are you thinking about?" I guess my painted smile forgets to remain frozen and it drops from time to time. What am I thinking about? That's a loaded question and to be honest, most the time I can't really answer it.
I think about the future a lot..
I dream about our Christmas Tree this coming winter, today is July 25th and that means in exactly five months there will be glistening lights, laughter, presents, candles burning on our mantel around the filled stockings and little girls giggling as they run down the stairs.
But will they? If Christmas were to arrive tomorrow morning, I cannot say for sure it would look that way. Annabelle spent hours last night crying, AK and I were both frazzled and clueless as to what to do to help her. This morning she appears happy and smiling but who knows how long this wave of smiles will last. All weekend she struggled to even keep her head up, she was exhausted in her little body, she was hurting and couldn't tell us how to help her - What will Christmas look like for us? Will she be able to enjoy all the fun presents? Will she tear through wrapping paper and throw tissue paper over her head while squeeling with excitement? That is what every 2 1/2 yr old should be doing at Christmas time but I cannot imagine this is what our Christmas will look like with Annabelle. Last year she laid in the middle of our living room floor, laid her head in daddy's lap and watched the fun all around her. That image will always be scarred in my memory, Christmas marked the downhill slide for Annabelle.
I want so badly to be able to look at my baby girl and imagine how much fun she will have in her future, how painfree she will feel, how 'normal' our family would have returned and how much laughter and cheer will flood thru our home.. but I cannot do that. When I look to our future, I struggle to see that happiness in our home - I am fighting so very hard for it, but I drop my head in sorrow when I dream about it.
I think about the past a lot..
My pregnancy with Annabelle was nothing less than terrifying, each and every day was a struggle from the moment I found out I was carrying her. Just as denial as I am in right now, I was in denial all day during labor with Belle - it wasn't until midnight that I surrendered the reality that Annabelle would soon be born and I cannot do anything to stop it, she was born at 1:21am.
Videos:
Immediately after Belle was born via emergency c-section. She was carried by the Neonatologist moments later to the NICU.
Annabelle growing stronger each day in the NICU
I spent the first several weeks watching Annabelle struggle to thrive and gain weight as she screamed thru each feeding. I drove her to every doctor I could find until I made enough of a scene that they referred me to a specialist and they found the blood in her stool. We moved Annabelle to a safe diet from then forward. I struggled to build a connection with Annabelle, I was busy in life caring for both Mady and Aidyn, working second shift and sleeping in short intervals between getting home from work at 1a, feeding a preemie and waking at 6am with toddlers. I kept Annabelle under my wing and watched her like a hawk. I've always known something was wrong with Annabelle, since my pregnancy began I have told AK on more times than I want to admit, "Something just isn't right... I hope everything is ok, but something isn't right." He told me I was worrying too much and I believed him. The best time I spent with Annabelle were her months between 9 months old and a year, during that time she blossomed into her incredibly fiesty personality that we see now. She was happy for the most part, she smiled and giggled, Mady and her sister finally started to bond and watching the love between my two girls, and the admiration Annabelle has for her daddy made my heart flood to her, finally. Soon before she turned a year old is when the pain began for Belle and we started struggling with foods. That is when I returned the Dr. Mom hat to my head and put the shield over my heart to figure out what was happening to my little girl. We had an incredibly hard road from last summer to where we are now.. I would have to say not much has been easy during the last year, and it's only moved faster and faster downhill over the last few months.
My love for Annabelle has changed again, and I often reflect and think about this.. how I am feeling and if I am loving her enough. I am. It's subtle notions that I find to remind me, "Ashley, you're doing alright by your two girls.. you do love her enough, you are fighting and you are doing what a mother should." I do tell myself this, but I do have doubts all too often. I am petrified that I am looking to heavily at 'There is something wrong with this child in front of me, my heart is telling this and I need to figure it out.', I hope I am not seeing too much thru those eyes and that I am seeing Annabelle for who she truly is, every ounce of her personality and attitude.
She tests our patience often.
She drew on my hardwood floors a couple nights ago with a black marker and I yelled as I demanded her to "March your butt to the stairs and sit in time-out, right now!"
I cleaned the marker up easily and then joined her at the stairs to discuss what she did wrong and why she was in time-out. She never cried the entire time she sat there until I joined her.. she then clasped both hands onto her lap and dropped her chin to her chest and started to force a whimper. I used simple words to explain, "Annabelle, we do not draw on the floors. We only color on paper, do you understand?" She pouted her bottom lip out as far as it would go as she lifted her eyebrows to look into my eyes.. still forcing her chest to rise and drop thru her fake cry. "Annabelle, Do. You. Understand. Me?" She squeezed her tiny eyes as tight as they could clentch and somehow managed to drop a tear as she nodded her head, 'yes'. I couldn't help but fight the smile that was quickly getting ready to flood over my face and I told her, "Girlfriend, you are something else." Her entire body jumped and opened up like a butterfly as she squeeled "HAAA!!!!" with the biggest smile you've ever seen. She's a character, and full of more personality than I have ever seen out of Madelynne.
I watch the things she does and smile without even realizing I am doing so. I tell AK constantly, "She is so cool, like really, Annabelle is probably the coolest almost-two-year-old I know. I think she gets that from me". We agrue about why she is so cool, but agree that yes, she's pretty awesome.
I lay in bed and toss and turn at night and think, "I miss those girls.. I wonder if I would wake them if I just crawled into one of their beds?" I sit at work and my heart literally sinks when I look at pictures of them on my desk, and then my heart absolutely crumbles when I think of seperating my girls in any way - Mady would be lost without Annabelle, I would feel too guilty if I took Belle somewhere fun without Mady.
I relive our past memories with our family often, and that most often leads me to this place of sorrow. There are so many happy, wonderful moments in our lives with our family that lift me when I drop my head, but there are equal memories of terrifying nights and prayers to help soothe my baby when I as a mother, cannot.
I think about our present often.
Where we are today, right now, this minute and second in time.
Today we are living for every moment that God has blessed our family for what it is. A small home, dated linens, some chipped coffee mugs and a dryer that gets off balance at times. Our home is filled with every room of memories, the sink that I first bathed Mady as I stood in only pants and a bra because she pooped all over me when I took her diaper off.. but I snuggled her close because I was worried she would get cold. The stairs that both girls have taken a tumble down when learning how to crawl up and down them. The front door that has smooshed toes. The dog that was a baby when we brought home our first baby. Our bedroom where both girls slept their first nights at home.. God has blessed our home with memories, all our belongings, two beautiful girls and dog and fenced backyard. God has been very good to us and blessed AK and I both with incredible jobs that allow us to provide for our family. Jobs that are incredibly understanding and have become and extended part of our family during this difficult time.
God has given us you.
On the nights I drop my head in silence and think, when I don't believe anyone is watching and AK asks, "What's wrong Ashley.. What are you thinking about?" I think about the past, I dream and pray for our future, I process what is happening in our home as we speak. I pray to God to give me the strength to see all the happiness and good times in our life, to protect my heart from the bad and use it as motivation to fight harder for the future. I ask God to help me understand this life a little better and to trust in his blessings for our family - and he gave me you. Family that we spend the holidays with and exchange Christmas cards, Friends that we fill your home for your kid's birthday parties, or less personal friends that we smile and make small talk while sticking a straw in a juice box for our toddlers together. Co-workers that I share stories around the coffee pot when we join for our 7:30a or 3p Java, co-workers that AK updates anytime they asks how Belle is doing, you are perfect strangers to Annabelle and may have never met her to know just how amazing she is.. maybe you work with one someone in our family, maybe you're friends of a friend that asked you to share Annabelle's story. Maybe you simply stumbled upon this very simple, spur-of-the-moment blog to read what people keep sharing across Facebook or email. Whoever you are, I Thank You.
This world is too often full of cruelty, hate, violence and selfishness but somewhere in the midst of making our way through life, I check my mailbox and shuffle thru bills upon bill upon bills . . . . and there is a card to our family from someone that is simply thinking about us.. wants to wish us well.. wants to wish Belle 'Get Well Soon', wants to let us know they are thinking about us. On a spontaneous night as I drive home from another very long day at the hospital, AK comes home with bags FULL of food and meals prepared for our family so I don't have to cook and clean, because we have incredible friends that wanted to help and donate dinners. It isn't even the tangible gifts, but the sincere messages, or the floods of prayers that are being sent upstairs that are carrying AK and I thru this nightmare. There is nothing else in this world that I could ask for than two beautiful healthy little girls, that gift and decision rests in God's hands and the more prayers that are being sent his way, the more grateful and honored we are to have you praying for Annabelle. This incredible little girl has the biggest support team of cheerleaders that I ever though imaginable, I am so very proud of her and honored to stand next to this Super Baby Belle.
Oh, and please do not get me started on the tears that have fallen any time I navigate to the YouCaring Site that my best friend, Andi developed for Annabelle! She, and many others have asked on so many occasions how they can help. I beg for only prayers but I can appreciate how helpless that may feel to those that are begging to lend a hand in any way they can. I have watched families struggle and I do sit at night praying for other boys and girls that are fighting their own battles and I too beg and pray to allow me to help in any possible way to lessen the burden on their plates. There isn't anything in this world I wouldn't be proud to do for those other families, I would move mountains for them if they told me which mountain, I would be honored to scrub their toilets so they can spend their time with their loved ones instead. I wear my heart on my sleeve and I am very proud for every ounce of what gets burned for doing so at times. The times in which I can offer a piece of my heart to those in need fills me with more joy than you can imagine. And today, each and every day, with every prayer, dollar donated, card in the mail or sweet gift for the girls, I learn just how incredible and loving of a support group we have around us for Annabelle. My heart literally FLOODS with admiration for all of you, Love for each of you that love my little girl and a world of Thanks for your help and support during this time.
I do want you to know just how helpful the donations have been for Annabelle..
She is covered on two insurance policies and both have the ability to deny medical treatments, they both send us on a circus and deny prescriptions and prescription refills, they both attempt to double charge for treatments if I do not pay meticulous attention to every detail. AK and I are blessed with incredible careers. But I am not an employee, I work as a contractor, and when I do not work, I do not get paid. When Annabelle has a doctors appointment, I take her. When she has a procedure scheduled, I am there. When she needs routine bloodwork done, it's scheduled and I drive 40min out of our way for the best Pediatrician Phelobomist in Richmond so we do not have to stick her arms/hand/foot more than once. Last week alone Annabelle met with seven different doctors. We traveled to Norfolk one day and then Chesapeake two days, we made trips to the pediatricians office twice and several trips around pharmacy's. This means I was only able to work a handful of hours, no matter how hard I tried. You would laugh if you could see my paychecks right now, I cry. Great insurance and a wonderful job isn't helpful when you have to fill your gas tank several times a week. Insurances do not help when you arrive at CVS and Annabelle's prescription is $600. CVS, by the way, doesn't take payment plans.. if you don't have the money for the $600 prescription, you don't leave with it. I look in the backseat at my crying baby girl and know she is in pain from one problem or another and I know she needs the prescription to provide her with the relief that no child should have to suffer from. I cannot tell my daughter with tears running down her chin, "give me 3 days to work out the logistics between the physician, insurance and pharmacy to get this prescription covered sweety, im sorry." No - my baby is in pain and I hand over the $600, that's just what you do as a parent. I am fighting like hell to do everything in my power to help my daughter right now and I will clean up the mess I have made later when the dust settles.. It's not easy though, and it's getting harder and more difficult to do.
AK and I have built the memories in our home, and gained all our beautiful possessions without an ounce of help from absolutely anyone. We have never asked for a penny from anyone even when times were very, very difficult. It's our pride and hardheadedness that has carried us this far and I am beyond proud to say we have made it alone, together. But this is a new battle, this is a struggle that even the most wealthy get hurt. Our healthcare system has so many broken systems and I will not allow my daughter to lose this fight or suffer because I cannot afford the prescription to provide her relief, or the gas to drive her to the best doctor the state has to offer for her disease. That is an honest reality that faces us, and when I began to see the selfless donations you made for our family towards Annabelle - the tears began to fall so very fast. Every little bit, every penny is another ounce of promise for Annabelle gaining relief, strength, the best doctors, treatment, care, medications, attention, and above all the love from mommy and daddy that we are home with her in the evenings to kiss her goodnight without an even heavier blanket of worry over our shoulders. I would never, and will never, ever ask anyone for help - but I can thank you from the very bottom of my heart, and on AKs behalf as well, that we are utterly grateful for your love and generosity for our family.
Thank you. This was a much overdue, but the most important post I may ever write, to thank each and every one of you for all you are doing.
Thank you,
for the prayers
well wishes
cards
gifts
girls easel
allergy medical bracelets
dinner, dessert, lunch, breakfast and WINE
oh, more wine
for the flowers
for the smiles you wear when you stare at your computer screen and watch the video below
for the tear that may fall when you feel in your heart what we do for this amazing little girl during tough days
lambie
babydoll bunk beds
great wolf lodge
eclair cake for breakfast at work
the tight hugs when you squeeze my girls
the gratefulness you feel when you take a bite of your dinner tonight and thank about Belle, all she is having are Sweet Potatoes tonight, again
for seeing Madelynne as a super awesome 4yo and not only a sister to sick Annabelle
for seeing AK and myself as normal everyday people, wearing our hearts on our sleeve and trying to make the most out of this life with two wonderful children.. that just need a little uplifting during the darkest days.
Thank You.
Thank You.
Thank You.
And bless Mady's little heart, I believe she attempted to dress herself for a walmart outing before she began showing off her best dance moves... that she only could have learned from her daddy ;)
Nonetheless, this is our little family, making messes and memories on a Saturday morning.. don't laugh at us too hard!
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