Sunday, October 4, 2015

Allergic reactions and losing weight

Bombshells for Belle was a blast. We had a great time, the kids played, they were filthy dirty. Friends and family came out to support us and the event carried on despite the promise of awful inclement weather. Annabelle made some new friends as did we. We cannot thank Bombshells for Belle enough for all their hard work and efforts in pulling together such a wonderful event for Ms. Annabelle!

Since the event though, we have had a tough time. Annabelle woke the next morning experiencing an awful allergic reaction. I passed her in the hallway before I left for work and with a split second glance at her face, my stomach fell to the floor and I dropped to my knees to look at her more closely. Her face was terribly swollen everywhere, from her ears, eyes, cheeks, chin, mouth etc. It was bright red and hot to the touch. I called our doctor and her response "What has she been exposed to?" ....well.. the day prior was Bombshells for Belle so really, the sky is the limit! My stomach sank even faster. I knew I should have kept a closer eye on her, I KNEW I should have made her wear a mask the entire day. I was so mad at myself .. but none of that mattered now. I gave Annabelle a strong dose of benadryl and headed into work. The day moved as I sat on pins and needles while the nurse gave me updates nearly every hour on how she was doing, her breathing and what the swelling/redness looked like.

It took several days for the reaction to finally go away. Then, yesterday (Saturday), another allergic reaction developed. This time I KNEW she hadn't been exposed to anything out of the ordinary. Her mouth, lips, chin etc were red, splotchy and swollen. I have no idea what is making this little girl react but it's frightening me. She hasn't had visible allergic reactions like these in years - and now two in only a week.

Also, to add insult to injury, Annabelle has lost TWO pounds in only two weeks. For any parent of a tube-fed child, seeing a number DROP on a scale is one of the most nauseating things to watch happen. You don't know why it's happening, you feel like you're doing all you can but your child's little body just can't keep up. Fortunately for us, I may know what is going on. I stopped tube-feeding Annabelle during the nights to give her more comfort, rest and also allow her to sleep better and in big girl undies (this is quite a treat). It's uncomfortable for her to remain hooked and tethered to an IV pole all night, her stomach hurts her when she's being tube fed and potty training during the night is just impossible. Allowing her to end her tube feedings at night was such a reward for all of us. I felt that she was eating enough during the day and now at 4yo, she had enough nutrients and a balanced diet to thrive without needing the tube feeds. Apparently I was wrong. Her appetite for some reason has been poor, she's more sleepy than ever and she's rapidly loosing weight. Back to tube feedings we go :( Poor Belle. Let's cross our fingers and hope this fixes things.

If she doesn't begin to put the weight back on soon and these allergic reactions seize, we will be headed back to Cincinnati much sooner than November 16th!

Saturday, September 26, 2015

Bombshells for Belle

Oh my goodness, Oh my goodness - the day is almost here!


We have been stalking the weather all week and Virginia weather just isn't very promising or abiding by the forecasts - they're calling for some rain but we have no idea what to expect. The good news = We will have plenty room indoors and indoor activities so don't fret over the rain, we totally have a backup plan ;)

Annabelle is heading to bed right now (thank you to the sun going down super early these days, she is completely fooled by the time, hehe). She cannot wait for her big, big event tomorrow - she has no idea what to expect but she's talking all about it... im pretty certain she thinks it's a birthday party. lol

This week has been a little hard on Annabelle. Her stomach, undoubtedly has been bothering her, to the point we've had to assess her tubing / feedings / venting a lot more lately to provide her some relief. She's developed some granulation tissue around her stoma (gtube site) that is typically a sign that her immune system is active and responding to something (that's bad. really bad). For right now, I don't see any outward signs of a relapse taking place, but our prayers and precautions are remaining strong just in case.

This weekend has been the perfect opportunity to relax and reflect while the overcast skies remind us to 'slow down' and 'take a deep breath'.
Life is beautiful.
Life is short.
Life is difficult and nothing is promised.
Annabelle has survived her body's battles for four years now, FOUR YEARS. Not one of those days have been easy, but they've each been a blessing. Not one of her surgeries, the thousands and thousands of medical debt, the sleepless nights, the tears of her big sissy that doesn't understand what is happening, the countless slammed doors in our face - not one day was easy. But goodness it was a blessing that I never knew was intended for our family. I never knew our families struggles and pains would lead us to where we are today - FLOODED with love from family and strangers. FLOODED with generosity that wants nothing more than to give and help another family in need just as strong as we do the same for others. This world is so much bigger than a home's four walls. What you do today impacts families and those all around you every day. Today was a perfect day to reflect on our own family, how much of an impact Annabelle has made on other's lives, how much she has shaped our family to love and support a whole new world that we may have never known. How much Annabelle's life circumstances could amount to an event like tomorrow's "Bombshells for Belle". Just absolutely amazing.

We are too giddy to sleep. My heart is bursting from my chest with the excitement and thrill of seeing everyone and showing you all just how amazing, strong and heroic our sweet baby girl truly is.

Please, tell everyone about Bombshells for Belle and come out any time tomorrow to say hello. The event is from 12-5pm ... they will have raffles and floods of prizes, great beer, hula-hoop contests, classic cars, cotton candy, great music and awesome people all day.

I look forward to seeing you all. And as always, thank you so very much for everything you've done for our family and your continued prayers as we fight to making a life for Annabelle that she deserves, a painfree, promised long life of smiles, (tantrums), giggles and love. :)

Year 1 After Diagnosis:

Year 2 After Diagnosis:

Tuesday, September 15, 2015

God's purpose for your life is far greater than your pain

We can hardly keep our heads above water lately. Sports have begun, we balance cheering, dance and gymnastics. A new school year has started, in which we now have three kiddos all in different grades. Annabelle is growing and thriving in all new ways for our family, her energy is thru the roof and her opinion and sas is never-ending. The older kids are adjusting back into their school routine (early bedtime, early mornings). Everyone is cranky and tired. It's the same transition in everyone's home right now with school-age kids. And it SUCKS! It has it's fun moments, but overall, it's a bear to get thru.

My stress and anxiety is thru the roof so I decided I needed some time out of the house. A friend and I made a trip to hike Old Rag Mountain. Yes, the mother and woman in a household of 7 that hardly has time to breathe, let alone exercise - thought it would be a good idea to HIKE A MOUNTAIN! I did it though. The solitude was so rewarding, I felt alive, powerful, strong, fearless and free. I needed the crisp mountain air and burn of my muscles to ground myself back into my happy place. Standing on top of Old Rag Mountain was everything this mommy of a special-needs little girl needed.

I got home and I couldn't move. What in the HELL have I done to myself? My family laughs at me as I try to walk, or attempt the stairs. I moan and groan with every step. I hiked over 11 miles of one of the most strenuous mountain hikes in the state in exactly 5 hours. I am a warrior...... a dumb, aching, goofy, warrior.

Still though, our house moves in a fast pace. The family gave me Sunday off to do the hike but Monday morning was back to normal. Work at 6:45am, meetings, practices, we still have sports, dinner still needs to be on the table and nothing on our schedule allows for a tired, aching momma. All I wanted was sleep. I counted every hour on Monday to the moment I would be able soak in a hot bath and fall asleep early. I got into my comfy clothes and we ate dinner early. We did homework and read books early. I dressed the girls in their jammies early and then made my way to my bedroom. Heaven. My happy place. I was writing off anything and everything else I am responsible for taking care of this evening, because I am taking a bath and going to bed!

And then, my phone beeped. I hesitated to look. "Its probably just an email Ashley, don't look. It's probably nothing.. it isn't ANYTHING more important than a hot bath and your bed Ashley, don't look."

But then I looked.

"Any pointers on placing an NG-Tube? A friends 4mo just recently had one and pulled his out tonight and the parents are too afraid to put it back in"

If you were in my bedroom you would have seen the defeat sweep across my face as my head dropped to the floor and I cut the bath water back off.

I responded, "Absolutely. Do they want to call me? If they live close I will go help them if that is what they would like. My cell is: xxx-xxxx"

When the poor mama called me, I could hear the exhaustion in her voice over the phone. I remember the first time Annabelle pulled her NG-tube out at home. We were too scared to put it back in too and I asked our next door neighbor to come over and do it for me. Tube feeding is terrifying and you've never felt so alone and helpless as you do when you're home and are ill-equipped and medically uneducated to understand the ins and outs of tube feeding. Hospitals do NOT do nearly enough to educate the parents on how to care for a tube-fed child. We have learned 99% of what we know by making mistakes, troubleshooting at 2:30am, phoning a friend etc. One thing hospitals never told us though, was that the tube feeding world is full of parents just like us. Confused, frustrated, heartbroken, scared and lonely - we move together though and care for one another and each others babies as if they're our own.

I changed back into real clothes and made a trip to the medical closet in our house to grab some supplies. I remember when we were sent home, we had NOTHING to get us started. We didn't know which products were helpful and which weren't. We didn't have the right supply we DID need and we didn't know where to even begin. I grabbed a handful of all my favorite products for NG-Tube feeding and even a few fun things too, like Feeding Friends stickers, and headed out the door. I got to their house around 8:45pm. With a coke in one hand and medical supplies in the other.

They didn't have 1/4 of the medical supply they needed/deserve. The poor little baby's face was quickly on it's way to being raw from the tape and the tube they gave to take home didn't come with the right pieces for placement. I felt awful but SO grateful that I was there to help. All the things I packed to bring them were needed. The tape, the skin barrier, the ointments, adhesive remover, syringes, etc. Before we got started I shared some secrets for taping the tube down to keeping it secure. We talked about troubleshooting the tube and ensuring its placed correctly, the feeding pump and any questions they had. When the time came for us to place the tube, the momma left the room. I could see the heartbreak in her eyes and how her mommy heart just poured for her baby boy that was having to go thru all this :( It broke my heart more than I knew possible.. to see someone else wearing the same devastation across their face as I have worn. I wanted to take this perfect stranger in my arms and tell her it would all be ok. I could see how strong she was being but I could feel how broken she was for what was about to happen.

The little boys daddy stayed in the room with me to help. Daddy was the one in the family appointed to "learn how to place the tube and fix it when something is wrong". AK and I have assumed similar roles. We divide what each person can handle and who can do which part of all this the best. He knows the things that I cannot emotionally handle and I recognize the times that he cannot be present because it's just too much. It was comforting to see that balance in another home too. The daddy was also visibly concerned and worried, but he was strong and confident. No one spoke much, there just isn't anything helpful or enlightening to say when you're faced with painfully shoving a tube down an infants nose/throat.

With mommy in the other room and daddy holding down the sweet babies arms, we got started. I placed the tube in the opposite nostril than was he had just been using. It went into place without any issue at all. In fact, I don't know that placing a tube on Annabelle was EVER that easy. My hands were visibly shaking because I wanted this to go by so fast for the baby and his parents, I wanted to do everything right for them - I prayed my NG-tube placing skills were still on point from nearly two years ago!

After it was placed, the tube immediately dripped with gastric fluid because I forgot to close the end. Daddy picked him up and I began to clean the mess, "Im sorry about the mess! But, do you know what this means?"
Dad said with a smile. "It's in his stomach?"
"That's right! We're all done!"

We taped him up and I let his big brother pick out a super cute feeding friends sticker, he picked out the Lion (I believe) and I cut it out for him to place on his baby brothers little face to hold the tubey in position. Before I left I gave him a little kiss on his forehead and made the parents promise to give me a call if they have any questions or worries at all - I am happy to come by ANY time.

The drive home felt so fast, I forgot to turn on the radio.
I found myself smiling ear to ear and my heart bursting with love and joy. What an awesome feeling to have the skills, knowledge, experience and confidence in something that can help another family in such a way I could ease their worries and fears by my own experiences. I have seen and felt their pain and here I was, able to do God's work and take that away from them. My mind wasn't filled with all the things on my to-do list for the week, I didn't blink at the thought of all the running around I have been doing and I completely forgot how sore my body was from the hike. All I could think about is how strong, beautiful, honored and happy I felt in that moment. There is no way anything on this earth could have brought me down from that feeling.

I got home and walked up the stairs and back to my bedroom. AK had drawn me a fresh hot bath and greeted me with a hug. It was really late and I should have been tired enough to collapse, but I wasn't. All I could do was smile. He gave me a kiss on my forehead and told me how proud he was to have a wife that serves others at a drop of a dime. Likewise, I am proud to call him my husband.

 When you realize God's purpose for your life isn't just about you, he will use you in a mighty way.

For years we have questioned why God was challenging us, putting us thru this hell, torturing our little girl and running our family thru the ringer. Little did we know that we would be where we are today. Just last week Annabelle saw a little boy at Chick Fil A with a trach, he said "mommy! He has a Tubey in his throat!" I said "yes he does Hunny, people can have all kinds of tubeys." Annabelle walked over to him and showed him her tube, she then reached for his hand and said "we are Tubey buddies" they exchanged a smile between one another that was such a connection, I didn't know a toddler could share! The dad smiled at me and I smiled back. There just are no words - I walked away in awe, as though I had just seen something miraculous happen between two kids that need one another in a life that certainly proves to be unfair at times. And here my daughter is befriending a little boy and taking his hand to make sure he knows he isn't alone. 

Our family has taken a very very long time to get to this point, but we're starting to see just what this whole life / tragedy thing works. Would I have signed up for this? Absolutely not. Could I have ever found happiness and fulfillment in a way I am now? I don't think so. Annabelle's journey has shaped our family and our perspectives in a way we could have never done on our own. We are so thankful, we are blessed, we are honored for all we have been thru .. If it's purpose is this, to help others. To serve others. To relieve the burden and fear from another parent in the middle of the night. To remind another 3 year old that he isn't alone. If that is what this journey is about - wow. Just wow. 
What a blessing and honor it is. 

At the end of our lives, we will not be judged by how many diplomas we have received, how much money we have made or how many things we've done. We will be judged by "I was hungry and you gave me something to eat. I was naked and you clothed me. I was homeless and you took me in."

Thursday, September 10, 2015

School Time!

Our house is soooooooo loud and insane right now! That's all I can say. Please, everyone, a moment of silence for all the parents that have held their breath this week and the chaos unfolds for another school year.

This year, we have three kids in school. Madelynne is off to 1st Grade, Aidyn is off to 2nd Grade and Annabelle begins her first year in preschool. Everyone is so excited, thrilled, eager to begin the year.. and then, there's me. Completely freaked out over how we are going to manage the floods of paperwork and madness. We're doing it though!

Tuesday, the big kids made it thru their school day without a glitch. They love their teachers and the bus.. and they don't have homework yet. So we consider it a success.

Annabelle's first day of preschool began Wednesday. Tuesday evening we picked out her outfit despite her wanting to wear pajamas, a mini-skirt, sneakers and swim goggles (I am NOT kidding). We said prayers and she gave her sissy a big hug goodnight and they wished each other a good day at school tomorrow. It was precious.

Bedtime was going well.. until School Crisis #1 began:

Annabelle: I don't want to go to school mama! Im not going!
Me: What are you talking about Annabelle? We've already visited your classroom and you're going to make new friends in your class!
Annabelle: I can't go. I won't have friends. I don't want to go to school anymore. (pout)
Me: Annabelle, sweety, it's ok to be nervous. Mommy, daddy and sissy were nervous on their first day too but you know what !?! Mr. Pat will be there with you all day if you want her too! You don't have to be nervous at all!
Annabelle: I can't mom! I CAN'T DO IT!!
Me: Yes you can sweetheart, you will have so much fun.
Annabelle: (begins sobbing uncontrollably) Butttt I cannnnnn't! I CAN'T DO MY MATH AND READ! I CAN'T DO ALL MY SCHOOL THINGS!

(me trying not to laugh)

Me: Annabelle. You don't even know your colors yet or how to make a circle. Your teacher does not expect you to do math OR read. She is going to teach you all those things. You are going to LEARN your ABC's, numbers, and how to color pretty and write your name. Your teacher will teach and help you with those things! Don't worry! All you have to do is have fun, I promise, that is what preschool is about :)

Crisis Averted.

Unfortunately AK and I had to be at work and couldn't see her off on her first day, but Ms. Pat documented each and every step for us.

Our nurse must be with Annabelle full-time during the week, so after she arrived Wednesday morning she made the day extra special for the both of them. They got dressed and made their way to school. Annabelle found her seat with her special name tag and posed for the camera.

The day consisted of coloring, snacks, playtime, potty time, recess and then lunch. They left before lunch because Annabelle doesn't eat with the class, she comes home for lunch / tube-feeding and bedtime because she's already exhausted. But from 9a-12pm she is a school-rockstar!

Mady and Belle both had gymnastics that evening so I didn't see them until dinner time once they were home. The stories Annabelle told were absolutely heartwarming, the light that lit her face was nothing short of a blessing to hear and watch. Let's hope the rest of the school year continues to be equally as fun and exciting for all the kids.

Tuesday, September 1, 2015

More conversations with our team in Cincinnati

The decision is to keep Annabelle off all drugs until our next round of biopsys. Though she is still uncomfortable and isn't sleeping thru the night, we want to hold off on trialing drugs because right now, in our opinion, she's very stable.

Her diet and appetite is building every day. Though she still receives elecare (medical food via gtube) we encourage her to take it orally before we resort to hooking her up for a full tube feeding. 

A major accomplishment over the past couple months is that we are successfully weaning her off night feeds.

Night feedings have scared me since tube feeding began. Annabelle does the gator-death-roll in her bed and gets herself tangled in tubes and wires.. Just waiting to rip the tube out of her stomach. Not to mention falling out of bed while hooked to a pump = chance of the tube getting ripped out. When she rolls on tubing, it pinches and the pump beeps until we come in to troubleshoot = we are awake, belle wakes up, mady hears commotion, 3am and everyone in the house is angry, tired and awake in the hallways. This happens several times a night. Or even more frustrating, Annabelle will manipulate the pump and tubing to either disconnect herself, increase the feed rate or close the tubing to her tummy which then feeds the bed/floor 30oz of formula during the night.

We are increasing the hours between her necessitating feeds and it's working well. I am very proud of her progress and how she's handling it. Now, this will not always be a safe option, during times in which her body is going thru a growth spurt / she's sick or her little system is demanding more, we will HAVE to connect her to feedings around the clock again. Crisis and danger begins when Annabelle's body demands more than we are giving her.. that is when everything begins to get out of sequence and a chain reaction of events start all over. Those are the times we find ourselves happy on the playground on a Saturday and in the ICU on a Sunday and can't understand why.

That being said, we are very very grateful for the ability to wean Annabelle from constant feeds when her body is stable, she drinks her formula during the night via cup so we dont have to hook her up and she's eating like a teenage boy from a real plate and fork. All things that a tubey mom celebrates way more than I even knew possible.


Next surgery is scheduled for November 16th. I am still ironing details of the travel dates, but we will likely travel Saturday, arrive and enjoy the city a bit. Check into the hospital Sunday to begin the clean-out process inpatient. We will have appointments Monday morning with Genetics, Immunology and Gastroenterology (praying they will come to us in her private room so we won't have to wonder the hospital halls between ... umm........ rectal irrigations and the cleanout process :(. Finally, her OR time is booked for 330pm and they will take her back to perform everything we did last time. The process shouldn't take too long. Once she is finished and has recovered, we will be discharged to come home. The last time, it took us nearly 6 hours until Annabelle was stable enough to leave the hospital after anesthesia. I am praying it will be much faster this time because our goal is to hit the road back to Richmond, VA immediately so AK and I will not have to miss work Tuesday. We will be running on fumes and few hours of sleep but, tis' life. I will keep you updated as we continue to book more.


Coming up in just a couple more weeks, I absolutely cannot wait for this fun event. The music, classic cars, oh my goodness the prizes and raffles galore, the brewery beer and fun. It's guaranteed to be the best time and great cause. This event will be a little different from that of Answers for Annabelle and I cannot wait to see the variety of love and support from different but equally humble and loving organizations.


Speaking of our "Motorcycle Friends", we see and talk to them all the time. There is never a week that I do not hear from the Guilty Ones as they check on Annabelle and our family. They have been by to visit her and we try to do the same whenever we can. We will forever have an extended family connected with them and I couldn't be more grateful for the leather vests, tattoos and harley's that have walked into our lives.

Last Friday, Bikers for Christ paid our family a visit. In traditional fashion, Annabelle impatiently waited for them at the front door until she heard the rumble of bikes rolling down the streets of our neighborhood - the moment she hears the thunder of a motorcycle, she utterly looses her MIND! It's the most magical, heartwarming thing you've ever seen.

Our friends with Bikers for Christ wanted to come by and check on Annabelle and see how her progress was going, but more importantly, this time their visit was for Madelynne. My heart skipped beat after beat as they kneeled down to talk to Madelynne. She was quite shy and in disbelief when he asked to speak to her:

Madelynne is the best big sister I could have ever asked for Annabelle, but her road isn't easy. She is very sensitive, she's a quiet, delicate little girl that absorbs everything around her. Somehow though, she has never, once, ever complained about the attention her sister receives and she does not. I see it - my mommy heart breaks every single time I have both girls together and the focus is only on Annabelle, or even when I am alone with Madelynne and the conversation between me and another person is only about Annabelle - or when someone else kneels down "How is your sister Mady? Do you take care of your baby sister?" All these things are purelly genuine cares and sincere conversations from perfect strangers, family and friends - but Mady see's it. And she never complains. I remind her almost every day how much I love her and how important she is to this family, to her mommy and daddy, to her God and also to Annabelle. I find unique qualities in Madelynne that only she posseses and why I love each of them individually about her. But still - the parties, the benefits, the attention, the bracelets, tshirts, banners, conversations, donations, gifts etc are centered around Annabelle.

When the bikers kneeled down around Madelynne and looked deep into her eyes, my heart burst. For the first time, we've had 'motorcycle friends' come out for only Mady. They seeked and wanted to praise her for being so courageous, strong and loving. As a gift, they gave Madelynne a year membership to the Science Museum of Richmond for her to bring ANYONE she wants to run, play and have fun. This gift was to Madelynne (though Annabelle can also go, it's a family pass), and she deserves such a special gift and her own time away during the storms of Annabelle-chaos sometimes.

Another small update, AK and I have opened our doors to my sister and her two children that needed a place to live. Their situation is one in which we could not look past as a family, as Christians or as someone who is being SURROUNDED with love, support and prayers from perfect strangers that would do anything to relieve the burden to our family. How could we not open our doors to family - we do have the space (though we're running out.. lol), but we have enough love, faith and strength to get anyone thru a storm. Annabelle is stable and happy. Our family and home is full. Our doors are bursting but it's never felt more amazing. The gift to give back is priceless and more humbling than words can ever describe.

I asked Bikers for Christ to pray for us. They prayed. They prayed beautifully for our family, to help guide us down the future path ahead, to continue to fight for answers for Annabelle and continue to help her grow, thrive, laugh and smile. They prayed for continued prayers and support from everyone that surrounds us. They prayed deeply for Madelynne and all the strength she carries in this family, strength she shouldn't have to but strength she proudly shares with us all. Finally, they prayed for AK and I as we open our doors and expand our family, they prayed for my sister who is fighting a battle we will help her overcome. They prayed that the bursting love, patience and strength we have in our home will continue to carry us all as the days, weeks, months and years ahead unfold into the unknown future.

We are trusting in the Lord to guide us down the path we are destined to be on. We are grateful for everyone that supports and prays for us, without you, I don't know where we could get the strength and courage. Without you all - I don't know where we would be with Annabelle. She's truly a little miracle who has fought and been blessed to every stretch of the imagination.
Thank you , forever and always

Tuesday, August 25, 2015

God has a bigger plan

When you're delivered the news like we have with our daughter, inevitably you become flooded with emotions.. those emotions also come with bitterness. Alone in the dark depths of your parenting mind, you're mad, angry and heartbroken. You hate everything, you're mad at everyone and absolutely nothing anyone can say will break that pain. 

A phrase that cuts deeper than anything else, the phrase that I despise the MOST, "God has a bigger plan for Annabelle and we have to trust him."

My god also gave me a huge heart that swells with compassion, a brain that knows how to fight and intuition that guides my mothers instinct to protect my child. To tell me that my daughter is being tortured and suffering as part of a sacrifice for others and bigger picture - is insulting to all the powers I have as a mother to help her. 

Those thoughts will never change.

Today. Annabelle is thriving for the first time in her life. She's growing, she's talking, she's laughing and eager to learn. We are enrolling her into school when we never thought we would. She begins gymnastics and dance class this week. We are planning her FORTH birthday when doctors weren't sure we would make it to her second. During a whirlwind of four short (felt like an eternity) years, our family has grown and learned so much.

We are fluent in most medical conversations. 
We have visited more hospitals and universities than I ever believed. 
Annabelle has shaped our family into the most humble, christian, selfless family we could ever become. 

During the stormiest of days, weeks and even months, believe it or not - God was using Annabelle for a bigger purpose. Yes, now that the dust has settled, I can see it clearly.  

Without the long journey Annabelle has taken us on, or the hundreds of procedures she has endured - we may have never been able to help her and make her as happy as she is today. Had it not been for all those sleepless nights, her doctors and I may have never found the right answers on the internet at 3:30am. Without every. single. freaking. slammed. door, we may have never been led thru the threshold of Cincinnati Children's Hospital where they are saving Annabelle. 

Annabelle has made an impact on hundreds of people's lives. I cannot tell you the gratitude and joy that fills our hearts to hear each and every story that people share from Annabelle's inspiration. The ability to help other parents that may also be walking our similar frustrating path, is a gift that I never knew I could offer. To ease the pain, worry and frustration from another parents mind because I have been in their shoes is a priceless opportunity - one that Annabelle shaped FOR me. Annabelle is bringing awareness to a community that may have never heard of such diseases as hers. She is making new friends left and right and touching the hearts of people everywhere. Just recently we received a message from someone in Hawaii that reached out simply to say they were praying for us, although we have never met. Absolutely amazing. What a gift to touch so many - what a gift to show others what true courage, strength and love looks like thru the eyes of an almost 4-year old little girl. 

I believe Annabelle is healing. I believe her body is recovering from years of battle where her body tried it's hardest to give up but she simply wouldn't stop fighting. I believe we have finally landed the right doctors and team that are placing Annabelle's best interest and quality of life into forefront and will continue to fight for her continued progress. 

I do not believe we are out of the woods and I am not ignorant enough to think Annabelle will ever live a 'perfectly-normal' life by the textbook. She will always wear a feeding tube. She will forever be scared across her body from the multiple surgeries. Her GI system will forever remain frail and damaged from the disease. She will continue to undergo routine surgeries and biopsys every 16 weeks until who knows when. 

But when it comes to our families definition of 'perfectly normal', we are just about as close as we could have ever prayed! With the right outfit, hairbows and attitude - on the right day she has enough strength - Annabelle just may pass you in the grocery store or local park and you may never look twice at her differences from others. THAT is our definition of normal. A day when no one else notices her differences. A day when she doesn't feel different from her peers.

Tuesday, August 18, 2015

It's tricky

This special needs parenting thing.

Parenting in general requires arms like an octopus, heart the size of the world but armor over it the size of the Galaxy. 

Parenting special needs children i used to think was just an extension of parenting but the longer were in this game, I feel like we're in an entirely different sport all together. Or should I say, all alone. 

There are so many unspoken rules in this game:
  • Treat your kids like they're normal
  • Allow others to treat them differently
  • Don't judge others parenting because I have a special needs child 
  • Don't judge others special needs parenting because I have a normal kiddo at home 
  • Accept advice 
  • Ignore advice
  • Be your child's strongest advocate
  • Become to news reporter and marketing VP for the world on your child's latest update
  • Smile in public because you have so much to be thankful for 
  • Look defeated in public because strangers love to see you exhausted so their prayers are validated

The spoken rules are much simpler:
  • Research, find, campaign and fight for the best medical team for your child. 
  • Never take a single day for granted. 
  • Secure your families future, emotionally - physically and financially. 
  • Define, redefine and redefine again your priorities until you've nailed them down. Embrace them and then wash your hands of the rest.

It's tricky.. The amount of hats I am learning to wear and the amount of critical thinking it requires day to day. Staying true to who I am as a person despite the hat on my head at the moment. Remembering who my husband fell in love with and bringing her around time to time. Recognizing that just because my hands are full doesn't mean I have to sacrifice my best qualities (taking care of others, writing hand written notes to friends when they're on my mind, cooking a meal for a sick friend or spending my day off shopping with my grandmother).

It's tricky to stay in touch with the core of our family and balance the rest around it. Annabelle makes it so hard in so many ways.. It's tricky to remember to wear that smile. 

It's also tricky not to love it.
It's taken almost 3 years to come to terms with our life in the shape and form it's in today, but man is it special. We've come so far, Annabelle has beaten so many odds and shocked doctors in so many hospitals. Because of Annabelle we moved from our last home and had to relocate - as a result though we've found the best community waiting for us, one we may have never met if it weren't for Annabelle. Life is hard at times, hearing advice from strangers, being judged by family and friends or misunderstood by doctors - each and every time though, it brings our immediate family even closer than before. We are growing stronger by the punches that try to knock us down.. I couldn't be more grateful for anything than what God has given us in Annabelle.. It's tricky. 

Love it or hate it, this is us. A silly mommy, goofy daddy, too-grown-for-her-own-good Madelynne and loving-hateful-opinionated-fierce-Annabelle.