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."

Well. 
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.

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.

School with Annabelle

I never thought we would make it this far. We hired a nurse and asked her to love Annabelle when we couldn't be home. We kissed Mady's forehead and packed her backpack as she takes off for preschool / elementary school each year and the pit of my stomach has always known that I may not see those days for Annabelle. Education for Belle has remained on the back burner. Our focus is her quality of life, smiling, laughing and controlling her pain.

We blinked and look - WE'VE MADE IT ALMOST FOUR YEARS!!!

Me: Annabelle, let me hear you count.

Annabelle: 1..2..6..13..4..85..100! See mommy! I know my colors!
Me: Crap. AK, we gotta enroll this poor kid in school.

We're all changing hats in our house. Annabelle is getting the best care she's ever gotten in her life with the most knowledgeable team in the country. As parents, we are able to sit back a bit more and exhale - knowing that we do not have to be her full-time care providers, because we have a nurse - we dont have to fight with all our energy for doctors attention and help .. we can just be parents. Annabelle's outcome looks more promising than it ever has and our newest focus is paving the path for her to be as normal as possible moving forward. Our priority remains to keeping her pain managed, we will still have to travel to Cincinnati, Ohio every 4 months for surgery and the tubes and medical equipment she's hooked to will not go away. But darnit, it's time for this kiddo to fingerpaint and learn to share toys and stand in a single-file line!

Annabelle is the center of everyone's world. She's always mandated and gotten undivided attention, because let's be honest - she medically requires it almost every hour. For a while she rebelled, but now I think she loves the attention she gets. This is a problem.. one that we are struggling to balance. She DOES need our attention, but she also needs to know that she isn't our number 1, top priority. Teaching this is a double-edged sword... and it's hard!

So.
She's off to SCHOOL!

I had to find a school that is able to meet Annabelle's needs. A school that I am comfortable with their educational standards. Cleanliness. Patience in the classroom. Half day program and most importantly a place that is comfortable and accommodating to our nurse as she must be with Annabelle during school days. Oh yea, and a place we can afford.

We've found a great school and I am so excited for her to start. She is beyond thrilled to have her own backpack like sissy. She wants to go school supply shopping and keeps talking about all the friends she will make in her 'kool'.

I am ecstatic for her to take a backseat on the attention scale - for her to be forced into sharing her toys and attention and someone else to make her sit at a seat and listen. Oh, I - Cannot - Wait!

There is a lot more of the paperwork process and conversations that I need to have with the school and Annabelle's nurse, but in the meantime - I just wanted to take a few minutes to share our excitement.

We've made it almost four years. We've made it to the point we can enroll Annabelle in a school. We've made it on our journey so far that her laughter and living is in full swing and we can safely try to raise her as a normal little girl.
I cannot believe we've made it.
I cannot believe how strong this kid is.
I cannot believe all these prayers have been answered.
I cannot wait to see what the future holds. 

Medication was a fail

I am heartbroken to say, the medication does not seem to be working as well as we had hoped it would. Annabelle's pain is not lessening and her temperament and behavior is becoming more and more out of control. She is constantly angry, frustrated and mad at the world. It isn't only mommy and daddy any longer, she is mad at her friends, her toys, her bed, everything. In the midst of her behavior and frustration levels being thru the roof, the pain increasing is only adding fuel to the fire.

I called Cincinnati and have left a message with our team. I pray they are able to get back with us soon. We made the decision for Annabelle already though, that we are not going to use the medication any more. Hopefully we're able to come up with a better plan and possibly a different cocktail than what she was just taking.

In an effort to make her happy and bring a smile on her face, we surprised the girls with a trip to Water Country this weekend. Annabelle slept until 9am and once we dressed her and put her in the truck, she went back to sleep. She was mad at the water park. She swam for a few short minutes but then cried to be held for the next hour and wanted out of the water. We pushed her a lot in the stroller and she watched Mady ride rides because she said her tummy hurt too bad to play. It was a really hard day and we immediately felt guilty for bringing her once we realized that even a water park wasn't going to make her 'feel' any better. Sometimes distractions are a great thing and sometimes the pain is just too heavy to distract away. I felt awful that she was in the sun and watching other kids play as she sat in pain, depressed, frustrated and sad... sad that she can't do what all the other kids her age are doing. She managed to play for a short amount of time but after a few hours, I just couldn't take it any longer. I packed our things and barked the order "Pull it together Bishop Family, we're going home."

As soon as we were in the truck to go home, she fell asleep again. Sweet baby.. we drove East, heading towards Richmond when I remembered that I promised Mady I would buy her new sneakers for school. We went to the outlets and found a shoe sale - Mady picked out an adorable (super fast running shoes, apparently), meanwhile.. Annabelle also found her way down the aisle to the glittery - light up - Frozen sneaker, section. She came running to me with the biggest smile I had seen her wear in weeks "Look mommy! New sneakers for MY school TOO! Just like sissy!!" ugh, rotten rotten kid. Yes. I bought those too. How can you say no??

We made it home and she was much more comfortable. She crawled in my bed long before the other kids did and she fell asleep while watching "Bo on the Go!". The medication isn't quite out of her system, so we're crossing our fingers that once it's out, we can begin to get our little girl back again. As for her pain management - I am praying with everything I have that the doctors can give us another option. I hate seeing this poor baby suffer :(