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.

Thursday, August 6, 2015

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!

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. 

Sunday, August 2, 2015

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 :(

Thursday, July 30, 2015

Quick update

Things aren't moving very well. Annabelle is still unhappy and having more sad days than happy days. She is mad daily. This escalates when she is hurting, which is still daily. I do believe the new medications are helping her stay asleep at night although I don't think it's helping the pain as much as we hoped it would. She wakes groggy in the morning from the medication and by noon is complaining of pain again. 

Her lower GI is still not functioning any better. We still battle moving her stool on a regular basis and still supplement meds for that as needed.

I've been in communication with Cincinnati Children's as labs and tests continue to come back in.. Her metabolic levels appear to be within normal range (first time in three years). We will continue to repeat tests but based off these results, the chances of her having an Inborn Error of Metabolism is looking less likely (happy dance). We are still exploring an official diagnosis of Mitochondrial Disease (very sad dance).

The team is asking we return to ohio in October/November for the next round of surgery and tests.. I feel like we just got home and our next trip is right around the corner. Oh Annabelle is going to be so heart broken. 

One thing though is for sure. Answers for Annabelle has made the biggest impact on both our and Annabelle's life. She talks about it all the time. She mentions all the friends that came out to see her. She asks for her motorcycle friends on a daily basis. In fact, she's requesting a motorcycle birthday party! :)

We scroll thru the pictures often and talk about the event. She loves it when I wear my tshirt and tell her all about how much fun I had that day. (Which btw, we have a ton of tshirts and bracelets left over for a discounted price. Email me and let me know how many you would like a.bishop08@hotmail.com ) 

I am working on a post from Answers for Annabelle and will share some of our favorite pictures soon :)

Keep the prayers strong!  

Tuesday, July 14, 2015

Hour by Hour

I first want to apologize for not updating you all on how things are going. Honestly, we are having a tough time adjusting back into our routine at home since Cincinnati and it's taking just about all the energy we have. Our families first priority is one another, I know you understand - but I did want to apologize. 
Keeping you updated is very important to us, you are our prayer warriors, you are alive in our home just as much as we are, you love this little girl as much as we do and you deserve to know how things are going. Thank you for being patient with me as we navigate the waters since returning home.

A lot of my hesitation for updating is driven from the simple fact that I want to share good news with you! It BREAKS MY HEART when people talk to me about the blog that the first thing they said was "I cried the whole time reading" - I wish our stories and updates didn't bring you to tears. I wish you could read an update and smile and laugh.. I want you to laugh with us.. heck, I want to be able to smile and laugh at every update on how things are going with Annabelle too. The sad truth is that we don't have a ton of exciting and happy updates.. the painful facts are that Annabelle is in unfair pain, living thru hell, still without answers and heartbroken because she doesn't trust any of us. We try to find the silver lining in each day, we force the laughs and smiles but deep down - we are crying too. We are crying with you. I cry when I update.
I want to wait for only the happy updates on the blog, but they're just not coming our way right now..... so here goes it.

She. Is. Pissed.

Annabelle is still mad as a hornet. A year and a half ago we hired a nurse to care for Annabelle in our home. This provided us (me as mommy, mostly) the ability to step aside as the 'mean person' that subjects her to pain, procedures etc.. once our nurse was hired, it became her responsibility to change her feeding tubes thru tears, she is the one who administers most medications that taste nasty, she gives enemas and I am able to step in afterwards to comfort the tears. It has taken a year and a half for Annabelle to love and trust us again. We ruined all that work within minutes of stepping into Cincinnati Children's Hospital. Annabelle has directly associated me as the one responsible for all the pain she endured while we were there. Daddy was with us, and equally if not more, hands on during the painful processes - but Annabelle blames me.

I can process the blame because I know we were doing what is best for Annabelle. Two weeks later however, she reminds me daily that she is mad at me.. she doesn't like me very much.. she fights anything I ask her to do.. she gives me evil looks from down the hallway. It's heart SHATTERING to see yourself thru your daughters eyes as evil, a disappointment, a trader, not the comforting mommy but the liar that said she would protect her.

I don't know how to overcome this on my own. In our home, we try our hardest to stick to our guns on the rules and expectations for behavior. We have high standards for our kids, their manners, respect and minding. That being said.. we also weigh "pick your battles" on a daily basis. Annabelle has delivered us a flood of battles and they're getting harder to pick.

Case and Point
Annabelle demands with an angry tone. "IM HUNGRY! MAKE ME APPLESAUCE!"
I stare at her. Zero emotion. I didn't get mad at her or put her in timeout for the attitude.. I just stare at her and walk away.. trying to ignore all the anger she is demanding I hear in her voice.

Annabelle: Applesauce, PLEASE!

Me: Thank you for using your manners, but please don't yell at mommy - goodness it hurts my ears! Do you want a pink or purple bowl AnnaBanana?

Annabelle: .....pink.....

I made her applesauce and kept cleaning and moving about the house. Her attitude subsided when she began to eat. I had music playing and was singing like a goofball in hopes she would remember how silly I am and try to enjoy our time together. . . didn't work, she told me to stop singing because it didn't sound very pretty. (In her defense, she's right. Im an awful singer! lol)

10min have passed and I come back downstairs

Me: How's that applesauce? You just about done?

Annabelle looks right up at me. Looks back down at her bowl. Looks back at me and picks her bowl up. We have a stare off... I wasn't sure what she wanted or was doing, she didn't say anything.
She then lifts her bowl off the counter, while locking eyes with me and drops the bowl of applesauce on the floor. Splatter. Applesauce on the walls, cabinets, chair, floors, everywhere.
. . . . she marches away.

This is our life. She is so ticked it isn't funny. This isn't a 3yr old tantrum. This is a heartbroken, mad to the core child that was just tortured and feels like no one is in her corner anymore. This is a little girl that is filled with anger and doesn't know how to channel it.

She's putting us in these situations constantly. Her behavior is NOT allowed in our house. However, we are allowing her the space she needs to finish her bitterness. I hope we can figure out how to help her channel this anger. I hope she's able to overcome what Cincinnati has done to us and remember how much mommy and daddy genuinely love her. I hope she doesn't remember that the week before we go back to Cincinnati and repeat this hell all over again. :(

Since she isn't communicating well with us anymore, it's hard to gauge how she's feeling. She often tells us she is hurting but the conversation is short and is quickly dismissed by the time I ask her to be specific "what hurts baby?" The other night I watched her gasp in pain and scream to get the bubbles out of her stomach.. I hooked up her tubing and her stomach expelled 40cc of blood. She watched the syringe fill as fast as I did - she suddenly wanted to be done and get away. She knew that when I saw so much blood, that I would worry.. mommy's worry often leads to a doctors visit. Annabelle is happier to be in pain and home than a doctors to 'help' the boo-boo's. Fortunately, the bleeding stopped after 10minutes and I unhooked her and promised not to tell the doctors. We laid in bed together and watched TV. We didn't cuddle... but we laid in bed together (small victories).

We started her medication Monday night before bed.  We finally got the thumbs up from Cincinnati that her EKG was Normal and we may begin her new pain medications.

Beyond just hooking Annabelle to feeds, this medication administration was the first time I've had to do something with Annabelle's medical care since being home. It truly wasn't a big deal at all - I just needed to cut and mix the meds, hook up her extension to the gtube in her stomach, allow her stomach to expel any air then administer the medication, watch it, flush it and unhook the tubing. This is a very fast, quick process that we've done a thousand times. Unfortunately - when Annabelle saw that I was cutting a pill and pulled out tubes and syringes - she decided in that moment "This will be a battle I am going to fight". Within seconds of her seeing what I was doing at the kitchen counter, she lost her mind and ran upstairs to hide behind her locked bedroom door.

I headed upstairs after I finished assembling everything I needed: Feeding tube extension, 5ml syringe, 60cc open top syringe to vent, 5ml syringe with medication and two 10ml syringes with water to flush... paper towel and a lollipop.

Annabelle was hysterical in her room begging me to go away. This process was painless and routine, but her anxiety decided she wasn't having it. She didn't trust anything I told her and yelled louder than I could speak. It was a 5 minute battle of trying not to escalate the situation but convincing her that I wouldn't hurt her. I pleaded that she allow me to TALK her thru the process and I would let her do 100% of everything herself - I promised I wouldn't touch. After calming down, we sat in her bedroom floor together, as Mady encouraged her "Good job sissy! You do that just like a real nurse! You are Nurse Annabelle -hehe-"

I didn't touch her at all. She did most everything perfect. She probably only got about 75% of her medication bc it was messy, but the value of no tears, building trust and her doing it herself was more valuable than her getting 100% of the medication.

The girls played doctor upstairs as I cleaned everything up. When I walked downstairs, AK had poured me a glass of wine and waited with a hug because he overheard the battle from upstairs.

We are taking it day by day. Sometimes hour by hour. I look back and don't know how we've made it this far but somehow we have. I look forward and can't breathe because I'm not strong enough but I know I have to be. It's overwhelming. The past, the present and the future. Every minute is hard sometimes and it will break you if you allow it. Right now, the road is quite rough in our home.. pray that it gets easier soon so that we can remember how to laugh and smile.

I have to say before I finish this post. Allan and I must give most credit during the past couple weeks to Madelynne. Annabelle is furious with AK and I, but she isn't mad at Madelynne at all. Her sister is safe and Mady has taken her under her wing without judgements. Madelynne knows her sissy had a really hard time in Cincinnati, she knows why Annabelle is mad at mommy and daddy but she doesn't blame us like Belle does. Mady has been SO patient with her sister.. 10x more patient that she typically is. She is our method of communication some days.

Annabelle is happy with her sissy and Mady is content to play upstairs alone with Belle to keep her happy.
When we needed to give pain meds, Mady was right there beside Belle and making her laugh as I stayed several feet away just telling them what to do.
When I told Belle not to ride her bike in the driveway and Belle had a screaming fit - Mady turned their time into a game of tag in the yard and played bubbles.

Madelynne takes on a lot of responsibility as the big sister to a chronically ill sibling. We have never asked or expected her to take on that responsibility, it's simply part of her nature and spirit. I love that most about Mady. I love that she finds ways to help anyone in need, I love that she shares my heart to see when others are hurting and figures out how to help and make them smile. I love learning from my strong 6yo.. I love that she gives us so many reasons to smile during the day when it's easier to just fall into a ball and cry. Mady brings out the sunshine and spirit in Belle and our entire family, even on our darkest days. What a blessing... despite the despair, we are blessed beyond measure.

Pictures from Cincinnati