Sunday, February 7, 2016

Weekend family time

My heart is already breaking about having to leave my family tomorrow morning and travel back to the hospital with Annabelle. We're trying hard to paint smiles and happy anticipation about the trip, especially for the girls. For Annabelle, were focusing on the fun plane ride. For Madelynne, she gets to sleep in my bed with daddy since I'm gone. They're both excited little girls. Meanwhile, AK and I are sulking .. It just stinks. 

Friday was a busy day. Annabelle and I spent the entire day together, we had errands, doc appointments and lunch dates to attend. She took selfies while I met with doctors... 





Friday night we decided to forgo the bedtime and cut loose with friends, neighbors and cousins. We had dinner out and enjoyed our favorite local band, The Dave Tinney Band! Annabelle enjoyed messy chicken wings, and when she asked daddy to dance, he couldn't resist :) 





The rest of the weekend has been lazy around the house. Lots of cuddling, giggles, cleaning and procrastinating. Between church and random trips to the grocery store, we've just prioritized spending alone time with one another. We're watching the Super Bowl tonight together, AK is working on the chicken wings while I have buffalo chicken dip and beer cheese on the counter. The girls have a bet going on over who's going to win, who will make the first play, the half time score etc. 

At some point, I will convince myself to begin packing. I don't want to at all.. Instead, I've checked in for my flights, confirmed the hotel, and scheduled the shuttle to pick us up from the airport. . . See, I'm being productive ;) 

Annabelle is upstairs playing with sissy and soaking up the time with her. I adore how much they love each other. Annabelle is so very blessed to have a sissy that loves her so much. They'll be lost without one another until Wednesday! 







Tuesday, February 2, 2016

She deserves a life free of pain!

A week away from more appointments, which we pray leads to more answers and much more help for Annabelle. The coordination for these appointments have been exhausting, but I am grateful they're coming together. Each and every one of them are essential to finding answers for Annabelle.







Next week lineup includes 5 appointments:
  • Neuromuscular - we will discuss Annabelle's fatigue and weak muscle tone. Annabelle struggles to run or play like other kids her age. She tires so easily and finds herself in more pain than she can manage by just spending an hour trying to play with her friends. Her legs and hips are extremely weak, she says "they're sleepy".. Her finger grasp is weak among other things that doctors have noticed (thus our referral to see Neuromuscular). The main reason for the visit is pain. We have visited many doctors over the years that have struggled to understand the root cause of Annabelle's chronic pain. We have trialed drugs and therapy's with no luck. The persistent pain prevents Belle from getting rest, which then leaves her exhausted and sleep deprived. It's a vicious cycle that we pray we find a doctor to understand.  


  • Rehab - This appointment will correlate with Neuromuscular's. We'll visit rehab to discuss her physical limitations, exhaustion, fatigue and pain. Beyond the neuromuscular side, I am hoping we will discuss strategies to improve her strength and mobility.


  • GI - Annabelle's lower GI is getting worse day by day. Her BMs are excruciating with no consistency that I can notate for the doctors. She has either watery stools that she cannot hold or hard, large stool that she cannot pass. We're giving enemas, medication and supplements that are not helping. She complains DAILY about her tummy hurting. Annabelle's crying in pain isn't new to us or her, she has suffered in pain all her life, but the older she gets the harder it's becoming to hear her cries. She is so specific to how she feels and what's happening, hearing her tell me there are pokes in her stomach and sharp chips stuck in her throat (difficulty/pain swallowing) is hard to hear. I always thought that by now, I would have been able to at LEAST find pain relief for my baby. I haven't found answers and she still suffers. We feel every.single.day of this disease and not a day gets easier.


  • Sleep Clinic - I'm looking forward to this visit the most. Annabelle' sleep deprivation has caught the attention of multiple doctors. Her lack of sleep and rest has an impact on her entire body's ability to function properly.. including ADHD, pain, GI function, neurological function, motility, strength and energy etc. The Sleep Clinic will assess Annabelle and help us determine which tests we need to perform, whether that be a sleep study or additional procedures. Just last night alone, Annabelle was awake at 11pm, 2am and 5am. She woke for the day at 645am and laid in my bed with little color or energy to even speak. She doesn't rest or sleep well at night. But she falls asleep during passive activities during school and prefers to nap while her friends play during recess. Anything but a normal 4 year old.

  • Neuropsychological Evaluation (follow-up) - This is the follow-up appointment that I had to cancel in December. I'm grateful they allowed us to reschedule. The Neuro-psych Eval took all day to complete as Annabelle worked with some of the most highly skilled Psychologists and Psychiatrists. The final report confirmed a diagnosis of ADHD and chronic anxiety and depression. My heart still aches hearing and saying those words. I plan to bring a notebook and fill every page of notes as I meet with this team again to discuss my baby girl and ways to help her cope with all her life's challenges. I knew it all along, but it hurts to hear from a doctor that my baby is clinically depressed and suffers from anxiety. The ADHD is a battle we will learn to adjust and work into our lives, but her suffering little heart and soul that is being defeated by this disease - that's something I just cant bear.


We have kept ourselves busy the last couple weeks. Between the snow storms and getting settled back into school, the girls have stayed busy and making memories. Our church is participating in a food drive that collects a specific list of foods, bagged together and will be distributed to children. It will feed them for an entire weekend! Despite our families struggles, we try to inform our girls of less fortunate people in the world than us. We may not have everything and Annabelle may be very sick, but each family has a struggle all on its own, and some kids don't have any food to eat! The girls were very excited to participate and help shop for the food and snacks, and then one by one, they filled their own bags for the kids, tied them in a knot and pleaded to take them to the church right away. While daddy got dinner started, I drove the girls to our church, Atlee Community, and we dropped off our donations. It was a proud moment to watch them carry their bags with pride to help another child in need.







On the other side of things, we have worked very hard at encouraging Annabelle to eat more. Her appetite is slowing improving, but her little body is not catching up. Her energy is still too low, her endurance is pathetic and her pains are increasing.






Her favorite past times are becoming less "dance and have tickle fights" and more "mommy can we snuggle in your bed?" We do a lot of snuggling. Annabelle and daddy do a lot of snuggling and watching TV. Last night for example, the girls grandma came to visit - Annabelle disappeared constantly to go back upstairs to lay down. She pulls herself away from people when she hurts the most. I was finally able to encourage her to come downstairs and dance the song with us, but she only came down and sat in the middle of the floor to watch the other kids. As soon as the song was over, she went back upstairs to lay in my bed.




I know our days to finding answers and helping my baby are getting closer, I do believe that with every step, we are making strides in the right direction. But I don't understand or have patience for the suffering that my baby endures in the meantime. That is the part we struggle to understand. Annabelle is a warrior, she is so strong, loving and tough - but darnit she shouldn't have to be. I am tired of whispering in her ear "be strong sweety" while a nurse begins another IV and we all pray she can work around the mounds of scar tissue in her arms. I am defeated by the amount of times Annabelle tells me "I don't want to hurt anymore mommy, I don't want to have boo-boo's in my body." I am weak in the words that console Mady's fears, "Mommy, why is sissy so sick and not getting better?"


The road for answers is so much longer than I thought it would be. I knew it would be bumpy with twists and turns, but I didn't know it would be such a gruesome march, with more set-backs than leaps forward. I didn't know it would hurt and tire us down to the point we can no longer think clearly. I do know though, that Annabelle is still and has always been worth the fight. I do know God has blessed our family with prayer warriors and more friends that have become family in our fight for answers, and we are forever humble and grateful for them. I do know that Annabelle has touched the lives of more people in her 4 years than I ever could. We are blessed and thank God every day for those blessings. But we are also so very tired and praying for our answers and relief for Belle soon. Our entire family deserves a chance to exhale and enjoy life without living on the edge of worst-case-scenario's. Our family deserves a vacation that doesn't consist of fun outings between trips back to the hospital in Cincinnati. Annabelle deserves to be able to run, laugh and play like every other kid her age. She deserves to live a life free of pain. And damnit, she deserves a cupcake to celebrate it!














Thursday, January 21, 2016

Attitude Central


Annabelle is ripping and roaring with personality and attitude. She has an opinion about everything and while it makes me want to pull my hair out, it also makes my heart burst with joy. She’s so full of life! She’s happy for the most part, but when she’s mad, she’s mad. We are working really hard on how to help her cope when she’s frustrated and what those feelings are like. She isn’t processing them very well and it comes out as very spiteful behavior. I look forward to meeting with Behavioral Health when we return to Cincinnati in a few weeks. Her focus is nearly impossible to manage, her attitude and thought process is so different from any of the kids in our home that it makes for some very frustrated days in our house.


Her energy levels are depleting, to a scary level that is definitely causing concern for us and her nurse. I don’t know if this is because of her current nutrition (she’s eating better but still very littler, therefore we are tethered to her feeding tube for most the day). When dancing or playing at home, she gives herself about 5min to jump around and immediately afterwards, she wants to lay down and ‘relax’ so she tells us. In school, during gym class, she will run or skip with her friends but can never finish the short exercise without walking herself alone to the bleachers to lay down. These are everyday fun, 4yo activities that all kids her age are able to do, and Annabelle can’t even keep up with skipping before she’s too weak to stand. I don’t know if this is accompanied with pain, or just tired, weakness or what – Annabelle won’t tell us these things. She just has to lay down and won’t move for a very long time. When she gets back to the classroom, she’s exhausted. It’s things like this that worry me about school and how well she will do when she enters Kindergarten. The closer we approach our next visits in Cincinnati, the more questions I have for our team. I am so grateful we will see NeuroMuscular and Rehab when we go. I hope they can address what this is all about with her joints, muscles and energy.


Regardless though, we have a snow storm here to watch out for. The kids are so excited to be able to play in the snow and I am looking forward to it for them. Last year, Annabelle was only able to withstand about 30min before she couldn’t walk, stand or maintain much consciousness. When I brought her inside, her temp was 94 degrees and took me the rest of the day to warm her little body back up to the point she could begin to walk and run around again. This year in the snow, she will have to pace herself – maybe 10min here and there until we can define how well she’s balancing her body temperature. She wants to make a snow angel though and have a snowball fight .. so we will do our best.

I hope everyone that is in the line of this snow storm is safe and is able to enjoy it as much as you can!

Friday, January 8, 2016

Let 2016 Begin

The holidays are over and Annabelle's heath problems gave us no time before throwing us right back into reality.
  • Final reports arrived in the mail
  • Strep throat
  • Battling weight
  • Scheduling next visits

Christmas Eve I received the Neuropsychological Report from Cincinnati Children's.. we wanted to enjoy Christmas so I pushed the envelope to the side. Once the girls were asleep, I opened the report.

Christmas night I sat in my bed with the heaviest heart. AK watched the sorrow stream across my face and he poured me a glass of wine and ran a hot bath. I flipped page after page of the report, speechless - sometimes chuckling at their findings "Annabelle was somewhat competitive, regardless of what the activity was, comparing what we were doing." but then my heard shattered at other statements. Paragraph after paragraph, page after page I read a medical report that detailed all the neurological concerns that physicians have about my daughter. They evaluated her on Intelligence, Academic Skills, Verbal / Language, Visual Perception / Construction, Attention, Fine Motor and finally Emotional / Behavior / Adaptive. In some areas she did ok, such as Verbal / Language and Intelligence - but the gut ripping ones, she scored Considerably Low / Low Average / Borderline Impaired.

Findings of the Evaluation
  1. Annabelle has significant emotional adjustment issues, most likely related to impact of medical issues on day to day life. She shows signs of both clinical depression and anxiety.
  2. She is showing signs of chronic sleep deprivation, which is likely exacerbating her attention and mood difficulties.
  3. Confirmation of diagnosis of Attention-Deficit/Hyperactivity Disorder - combined type.

Every day we recognize Annabelle's medical issues. They are so blunt in our home, our lifestyles, our bank account, out routines and even our love. There is no secret this child is fighting a bigger battle than most. On the surface she wears scars of medical procedures that we hide with adorable clothing. In our home we lock the medical closet of all her medical supply (partially because it's dangerous, also because we don't want to look at it constantly). But deep down, our parental focus is on her little 4 year old heart. When the world judges our baby from the outside, we loose sleep over what is happening on the inside. We fight every single battle in front of us to determine what is happening to her body. For years we have shuttled her from one hospital to another doctor to another state and back, all to find answers for Annabelle. We have come so far and are finally making huge strides... and then it hits you - while we were learning so much about her little body, we overlooked how this is destroying her mentally and emotionally.

My baby girl is clinically depressed.

Let that sink in.. think about your son or daughter, 4 years old, full of life and no worry beside whether or not you cut the crust off their sandwich or if they see their favorite toys in Target and you won't buy it. They verbally beg you for a tickle fight before bed and wake you in the morning for cartoons and cereal.

Now imagine a doctor just told you, "Because of everything Annabelle has experienced and been subjected to medically (aka, all the appointments I've scheduled and taken her to, all the needle sticks I've held her down for, all the procedures she has PLEADED I not make her go thru), because of all that - what is supposed to be your wide-eyed full of life baby girl, is Clinically Depressed and suffers from intense anxiety (ie: 5 screaming, dry-heaving meltdowns between Richmond and Cincinnati on our last trip.. meltdowns that finally turned into submission where she just didn't care and wouldn't speak as we carried her into the hospital for them to begin IVs within the hour we walk into the hospital and perform tests).

We fight to repair damage that is being done from her disease and march to the top of the mountain for answers, all the while we are destroying our daughter and stripping her from the happiness she is supposed to experience as a little girl.

I write this though as if we are intentionally hurting her. I do know, realistically, that we are only doing the best we can for Annabelle. Our hands are tied and if we want to save our child, we MUST fight this fight. But the parental guilt that we feel from all the repercussions of our pursuit for an answer, is hard. It's heavy, ugly and painful to recognize what you are doing to your baby. It's infuriating that this is happening to her! It's infuriating that we have been put in this position! It's absolutely, nauseating, to read the truthful and honest words written from a team of doctors about our child.


It has taken me two weeks before I read the words over again. I threw the report to the side and didn't want to acknowledge it. "They're full of sh!t to tell me my child has ADHD, suffers from depression, anxiety and is borderline impaired on how she emotionally handles things." ...

Now let's jump ahead a few weeks: 
I took Annabelle to Madelynne's school today to surprise Mady for a lunch date. We stopped and ordered Chick-Fil-A and then waited in the hallway at school for Mady's class to walk towards the cafeteria.



We sat down at the table and all began to talk. The cafeteria filled with more and more classes and soon, every table was full of kids talking, laughing and playing. Annabelle wouldn't eat (our next topic, later). Her eyes were huge as she snapped her head back and forth. Within 15 minutes, she was covering her ears, humming and crying with tears pouring off her face, "It's too loud mommy! There are too many friends in here!" (I told Belle we would be going to sissy's school to see all her friends). We had to pack up and leave. She absolutely couldn't handle all the noise and chaos of a lunch room cafeteria.

I believe a lot is going on when it comes to how Annabelle handles life circumstances. I do believe sleep contributes to her emotional behavior, as well as many other things. I know she has been subjected to some of the most painful medical procedures and watched loving people hold her down for them, the trauma in that itself is enough to cause emotional damage. We trust Cincinnati Children's Hospital though and we pray they recognize Annabelle's struggle and that they are putting in place the best plan of care to help her thru this. 

Many, many other things were mentioned in the report. They provided us with multiple resources that AK and I can use to help Annabelle and our family adapt. Next month, I will sit down with the team and we will revisit this report yet again, discuss their findings and outline how we will help Belle. I don't even want to think about it until then. My mommy heart is too broken. 

SICK
Christmas was tricky for the entire family. Everyone was either snotty, coughing, feverish etc. I guess that's what happens when it's 80 degrees & July in December!   The week after Christmas, Annabelle continued to decline to the point I just knew she wouldn't be getting any better on her own. We spent our New Years in Patient First. She had strep so we began antibiotics - 4 days later her fever FINALLY broke and she seemed to turn the corner. For nearly two weeks though Belle has laid on the couch or our bed, sipped her cup and refused to eat anything. If she gets up to play or run, she finds herself in such a terrible coughing fit that requires us to vent her stomach via gtube and then she crashes. Hard. And sleeps for hours all over again. She's been miserable but I am happy to report she's back to her usual, raising hell and playing Shopkins with her sissy. 

LOSING WEIGHT
Over the holidays, Annabelle's attitude and behavior has shifted to the point she fights everything in front of her. From using manners, using the potty, all the way to eating. Yes, despite all her curve balls, she now refuses to eat. We have prepared every meal we can possibly prepare. I have bribed her past the point I am proud to admit, still she refuses to eat. Today I was told "I don't like chicken anymore and never did!". Um, ok? not eating is probably a short battle that every parent faces at one point or another.. But for Annabelle, not eating or meeting her caloric needs = health spiraling out of control, seizures, impaction, etc etc etc. There are mountains of concerns when it comes to Annabelle and how intricately we balance her diet.. defiance is not really factored in. 

Therefore, after a month of pleading with a 4yr old - we are back to tube feelings. She is being tube fed for about 95% of her daily nutrition at this point. She's ok with it, unfortunately. We are still encouraging her to eat on her own but right now, we are playing with fire to leave her responsible to eat enough.



Back to Cincinnati!
We have our next appointments on the books. We are scheduled for 5 appointments, February 8th & 9th.

  1. Neuro-Psychology followup
  2. Neuro-Muscular 
  3. Physical Rehab 
  4. Gastroenterology
  5. Sleep Apnea Clinic
Annabelle and I are flying alone and have already purchased our flight tickets. I am not looking forward to this trip, it will be incredibly fast, overwhelming and a FLOOD of information for both Annabelle and I to navigate alone. But it will be quick. We will fly Monday morning, have two appointments that afternoon. Hotel for one night, three appointments Tuesday and fly home late that evening. Then we get to return to work and school Wednesday. I am already exhausted ;) The benefit though is that we don't miss too much time from having to travel and we save a ton on hotel costs etc. Our flights were only $181 each! I was so happy to score such a great deal, it makes the trip a little easier to accept. lol.


We want to thank you all for your continued prayers for our little girl. Thank you for your love, generosity, thoughts, well wishes and commitment to following Annabelle as she fights for Answers. Thank you so very much. Our family is blessed to have you part of ours, we are blessed to be surrounded by so many loving people who enjoy seeing Annabelle laugh, learn and grow just as much as we do. Thank you, with all my heart. We wouldn't be here and Annabelle couldn't have made it this far if it weren't for your prayers. We are forever grateful for you. Thank you.

xoxo


Wednesday, January 6, 2016

Happy New Year

Ours was spent with our girls as Annabelle coughs her little head off and wretches to the point I am certain she's going to hurt herself. Happy New Year. Cheers to another year of soothing our baby and praying things get better before they get worse.

She primarily has a cough. But for a child with very little immune system, and an auto immune disorder - her simple cough can lead us down many different roads. It's been going on for about 5 days now. Yesterday we began antibiotics after a trip to the docs confirmed strep. 



Today she's the worst than she's been so far. Her fever is staying in the high 102/103, she cannot stop coughing and wrenching (coughing to the point you sound like you're going to vomit.) Annabelle can't, her stomach is sewn around her esophagus so snug, if she vomits, it'll tear open and we'll be in a world of an excruciating mess. She won't eat anything more than a bite of something and all she had the energy to do is lay on the couch and move from one spot to another. She's is pitiful and worrying me.. I need the meds to give her a break before we begin sliding downhill even faster. 

Say a little prayer for this kiddo when you go to bed tonight, please. 








Tuesday, December 22, 2015

Thank you for our "Merry Christmas"

Our church service this past Sunday was especially touching. We haven't made it to church the last few weeks as much as we would have liked. If I am being especially honest, the closer I am becoming to faith, the harder it is to comprehend and feel. I cry every Sunday. It starts the moment I walk in and take my seat. The music begins and tears fall. The message, no matter how personal it may be, always resonates with me and pulls my heart strings to a point there is no stopping the tears. It's an uncomfortable sense of relief to attend church on Sundays and feel the love God has for us, to a level that even the presence, music and songs, everything, shout a message to you that brings you to tears. Our family has suffered struggle this past year, and more over the past few months ... to the point it just seems that church isn't where I wanted to find my escape and relief from it all.


This past Sunday though, delivered a message that we needed to hear and grounded us all over again. It reminded us that regardless how we are coping with the holidays, that we are not alone and church isn't the thing to push away. The message that I walked away with was simple, "Not everyone has a 'Merry' in their Merry Christmas". Some may have a 'Sad' Christmas, 'Hard' Christmas, 'Lonely' Christmas.. and while the holidays are happy, celebratory times for most, remain mindful that isn't the case for everyone. It's hasn't been the case for our family every year. Two years ago, I was so heartbroken over what Christmas was for Annabelle that I took down every single Christmas decoration the evening on Christmas Day and packed it all up and didn't want to ever see it again.


We are in a better place this Christmas than we have been in the past, but those feelings of pain, sorrow and sadness still linger and remind me of years past. We have more 'Merry' in our Christmas than ever before and it's a wonderful feeling. But to measure the amount of excitement and joy we have, also comes with recognizing where we have come..


Each year as I pack away Christmas decorations, it becomes symbolic - I think of where we will be next year when I open all these decorations, or light the tree or hang the stockings. I think about where our family was last year when the stockings were hung and our home flickered with lights. Every single year I say a prayer of wishes for myself and my family, that next year we are blessed just as much as we were this past year - but please, please help us to have gained answers by this time next year for Annabelle. Every Christmas season, I hope to open those red and green boxes and reflect back "last year we were scared and helpless - this year we have all the answers we need! Boy how far we have come, what a wonderful year it was!" ..... we still aren't there, but we are closer. I believe this year was the first time I felt accomplished in our stride to getting answers for Annabelle. So much has happened in 2015 that it would be impossible to feel like it was another year wasted and just buying time. Therefor, this Christmas is being celebrated as big as we can with one another!


If I told you how big our hearts are this season, you wouldn't believe us. This will be the first year Annabelle can truly enjoy Christmas. Until now, all her Christmas's have consisted of laying in her own bed while we open gifts - laying on the floor in our laps because she cannot keep her head up or crashing the moment gift opening is done and being in so much pain she cannot enjoy the rest of her day. She doesn't remember Christmas, she doesn't know the fun it will bring but she has seen movies and we talk about it daily - so she's excited. And our hearts are bursting with love and excitement for her!!


We are making Christmas cookies (even though she cannot eat them), we are decorating trees, hanging lights and making Christmas cards for friends. We are smothering ourselves in the Christmas spirit and loving it. We hope you are too. From our family to yours, no matter what you are going thru.. the heartbreak, suffering, loneliness, pain, joy, excitement, relief.. our family wishes you a bit of Merry to add to your Christmas. We wish you peace, love and joy - even if it's hard to find. We thank you for giving us all those things. This Christmas, our family thanks YOU for giving us the Peace, Love and Joy we have prayed for.. all the years of hoping our answers would come, all the years crying on Christmas night because our baby is suffering, every year packing decorations and hoping the next year is better - we thank YOU for your prayers for our baby girl and for making this Christmas season as bright as it can be. We hope you can enjoy yours the same. Amen.





Friday, December 4, 2015

Home from Ohio





It’s that time of the year again.. the time where you dig just a bit deeper to find the joy and blessings in things that surround you. We are blessed, beyond belief, our family has been blessed by the love and miracles we have seen this year in Annabelle. However, below that joy and excitement, is an underlying reality – that we still struggle. We still cannot manage pain. Annabelle still cannot be a normal little girl and we still don’t have answers.



Last week, the day after we got home from Cincinnati, our family was in pieces. The girls were struggling to adjust back to home and routines. The house was a mess from unpacking. Above all, our family was mourning the loss of a very very loved family member. We came home last week broken from the news we received in Ohio, the news we received about our uncle and the disarray of everything in between. We were moving 100mph with no slowing down in sight.. and then the clock struck 6:30pm on a Sunday night when all I wanted was to crawl in pajamas and go to sleep.. we had an obligation at a nearby church. A neighbor was hosting a concert at the church for Annabelle. We were all so tired, but we put on our winter jackets and pushed our way out the door.


They met us in the foyer of the church and escorted us towards the chapel. Annabelle was hesitant for why we were there (this church is also her preschool during the weekdays). The moment we turned the corner into the chapel, I looked up and saw my baby girl on the massive projector… it streamed pictures of Annabelle and her journey. As quickly as each picture would display, I would remember every moment from when that picture was taken – the cries, the laughter, the worry and fears, the weather outside that day.. the outfit she was wearing. I couldn’t breathe, it was as if the air was taken directly from my lungs as we slowly walked down the aisle of the church and everyone turned in their seats to watch us enter. The last time I felt that way was on my wedding day.. walking down the aisle as everyone watched with a smile, only this time, we walked down a aisle and floods of people assessed our every move. They watched intently at Annabelle, immediately noticed her face mask I am sure, they watched as I carried her down the aisle and AKs hand held my shoulder. Mady was happy to walk ahead of our little family and she choose where we would sit. I sat down and still couldn’t breathe.

Our friend, neighbor, opened the ceremony with a  testament of our family and how much we have made an impact on his. He spoke on when he first heard about us.. and by heard, I mean he HEARD a stampede of motorcycles cruising past his house, the Guilty Ones, to come visit Annabelle. He and his wife came to Answers for Annabelle, they brought her the biggest fun butterfly balloon and made the event and our return home from the trip, so very special for Annabelle and our family. They haven't let us go though, they continue to shine light into our family just as we try to do for theirs. Hearing his words though, rang so deep into my soul that the tears were impossible to stop from falling. 95% of the time, I am the one speaking about our family and journey, I am the one that is forced to explain how things are progressing, our history, our challenges and hurdles - but this evening, he did it for me. He did so in a way that shined light on our entire blessing that Annabelle has given us... and then they played. Oh boy did they play music. Every single song was picked directly from my heart, I know it was, every song was perfect and meant something else to our family. The girls flipped thru magazine pages, they clapped their hands. Not long after beginning, Annabelle had to lay down because she wasn't feeling well. She cried and pleaded to go home - but she hung in there. On even her weakest days, she is strong.