My ABILITY is stronger than my disability

Since returning from Cincinnati, our hearts and spirits have been quite down in regards to Annabelle and her continued struggle. For years we have fought and exhausted our energy into finding better doctors, treatment plans, solutions and strategies to help her fight and conquer this battle she's been given. We have done our work, to the best of our ability, we've given Annabelle what we believe the BEST we can give her... but to learn that the disease is still out of control, we still do not have a definitive diagnosis and she is still in pain, it's exhausting and disheartening. 

As parents, we will walk to the end of the world for our children, but what happens when you do and it still doesn't save them? 
What happens when you pray so hard and so long but biopsies continue to come back worse? 
What happens when you spend every dollar you have for the top-notch hospitals, care and supplies, but she still suffers? 

If you have the answer, please share, because we're lost and broken-hearted.


All we know to do though, is enjoy life. We are striving to make life as 'normal' as possible, in the realm of our 'abnormal'. Annabelle wants to play T-ball like the rest of her friends? Well.. we bought the uniform, daddy coached, and she played T-ball. Albeit, she spends more time laying in my lap on the bleachers or sitting on the bases because her energy is too depleted to run; but she wears the uniform and she cheers with her team.

Big sissy is joining the swim team for our second year in a row - Annabelle wants to learn to swim better too.. so, Annabelle joins swim team! Is it reckless? Nah, not too much. Swimming is a great sport for her. It allows her to exercise DIFFERENT joints and muscles in her body and takes the stress and deterioration away from her hips/legs. When she tires, and she does very easily, she goes to lay on the chair under a towel and takes a nap while the rest of her team swims.

Madelynne and Annabelle love being on the same team together, not many sports share a team for all ages but swimming does. They of course compete in different heats bc of age, but our Swim Meets are the same night, their uniforms match and they cheer on one another from the side of the pool. Annabelle enjoys swimming and she's great at it. She's a fearless 4 year old, FEARLESS, so getting her in the pool and teaching technique was a breeze. It's both the Bishop Girls natural calling.

 

Annabelle about an hour after a swim, she didn't have enough energy to walk much, so she couldn't do her next 'heat' in the backstroke. We spent the evening walking around the pool instead :)

 

Annabelle with her nurse, 'Ms. Pat'. The two of these beautiful ladies are simply inseparable.

 

Our goals, from this point forward, are to live life as 'normal' as we can within our constraints. To allow Annabelle to enjoy life to the fullest and to continue to surround her with comfort, love, compassionate friends and celebrate our small victories.  

SCHOOL
I have to be honest, this is a hard subject and pretty much the reason why I haven't updated the blog lately.
Without going into much detail, because I do love our Elementary School that Mady has attended for two years, but were struggling with their cooperation and our needs for Annabelle. Our initial meeting with the school left our family walking away with significant fears. They were clear that our nurse staying with Annabelle during school hours was not permitted and that they wanted to conduct all their own testing to determine whether or not she warrants a nurses care while at school. Annabelle has been thru a battery of tests, all her life, and the very first thing I told them is that it is my wish is to not have to put her thru any more than necessary..... we left and were scheduled for a total of 5 different series of tests and assessments to complete between then and August 1st. We've completed two so far...

My heart sank for Annabelle. Even during preschool, if you assess her academic skills, she shuts down. She tells you "she isn't as smart as her friends, she's stupid". I hate all those words and we try to curb them - but that is her 4 yo opinion of herself. If we can avoid another person asking her to write her last name on a paper, counting by two's and listing the months of the year - all to prove she DOESN'T KNOW IT, than I will. She's hard enough on herself in school, and the series of tests they're putting on her is already putting a bad taste in her mouth about attending Kindergarten.

Medically, Annabelle absolutely, without a doubt, cannot and WILL NOT attend Kindergarten without her nurse attending with her. The schools approach was to entertain the idea of using their nurse, or bringing on another nurse to help Annabelle .... that simply isn't a logical solution. Annabelle's nurse has been with her for 3 1/2 years and knows Belle like the back of her hand; realistically, she knows Annabelle better than AK and I. We pose too many medical risks to not have our nurse Pat by Annabelle's side and as parents, we will not take that risk. This is a battle we will fight or we will not continue to pursue the public school avenue for Belle.

Wish us luck on this journey friends. This is hard and I have prayed every day that God gives me the strength, patience and insight into the Public School systems mindset that we can reach a mutual agreement on what is best for Annabelle. I am at their mercy when it comes to making academic decisions for her in the classroom (IEP / 504, etc) but when it comes to Annabelle medically, I am a pitbull in a room - I've spent almost 5 years advocating for this baby and will continue to do so the best I know how. I just pray that I am able to articulate my concerns and wishes to them in such a way they understand our families perspective and goals and we are all able to find the common goal and best plan for Annabelle.