Avleigh's Journey

The first day of school is soon approaching. The first days of school are typically full with joy, excitement and feelings of pride in how much your little one has developed in his/her first few years in life. It’s a new milestone. A milestone that parents harp on and make really big deals about. We go out and buy the best first day of school outfits, make the first day of school boards and cry like babies when they get on the bus for the very first time. It’s a sense of departure that they are no longer our little babies anymore; leaving you feeling happy yet sad at the same time. I remember feeling all these emotions for Alyssa when she started pre-k, but the level of emotion that is tied with Avleigh beginning this new journey is overwhelming.

We began the prepping for school like all other parent. We shopped for uniforms that she would be most comfortable, and can’t forget cute, and we patiently waited at the mail to see who her teacher would be. Once everything started to come together to prepare her for this first year of school is when the reality of her being so rare can affect even the simplest things, like starting school. We’ve been back and forth numerous times trying to get medical paperwork complete and plenty conversations on teaching the school her medical history, safe positions/activities, her ways of communication and emergency plan. Doesn’t seem too bad does it? That’s what I thought in the beginning too.

We decided to go along this journey after very careful considerations between Jacob and I along with her team of specialist. You all have heard me speak a lot about quality of life over quantity of life. It’s something that we truly believe in. We want Avleigh to be as happy as she possibly can be. Although Avleigh’s disease has progressed rapidly in this past year, her health has been excellent. We’ve battled very little illnesses and the few that she had were very manageable. This was all due to the controlled environment we had her in at home. Visitors would only come if they were well and we have sanitizer at every entrance of the house. She’s non-mobile so it’s easier to control the things that she touches to prevent the spreading of germs even further. When we made the decision to let Avleigh go to school it takes all the control away from us. We will be letting her back out into the world where germs and colds are spread like wildfire. We’ve already been prepared to expect some type of illness within her first week of attending school. Our prayers are to help us to manage whatever illness she picks up so that we can keep her as healthy as possible.

So I’m sure you’re wondering why in the world would we be sending her to school when so much is at risk? It’s pretty simple… she loves being social and playing with other kids. She’s not the type of kid that wants to stay home and watch TV. She likes the interaction and one-on-one play. We truly believe that if she was able to communicate that she would not only ask, but beg to go to school! We are doing this to allow her to LIVE. Letting her live life how she would choose to do so.

And now is where things start really getting complicated. We’ve had Avleigh in this controlled environment for a year now. In this year she has not had any seizures that I felt would require a rescue medicine. This was a huge accomplishment for her. Prior to her being at home, her seizures would hit her pretty hard causing irregular stats and then she would be lethargic for 18-24 hours post. Pictured below is her last big seizure where we just so happened to be in the doctors office when it happened. During those 5-10 minutes her oxygen dropped dangerously low, her heart rate is extremely elevated and we watch my girl’s beautiful little face turn blue. We were lucky because I did have her rescue medicine with us when it happened; I never go anywhere without it…

So here’s my problem. Because we’ve kept her healthy and have not had to administer her rescue medicine in this past year, the school board policy says that this medicine that has saved her life before is not valid. Without this medicine, the incident above could have done some serious damage. The school staff has been right here with me giving me the best support they could possibly give, but so far I’m not winning the battle against this policy. Those that know me also know that I’m also not giving up. I’m just having a really hard time comprehending what logic comes with this policy for a medicine of this kind. It’s not regular medicine that will just expire and no longer be needed. It’s a medicine actively prescribed because we have no idea when and how bad these seizures will be. I have my opinions and could put blame in many places on how the system has gotten to be so political that they can’t even see that the protocol they are enforcing is putting my child further at risk. Pray for us!