Fighting

In this life there is a lot of fighting. Fighting over land, over food, over water. Fighting amongst families. Fighting in politics. There is just a lot of fighting.

As a parent of a child with a chronic medical condition, everyday is a fight. Even before Type 1 we were fighting. Jack has ADHD and ODD. If you don't know what ODD is, it is Oppositional Defiant Disorder. I know that explains nothing but it also explains everything. It is exactly what it says it is. Basically what it is is that Jack has a hard time controlling his temper and can be disobedient and defiant. We had to fight for a correct diagnosis. We had to fight for appropriate therapy. We learned that he had a speech impediment so we had to fight for the speech therapy.

The worse part about all of is the waiting. Waiting for results. Waiting for doctor's appointments to be scheduled. Waiting.

Then came school. That is a whole other level of fighting. Kindergarten was rough. ROUGH. One of the main reasons it was so tough was a personality clash between the teacher, Jack and us. Communication was greatly lacking. We, as his parents, were fighting for what was best for Jack. We wanted him to succeed and continue to love school. We made it through kindergarten.

One year later, we added Type 1 diabetes to the list of things going on. We also added another level of fighting. This level is one that I wasn't fully sure that excited. Within one week of learning of this life changing diagnosis, I was on the phone with a doctor at Duval County Public Schools being told that I had to move Jack from the school that he loved to another one that was chosen for me. That's when Mama Bear came out. For those of you that are not fully immersed in the world of chronic illnesses or children with disabilities, this is against the law. You can NOT be told or asked to move your chid to another school because they don't have the means to care for them at the current school. There are NO full time nurses in schools in Duval County. The only full time nurses that are in the schools are there because they have children with disabilities at that school that require them to be there. I spent the week of diagnosis and the week after fighting with this doctor to get a nurse at Jack's school. He very much did not want to put a nurse there for a myriad of reasons - cost, they didn't have one, etc. Much to his dismay, I told him that I didn't care about his excuses and that Jack would be going back to his school for the last 3 weeks of school. Two days later, I received a phone call back from that doctor telling me that a nurse would be at the school for the last 3 weeks. Small victory but the fighting wasn't over for the nurse. A month before school started for the 2nd grade year, I called back to that doctor to make sure that the nurse would still be there the first day of school. He started once again telling me that I needed to move schools and they couldn't guarantee me a nurse. Again I fought and again a small victory.

In this life of constant fighting we must take the small victories when we get them and celebrate them. Keep those in the back of your mind when you are fighting. They help you to remember that the fighting is all worth it. Only in the last 2 years have I truly remembered this. My husband and many others tell me very regularly that all of the battles that have already been fought for have been for a purpose. They tell me that I am paving the way for other kids that are coming behind Jack. Not just at school but with insurance companies and doctors.

Parents with kids that have chronic illnesses are always fighting for what their kids medically need. I have fought for insulin (which is a MUST for Jack to live), for an insulin pump (which is the current battle we are fighting), for testing supplies, for good doctors, etc. Let me say this, it is exhausting and frustrating. I am going to be totally transparent. I don't want to paint this picture of it is easy and that I sleep well at night because I don't. All of this fighting is hard but I hope and pray that Jack is seeing it and seeing that his parents love him. I also hope that he is learning resilience and to never give up.

If you are fighting something in your life or in the life of your child, please don't give up. Even though you probably don't see it now, you are paving the way for someone behind you. You may feel like you want to give up, don't. Go have a good cry. Believe me, I have cried more than once after getting off the phone with the insurance or a doctor or a teacher/administrator/principal. I've cried in the Target parking lot, in the Chick-fil-a drive thru and on my couch alone in my house. Find a friend that knows what you are going through or is just a really good listener.

Just keep going.

Find the small victory. Celebrate it like its a huge victory. (Ice cream is my go to)

Cry it out if you need to.

Keep fighting.