Why am I a Fighter?

This is one of the things I ask myself all the time…Why am I a fighter? Where did that come from?

I am a middle child and jokingly my family always said I fought to be seen and heard. I am one of three girls and separated only by a few years. Here’s an example that proves my point: My mom has a decorated plate with all our names painted on it displayed on the mantel above the fireplace. It has become a running joke among our family that my two sisters’ names are right-side up, but me being the middle, of course my name is up-side down on the bottom! I was always labeled the fighter, arguer and competitive one. At times, I welcomed this with open arms and other times I saw it as an insult. We fighters see things in extremes, well at least I do. I have to give it my all not looking back and having confidence in the win or back out right away so I don’t make a fool of myself. I have learned a lot over the years and I have gained humility, but I am still a fighter at heart.

In the case of Mia, I welcome the fighter in me. I am so glad to be a fighter for her! Sometimes, even if you are not a natural fighter, we all have to learn to fight for things! If you have kids, I am sure you know what I am talking about. When Mia was born, I knew I was up against a lot. I was ready to fight everyday for a fair opportune life for her — sometimes to a fault. I’ve made a few mistakes along the way. When we brought home three hispanics, I knew my life would be a life of fighting for them as well. I am a fighter and advocate for all my kids and will be until the day I die!

I went into detail of Mia’s birth story on other posts, but as a recap when Mia was born she was transferred to the hospital in an ambulance after her umbilical cord snapped off upon birth causing her to start bleeding out. It was stopped right away by my awesome midwife, but if she moved her hand the chances Mia would lose too much blood to survive was high! So Mia was transferred to Baptist Hospital on Walnut Grove across from Christian Brothers High School. She arrived without me because I had not yet delivered the placenta. When she arrived without a mother, they almost called the police! As if I hadn’t had enough excitement already! The hospital was quick to be on the defense, but when it came for answers to Mia’s diagnosis they were silent! If it weren’t for my midwives, I wouldn’t have been alerted of the possibility of Mia having Down syndrome. I would have been left with the questions in my head and being an emotional, tired mom I wouldn’t have asked. I heard later that the hospital doctor on call said there were not enough markers to say anything! Guys at the time, I did not want to hear there was anything wrong with my daughter, but luckily I had some awesome people that cared enough to tell me despite knowing I would be emotional about it. If we did not have the diagnosis of Mosaic Down syndrome we would not have gotten the resources and help we needed for Mia right away. The doctors saw that there was nothing wrong or not enough wrong. If we would have went with that, we would have missed out on months (maybe years) of therapy covered by Tennessee state. Individuals with mosaic Down syndrome are not always diagnosed at birth and can go years without having a proper diagnosis! To qualify for Tennessee Early Intervention Services (TEIS), you have to show a 25% delay in two development areas or 40% delay in one area, but get this…YOU MAY BE ELIGIBLE for services, not definitely eligible. Mia has never qualified for occupational therapy. She had a slight delay in physical therapy, but wasn’t that far behind her brother when he was her age so speech would have been the only thing that would raise a flag. Although, at her young age she may not have qualified for speech because she was an excellent nurser and when introduced to foods, had no problem swallowing. Because we had a diagnosis, it has been so easy to get the help she needs and obtain an IEP now that she is school-aged. We are now going through this with our older kids trying to get IEPs for them and it is so difficult. I am blessed that we were able to start from the very beginning with Mia. I know some friends who have had to jump through so many hoops to get a diagnosis to get qualified and it’s taken years for them to get the help that they need.

Again, it was because of our midwife’s attention to detail and actual patient care — not bound by political reasons and red tape holding them back from saying something — that we were able to get answers as fast as we did. We immediately requested blood work drawn which did come back that Mia had mosaic Down syndrome – some of her cells having the typical number of chromosomes and some had the extra. We were only in the hospital with Mia for a handful of hours and still by the time we left, they specifically did not say anything to us and did not advise us to get blood work done. I remember asking the nurses do you think anything’s wrong and they told me no she will be fine and grow out of these features!

The hardest thing these last four years hasn’t been anything to do with Mia’s progress! The thing that has been the most stressful and the thing I am standing up against the most is the ignorance of people, labels placed upon her, preconceived judgements and ceilings people want to place on her! I am a proud fighter for my Mia and she has already exemplified the same characteristics in herself!!

This month, I encourage you to educate yourself on Down syndrome. Down syndrome is ONE characteristic of Mia, just like your child may be below average in height or flat-footed and can’t run as fast as his classmates, or allergic to peanuts, or has trouble pronouncing their ‘r’s” or… the list goes on. I don’t define your child as the flat-footed child, so please learn to not define mine as the Down syndrome child.

Also, I encourage you to be an advocate. If you are in the school system or whatever, stand up for our kiddos who have so much to bust through! They already have so many obstacles to overcome, they don’t need anything else due to cultural biases, etc. to hold them back. I am asking you to come alongside me and all the families like us and pave the way for a successful life for our kiddos!

Much love! – Kristina

sheis__kristina