By the time I was discharged and was able to make it across town to the NICU, the doctors there had fully examined her and had her hooked up to all sort of machines, a ventilator, IV's and cardiac monitors and once again, I was petrified. I was finally able to meet with her primary doctor who told me she was a pretty sick baby. She had a heart murmur, and something called Hyaline Membrane Disease in her lungs. They were feeding her through tubes and at this point I STILL hadn't held her nor would they let me even touch her. I was encouraged to stay with her as much as I wanted, but I could only touch her after I had been gloved and gowned.
I visited her each day and spent as much time as the nursing staff would allow. Being in NICU was pretty restricted during those days, I could come and go as I wanted but couldn't stay over night. They just didn't have the room to set up any type of bed or cot. After about 10 days in NICU, the doctors began weaning her off the machines and oxygen, they told me she was a miracle and was beating the odds. At 14 days I was able to not only hold her but to also take her home. I will always remember that day...
Fast forward to today, October 11, 2012. My daughter is a grown woman, who has been through and survived more than any parent wishes for their child. Following is a list in no particular chronological order of the things I know to be true and proud that my daughter, Deborah July (Lewis) Erickson AKA: Mylia has not only survived but also conquered.
2. During her high school years, instead of hanging out with the *normal* kids, my daughter was adopted into the HS ROTC gang. On any given day there would be 6 or 7 young men at our house who not only lived the military code while at school, but extended that training to their everyday, away from school life. These were some of the most respectful teenage young men I'd ever met.
3. She was chosen by Isis at the age of 13 and as she has developed in her spiritual path, she is now living as a Priestess of Isis. The entire Egyptian pantheon plays a huge part in Mylia's spiritual walk, and she has learned to stop and listen when one of them is trying to relay a message.
4. My daughter is a cat person. This is a picture of her and her cat Egypt. Egypt is the only one who can actually get Mylia to stop doing an abundance of things when she isn't feeling well. Even Cheyenne has a difficult time on occasion, but Egypt will definitely show her who the boss is, which leads to Mylia resting when needed.
5. And speaking of not feeling well. Mylia is a Chiari Malformation Type 1 survivor. Before she was diagnosed with Chiari, the doctors kept telling her she was just suffering from migraines. Now anyone who knows anything about migraines knows they are not JUST migraines. And most migraines don't come with *stroke like symptoms* of tingling in the arms and legs, inability to speak coherently and loss of conscious for no apparent reason. Even though she has had the necessary surgery, she still has some issues and we are working through them on a daily basis.
6. My daughter works for Goddard Space Center in College Park, Maryland. YES, I AM extremely proud of her and her ability to obtain and maintain this position even though she has had the health challenges she faces.
7. Mylia is a single mother to my very talented 16 year old granddaughter Cheyenne. The relationship between the two of them is awe inspiring. Each looks after the other and sometimes the roles are reversed with Cheyenne taking on the parent aspect. I've never seen a relationship more grounded and solid than the one these two have. My daughter has done a remarkable job being a single parent in this time and place.
8. Just recently Mylia has returned to writing the poetry she had loved for so many years but abruptly stopped when someone laughed at her work. Working through the issues surrounding this person has been difficult to say the least, and each day she takes one more step to finding and reclaiming the person she was before this destruction came into here life. While we were in MD during the trip to take Cheyenne home after her vacation with us, Jimmy & Mylia had a pretty intense conversation about the person who had been weighing her down and keeping her from her writing. Jimmy made the comment something like: If you stop writing the things YOU like, that person still has a hold over you and they win. Not too long after we got home, I got a phone call with a message to Jimmy: Tell Dad I wrote my first poem today and so & so no longer wins. VICTORY!
9. Over the summer, Mylia has been traveling... again. Something she hadn't done for quite some time and with the positive changes she is making, I'm pretty sure there are more untried paths she's going to be searching out. On one of her more recent trips, she was able to go to Pennsylvania and spend some time with two of her very bestest friends, Nichole and Jen. I've heard stories of this weekend trip and I picture in my mind 3 fantastic women loose on the streets of PA during Pride Weekend this past July. I think one of the highlights of this trip was their visit to have High Tea where they each wore stylish hats and enjoyed the afternoon. She has a few more trips planned before the end of the year and one of them is to come here to North Carolina for Thanksgiving. She is even considering the possibility of flying, something that up until now was pretty much out of the question. The cabin pressure causes severe headaches, but she's weighing the hour and half plane trip vs an 8 hour bus trip. So far I think flying is ahead, IF she can get her Dr to approve the flight and prescribe pain meds for the trip here and back.
10. OH YEAH! This is important! have ya'll ever heard of the Spoon Theory by Christine Miserandino? If you haven't PLEASE take the time to read this exceptional explanation of how to make someone understand you really are sick even when you don't look sick. There are MANY days where Mylia may not have enough spoons and we all just let her stop... sometimes we have to MAKE her stop, but you will understand a LOT better after reading the Spoon Theory.
So there you have 10 random facts about my daughter Mylia and now I want to say