My Chaos Theory

Chaos

noun

1.

a state of utter confusion or disorder; a total lackof organization or order.

2.

any confused, disorderly mass:

a chaos of meaningless phrases.

4.

(initial capital letter) the personification of this inany of several ancient Greek myths.

5.

Obsolete. a chasm or abyss.

Sometimes as a parent no matter how much you plan and prepare there is still chaos. Why? Simply put kids are bundles of energy who planning and preparing do not factor in for. They are irrational little creatures but we love them. 


I know to some it's overwhelming because of their need for order. For me I am more particular about how I organize things that I put away. So as odd as it sounds I can handle a messy room if in my head I have some semblance of order. Example the girls playroom it's what most would consider a mess. As long as the books are on the shelves, the little people in their corner and her kitchen stuff against the wall, I'm okay. I don't care that her cars, or dolls are all over. Or that stuff from the toy box is on the floor.  Aaliyah's room has to be perfect. Why I don't know. Melodys on the other hand as long as her clothes are neat, I feel fine. 

I'm an overpacker. Each girl has their own backpack, one diaper backpack and a medical backpack. Most times we travel at a distance to see family. Not ridiculously far but far enough if we need something we will have to buy it. It's hard to travel with Aaliyah, so we don't want to have to head home if she needs something. So I overpack and it helps us contain our chaos a bit. 

Kids have bad days, same as adults. Difference is their brains don't know many ways to express themselves, so it resorts in outburst a lot of the time. Many are quick to say spanking will solve that. Timeout will fix that. Which is right? Which is wrong? I'm still not sure of what I want to do and at this time am taking it one situation at a time. 

I'm trying hard to find ways to communicate with Aaliyah because of course with her delays and not knowing how much she understands makes it difficult. Sometimes I think she understands a lot, other times I'm not sure she does at all. 

Melody is a whole other story. She is a bright, caring toddler but she's only one and half. So I remind myself often of that. Her not speaking does complicate things a lot. We will have an evaluation on Monday and hopefully get started on therapy to help with that. I try to talk to her but when she doesn't talk, refuses to try sign language and doesn't really pay attention to the flash cards we have on emotions. 

My chaos theory is that life isn't a smooth road. It's a bumpy one with twist and turns, with highs and lows. All we can do is try our best and never stop learning. Never stop adapting. Never think that their is only one way and be open to what others say. Don't be scared of chaos because out of it can come beautiful things.

REPEAT AFTER ME... I AM NOT DEPRESSED

I wrote this on a post of mine.

"The best memory and the hardest was holding Natalia. Best because I was lucky enough to hold her and worst because it wasn't long enough." 

It got me thinking.

Next Monday we attend open house for Aaliyah. That Friday is her first day of Pre K. The following Monday she turns three, we can love of her and make it special.

Next Monday we don't attend Natalia's open house. That Friday she won't attend her first day of Pre K. That following Monday she doesn't turn three, we don't get to tell her we love her and make it special. Yes, she knows we love her. Yes, we will do something for her but it's now how it should be.

Next Monday I will have joy in my heart and soul because it's the start of a new phase for Aaliyah. That Friday I will be the beaming mother because Aaliyah will be going to school for the first time. The following Monday I will rejoice because despite it all Aaliyah is here and she's turning three. I will be happy that what we were told would be Aaliyah's future is better than they thought far from perfect but still better.

Next Monday I will be sad because Natalia doesn't get that chance. Next Friday I will be sad that I don't get to see Natalia head to school with her sister. The following Monday I will be sad because Natalia isn't here and she's not turning three. I will be sad because I don't see her future.

Please don't think I'm depressed, I'm not this is a sadness that never ends but doesn't always consume. It's a daily reminder that she won't have these moments. It's an eternal grief that will always be with
me. At least till I see her again.

What people sometimes forget is there is a difference in grief/sadness and depression. Trust me I know both. They are very different.

Time Flies

The saying "Time Flies" is very appropriate to how things have been. So much has happened the current big thing is we are moving into our own home.

Just a brief update on Aaliyah. She's struggling with her feeds again but overall she's doing fairly well. She's getting ready for school in the fall.

It's been three years since we found out about Natalia and this year we had people post flowers for her. I'm working on that book.

Now on to Melody, where do I begin? Well first off how about some of her new nicknames... The top two are Ms. Drama and Lttle Big Sister.

She has got a DIVA personality at times but over all she has a beautiful soul. Truly a sweet gentle girl. She comforts Aaliyah when she's upset. She tries to do all the things we do for Aaliyah. She hands us Aaliyahs meds, makes sure that Aaliyah is connected to her feeding pump, she even wipes her when I change Aaliyahs diapers. While I don't expect her to do these things, I want her to understand and also encourage her to do things right. I am a firm believer in teaching a child about the workings of things in their lives. Aaliyahs medical needs are a huge part of our life and her understanding them will only enrich her life.

Melody loves to play with balls. She will play catch. She loves her dolls and cares for them exactly the way we do Aaliyah. Down to giving them meds. She has 4 dolls in particular that she absolutely loves. Twin dolls and her Disney toddler dolls. The toddler dolls now go everywhere with us. Don't get me wrong she is a HUGE Doc Mcstuffins fan.

We were going to do a big party but she's very shy and decided instead we will do up her room big. Next year we will do a party.

She's independent, but a mamas girl. She is shy around strangers if they try and pick her up but LOVES to smile and wave if they give her space. She is generous with her food and things she lives.

Melody is an amazing little sister and I truly believe she makes her sisters proud.

Crazy Life of A Busy Family and a Look Inside My Head

Life is crazy, that's the simple version. The complicated version is we have been in and out of doctors appointments. Non stop therapy sessions. While some negatives have happened over all it's been positive.

I'm thinking about a lot of the choices I make in regards to Aaliyah and I can honestly say I don't regret them. I do the research, I talk to the parents and I listen to the doctors. I tell Robert​ and he listens. He tells me what he thinks. Almost every appointment for the last year since Rob switched jobs my mom or dad are with me. They help me through the thought process. In the end I make the choice because I'm the one that is there most of the time. Rob has trust in what I'm feeling and seeing.  As do my parents.

One of the major things was the feeding tube. We never let it get to the point of being an emergency situation. We felt very strongly in getting it before it was necessary. Before she lost weight, before she stopped gaining weight, before she ended up hospitalized, and we were right. Because of that she has had only one hospitalization because of weight and truth be told I think that seizures were present but not visible. She has had at least two periods of avoiding the hospital thanks to that tube. Thanks to it we can get the nasty meds she needs to get through the day. It's a god send yes having my my child go through surgery put under and cut open was a blessing.

People see a glimpse of what I am dealing with. Not the whole of it. They see what I put out on my "lawn". They don't see the 100s of little things I deal with. They don't see the ups and downs. They don't see what my daughter goes through. The sleeping after some seizures is hard, the daze after some are hard. Her breaking down crying after is the what breaks me.

Losing her sister, her twin, her other half hurts. How could it not?  What they don't understand is that what cost us Natalia is the cause of Aaliyahs problems. I'm angry and always will be. I'm in pain and always will be. Yes at times it dominates me but it does not and will not control my life. I will give it the reigns at times because I refuse to bottle it up. I have the right to feel that way. How I handle it is my business.

The choices I make for our daughter aren't just what she wears. They determine her fate, her life, her health and most importantly the quality of all three. So yes it may seem I'm being negative to some but those who truly know me, they know that I have those moments and than I move forward with fire in my blood. I don't give up, I don't give in because that is not who I am.

Well that's enough for now. I will try and get another blog up this week so that I can update on Melody.