That Hidden Corner

In the last year a few friends have lost children. Children they adored. All with special needs. Several months ago I was talking to the most recent.

This mother lost a little girl I watched grow, learn and most importantly live a full life despite what some call limitations. This was a girl I'd never met in person but nonetheless had wedged herself deep in my heart. A girl who I will always cry about. A girl who my family knows by name. Who I bragged about to my mom in our daily conversations. Who in some of my darkest days made me smile with her beautiful laugh. She leaves behind two parents who adore her. Brothers but not just any brothers they are her womb mates. She is a triplet. She has a new baby brother she didn’t get to meet. Grandparents, aunts, uncles and whole bunch more who are grieving for her.

So this hits multiple triggers for me. A child's death. The loss of a multiple. The loss of a child with special needs. A child I love.

I told my friend this when we spoke.

"I can only imagine. I know what I feel like losing Natalia. Losing any child is hard.  I can't imagine losing Aaliyah who I care for so much more than your typical kid. We invest even more than most can imagine for them. ***** knew a love from all of you and that leaves a hole."

Day in, day out my time and what I do is spent around Aaliyah her needs, her wants, her appointments etc. My medical needs are often left until I can't handle it on my own because who will be able to take care or her and keep Melody occupied while I am being cared for.

"When we have children like them, your world changes. Most parents expect their child to eventually leave the nest. We adapt our perception of what parenthood truly is for us. We learn an empathy we didn't know possible. We grow a strength we didn't know we would be capable of. Why because that child needs us like no one ever will. They teach you to see love in different packages. To know that yes the words I love you are special but words or gestures aren't the only way you see it. You see it in the sparkle of their eyes. In how you know the tone and pitch of their cries when no one else does. You learn a new way of being. We speak for our children and will always."

Our lives completely revolve around our kids in ways most can't understand. So losing them is crippling in more than one way. I truly can't explain what Aaliyah is to me, obviously she is my daughter, a piece of my heart, a connection to Natalia but there is more. She is more than just my child. My responsibility. My "job" is organizing her therapies, her doctor visits, her procedures, being with her during hospital stays etc. We form a bond that I can't describe.

We the parents to special little kids are often told how strong we are. What choice do we have? We are often told I couldn't do what you do. We probably would have said the same thing before we had to. We are often told how special we are. Really? Special? What's is so special about us?

What you need to realize is those questions don't help us. If anything they probably piss us off or irritate us to no end. Which depends on how are day went.

We live with the knowledge that we more than likely will outlive our children. It is something that never ever goes away. It's always there, in the hidden corners of our minds. A never ending weight. The thing is it's one we don't want to let go of because if it goes away it more than likely means our precious child is gone.

From January of last year to now we’ve had several real scares with Aaliyah. Two in particular I watched my child who I adore, struggle to breath. Last week I watched as we sat her up to be examined stop breathing. In less than a 30seconds she started to go blue. Eventually we found the cause and she’s doing better. She’s home, shoot she’s back at school. Yes I stayed calm. Yes I knew she’d get better. Regardless of feeling that way and thinking that way, in the hidden corner of my mind I had that fear. I will always have it.

I finish this with one request pray for my friends who all are grieving.

Past and Present

Past: R and I had a struggle we weren’t sharing with the world. We couldn’t get pregnant. We had been trying awhile and had come to the conclusion it wasn’t meant to be. We were okay with that. For me I said I was leaving it in God’s hands. For our own reasons we weren’t open to medical help. Little did we know that this day in 2011 the thing we wanted the most was finally going to happen. A tiny seed was going to stick and split into two beautiful girls. 

Present: I have two beautiful girls in my arms and one in my heart. Things didn’t turn out the way I expected I’d like to say I’m okay with that. The thing is I’m not and I’ll never be okay. Like I’ve said before it doesn’t mean I’m not happy or that I don’t love my life. It just means that part me always feels like something, someone is missing. Like my life could be 6x better. Six years of different memories. Six different Christmas days. In a few months  to be six years of a different birth story. 

I am happy. I have A even though she has her struggles she is here and she thrives in her own way. She is understands more than you think. She does things at times that while annoying you can’t help but laugh because she knows she’s giving you a hard time.  I have M and she is a shining light in dark moments. She is loving, generous, gentle and thoughtful. Yes she struggles with her speech but it’s getting better. I have a pretty good marriage. I have a different life than I expected but it’s a good one. 

So I look at my past and I’m grateful because it started us on a path to meeting our three  beautiful daughters. I look at my present and I’m doing okay. 

It started with a pair of leggings

So this is a post about me but like a lot of my life the girls do come in to play. How it took me a couple of YEARS to finally start buying Lularoe. A friend I made through my twin mom group started selling back at the start of it. I thought about buying but it was a nice chunk of change without being able to try it on. So as it got more popular more friends selling and even more friends hosting parties. Yet I still wouldn't buy because I hadn't tried any of it on.

Than a friend asked for my address and I gave it to her. Didn't think twice. People send the girls stuff all the time. Eventually a package arrived and I was from a person I didn't know. Inside was a pair of leggings not just any leggings but what in the Lularoe world are referred to as unicorns. Which basically means it's a much searched for pattern. It was a black background with yellow orangey dragonflies. It turns out this woman had been searching for the same pair but in a smaller side. She to had lost a daughter and dragonflies are something that reminds her of her precious child. My friend told her how I had lost Natalia and that dragonflies had a deep connection to them as well. When someone gifted her the size she was looking for she decided she wanted to pass on the gift to me.

So now here I am trying on these leggings for the first time. Surprise, surprise the buttery softness hooked me. See the price on them didn't bother me. The issues with holes didn't worry me because I knew plenty who hadn't had any issues. So when my friend had a part I bought several pairs. I've entered contest and won several of them. I now own several different pieces. Leggings, skirts, a dress, some sweaters/kimono.


For the first time in a long time I feel pretty. I find myself getting dressed instead of staying in pjs. Anyone who knows me, knows I dress to please me. Not to please anyone else. I love the floral patterns. I love the vibrant colors. I've seen some say how they leave the prints in their tops. Not in their bottoms. See I prefer the reverse since prints on top for me tend to stretch out and not look as pretty. 😂 The thing about clothing for me is you should dress for yourself. You should be happy. Your clothes should speak for you. My clothes say I'm crazy but fun. I'll try and take pictures to add later. That's it for now I do have a blog about the clothing and how it works for Aaliyah.

Dreams

I'd always wanted children. My dream had been to be a wife and mother. The first part was already true, had been for awhile. The second part had come true just a few short weeks before. On this day five years ago a bigger dream came true. You see from a very young age my mother can tell you I had to have two dolls minimum always. Why? I wanted twins.

I dreamed from a young age of having twins. I mean actual dreams of them. Funny thing it was five kids. Two sets of twins and single. I dreamed of having girls the most but I also dreamed my youngest would be a boy. So there we were first ultrasound and of all things twins. Identical to boot. I was told the risk. I was told I'd be watched closely. All I could think about was thank you God, thank you.

Now if you've read my blog you know how this story goes. Even with how things have gone. With the good and the bad.  I think thank you God , thank you.

Four Long Years

My oldest daughter is dead, you are dead. What can I say it's been four long years. Feels like yesterday I heard those words. It's funny I can't remember the exact ones but does it really matter. Just the same you're gone. 

I didn't get to hear you cry. I didn't get to hear you laugh. I didn't get to see you smile. I didn't get to hear you talk. In my heart of hearts I believe I will someday but right now my heart breaks a little more each day because not one goes by that I don't think about you, that I don't wonder what would you be like.

I wonder if you'd be quiet like your dad or would you be loud like me? Would you be adventures or would you be cautious? Would you love to read or would you rather be on the move? Would you love to dance? Would you love to sing? Would you be a mamas girl or a daddy's girl? What would you and Aaliyah be like together? How would you get along with Melody? What would it be like for her to have two big sisters? 

I could go on because there's always going to be questions. Than there are  the things you didn't get to hear or feel. You never got to hear me say I love you. You never got to feel my arms around you. You never got to feel me give you a kiss. You didn't get to hold hands with your sister. You didn't get to dance with them.  Than some of the worst things we didn't get it. I didn't get to hear you say I love you. I didn't get to feel your arms around me. I didn't get to see you with your sisters. 

I don't give myself the time to really express what I feel when it comes to you on a regular basis. I have to be strong for your sisters. It doesn't mean I don't miss you,  I just have to move forward. You are always my daughter. You are always in my heart. I'll never forget you. I'll never act like you don't matter because you do. This week will always be about you. We will always come with something to remember you. Your life may have been brief, you may have never taken a breath outside of me but your tiny hand touched so many. 

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.