Back To Blogging

So I have been writing just not putting it into the blog. I will however be slowly typing them up and posting them. In the post will be the day I wrotw it up. My ultimate goal is to hopefully get two post a week up. I encourage you to read past post. To share them if they resonate with you. This is a blog about life. It’s a blog written by a Mom. A mom who has been through a lot but because of it has a lot to say. 

Goodbye My Beautiful Girl

Aaliyah Emily Gabriella Perrotti passed away on January 27, 2019 at the age of 6. A student at Stevens Elementary School. Aaliyah was predeceased by her identical twin Natalia Elena Elizabeth.  She is survived by Parents Alicia Maria and Robert, and sister Melody Elisa as well as numerous Grandparents, Great Grandparents, Aunts, Uncles, loving cousins, god sisters and god brothers and school family. Aaliyah was also loved by many friends who became family and an extensive online community that spanned the world. Aaliyah had an infectious smile and enormous personality that brightened the day of all who saw her. She had a way of bringing out the best in others with her amazing spirit. Despite her challenges Aaliyah had a huge impact on the lives of everyone who met her. She will be missed but never forgotten. 

Aaliyah lived and gave more in her 6 years 4 months and twenty days than most do at my age.

We should...

We as parents are often told we should be grateful. We should appreciate the gift we have in them. So  easy in theory but not very fair. It’s not that we aren’t grateful.


Just sometimes parenting isn’t always easy. Sometimes we need a break and that’s not wrong. Sometimes we may want to scream at them. Sometimes we may joke child for sale. Or like today when I said A is a butthead because guess what she was doing things on purpose that were a little annoying on purpose.

Sometimes as mothers we feel guilty if we complain about pregnancy because we are lucky to get pregnant. That’s not okay either, pregnancy isn’t always easy. For some it’s down right painful. We all handle things differently, what isn’t hard for one person may be for another. I had 24/7 “morning” sickness my entire pregnancy with M. That was hell.  I had to be so careful about everything I ate. I hated pregnancy. It wasn’t a walk in the park the first time with N and A either. That had its own issues.

We should be open and honest about our feelings but we shouldn’t attack or make someone feel guilty because that’s we feel. We should be respectful of how others feel. We should understand we all have are own struggles as parents. We should support each other and spread love. We should know that sometimes we have to go to a safe place and unload our anger, our fears, our jealousy, our frustrations instead of taking it out on someone else.

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.