Are they worth the pain?

I suddenly remembered when I was asked if I wanted to terminate with Aaliyah. I remember that instant of hell no. Never. I want her here however she turns out. I lost her sister and I didn’t want to lose her too. 

Than later I was asked if I would make the same choice knowing her struggles and the problems she was having. Again I said I want her regardless of what struggles we go through. I’d go through it twice if it meant having Natalia here. 

Now here we are and she’s gone. I am in so much pain I physically feel it in my heart. Like it’s being crushed and now I ask myself would I make the same choice. The answer is simple. Yes. Yes, I’d make the same choice again and again.

I watched something where a fathers mind was wiped of the painful memory of losing his son. I can understand how that would make sense. No memory. No pain. The problem with that is no memories of the laughter. No memories of the beautiful smile. No memories of the hugs. No memories of the dancing, the singing, put simply no memories of the joy.

So while I’d love to not feel the pain my girl is worth the pain. She is worth every tear. Every crying binge that leads to me losing the entire contents of my stomach. It’s worth listening to the songs that bring me joy and pain all at once. The memory of her smiling, her head cocked to the music listening intently. The sadness that she won’t ever hear it again. Our family traditions that we all enjoyed and are trying to continue even though it pains us to do them without her.

The thing is we’ve been through this it’s just now double. See we lost Natalia and we often talked about if having Natalia here meant having to go through the same with her as Aaliyah we’d do it. Every time Aaliyah laughed, what would Natalia sound like? Would her laugh be as infectious? Every time she smiled would it be as big? Would her hugs feel as warm? Would she love to dance as well? Would she enjoy my singing as well? We only had half the joy.

Knowing her however briefly inside of me was worth the pain of missing her. She is worth every tear. Every crying binge over the last seven years that led to losing the entire contents of my stomach. Would she have been as invested in music the way her twin was? Would there be songs that I could listen to that remind me of her? Instead of her participating in family traditions we had to honor her memory.

So yes my girls are worth it.

Be Bold, Be Brave, Be Aaliyah

At first I started crying about things Aaliyah couldn't, wouldn’t do now because she was no longer here. Than I realized that I had to change my mindset, the same way I did when she was here. I have to look at what she did do and not what she didn’t.

Aaliyah traveled to the ocean, and dipped her toes in. As far as she was concerned it was to cold.

Aaliyah went to many birthday parties including one for a classmate.

Aaliyah went to a pool party and had a wonderful time.

Aaliyah went to a comic convention.

Aaliyah met many actors and artists.

Aaliyah went to Disney on Ice, the last time she had front row seats.

Aaliyah went to fairs and festivals.

Aaliyah rode on a Ferris wheel.

Aaliyah rode on a carousel.

Aaliyah went to yoga.

Aaliyah went trunk or treating.

Aaliyah met Santa.

Aaliyah went on wagon rides.

Aaliyah attended school and loved it.

Aaliyah made friends at school.

Aaliyah danced with her friends at their holiday performances.

Aaliyah went to the Harvest Ball with her Daddy. Twice.

Aaliyah danced with her family.

Aaliyah loved music and it couldn’t get better than Maroon 5.

Aaliyah ate ice cream.

Aaliyah ate chocolate and loved it.

Aaliyah ate sweet potatoes and hated it.

Aaliyah flew on her Daddy and Papas shoulders and loved it.

Aaliyah flew on a plane and was so well behaved I thought they switched my kids.

Aaliyah stayed in a hotel.

Aaliyah swam in pools.

Aaliyah went to Disney.

Aaliyah met princesses.

Aaliyah met Mickey.

Aaliyah met superheroes.

Aaliyah met villains.

Aaliyah met Rey.

Aaliyah had a makeover. She had her nails, hair and make up done.

Aaliyah was able to witness the magic of Disney fireworks and loved them.

Aaliyah was able to ride Its a Small World.

Aaliyah was able to enjoy the wonders of a hot tub.

Aaliyah had her face painted.

Aaliyah went to the Rainforest Cafe.

Aaliyah had dinner with Cinderella.

Aaliyah watched Matilda.

Aaliyah played baseball on a team.

Aaliyah had a smile that lit up a room.

Aaliyah won over anyone she met.

Aaliyah had a stubborn streak that rivaled mine.

Aaliyah changed the way we faced life.

Aaliyah changed the way we felt about ourselves.

Aaliyah went to the zoo, she celebrated her first birthday there.

Aaliyah went to the aquarium and loved it.

Aaliyah went to museums.

Aaliyah went to the library and even got her own card.

Aaliyah went to the park.

Aaliyah played on slides.

Aaliyah played on the swings.

Aaliyah went to the movies and saw so many. The last one being Wreck it Ralph 2.

Aaliyah loved the battle scenes in Star Wars.

Aaliyah loved the theme song to Doctor Who.

Aaliyah loved being kissed, guaranteed she would smile.

Aaliyah loved the color blue. Any shade of blue

Aaliyah loved soft things.

Aaliyah loved listening to people talk.

Aaliyah loved lights.

Aaliyah rode on a train

Aaliyah went to New York City.

Aaliyah went Rockefeller Center and saw the tree.

Aaliyah saw the ice skaters at Bryant Park.

Aaliyah went to Toys R Us in Times Square..

Aaliyah went to the American Girls store there.

Aaliyah loved the performers at Times Square.

Aaliyah went to the Hard Rock Cafe.

Aaliyah went to the Connecticut Science Center.

Aaliyah met the Easter Bunny.

Aaliyah went on field trips at school.

Aaliyah rode in go-karts.

Aaliyah inspired others...

To be kind.

To look past differences.

To be stronger.

To never give up.

To have hope.

To live life to the fullest.

Aaliyah was a daughter.

Aaliyah was a twin.

Aaliyah was a big sister.

Aaliyah was a granddaughter.

Aaliyah was a great granddaughter.

Aaliyah was a niece.

Aaliyah was a cousin.

Aaliyah was a god sister.

Aaliyah was a friend.

So please live life with kindness. Remember to smile big like her and keep in mind that sometimes its okay to roll your eyes.

Melody

How is Melody? We hear this a lot. How is she? She’s lost without her sister. She understands that she is dead and not coming back. She’s confused as to how it happened. She believes that got sick and didn’t get better. So now if we get sick she gets clingy.

She acts out at school. When she decides she doesn’t want to do something it’s hard to convince her otherwise. She will outright refuse even if it means losing something that means a lot to her.

I started writing this blog post a little over a week ago. I kept feeling stuck. Yesterday my beautiful five year old came to me for the first time since losing Aaliyah truly heartbroken. Clear signs of it all over her sweet face. She looked me in the eyes and said “ I miss Aaliyah.” She than cried for a good twenty minutes while I rubbed her back. The same deep emotional tears, I can’t seem to stop shedding. My family, my daughter, is just as broken as me. Only time will heal us.

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.