Finding the rainbow around the corner.


In my life I have felt so much relief from other women’s stories of overcoming adversities in their life that I felt it was my turn to share my story.  My second daughter Luciana (Lulu) was born with a rare chromosomal 8 abnormality of which there are only 64 cases documented.  When the NICU Doctor told us her diagnosis he couldn't tell us much. He didn't know what this meant for Lulu's quality of life nor what our day to day would look like with her. After staying in the NICU for a couple of months, we finally brought Luciana home.  The days and months that followed her birth were long, dark and sad. I was grieving the life I had envisioned for our family of four.  But even more than that I was concerned for our baby girl Lulu.  

With the help of family, friends and our faith we established a new normal.  We challenged ourselves to have her drink all of her bottles on her own so we could take her peg tube out (a tube inserted in the stomach where food is put in with a syringe).  Six months later we celebrated her peg tube being taken out.  We knew enough at this point that if we wanted Luciana to walk, talk and do anything for herself she would have to work very hard at therapy.  She was only 4 months when we enrolled her in all the different types of therapies and even some alternative therapies.  It's so eye-opening to look back and see how narrow-minded my idea of a perfect sibling relationship looked like before I had Lulu.  I thought it could only look one way—and that way was with two healthy sisters chasing each other and playing.  But, now 5 years later I see that it could be just as perfect with Valentina pushing/racing with her little sister in her wheelchair. 

Two years after Lulu was born we took a leap of faith and got pregnant again.  I was hesitant at first to get pregnant because of the "what if’s,” such as “what if we had another daughter with special needs?" We love Lulu so much and couldn't picture life without her.  But could we handle two special needs children?  Despite our concerns we came to an agreement that if we were blessed with another child with special needs, then I guess we were meant to have two children with special needs. One year later we had a beautiful healthy baby girl and named her Rose.  

After the birth of Rose something in my brain switched! I had always wanted to have my own clothing line. I studied fashion design and I had interned in the industry for a couple of amazing designers like the sisters from Rodarte.  But after having Luciana I thought for certain that was one dream that would not come to be.  However, with that “switch” that took place I also felt empowered.  Empowered by my decision to have another child despite my fears.  I thought to myself, what else am I not doing because of fear. The answer was clear.  I was not pursuing my dream of becoming a fashion designer.  I decided to stand up to my fears that day and went for it.  One year later I launched my first collection

Here we are three years later since establishing my clothing line.  Luciana is now 6 years old and is practicing walking with a walker.  She can say "Mom", ‘more," and “hi." I have a clothing line I am proud of.  But, most importantly I have shown myself (and my 3 daughters) that although life can send you some extremely difficult challenges, there is always a way to achieve your dreams. 

 


4 comments


  • Sylvia McGrath

    Hi just wanted to let you and your family are in my prayers. It was a pleasure to see your family. And your Mom and Chava love them to pieces. Tia Nori was always great to me.


  • Rebecca Baker

    Hi there! I’m a fellow 8p mom, my son just turned 7 a few weeks ago. Our stories sound similar (nicu, a pregnancy after our chromo cuties!) Feel free to reach out!

    Hugs


  • Hanna Anderson

    An incredible story and family. Wishing you all so much joy in your journey.


  • Brian

    You’re awesome girl!!!


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