The #OrganycUSAuthentic series shares stories of motivated, ambitious women throughout the USA, who overcome obstacles to then give back to the community.
I have known Debbie since high school, but we reconnected years later when we had kids and both took to blogging in regard to their disabilities. Her transparent nature in writing about her experience with Amelia growing up with a diagnosis of mixed Cerebral Palsy, medically fragile, GERD and chronic lung disease, led me to contact her for the Organyc Advice and Support blog.
I asked her if she would address the topic of disability and menstruation to help other families navigating similar territories. Nestor and Debbie had already shared their family’s story in the following two articles:
Despite the delicate and personal nature of my request, based on their overwhelming desire to assist other families, Debbie and Nestor generously agreed to share their family’s experience with Amelia and her first period…
Nestor and I met in NYC 18 years ago and have been happily married for 15 years.
He has a son, Nestor III who is 29. A gorgeous man inside and out! I could not have asked for a kinder, smarter or more authentic step-son. At a certain point, my husband and I decided to grow our little family, and I got pregnant in 2005.
Nestor and I anticipated the birth of our new baby with all the hopes and dreams each parent has for their little ones. We decided to go to LA for the delivery of the baby, because I was due in early February, which is the middle of “Pilot Season,” a critical time during the year for an actor to audition for work. The weather was better out there, and Nestor’s buddy had a 2 bedroom apartment in West Hollywood he wasn’t using, so off we went.
As soon as we got to LA, I went to meet my new OB. He was concerned, because I had an excessive amount of amniotic fluid. He said there could be a few reasons for this: 1) an anomaly 2) the esophagus may not be attached to the stomach or — highly unlikely 3) neurological.
Amelia’s Birth and 2 and a Half Months in the Hospital
Amelia was born full term, at Cedars Sinai Medical Center. She arrived into this world without a cry. I found that strange and asked my Dr., who – wisely not wanting to panic a new mother after 14 hours of labor – told me that sometimes happens. They handed me my baby girl for the first time. So small and beautiful. I also noticed that she had no rooting reflex. The nurse took Amelia to do some standard tests on her, and that’s when things started spinning out of our control.
Amelia turned blue and had to be rushed to a different part of the hospital. Nestor went with them, and I went to recovery. Nestor was gone for a really long time. I was on IV and not allowed to go anywhere, until I was a little stronger. He eventually came back to recovery, where he had to look me in the eyes and tell me that our little baby girl was in the NICU, hooked up to monitors and on oxygen. No one prepares you for this. We were not prepared for this.
Navigating this completely new world with Amelia was the most difficult thing we’d ever faced.
Amelia spent 2 1/2 months in the NICU. Days and months of doctors, nurses, surgeries, other families coping with their newborns, learning how to suction her nose and throat with machines, start g-tube feedings, watching monitors and figuring out how to be new parents to the tiniest, most fragile person I had ever met! Learning all over again how to follow your gut and instincts in a way I never had to rely on before. During the time I struggled with coming to terms with Amelia’s situation, I found great comfort in the poem “Welcome to Holland” and highly recommend reading it.
We were finally able to bring sweet Amelia home, only to have to take her back to the ER a week later for pneumonia and another week in the PICU. It was devastating. Finally, we were able to bring her home to our little place in West Hollywood, and a few months later, we were able to transport Amelia back to NYC at 5 months old.
Amelia had a working diagnosis of Bulbar Palsy, which has now been changed to mixed Cerebral Palsy, medically fragile, GERD and chronic lung disease. She is 100% g-tube fed, non-ambulatory, non-verbal and requires frequent suctioning. Amelia’s brain doesn’t coordinate well. This includes gross and fine motor functions, like simple basics such as swallowing.
In 2009, Nestor called me and said “I just want to throw this out for discussion. Don’t answer me now, just take some time to think about it….what do you think of moving to LA?” I said “Let’s go!” So, for many reasons, including Nestor’s work life (he was away too much), Amelia’s health (lots of hospitalizations during east coast winters) and space issues (NYC is expensive to upgrade to a 2 bedroom!) we moved to LA.
We settled beautifully out here. Amelia seemed happier and stronger than ever. We found Amelia a wonderful, special education center, Lokrantz. She’s been there for 7 years and loves it.
To Have or Not to Have Another Child
In 2011, at 39 years old, I told Nestor that if we were going to have another kid, we needed to do it now. We were terrified, but we had been told by other “special” families that having another child was the best thing they had done. It added balance and normalcy to a not-so-normal world. We went to my OB (who also delivered Amelia), and he gave us the thumbs up. Through some kind of miracle (we were given a 5% chance of getting pregnant naturally), Lucy was conceived on the first try!!!! She is a force of nature!
I have to agree with everything we were ever told by friends. Having another child brings words, laughter, music, milestones and joy to everyone in the home. Amelia is happiest with her sister around. She listens to Lucy more than the rest of us. Lucy is only 6, but she has more compassion and empathy than most adults I know. She has grown up in her sister’s world and thinks nothing of it.
Amelia is now a young lady, 11 years old, 4’10”, 95 pounds and fully developed. When we used to go out with Amelia, when she was small, people would see her and not necessarily understand she had a disability. They would say things like, “Oh, she looks tired,” because she was very low-tone and floppy as a baby. Now a young woman, it is obvious when you see her in her wheelchair, with her open mouth, posture, and drool that Amelia is not your typical preteen.
It is painful as a parent to see the blatant stares. My response is always the same, eye contact, a huge smile and a big “Hello!” With children, I will usually introduce Amelia by name, ask them their name and ask them if they like Mickey Mouse, Tangled, The Incredibles, etc. and say “Wow! Amelia loves those too!” If Lucy is there with us, she’ll usually chime in with her two cents about Amelia, too. It shows them that Amelia shares commonality, and I usually see the child relax and smile at her.
With adults I am less enthusiastic. I will smile. It’s a cold smile, but it is a smile. I say, “Hi. How are you today?” Rude behavior is rude. I don’t hold children accountable for their questioning stares, but adults should know better.
Communication Strategies and a Creative Environment
Amelia’s communication with us is very limited. Most communication programs we’ve tried are difficult for her to access. Amelia’s hand lags, and iPads don’t like that. She’s done really well at school with an 8 picture talking device, and we’ve gone to “Communication Camp,” where things seemed to be moving in the right direction, but the kid at school/camp is very different from the kid at home. We’ve had recent success using laminated pictures (called Picture Exchange Communication System or PECS) of movies, toys, and emotions, but it’s a long, slow process. In the meantime, Amelia has one American Sign Language (ASL) sign that she uses for “yes” and lots of smiles and laughs, frowning and complaining, or crying.
I always try to think outside the box when it comes to her. We don’t want our home to look like a hospital or therapy space. I want her room to reflect her and not her health issues or diagnosis. Her respiratory machines are absolutely accessible but tucked neatly away in her closet on a very functional cart from The Container Store. Her feeding pump is by her side in the playroom on a short little toilet paper holder rather than an IV stand — it works perfectly for her! Amelia’s life and needs have been integrated into our home.
Experiencing Puberty and Menstruation
When Amelia was around 8 years old, her pediatrician ordered lots of general workups to be done on her, including blood work. We wanted to see where she was in terms of physical development. An important piece of information that came back was the knowledge that Amelia’s estrogen levels were high. She was right on track to hit puberty and start menstruating soon, which is not unusual for kids with neurological disorders. Amelia’s message centers don’t work the same as ours.
I remember the slight panic I experienced, when her Dr. told me this. She also informed me that we had options. We could put Amelia on medication to stop her estrogen levels from rising. I asked the Dr., “If Amelia was your daughter, what would you do?” Her response, “Nothing. Let nature take its course.” It was also pointed out to me that once Amelia’s period started her growth would slow down. When you have a person who is dependent on you for everything, smaller/shorter is better. Amelia takes after Nestor’s side of the family, and the women on his side are 5’10”-6’ tall! As I mentioned earlier, at 12 years old, her growth seems to have slowed down, and she is around 4’10” and about 95lbs.
I still didn’t know how menstruation would work. I talked to her aids, teachers and nurses at school. Amelia is in diapers. Should I just keep her home during that time of the month on a chuck (those big underpads they use for incontinence)? Do we put a pad inside the diaper? Amelia started her period when she was 9. As it turns out, we don’t put pads in her diapers. We make sure we change her diapers more frequently. Amelia usually wears black leggings during that week. Also, we use a peri cleanser spray and Ready Bath Wipes to help control odor and cleanliness.
Another thing we noticed was that the hair on Amelia’s lip, under her armpits, her private areas and on her legs was getting longer and darker. We started to shave her armpits and bikini area (only in the summer, when she’s going to go swimming) around 9 years old, we haven’t started her legs yet, because it’s so much work and it seems like it will be itchy and uncomfortable growing in. We’ll probably have to start by next summer. This past summer, I bought an in-home laser hair removal system. We’ve been attacking her lip and armpit area. It seems to have slowed the growth, but hasn’t removed it completely.
Reflecting on our experiences with Amelia, I often think of the moment from the Disney movie “Inside Out” when the character, Disgust, sees a new button on their control panel and asks “What’s pooo-bur-tee?” Joy answers, “I don’t know. It’s probably not important.”
Overall, puberty has been a very new experience for us, one that keeps evolving with Amelia. I am grateful to be able to reach out to our village and get advice from people who have been through it. When I see Amelia’s beautiful smile and hear her sweet laugh, I know we’re doing okay.
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