From the Heart parenting stories feature real families, real struggles, real wisdom.
Like a family portrait, the stories highlight the beauty & strength that is uniquely your family.
Do you have a family story you'd like to share? Contact Megan at firstname.lastname@example.org for more info.
Amanda is the type of mama you could do some activist work with during the day, and then at night go out dancing with. She strikes that kind of balance. She's fiesty, fun, with spear-pointed determination when needed.
I met Amanda and her son Andy in our Positive PlayTime group last year. Amanda and I share our love for the Utica, New York area, although for different reasons. And our appreciation for life & the small things. Little things one might take for granted if you've never had to go without.
Last summer, Amanda and her husband Ben, shared their powerful story of Andy's birth with me.
“I went into labor on July 27th. I went in and out of labor and delivery five times before I was admitted on August 7th. To me, it was just like any other first time mom. At the time I felt they should have been helping me as I was 3 cm dilated, but hearing other mom's who were dilated for that amount of time, it's very possibly that it was normal.”
I imagine retrospect for moms in Amanda’s shoes can be brutal.
How is one to know what is normal and what is not?
How is one to know when the brain damage to Amanda’s sweet baby was done?
“On August 7th, I went into labor and delivery at 1 am. I hadn't felt my baby move in 2 hours. They hooked me up to monitors. The monitor didn't show movement, but after an exam there was movement. My water broke shortly after, and they admitted me. I started being induced at 7 am on August 7th. I gave birth to Andy at 1 am on August 8th. Throughout the labor there were complications with monitoring and equipment.”
“When Andy came out, he wasn't breathing. He wasn't screaming. I asked why my husband wasn't cutting the cord. I asked why he wasn't breathing and no one answered. I asked if he was alive, and the doctor told me yes. She said that she was handing him to the other doctors because he needed some help breathing. I found out after that he had Apgar scores of 2 and 3.”
Ben, Amanda's husband, shares, “Those moments after he was born, were the scariest.
Not knowing minute to minute if he was going to make it."
“After a few minutes they told me to give my baby a kiss on the forehead and that he needed to go to the NICU for oxygen. I got to kiss him on the forehead. I didn't get to see what he looked like. After the doctor helped me with the afterbirth, I was told I would be going to recovery for 2 hours. I asked if my husband could go with me and they said no. I asked if he could go with Andy, and they said no. I told my husband to go wait in the waiting room on the labor and delivery floor. And they told him he wasn't allowed to stay in the hospital at all, and he had to leave. We were never given an explanation as to why he wasn't allowed to stay.”
“The recovery room was similar to photos of a triage you see in the military. Women were less than a foot apart on beds with only a curtain separating. There were about 20 women squeezed in a small room, with two nurses at the desk. I had my flip-phone cell phone and I began texting my husband when he got home. The nurse came over and told me I wasn't allowed to use my phone.”
“Less than two hours later, someone from the NICU came and told me my son was having seizures and was being transferred to Bellevue, another NYC public hospital. I had to sign a permission or release for the transfer.”
“I had questions and they sent a nurse from the NICU to come talk to me. She explained to me how many seizures he had, what they looked like, and what treatment was available at Bellevue that they didn't have at Elmhurst. She was going to wheel me to the NICU so I could hold him before the transfer and wanted me to check if my husband wanted to ride with Andy on the transfer. She didn't understand why my husband wasn't there. The night and day discrepancy between nurses in the NICU and the nurses and doctors in labor and deliver was clear."
“While the nurse was pushing me to the NICU, a woman, who I was only able to identify as a doctor based on her uniform, stopped me and told me multiple times there was no way for them to realize that he hadn't been breathing before he was born. I told her I understood, it's not your fault and then she moved out of the way for the nurse to finish pushing me to the NICU. Apparently she was the attending doctor, but I had never noticed her.”
“I signed the release form for Andy and I called my husband. He said it would be faster and easier for him to meet Andy at Bellevue, then to try to make it to Elmhurst, to meet me in time.”
“I got to hold Andy skin-to-skin for about 20 minutes before the transfer. And that was the first time I knew Andy was going to be ok because he felt alive.”
“I don't want money. I just want to stop this from happening to other people.”
“Cerebral Parsly is brain damage that takes place sometime between pregnancy and shortly after birth. CP is a huge spectrum. Children with CP have a delay in motor skills. Brain damage and delays can be from slightest to most severe. Infantile spasms, of which Andy suffered, can occur." You can read Amanda's blog as she beautifully and powerfully chronicles her experiences since Andy was 7 months old, including the reality of ACTH injections.
“After Andy's transfer to the NICU,” Amanda shares what it was like to be separated from her baby, “they brought me to a room that was a shared room with a mom whose baby was rooming in with her. I would cry every time I heard her baby. The nurses throughout the day would come in, see me crying, and ask me why. I would say that I wanted to see my baby and they would tell me just a minute, I'll go get him. Then they'd look at my chart and realize he'd been transferred.”
“No one helped me go to the bathroom. When my husband was visiting, I showed him how if I pressed the nurse's button, the light would turn on, you could hear it connect to the nurses' desk, and then you could hear them turn it back off. That night I decided I was going home in the morning. I filled out the birth certificate. I informed the nurse on staff that I would be going home in the morning. I was aware that I was signing out AMA (Against Medical Advice) and that my husband was an attorney and I knew my rights. She told me the paperwork would be ready in the morning, and required me to watch a video on Shaken Baby Syndrome.”
“In the morning, I showered and got dressed. The morning nurse found me and asked why I was in my street clothes. I said that I was going home. I told the nurse last night to start the AMA paperwork. She told me that wasn't in the system. I wasn't allowed to go home and I needed to put my gown back on. I told her, ‘I'm giving you a courtesy by giving you the opportunity to have me sign out properly. If not, I'll just walk out.’ She asked that I give her a few minutes. I agreed. A doctor came in. She told me she already planned on allowing me to go home today because she understood the situation and knew that I was healthy. The doctor did an exam. Gave me prescriptions. She told me the nurse would bring the discharge paperwork. While she was there a lady from administration called and told the doctor I wasn't able to leave unless I signed out an AMA. The doctor said ok and I signed the AMA paperwork so I could go home. They refused to transfer me to Bellevue to be with my baby. I walked out myself because no one would bring me a wheelchair.”
Ben, Amanda’s husband, remembers the time after Andy was born. “They told me to go home. I was there sitting in our bedroom at home and Amanda told me over the phone at 5:30 or 6 in the morning that Andy was going to be transferred to Bellevue. I get on the train to go to the NICU, exhausted. I had been up for a day and a half at this point. I was riding the train for what seemed like forever. I got off the train, and it's still a pretty long walk. I remember taking off towards the hospital. I get there. It's a large hospital. I am walking around asking, ‘Where's the NICU. I want to see my son.’ They are directing me to registration. I get what I need and faced a doctor and fortunately the doctor told me he was stable."
"That was the turning point, where everything else we had to deal with is minor in comparison. From there, we were in the NICU with him. It was an endless stream of information we had to get our heads wrapped around. We had to be smart and capable and make the right decisions for him. It's a really traumatic time, not everyone can wrap their heads around, whether it's the diagnosis or who's doing what. We learned on the fly. We were first time parents. We had to learn quickly: being there for him, making decisions. Amanda was working so hard to pump and produce milk for him. She made a conscious decision to pump, even though it was harder in a lot of ways."
"We didn't have a lot of financial backing,” Ben recalls. Over the time period while we were in the NICU, we had the support of family & friends visiting us. Sitting there day after day, hour after hour, it's so tense. The time passes so slowly. So much is unsure, what will happen yet. We were fortunate, the people who came to visit us. To see how vulnerable life is. Andy was very vulnerable at that time. He had been transferred from Bellevue to the NYU hospital next door. Bellevue had semi-private rooms, NYU was more of typical NICU, bed after bed of sick infant. A friend visiting was sick, and has since passed away. Seeing her, and Andy hooked up with all these sensors.... On one hand: someone dying of cancer. And then a child who has just come into this world, so vulnerable—and all the other children at the NICU. Being witness to a child who was coding out, and eventually passed away. After 2 days, I felt like a veteran. A couple times, we'd have to leave because the medical staff needed every square inch of the room. Visceral experience of how vulnerable life is. I don't think about it on a daily basis. I think it would be too difficult.”
“A baby in a bed right next to Andy in the NICU passed away while Andy was there. In the NICU we were in, there were a lot more babies than parents. When we asked the social worker, she said many parents don't come back,” Amanda shares.
Ben continues, “When we walked out of the NICU, it was a fresh start of us trying to do the best for him. That was end of August/ beginning of Sept 2012 and after that was living in the moment. Moving on and doing the best we could. So many times we had to get on the train and spend hours for his follow-up visits, between the train ride, waiting, and the actual visits.”
“We moved forwarded with lawsuit due to medical malpractice. We are going forward vindicating Andy's rights. I'd like other parents to know their rights. Other parents, if they're in this situation, they should consider legal recourse, even if it is during a trying time. I remember we went to see the lawyers representing us now for the first time when Andy was just a few days old. I asked a mentor of mine for a referral for a medical malpractice lawyer. I called him and we set up an appointment, set up necessary paperwork, and we just left it at that. I know from being a lawyer, clients can kind of get in the way. So we just let them do their work. If you are in this situation, at least get a consultation. Statute of limitations run pretty quickly. With a hospital that is part of a municipality, there is a 90 day rule. We were dealing with a NYC hospital, so we just had the 90 days. Know your rights. Even if it's just knowing how long you have, and to consult with lawyer. Once you lose that time, you never get it back. On different pages or groups on-line, people will say, ‘this happened to my child 4 or 5 years ago and what should I do.’ And for them, the page has turned. So it's better to be vulnerable, when the wound is new, and do something about it.”
Amanda concurs, “Know what your rights are. Consult with an attorney, if you feel like harm has been done to your family. I am sad, when people are just starting to come out of the haze of trauma, their time has passed.”
“I was really nervous about having to do the depositions. Within 5 minutes of being sworn in, I realized it wasn't my burden to bear. It was just my story to tell. I told my husband on the first break, do you know that Polish proverb, 'not my circus, not my monkeys.' ”
It’s not like Amanda’s life had been easy up to the point. She had lupus as a child, and earlier in her relationship with Ben, she was sexually assaulted by one of his friends. Ben’s father died while she was pregnant with Andy.
“He was our biggest emotional support and had helped us financially. When he died, he was surrounded by pictures of his family, including the ultra-sound of Andy. And he had just found out a few days before we were having a boy. We think he was at peace as his youngest son just finished law school."
“We both also know what it took from us,” Ben says. “What other parents get to experience in the first few days after birth. What we felt. How traumatic it was. His developmental issues. Getting sick. His diagnosis. That time in the NICU, it was a critical time for us.”
When Andy was 5 months old, we were all crammed into our bedroom in his mother and grandmother's apartment and Ben to her, ‘I've always heard God is good to those who are humble. How much more humble do I have to be?’ “
Ben remembers, “I was interviewing for two different jobs when I had been really pessimistic about my outcomes for work. Amanda was doing anything she could to help, including taking a job at a rental place. That was so hard because I wanted to provide for my family and I felt so helpless. It was some of the worst frustration I have felt.”
“We'd originally dreamed of me staying home with Andy, and then we realized that I would have to go to work and Ben would be stay-at-home dad until he found a job.”
Ben recalls the same time as Amanda, New Year's 2013, “we were in tears: at a loss as what to do. I was staring at the ceiling, saying what more do I have to do. I was at a loss. And in a week later, I found out I had a job at the public defender's office. I am not going to say someone heard me. Maybe. Maybe not. But I hit rock bottom with an extreme introspection. And within days, our fortune changed.”
Amanda remembers, “Within a day or two, we found out Ben got the job in Utica with the Oneida County Public Defender's, doing criminal defense cases.”
"Thinking back on it now, we try not to be too sentimental. But there's times when we just look at each other and say, 'look how far we've come.' Or just be grateful for what we have. That's what drives us. It's highly influential on our attitudes moving forward."
Now three years down the road, Ben is reminded how much it's changed for us. "For the better, we've matured."
Amanda adds, “people who have gone without can appreciate what they do have. One day we spontaneously stopped and bought a $10 blanket and realized how fortunate we are today.”
"Andy now has a wheelchair, a little sister, will be doing a communication device evaluation soon and will going to an integrated preschool program in the fall." Amanda advocated to have accessible playground equipment installed at a local park and completed a medical fund-raiser for a chill our chair for Andy.
This photo may best capture how life has come full-circle. "This photo is very powerful, and meaningful to me. After I had Andy, every mother I knew, had photos of herself in a hospital bed with her new, healthy baby. And I missed out. So I got my hospital bed photo, with both of my babies."
You can follow Amanda as she chronicles her and her family's journeys at www.thebunniesmama.blogspot.com and at the Andy's Hope Facbook page.
From the Heart parenting stories feature real families, real struggles, real wisdom.
Like a family portrait or trophy, the stories highlight the beauty & strength that is your family.
Do you have a family story you'd like to share? Contact Megan at email@example.com for more info.
this week was
and my teacher
of the last 10 years passed away
a week of endings
before new beginnings
i drag my feet
is hard work
of the heart
right after it happens
my whole being
says no it isn't so
i'll miss you too much
themes of my life
yet i mourn it
i accept it
we had a beautiful last week of school
culminating in the annual award's ceremony
in our Education for Life school
this is the way the year ends
with a special recognition of each & every child
for who they are
and who they've blossomed into over the last 9 months
the honoring of this unfolding
always gets me a little teary
and my son
"i don't want to leave kindergarten"
and me sad
because the school year has ended
our beloved teacher Helen
now part of our extended school family
but not our teacher anymore
not only was she my son's kindergarten teacher
but she was my teacher too
the close of kindergarten
children's gifts unfolding
i might always be a little emotional about
but this week
felt even more
with the death of our dear monk
who left us in the physical realm this week
not at first believing
so special to me
was leaving this earth
part of life
rites of passage
children's growing up
my life today
your life today
whatever it is we experience
it's true and real
even when we wished it weren't
have you ever watched....
the exact moment
when the sun dips
behind the horizon
on the ocean
it almost makes a sound
when you know
but it seems
for you know
for better or worse
won't be the same
but you trust
life will go on
even when it feels
like it won't
we slow down
to mourn the change
of name + form
of space + time
of years + life
but it all goes on
as my son says
another name for one is infinity
for we all go full circle
so this week, dear friends
what has ended in your world to give birth to a new tomorrow?
what change are you mourning so you can fully embrace your today?
what ending from yesterday brings you new life?
how can you honor your place of in between?
like the sound the sun makes
in that moment
when it disappears
behind the ocean
and it's not night
nor is it day
Hi friends, I write from the heart to tell my life story, and the story of those in my neighborhood called life. Research shows that our children's emotional & mental health is contingent upon us parents being able to tell our life story, or "coherent narrative." This is my coherent narrative, my life story in the making, with some of what I love in life too. My goal is to share my life in a way that is real, uplifting & positive- sometimes serious, sometimes fun. In my practice, I inspire parents to empowerment through reclaiming our life stories and learning respectful discipline. My work is my offering to our children- our future. Wishing you all a happy family!