Amariah is a wonderful addition to our family and creator of many blessings and growth in our lives. We all would not be who we are today without her. There is a story that goes with her unique entry into this world, and I’d love to tell it. Here are the beginnings and continually, as I recollect where we’ve been so far, I add…
“I saw that life. That life that in the beginning gave you so many feelings of helplessness. Never have I seen such a happy, FULL OF LIFE little girl. I fell in love with her instantaneously. She is oblivious to the fact that at anytime she was not in complete control of her life. I love knowing her history…but I have a feeling it will pale in comparison to her future. Greatly pale in comparison.”
What would you do if your baby stopped moving in gestation? It's the summer of 2002, pregnancy three, and I’m thirty-six weeks along. My other two pregnancies were great, with no complications. We lived on a military post in Tennessee and life was well. My husband was in the infantry, serving in an anti-armor unit. It's about one year after 9-11 and only a few months before Bush was going to declare war with Iraq, unbeknownst to us. At that time I was excited to soon be having our third child, a little girl. One Friday evening, after Shabbos dinner, I notice the little kicker is sleeping, seemingly happy after our meal. So, I lay down to sleep too. When I wake up in the morning, I notice I slept quieter than usual, my little baby wasn’t so active. But I only noticed with the stillness ever present. I begin to wonder what’s different today. I ate breakfast in hopes she would liven up, and still no activity. Now I know something is not ok, so I rush to the ER that Saturday morning,…
As I arrived at the hospital I felt two different feelings. One was doubt, thinking I must be acting overly cautious. The nurses were all going to wonder why I came in and tell me everything is fine. The second, and less pronounced feeling was, ”something is terribly wrong.” I was quickly escorted to an emergency room divider and hooked up to the ultrasound machine. The nurse gave me orange juice to see if the sugar would wake my baby girl. No movement on the sonogram. They were, however picking up a heartbeat. Next, the doctor came and used a loud buzzer to see if the noise would startle the baby. Still no movement. It was about 15 minutes after I had arrived at this point when the doctor stated ”prepare an O.R.” Now I knew something was wrong, but I am comforted by the fact the sonogram is picking up a heartbeat from my daughter. At that point hospital staff calls my husband who stayed home with our other two children ages 2 and 4. He was able to get help from a neighbor to watch our little ones and came to the hospital, after I was prepped, given anesthesia, and ready for the operation.
He arrived just in time.
I wasn’t quite sure what to expect, I was not prepared for the possibility of an emergency cesarean. I wasn’t sure what was wrong with my baby, but my husband sat beside me and held my hand as we waited…and waited. I heard that she was delivered, but there was no sound. It was complete silence.
and it continued,…
I wished at that moment I could have jumped up off that table and rushed over to her. I hadn’t seen her yet, they were 'working' on her. Nobody could take the time to explain anything. I just heard the nurses calling out stats. No hearbeat. No breath…my baby….
It was absolutely, to this day, the longest silence I have ever suffered. Oh the things rushing through my head, and the cluelessness. Five minutes had passed and she was finally revived. We were all thankful and completely worried at the same time. I never did get to hold her. She was placed in a covered oxygen bed with an oxygen mask on as well. I got to see her roll past as they took her to the intensive care unit. Never in my life had I been so scared, or felt so helpless. I had to stay in that room and finish my surgery. My husband went along to stay with her, but he wasn’t me. Who would tell me what too expect, how she was, or what she needed? What had just happened? Will she survive? They soon took her by helicopter to Vanderbilt University Medical Center in Nashville, TN. And just like that we were apart, so very far apart.
There I am, in the middle of nowhere stuck at a military hospital while my daughter was over an hour away receiving intensive care. It was driving me nuts! I was going absolutely crazy! My husband went to Nashville with her, but it is not the same. I’m momma. I had two children staying with friends that I hadn’t seen, and baby girl in NICU in another city. No other family around yet, and here I am told I can’t leave. They required me to even take a baby class before they would discharge me! What??!!! We had two already!!! I knew how to change diapers, feed a kid, and not to mention MY BABY NEEDS ME! I couldn’t believe it. I tried to recover as fast as I could and avoid the required three day stay. The minutes felt like hours that we were apart. Later I received a call from my husband that made me feel even worse, and the need to get over there increase exponentially. He was buckling under the sights and sounds of a NICU unit, a children’s hospital, and not knowing what would happen with our daughter. I felt so helpless and frustrated. Well, I succeeded and got out after twenty four hours. I felt and looked horrible, but didn’t realize it at the time. A wonderful friend of mine drove me from the military hospital to Vanderbilt at ten o’clock at night. Over an hour later I finally arrived to the side of my daughter. I was relieved to be by her now. I desperately needed a breast pump and a bed to sleep in, and to find the sanity to continue this unique journey set before me.
Once I jumped through the hoops of getting through hospital staff, I was taken to the bedside of my baby girl. My previous two births were normal, so I had no experience with what I was about to see. There she was, so tiny, and hooked up to more things than I could ascertain. Even so, there she was. I was afraid to touch her, I couldn’t hold her in my arms, but I shyly began to speak to her and let her know I was here. I felt timid amidst all the nurses, doctors, and hustle occurring in the NICU. I was younger, had it been today that wouldn’t have crossed my mind. Relieved to be there, tearful at the unknown confusion of her health, and exhausted, I was ready to take on the next thing. Whatever I needed to do to help her, I would. However I could improve her recovery, I was there. The hospital found a family room for us to sleep in that evening just a few steps away from where Amariah was. I remember speaking to faraway family on the phone and finally laying down to sleep. The sounds of the hospital running in the back of my consciousness all throughout the night, my body got some much needed rest. It was August 2002, my new baby girl had pulled through a difficult delivery, and was here looking at me. Thankfully. I had only seen her for just a mere moment at her birth, with her eyes closed, as they wheeled her away to a medi-vac. I had no idea then, but this wouldn’t be the last time I had to let her go away in an ambulance without me….
The next day I awoke early and not feeling so well. Everything was sore and tired and swollen. I tried to begin understanding more about what the doctors and nurses had been doing while I was away and what her progress was. They were waiting for all of her organs and vitals to stabilize, and monitor that they stayed that way. She was given phenobarbital for a suspected infantile seizure soon after her arrival to NICU, and no other had occurred since. She was still using breathing support and had so many different wires everywhere I had no idea what they were for. She was always drowsy and sleeping the first few days, possibly due to the medicine, and the whole ordeal of her body recovering. What I wanted to know was when can I hold her, when can I feed her, how can I help her? She was using a feeding tube only and I was pumping and freezing milk left an right, determined that when she was able to eat it would be momma milk and not formula. A lofty goal for a hospital cared for baby. I wasn’t sure if she would ever be able to eat, or to nurse, it all depended on a trial and error process. There was a possibility she couldn’t hold a bottle nipple or nurse properly. We had to wait and see. The good news was she was improving as she was there, and I was praying that it would continue. I feared regression, I feared even death. I always worried about getting a phone call or an emergency request back to bedside because of some unexpected downturn. Awful, I know, but I balanced those fears with hope and prayer and positive expectations. We were able to find a place to stay across the street at the Ronald McDonald house. At first it was just my husband and I, and the place was amazing! There was a huge stocked community kitchen and a hotel style room. We would make ourselves some food and go to the hospital everyday. Sometimes organizations would cook fresh hot food and bring it to the facility, and that was a treat! To them we are grateful for providing a place to be close to our daughter and still be able to get much needed rest. I would be so wiped out after a day of walking to the hospital and back, helping our baby, and trying to heal myself. Cesareans hurt, and take longer to recover from than natural deliveries. I made it out of the hospital within 24 hours, but I sure was feeling it. Another thing we did was make an audio tape singing and praying and telling stories to her, so she could hear us even at night when we were asleep. The nurses would rewind and play it for us. There was not much physical contact still and it was my way of reaching out, letting her know we were here, always. Usually when a momma has her baby, they spend so much time together those first few days and weeks. From her womb to her arms. My others were always nursing, falling asleep in my hands, cuddling, rocking, momma talking face to face making googlies and ga ga’s. This baby hospital bed was foreign to us, un-natural, and I longed for her to feel me and I her. There were noises common to the NICU that I imagined she would always be comforted by in the future because of the time spent there. It was a cold busy place for a baby. I thought I would have to turn on beeping timers all day when I got her home to help her fall asleep! That was not the case, but it was all too strange an entry for a new life. Though we are thankful for the miracle of modern medicine to have given our baby girl a second chance.
We were able to be at her bedside for a week before our other children came. While all the first days were occurring, my parents were driving from Texas to come and help us. Until they arrived our good friends were watching over Alexandria and Anthony Jr. at their house, and the kids were having a blast with them. Amariah’s grandparents came to see her first and gave us all hugs, and hopes that everything would keep improving. Then my mom and dad were able to pick up her siblings and take them back to our home, about an hour and a half from the hospital, while we looked over our new baby. Soon, they would be arriving back to leave us the kids and we were going to embark on having the whole family together at the hospital while we waited to determine Amariah’s fate.
My husband and I were checking up on Amariah daily and hourly, sitting by her bed talking, and even finally getting the chance to hold her for the first time….. holding her for the first time was like a long coming dream that finally came true. I was afraid to hold her, I didn’t know if I would unplug that all important wire or hurt her somehow. Even to this day my understanding of everything going on is so limited. But my fears vanished when her warmth came close to me and I was able to rock her in my arms. What a glorious moment! All of the tubes and wires disappeared, and I saw her. Into her beautiful eyes I stared, feeling her gentle heartbeat, watching her breath, it was simply miraculous. Feeling my baby daughter next to me for the first time since that turmulous delivery was healing to my soul, and I am sure to hers as well. We both marveled at her improving health, and finally felt a little more hopeful that we would make it out of there with a new baby girl. That moment I will never forget. Naturally we spent all the time we could holding her from that point on, rocking her next to her bed as much as humanly possible. Until exhaustion. Our other children arrived to us at this point, and we said our goodbyes to the grandparents. Now we were managing the health of our baby, and two toddlers in a place away from home- a hospital and a hotel style room. Alexandria and Anthony were four and two. Wow! They were as good as they could be. The Ronald McDonald house had a huge playroom they enjoyed immensely, and an outside playground. It just got very difficult for the both of us to be at the hospital together because the tots couldn’t hang there so patiently. It was hectic, but what did it matter? We were all in this together, and the children got to visit their new sister for the first time, talk with her and understand a little bit about what was happening. If you ask them today, you know what they remember? How much fun they had, playing with certain toys there at the Ronald House. There was a McDonald’s Drive thru play set they talk about all the time. It’s funny what sticks. We also have a special quilt from them given to Amariah, and a few toys that were donated to kids staying there. A scary time only remembered by our family as a blessing. They are obviously doing something right. Ronald McDonald House, as I am sure many others before us and many after, you helped us in a way that can never be matched. We are thankful for what you provided us during our daughter’s hospital visit, at one of the most trying times of our young lives: comfort.
What happens next? Amariah’s health was improving, so, hospital release? Possibly. She had to come off her feeding tube and began eating and digesting well. My thoughts: bring it. I had worked hard to store up nourishment for her, and desperately wanted to bring some normalcy to this babyhood and see her eat on her own. The fateful moment came when the staff was ready to let her try, I got to give her the first bottle, and it went great! Fears of failure and feeding tubes started to disappear as I watched our little baby take her milk and swallow. Joy! From that point on I was on a schedule and a mission: feed her every two hours. Burp her, hold her, watch her rest, and start over. Things were moving along nicely and Amariah was soon being nourished by nursing all on her own- simply amazing. One concern of NICU babies who may have neurological effects of oxygen deprivation is that they wont have the ability to nurse, or even take food from a bottle. The fact that she could was a great sign! Though she was able, possibly not as well as others. She did not nurse as long, and I supplemented a lot more with formula. Nevertheless, I was thrilled. Sooner than later we were preparing to take her all the way home. Figuratively and literally. It was difficult to imagine I had any ability to care for a child who was just monitored twenty four seven by a “team.” You mean you want me to leave here all by myself? Can I take a couple of nurses, maybe a resident doc? How about a few beeping machines to help lull her to sleep? Nerve-wracking, and joyous, all wrapped up into one. We spent all of our spiritual energy asking for this one moment, ” please God, bring healing and let her come home.” Now it was time,…
"Just love, care and bonding”
Home. Home meant a two-hour drive staring at her in a car seat the whole way. Home meant caring for our two darling other little children and figuring out how to manage three. Home meant going it alone. Personally I was celebrating, we helped her get better I felt. We never gave up, we kept hope, we did everything we could to make her comfortable and close to us at the hospital. She was recovering from her traumatic birth so wonderfully, so let’s resume to normal now. We said goodbye to the Ronald McDonald house whom we fell in love with, without them our journey would have been much more difficult. We parted ways with the Vanderbilt team, and no specific orders except to follow-up with a pediatrician back home. I was a bit confused, how could all of that complication result in a seemingly uneventful departure? I touted it as a miracle, because of course we prayed the entire time. I honestly was either in huge denial or complete ignorance. I thought this was the end of it. I did not even realize when my baby girl was born, she was not alive. I did not fully grasp what exactly happened. No,… stillbirth and dead were not terms I allowed in this context. To me she was always alive, maybe pausing for a bit almost like taking a deep breath,….but alive. I saw her heartbeat on the ultrasound, and the silence of her arrival escaped my understanding. The time that passed until the first cry- forgotten. At least for now. ”Oh look, we won! Let’s get back to playing house and raising a healthy, normal family.” The next few months were unvaried, just the regular well baby checks and poopy diapers. Thats it. Amariah was a very calm baby, did not fuss too often, and slept – A LOT! I remember thinking, “She just must still be resting up from all the commotion of her entry into this world." Perhaps she was, but looking back there was most likely more to the reasoning. I was so surprised at how easy she was to take care of, how I could cook with her in the bouncer as she watched, and keep her happy and fed. I even had feelings of grandeur, ”I got this, I’m awesome at the mom thing now.” These months I call the Time of Blissful Ignorance. We had no idea of what was ahead of us, and put behind us the scare of her birth. Walks, playtime, and gazing at her growing was beautiful. Having her here was amazing, miraculous. Thinking everything was fine was freeing. Treating her as normal was wonderful. No fear, no judgement, no loss, no grief - just love, care and bonding.
She came home, we felt fortunate. The mixture of ignorance and denial convinced me to believe she was going to be fine now. All I had to do from that point on was be thankful, and take good care of her and her siblings. What I did not know was it was the calm before the storm, the long unending drawn out storm. And I haven't been able to write past her coming home. I suppose it's because I loved and appreciated that season of not realizing so much, and I don't want to let it go. I pretty much live my life today encapsulating those few months as reality and carry it with me. I think of her this way, as being normal and untouched by any limitations. In all reality, that's probably better for her on a daily basis, I don't know. The downside to that is when I have to face decisions about her direction in education or doing things other kids do, I am reminded as if it were a sudden surprise that oh ya, she does need modifications. I'm faced with certain programs being unavailable to her and classrooms turning her away. It is in those moments I painfully remember all we have done, researched, fought for, learned, and worked on up to this point and that, no- her disability hasn't healed like a bad cold. It's still here, it's shaping her life and future, and it will continue to change mine.
The Distraction of Army Service
As we enjoyed our third daughter growing at home, news surrounded the post 9-11 scene in America. Rumors of wars and threats emanating from Iraq were increasing. It was then our family took a holiday trip back to Texas, in January of 2003. We visited Austin where my parents had recently moved. We visited the Alamo in San Antonio and enjoyed the company of relatives that were normally so far away. Having been on our own in Tennessee was marvelous, seeing close family intermittently was more appropriate and workable for us. We were growing together as a new little family so much more, and it felt healthy. This little jaunt back to Texas had come about suddenly, it was good timing according to my husband's unit command. How naive I was not to realize why. During our long drive back home he got a call on our cell phone. It was "the" call. Friends from his unit on the other end confirmed, as soon as my husband returned, they were to prepare for deployment. I don't know why as an infantryman's wife I was stunned into disbelief. I looked at him as we drove, full of fear and sadness. It was our first deployment as a couple, well at all. It was HIS first combat deployment. This was not the back forty or a training exercise, this was it, the Middle East. I had a couple more weeks left with him, and they were not as he or I would have imagined they would be. No. Pre-deployment is a horrible thing. Couples go through a cycle that is not gratifying at all...what I imagined would be some surreal time of staring longingly into each other's eyes and cherishing every moment (laugh out loud) was not so...
"Stage 1. Pre-deployment
The onset of this stage begins with the warning order for deployment. This stage ends when the Soldier actually departs from home station.
This stage is characterized alternately by denial and anticipation of loss. As the departure date gets closer, spouses often ask: "You don't really have to go, do you?" Eventually, the increased field training, preparation, and long hours away from home herald the extended separation that is to come. Soldiers energetically talk more and more about the upcoming mission and their unit. This "bonding" to fellow Soldiers is essential to unit cohesion that is necessary for a safe and successful deployment. Yet, it also creates an increasing sense of emotional and physical distance for military spouses. In their frustration, many spouses complain: "I wish you were gone already." It is as if their loved ones are already "psychologically deployed."
As the reality of the deployment finally sinks in, the Soldier and Family try to get their affairs in order. Long "honey-do" lists are generated dealing with all manner of issues. At the same time, many couples strive for increased intimacy. Plans are made for the "best" Christmas, the "perfect" vacation, or the "most" romantic anniversary. In contrast, there may be some ambivalence about sexual relations: "this is it for a year, but I do not want to be that close." Fears about fidelity or marital integrity are raised or may go unspoken. Other frequently voiced concerns may include: "How will the children handle the separation? Can I cope without him/her? Will my marriage survive?" In this very busy and tumultuous time, resolving all these issues, completing the multitude of tasks or fulfilling high expectations often falls short.
A common occurrence, just prior to deployment, is for Soldiers and their spouses to have a significant argument. For younger couples, especially those experiencing an extended separation for the first time, such an argument can take on "catastrophic" proportions. Fears that the relationship is over can lead to tremendous anxiety for both Soldier and spouse. In retrospect, these arguments are most likely caused by the stress of the pending separation. From a psychological perspective, it is easier to be angry than confront the pain and loss of saying goodbye.
However, the impact of unresolved Family concerns can have potentially devastating consequences. From a command perspective, a worried, preoccupied Soldier is easily distracted and unable to focus on essential tasks during the critical movement of heavy military equipment. In the worst-case scenario, this can lead to a serious accident or the development of a Soldier stress casualty who is mission ineffective. On the home front, significant spousal distress interferes with completing basic routines, concentrating at work, and attending to the needs of children. At worst, this can exacerbate children's fears that the parents are unable to adequately care for them or even that the Soldier will not return. Adverse reactions by children can include inconsolable crying, apathy, tantrums, and other regressive behaviors. In response, a downward spiral can develop in which both Soldier and spouse become even more upset at the prospect of separating."
My husband was home and I wanted it to stay that way. I realize we were in the wrong profession for that to be a realistic expectation, but I was an idealist. I had hoped after he joined it would be the years our country wasn't going to get into any war. Rewind to the year he enlisted, February 2001. Three months after his jump training ended and our arrival to the first duty station, September 11 occurred. The beginning of my little idealistic bubble, bursting. Back to January 2003, three kids and a close call on a scary delivery, I was preparing to say goodbye indefinitely to the man who endured with me and the love of my life.
And So He Went
Early on a Shabbat (Saturday) morning the kids and I took Daddy to work. Dressed in his desert combat uniform, hauling his packed up A-Bag, this was the final goodbye. Our children- Amariah 6 months, Anthony Jr 3 years, and Alexandria 5 years old, all thought it was another regular day. I am pretty sure I was just in complete shock. We did not spend much time at the unit where all the soldiers were saying their goodbyes, but I admit I drove around aimlessly for another few hours after I kissed him farewell. I kept watching where his airplane was, waiting for it to takeoff. I had to know when his actual presence was no longer on the military base. My heart sank when it lifted into the air, I was completely mortified. I took on this motherly type of despair over him having to leave to Iraq. I knew even in all of my ignorance that the ways we felt together, the type of father he was, and his bubbly personality and outlook on life would all change. I was not sure how it would necessarily manifest, or even that there was a guarantee of his return. But the fear of death was not even comparably as strong as the grief I felt over his impending loss of innocence. The fear of the unknown change about to commence was deep, heavy, and still with me today because the lingering effects are still being sorted out. I was at that moment, and still feel to some degree now, on my own.
During the months of February through June of 2003, we carried on with Amariah as normal. I made fusses over wonderful activities we could all do together, Alexandria started officially home schooling with a structured curriculum as a Kindergartner, and we got our first family computer *gasp.* We had a great friends we did things with often whom to this day we all talk about fondly. When serious tornados came through Ft. Campbell, we slept over in their basement, we attended a NASCAR race, saw Opryland a couple of times, and journeyed to a baseball game in Nashville. Her kids treated mine like family, they taught them things like they were their older brothers and sisters. We all love them dearly. Bonding over a serious deployment is a powerful thing. In between those moments I was glued to the media about the war. Every network had a reporter on site somewhere, and I thought somehow someone must be attached to my husband's truck. I never found one, and hearing all of the stories broadcasted was not proving to be a very good thing. Today, a lot of veterans speak of email communication and phone calls between spouses, neither of which we had. It was the good ole send a letter in the mail deal for my husband and I. Personally, I think this is healthy, and I also think less media coverage is healthy. I continued caring for Amariah as I did my other two children during this time... but come April and May I was beginning to ask questions. Why isn't she as mobile as my other two children were? Why hasn't she learned to roll over yet? She sleeps a lot,... is everything ok? And the doctors began looking harder and started ordering developmental assesments. My husband was fighting a war, pushing through Baghdad and Mosul, and I was about to be given news I never, ever, wanted to hear in my lifetime,...
"Oh my gosh.. I just got the chance to read this. I got goosebumps!!! Please keep going with the story! "
"Wow!!! Difficult to comprehend!!! Would love to hear more about your story." -Ian
"This story touches me viscerally.
My 2nd son was born in code arrest.
He was revived, but his mother, a Med Assist, certified in CPR, had to take a CPR class before the hospital would allow little Ricky to come home.
I know your difficulties and feelings.
I am eager to hear the rest of your story.
You write very well." -Michael Blackburn,Sr
"What an amazing story – I have a daughter how’s now 8, at only a few months old she started having seizures – Reading your story brought back those feelings again, that gut-wrenching feeling of helplessness. So amazing, please continue with your story as you’re able!" -Paul Petterson
"Wow! Amber. This is so moving. You are so full of passion and love. This story brought me to tears. Bless you. Looking forward to the next installments." -Chris Lynn, Republic of Austin
"Wow. I don’t have kids so I haven’t experienced any of those emotions but the way you told this story was just amazing. Thank you for letting us get a glimpse of REAL LIFE and not these fake ones we see in the movies and TV. Truly remarkable writing and the story is one that powerful and amazing." -Jason (@ihubby)
"Your story is touching, an inspiration. I admire your tenacity, your courage, and most of all, your love…." -George Spink
"… what a miracle… thank God…" -Miko
"Dear Amber! Your story is very moving!
God bless you , your children and your husband:-)
Our life is full of miracles!
And Thank God these miracles happen very often in our lives.
You inspired to write me about our family life story!
All the best to your family!"
"Wow! I’m wiping away tears.
My son was full of wires, I’m still not sure why, for only five days when he was born. And then he was fine. But at 15 months, he fell out of our 2nd story window to the driveway. No broken bones, thank God. In second grade he developed a cyst on his leg. In the end it was some rare blah, blah, blah. But overnight 5 months later it was the size of a golf ball! Emergency surgery. Now we wait for the next thing. What will it be? Oh yes there have been a coupled of broken bones along the way.
Isn’t it interesting the lessons we learn and the chapters our lives create?
And yet, I feel our stories help others. Be sure to keep your windows closed!
May God Bless you, your husband and all the kids on this Veterans Day and every day.
Peace." -Karen Cendro
"There must be a universal law that the harder we work for it the more we treasure it.
Your rendition of your experience is a real “page turner”. Now, where was I?
Bless you and yours." -lifeaftereighty
Wow! What an emotionally gut-wrenching story! You achieved the primary goal of art in my humble opinion by eliciting all those feelings & emotions in your readers. I look forward to seeing more of your work.
Like any good storyteller, you left us wanting more . . .would love to read about the present day Amariah and what she’s up to now. Thanks for sharing . . ." -Greg Ackerman
"Thank you for the full story, what a true desire for life, I am deeply touched and have a deeper understanding of you my dear.
God has blessed you all." -Gregory Phillips