The Bond

Two young girls were sitting side by side on a loveseat. The oldest was 10, the youngest was 7. The older little girl was nervous, the younger girl filled with excitement. The eldest girl silently wondering if things would change, the younger of the two, not having a care in the world. Of course things were about to change. How could they not? Their father looked at both of his little girls, sitting side by side on the old worn and torn loveseat. Proudly, their father laid Him in the eldest girls arms. “This is your new baby brother.”

Just like that, it was as if the Fairy Godmother herself was standing, watching, and sprinkled the moment with magical fairy dust. In that moment,everything changed, and change is never a bad thing. This is when The Bond was born.

It would be a few years later when the eldest girl understood that it was not the Fairy Godmother who sprinkled the moment with fairy dust as she was watching, it was her grandmother.

The girls were on the school bus. One was in 5th grade, one in 3rd. The older of the two hated that bus. It was crowded, loud, and she never had anyone to sit with. The younger of the two did. Everyone knew Her and everyone loved Her. One of Her friends was laughing at the way the eldest girl had Her hair. Her friend laughing, and pointing, and laughing again. In front of everyone. The older girl wanted to cry, the younger one shut it down and shut it down real fast. The 5th grader was both grateful and embarrassed.

He would always want to hang out in Her room. Maybe because Her room was away from everyone elses, maybe because She was the older one. They would hang out in Her room while listening to Bryan Adams’ “Everything I do.”

There was one time that She will never forget. Mainly because He traumatized Her for life. We were sitting outside waiting for Him to get off the school bus. He was little, maybe 2nd or 3rd grade. He comes walking up the long driveway, clearly having something in his hands, along with a mischievous grin on his face. She looked at me, “What does he have in his hands?” He comes walking up to Her. Backpack on his shoulders, his little hands cupped in front of him. Maybe he made me something in school is Her first thought? He reaches his destination, thrusts his hands in Her face, slowly uncovers his top hand, and there, staring back at her is the biggest and ugliest frog she ever saw. She screamed. He laughed. To this day, She is scared to death of frogs.

Wednesday nights, on the way to church. Depending on the time we would always stop at McDonald’s and eat in the car on the way to church. Both girls would fight on who would get to sit in the front seat. You see, front seat means you would get the bag fries from good ol McDonald’s. It got to the point where we had to take turns. Just Her and I. He did not care, always in the backseat fully content on whoever it was that he was sitting next to. One thing is for sure, those bag fries never had a fighting chance.

Over the years, the girls had a love/hate relationship. My God did they annoy each other….and anyone else who may have crossed their path. Yet, it was one of those things where the girls could be annoyed by each other, but heaven help you if you would speak badly about the other.

She was at Her wedding. She was the only one, other than the justice of the peace. They decided on the Courthouse, and no matter what, She knew She had to be there. Afterwards, She asked the judge if She could take a picture of Them, the three of Them. Husband, Wife, and Justice of the Peace. He agreed, She laughed, and to this day, she has that picture in her wedding album.

When Her marriage was falling apart, She was there. Together, both girls would drive around Colonial Heights, trying to find Her husband. Trying to fix something that was not fixable. She knew it, but She was still there. The Bond.

When The Accident happened, The Girls spoke every single day on the phone. Even if it was just “Are you okay?” “No, I am not.” “But you will be.” “Talk to you tomorrow.”

When He “came out”, both girls already knew…and often wondered how come no one else did. They prided themselves on how they observant they were.

When Her baby was born with a deformity, She was there. It did not even matter that She was clear across the country. East Coast/West Coast. It was the same as it had always been. Geography has nothing on The Girls….on The Bond.

When he decided to join the Navy, The Girls shed tears. Both privately and publicly. Both proud and scared.

The Girls, talk daily. Every single day, sometimes numerous times. Their husbands may think they are crazy, The Girls do not care. They have a Bond, something more than a Bond. They know when something is wrong with the other. They just know, “I need to call Her, something is not right.”

This is a Bond that can never be broken. Never. The Bond started back when He was laid in Her arms…..and the Bond continues some 32 years later.

No matter where Their paths may take Them in life….the one the thing that will never be broken, is Them. The Three of Them. Childhood memories, trials and tribulations of life……everything as a whole is what makes Them Them…The Bond.

Driving in the car…..Blue Oyster Cult…..The Girls would try their hardest to belt it out….and now……just give them a mic and they will karaoke for you.

Jury is still out on how good they sound.

 

 

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“You spoke a word and life began”

This is the Medical Alert bracelet Gracie picked out. Not my first choice, but I am learning this is not about me right now. Right?

On the back, it will have her name, my number, “No Allergies” “Epilepsy” and “Autism.”

I cannot believe how expensive these suckers are. It’s insane!

Gracie’s neurologist is located in the same hospital where she was born.

As Joe and I silently pulled up to the hospital, I looked up from our car. I was so tired. At this moment I wanted to be anywhere else but here.

There staring back at me was the all too familiar breeze-way of Mary Bridge Children’s Hospital. The windows to the NICU are on my left. I will never forget the layout.  Joe and I made this drive twice a day back in March of 2005. The NICU windows were always a welcoming sign. “You daughter is here, waiting for you.” And also a sign of sadness, and goodbyes. “Your daughter is here, waiting for you.”

These were the very same windows that I would look at while she was in the NICU. The same windows where I would look out into nothing and say a prayer to God that I would leave the hospital with a baby.

The same windows where once we had the official “Okay” to be discharged, I would look out in the early morning hours on the Tacoma streets and say a prayer for the babies who were left behind, and may not even make it home. It was in those moments I would thank God that my baby  was okay…and pray for the parents who would not be.

My heart is forever broken seeing them. I saw a baby go into cardio arrest, while Mom and Dad helplessly stood by.

They did not go home with their baby.

Gracie’s “neighbor” was a beautiful baby boy born at 28 weeks. I had the pleasure of seeing Mom and Dad daily. For a brief period, we went through the same milestones together……until we did not. They also left Mary Bridge without their baby.

My God, can you imagine?

Many memories from those windows in Mary Bridge.

Once Joe, Gracie and I left, I never thought I would see those windows again.

Yet, here we are. Twelve years later.

That same baby who was laying in the NICU fighting for her life, the same baby who was born with her intestines outside of her body…the same baby whose fate was up in the air….and now, twelve years later,the same baby who would has been diagnosed with autism……and now epilepsy. That same baby who is now a beautiful young lady is back again……as are my memories of the NICU windows at Mary Bridge.

This time around, I am a little bit stronger. I am ready to tackle epilepsy and tell it to go…well, you know.

I am ready to fight, to advocate, to be a voice……but more importantly, now, 12 years later, you have the voice of that baby who was on a ventilator. The same baby who had a collapsed lung, you now have her voice…the voice of a very feisty strong pre-teen..and you know what will happen…..she will look at you and say “Really, epilepsy, that’s all you got? I will do this.”

And…she will.

Thank you all for you never-ending support.

Thank you Ntombi for showing me the site for the ID bracelet.

Thank you Deb for the phone call. I need to hear your story….we will connect soon.

Thank you Barbra for your way too generous offer of offering to help pay for ID bracelet.

Thank you Stacey for your New York humor, and thinking of me at my worse.

Thank you family for your prayers.

Carolyn, please thank your community for thinking of Gracie, I am humbled.

Dad, thank you to reaching out to your friend, I have learned a lot and I am ready to go.

And most importantly, to anyone who is reading this……thank you, thank you for caring about not only my words, but my life.

~Jennifer

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Today was mostly a good day.

Gracie had a pretty good day today. This was the first day of her returning to school since her seizure. She was nervous. I mean think about it. She had a seizure in the middle of the foyer at school, fell down, and was then taken by ambulance. Who wouldn’t be nervous going back to school?

When the seizure happened, her backpack was left behind. Clearly. Gracie was so worried about getting her backpack back. For her birthday, Sofia picked out a beautiful butterfly key chain for Gracie. She loved it, and knew the perfect spot for it. On her backpack. When everything had settled down, the only thing Gracie really cared about was her backpack with the butterfly key chain.

We get to her school and  I explain to Gracie that I have to walk in with her so we can talk to the nurse about her medicine. Gracie and I  make the long walk from the parking lot to the front doors. There’s a lot of people around. Teachers and students. Usually Gracie will wait until the bell rings before she makes the walk. However, today was different, we had to be there early which meant dealing with the crowds of other students.

“I am so embarrassed Mom.”

My heart sunk. I figured she would worry about how people would look at her. Would they remember “She is the girl who had a seizure.” Middle school kids can be cruel.

“It’s okay Gracie, we can do this!”

I know, not much of a pep talk. My main goal was to get her inside the school with the least amount of anxiety possible.

“Mom, I am embarrassed because I am walking with my mother.”

Well, alrighty then!

As soon as we went into the office, the attendance secretary saw Gracie. She reached under her desk and handed Gracie her backpack, with the butterfly key chain still intact. Gracie was now happy, while I am still wondering why it is she embarrassed to walk with me?!?!

Gracie and I speak to the school nurse. The school has a plan in place if God forbid Gracie were to have a seizure in class. Please God, do not let this happen.

We leave the office and have to go back out into the common are, where all the students are waiting for the bell to ring. Hundreds of students. I asked Gracie if she wanted me to walk her to class.

“No, I am good.”

And I stood there. I watched her from a safe distance as she maneuvered her way through 6th, 7th and 8th grade students. I kept my eye on her, waiting to jump in incase she needed me. Incase some little punk would say something to her. I watched her. I watched her go through those double doors to her classroom, I watched her independence. I saw her taking on new terriority….and she did it. She did it.

Me…..not so much. Once I saw she was safely through those double doors on the way to her 6th grade classroom, it was now my tun to make way to the front doors. Make my way through 6th 7th and 8th graders.

It only took a second. As I was going through the double doors that led out into the parking lot, some girl, I would guess an 8th grader, runs into me. This was not an accident. She runs into me hard…..and I may have lost it.

I quickly turned around “Jesus Christ do you NOT see me here?!” The girl may have been taken back. We are standing there, face to face, for a good 8 seconds, looking at each other. Most likely thinking thoughts that we not dare to say. Because I am old enough to be her mother, I decided to be the bigger person and turn around and continue my walk to my car.

And then, just like back when I was in middle school, the talking started. I could hear it behind me. Her friends were now joining in.

“Bitch.”

“I do not know who she thinks she is”

“She is lucky we are not on the street.”

This would be the part where I pretty much lost it. I quickly turned around, took a step on my pedestal and just let it all out.

“Excuse me, is there a problem here? Is there something you want to say to my face, or should we go back in and have a conversation with the principal? I mean I just saw him, I know he is not that far off……and really, why are you going to talk about “seeing me on the street” I mean what does that even mean? Who do you think you are?! I am older and wiser and pretty much know you are trying to act all “street” to show off for your three follower of friends, who are looking at us right now. So here I am, street or not, what do you have to say to me other than an apology for running in to me.”

Silence.

“Yeah, so next time you want to show off for your friends, show off with kindness, be kind, be a nice person, because if you are going to come at me with anything other than that….well then I am bored, and have other things to do.”

Tomorrow, it may be I who is in the principal’s office.

I do not know who to be more afraid of….the principal or Gracie.

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Gracie is 12 years old.

Many of you know Gracie. You know her through my post, you know her because you are family, you know her because you have been her teacher on one way or the other, or you know her because she has made an impression on you.

Every year on her birthday, I reflect on what may not have been. If you had told me then what I know now, I would not have believed you. Just like most stories go, Gracie’s does not begin at her birth. It begins three months prior.

My pregnancy had been normal. The usual morning sickness, lack of energy, small weight gain. I was measuring as I should, all was well. It came time for the 20th week ultra-sound appointment. Joe and I were excited. Nervous, but excited. There was a time not too long ago when we went to another ultra sound appointment only to be told “I am sorry, there is no heartbeat.”

That was a time in our life that really messed us up. We were challenged in ways that we had never been challenged before. That day, the day before Gracie’s ultrasound, the day we were told “I am sorry, there is no heartbeat” was one I will never forget, although if I were to be honest, there are times when I want nothing more than to forget.

Before

For whatever reason, there was no heartbeat. The Doctor prescribe me some medication to allow me to induce on my own. Joe and I left the doctor’s office, devastated. We both blamed ourselves for something we could not control. We went to our local pharmacy so I could get the medication to help me induce, to rid my body of “the fetus.”

There was a long line. Joe and I are standing there at the end of the line. I am crying, Joe is being supportive, but nothing could help me. I was at the end of my road. Something just snapped in me. After standing in the same spot for 15 minutes I had enough. I gave Joe a silent look, as I made my way up to the counter, ignoring every other person in line.

“I am sorry Mam there is a line, you have to wait in line.”

Bullshit.

“I have a 20 week old dead baby in my stomach, I need this medication right here, on this paper, I need you to give it to me now, because if I have to continue to walk around with my baby, my dead baby inside me, then I wont make it. I am telling you I wont make it and I need help now.”

Immediately Joe was at my side, the line cleared, and a few of the shoppers muffled “I am good, take care of her.”

Twenty minutes late I had my medicine and all I could do was wait. Wait for nature to take its course. It sucked.

After

Fast forward to six months later when Joe and I were in the same ultra sound office waiting. Just waiting. My new pregnancy seemed to be normal, but time had told me one can never be sure.

The ultra-sound tech made her way in, put the wand on my expanding belly while we waited. We waited in silence. Joe and I both afraid to ask “Is everything okay?” “Do you know if it is a boy or a girl?”

None of that happened.

The ultra-sound tech immediately left.

Bitch.

Did she not know what we had previously been though?

About seven minutes later she decides to grace us with her presence. “I have your Doctor on the phone, he wants you to meet him at his office immediately.”

I hated this woman.

“Please, I just lost a baby six months ago, is there anything you can tell us? Please, I am begging you.”

Nothing. She would not tell us a thing.

Joe and I made the quick walk from the ultra-sound tech to my Doctors office. He was waiting for us. As soon as we walked in we were ushered back to a room.

“I am sorry, there is a problem, your baby has gastroschisis. Are you familiar with that?”

What the hell?

“It is a condition where the abdominal wall does not close and in the case of your baby, it means the intestines are floating outside.”

I clearly remember Joe and looking at each other. He grabbed my hand as my eyes filled up with tears. I looked at the doctor. My eyes told him more that the words I was able to get out. “Is the baby going to die?”

My doctor took a deep breath. He laid down his notes, took his glasses off and looked Joe and I directly in the eye. “I am going to do everything I can to make sure that does not happen.”

After that, everything was a blur.

“I will be your doctor but you will deliver at Children’s Hospital”

“You will have to be monitored weekly.”

“There are specialist, we are putting specialist on your case.”

“For this condition, you are in the perfect spot, we have the best doctors.”

“You will need a c-section.”

“Your baby will be in the NICU”

“It wont be an easy road”

Everything was coming at me, I had no time to process. My Doctor took out his paper and pen and scribbled out “GASTROSCHISIS” for Joe and I. We were then  handed phone numbers after phone number, instructed to go home and set up an appointment.

Joe and I left the office and went to the library. This was back before Facebook, back before MySpace, and honestly, the library was the only source of information that was at our finger tips.

We walk in, I grabbed my coat and wrapped it around my belly. I did not want anyone to see I was pregnant. Joe and I make our way to the “Information” desk. He gives the lady the paper with the word “Gastroschisis” written on it. “We need every book you have on this.”

There was no book. Not one single book in the Federal Way library. The very nice lady at the information desk looks at Joe, she looks at me. I am crying. She does a quick “Google” search and prints out the only information she can find on Gastroschisis. “I am sorry, I wish you luck.”

Joe and I came home. We took in the five pages of material that came from Google. He made calls to his family, I made calls to mine….and then….we waited.

The next three months were gut wrenching. Every single week I not only had to see my regular doctor, I had to see the specialist. I had to be monitored, I had to count the kick count of my baby. I felt like every little thing I would do, would cause harm to the baby.

I will never forget the first meeting of our specialist, the one who would be delivering the baby. He took Joe and I back into his office. Sitting across from us in his big fancy chair, glasses on, pen and paper in hand, the questions began. Looking directly at me he asked…

“Do you use drugs?”

“Do you consume alcohol?”

“Any history of STD’s?”

“Any domestic violence?”

“How many sexual partners have you had?”

This is when I pretty much lost it. I looked at Joe, Joe knew what was coming, and silently gave me the “okay” to let it out.

I repositioned myself in my chair, a nervous habit that has stayed with me over the years. I made eye contact with my new “specialist”, and with every bit of confidence I had, which was a lot, I said…

“Look, I do not know what you are getting at but I can tell you in about three seconds everything you need to know. I have never had an STD, I was a smoker, I was a drinker and I can count on one hand how many people I have slept with, can you do the same? Because right now, all I need to know, is my baby going to die and if not, what are you going to do to prevent that?”

The specialist looked me. He took his glasses off, he looked at Joe. “Well, she is a feisty one isn’t she.”

Joe laughed, as he put his head down “You have know idea.”

I was reborn that day. I saw the end of the road, I told it to “fuck off, I can do this” and I persisted.

The following three months were anything but easy. Every week there was some sort of appointment. Every single day I had to monitor kick counts. It was hard, and if I am to be honest, the two older boys suffered because of that.

At 30 weeks, we were looking good. Joe and I understood what was going to happen. As soon as I delivered our daughter, the one who we still had no name for, she would be taken to NICU (intensive care for newborns) I would be in recovery, Joe would be allowed to follow the baby.

The baby had quite of bit of intestines outside of her body. Nobody would know until birth just how much there would be. How long the “closure” surgery would take, but we had our plan in place. I was scheduled to deliver at Children’s Hospital in a little over a month……excpet, the baby had different plans.

It was a week night. Joe was cooking dinner for the boys. I was in my usual spot on the sofa, trying to count the kick count. There were none. No matter what I did, I could not get the baby to kick.

We knew, I had to go to the hospital. Christin graciously enough took my boys while Joe and I made the all to famaialr drive. I was hooked up to every machine you can imagine. There was nothing.

It was time for an emergency c-section. There was not enough time to transport me to the hospital that had the NICU, to the hospital where my specialist was. My OBGYN was literally on the phone with my specialist. My specialist was explaining to my OBGYN how to do a “Gastro Baby C-Section” this would be his first.

I was quickly introduced to the medics who would transport the baby to the NICU at Children’s Hospital. With tears in my eyes, I begged them “Please, just take care of my baby.”

One of the three medics, looked at me with tears in her own eyes. “We will protect her, we will watch over her, we will transport her. You do your part, we will do ours”

And just like that I was rolled of into surgery.

It took two doctors.

One to grab the baby from my belly,

the other to grab the intestines.

They cleaned her up, and handed her off to the transport team. Joe closely behind. I, well I passed out.

I would give my life to give this baby life.

When I came to, Joe was by my bed side. He handed me a poloroid picture. I did not know what I was I looking at. It was like a puzzle, which way does it go?

I asked him “What am I looking at?”

He patiently pointed out the intestines…..and….the baby. I had a baby girl.

By the Grace of God I had a baby girl.

That is when we agreed on the name. “Gracie.”

Twelve years later, one autism diagnosis, a few seizures here and there, we are still on the journey. Currently, there are some issues going on with Gracie that we are trying to figure out……however, just the other day in school, a teacher and Gracie were having somewhat of a “Gracie Conversation” the objective being…….How loud can you really burp? Yes, you read that correctly. The same baby who I had no idea if I would be bringing home or not, the same baby who could never calm down because of her rock hard tummy, the same baby who had always had delays and will continue to have delays, this baby has grown into a pretty bad ass young lady…..and is now asking me, “I need to learn to burp the loudest Mom!”

That my friends, is music to my ears……..years ago  when I told the road to fuck off……this is what I meant. This is what I had hoped for. By the GRACE of GOD I have GRACIE.

Gracie, walks to the beat of her own drum. She is my life. She is my good, she is my heart-break, she is lessons taught and lessons learned….she is my legacy, she is my accomplishment, she is my breath, she is my life……she is my story, she is her story.

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The Grey Area

Christin~ A conversation with a friend the other day got me thinking about a taboo subject. Is it ever okay to date a married person? Now, I know your first reaction is “Hell NO!” but as I probed the subject more deeply, there is no one answer for different scenarios. In the case of my friend “Jax”, he has been dating a married woman for about a year. She has told him repetitively that she will get a divorce when “her son graduates” or “when she gets all of her ducks in a row”. Needless to say, her son graduated almost a year ago and does anybody ever have all their ducks in a row? Unfortunately, he believed the lies she told and he is left heartbroken, while she goes home to her husband.

A similar situation transpired with another friend of mine. After reconnecting with an old friend, spark began to fly. The chemistry was real and promises were made. Unfortunately, “Frankie” was married, but in the middle of a divorce. So, he said. A year later, he was still in the middle of divorce, luckily “Carmen” was able to see the truth and end it. WHY DO PEOPLE SAY THEY ARE GETTING A DIVORCE, WHEN THEY ARE NOT? If you are planning on staying with your husband/wife, why waste someone else’s time. I don’t get it. If you are that unhappy in your marriage, it’s simple…JUST LEAVE!

Jennifer~ I also have a friend who has been struggling. Completely different end of the spectrum from Christin’s. My friend, “Gina” has been married to “Jack” for 13 years. Not always an easy road, but nothing good is. They have seen their ups and downs, and are still kicking strong. About a year ago there was a shift. Intimacy stopped. There has been no sex, no kissing, no hugging, no affection whats-so-ever. One would automatically assume one of the parties was having an affair. But, what if they weren’t? What if for no reason at all, all intimacy stopped? One of the parties has expressed their needs, and it has fallen on deaf ears. So what happens now. Do they continue on, pretending everything is okay? Does one party have “pity sex” just to keep the other one happy? Who wants to have pity sex? Would anyone in their right mind give them a “free pass” to stray in their marriage? Of course not, nor should they……however, what if, no one would get hurt? What if no one would find out? If a need is not being met in a marriage, and the need has been expressed, what then do you do? Do you call it quits even though every other aspect of the marriage is fine? No you don’t…..but what is the answer? Is it fare for the other party to continue going without their needs being met?

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Sofia and Vinnie

It seems that in all the commotion of Gracie, her seizure, her EEG, and her upcoming MRI, I have overlooked one very important aspect in all of this.

Sofia.

Two teachers approached me today at the school with concerns regarding Sofia. The first teacher just wanted to give me a “heads up” that today, in class, Sofia was on the verge of tears.

The second teacher, who Sofia has an exceptional bond with, explained to me that Sofia is feeling lost. She has a lot of questions about Gracie, yet does not know how to ask.

I did not see this coming, but I should have.

Sofia and I had a little chat tonight. Mother daughter. The first question Sofia asked, “Is Gracie going to die?”

It has been determined I pretty much suck at this parenting thing. How did I not see this coming? Sofia was the one who found Gracie. Sofia saw the seizure up close and personal. Sofia saw her dad and I try to wake Gracie, and Sofia saw her dad and I run out of the house with Gracie, giving Sofia the only explanation we could in the heat of the moment. “Aj Vinnie will be here, I will call and check in.”

So for the past few days, this little girl has been holding this in. Wondering if her sister was going to die, and felt too afraid to ask those tough questions. I have absolutely no idea on how to find that perfect balance, however it is more important now than ever that I do.

I told Sofia that Gracie will be just fine. I told Sofia if she has any questions, or does not understand anything, to ask questions! Whether it is her dad and I, or the teachers at the school. Just talk, get those questions answered.

For now, the only explanation I could tell Sofia was that Gracie will be going back to the Doctor in a few weeks for a special test where she gets to be asleep. I explained that she will be with us as we take Gracie to the Doctor and bring her home. I do not know what else I can do.

Then there is Vinnie.

Vinnie also had a breakdown today. I was outside on the phone and hear a loud noise. I come in to check on him (as he was the only one here) and find him laying on his bed. He has a bloody hand and punched a hole in the wall. It seems that Vinnie’s girlfriend has been cheating on him, and he found this out by way of text message. From the guy who is doing the cheating.

I have never seen Vinnie this way before. I am no doctor, but I would say he was having an anxiety attack. He was so distraught, he fell into the cat liter box, and just laid there. Crying, bleeding, and hurting.

Needless to say, I have no idea what I am doing….because if I do not keep myself busy, and productive, then I would be right there with him, laying in the cat liter.

Jennifer

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Vinnie and Sofia 2007

Gracie’s Journey

My eleven-year old daughter, Gracie, was born at 35 weeks.

Gracie was also born with Gastroschisis. A condition where her intestines were outside of her body.

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The day she was born. March 8, 2005 

It was not an easy birth, emergency c-section. There was a point when Joe and I did not even know if we would be coming home with her.

Gracie spent one month in the NICU. A very hard, trying time for us.

March 17th, 2005 Gracie had surgery to close the opening where her intestines protruded.

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March 17th 2005

In April of 2015 Gracie was diagnosed with autism. Another trying time for us. It’s not always easy to navigate the system, while learning your new normal.

Over the years, our biggest challenge has been the delays. Delays in learning. Delays in speech. Your typical milestones would take Gracie twice as long to meet. However, she was always healthy. Very rarely did she get sick. If she happened to have a cough or runny nose, she knocked it out in two days tops.

Then, when we least expected it, everything changed.

It was 2:30 am, Thursday morning. Just two nights ago. Our youngest daughter, Sofia, comes to wake Joe and I up. “There is an emergency, Gracie is throwing up.”

Joe and I are instantly up. We make our way to the girls’ bedroom to find Gracie sprawled on the bed. Her eyes are rolled back in her head, drool coming out of her mouth. We shook her, we turned her, we tried to sit her up, and nothing. Joe looks at me “Something is wrong, we have to take her in.”

I wake up my two older boys. One of them stays with Gracie while I quickly throw some clothes on. Sofia is crying. I am trying to tell her “everything will be okay” when the fact is I had no idea if everything would be okay.

Joe scooped Gracie up in his arms. Still no response from her. She was limp, just laying there. I ran down to the car, warmed it up, and did what I could to get the car as close to the front of our building as I could.

I am in the back seat with Gracie, “Gracie, please, please wake up, do something, wake up!”

Nothing.

“Drive faster. We may lose her, just go!”

I grabbed my phone. While trying to wake Gracie, I texted my oldest son. I needed him to find out the exact details from Sofia of what happened.

I also made a Facebook status.

“You guys something is very wrong with Gracie. Not responding not waking up. On way to hospital its like she has seizure. Please pray with everything you have”

Joe is driving like a mad man on the empty roads. Our hospital is only about an eight minute drive from our apartment. We were there in five.

We pull up in front of the emergency room, and I run inside like I have never ran before.

“You have to help, something is wrong with my daughter, she is eleven years old, with my husband in the car, she is non responsive, not waking up….she has autism and she was born with gastroschisis, and you have to do something now!”

Before I knew it, two doctors were out by the car. They had to wheel Gracie in. Still no response from her.

I threw my wallet at the “check in” desk and went back to where Gracie was getting her vitals.

And then, she was up. Something happened, and she was there. She was herself. She was looking at us all like how dare we disturb her. Typical Gracie.

Gracie had a seizure. Her first one, ever.

Because of her age, along with the autism, an EEG was ordered for Friday morning. Yesterday.

From the time we returned home, Gracie was fine. She did not understand what all the excitement was about. She was fine. The Doctors were not convinced, and still ordered the EEG.

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February 24th 2017 EEG

We had three hours in between the time of the EEG and when we were able to sit down with the Neurosurgeon and hear the results.

During that time we took the girls to lunch, spending some time at the waterfront. In my mind, and I did not communicate this to anyone else, but in my mind, I had no idea what news we would be hearing in the next few hours. I had no idea if our life was about to change. I wanted to capture a moment of innocence, a moment where the only concern my daughters had was who could throw the biggest rock the farthest.

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February 24th, Tacoma Waterfront.

It was then time to meet with the Neurosurgeon and hear the results of the EEG.

The results were abnormal.

There is a spot on the back of Gracie’s brain that the Neurosurgeon wants to further investigate.

What we are hoping for is a benign seizure.

The MRI is scheduled for March 17th, 2017

Twelve years to the day when she had her wound closure surgery.

Gracie is a feisty young lady who has her whole life ahead of her. She has so many friends and family who are rooting her on. Who support her, who love her.

There is not enough space here for me to list each and every person who holds a special place with Gracie and I.

We need her to be okay. She is a fighter, and has the strength of 200 men. But I do not want her to have to fight anymore. She has been through enough.

At the beginning of the year, Gracie, all by herself, made a list of goals for 2017.

  1. Talk more at school
  2. When someone is asking you a question, never say “I don’t know.”
  3. When someone is asking you a question, never blame them because they can’t hear you.

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Gracie’s Goals for 2017

I need her to reach these goals.

You need her to reach these goals. To know Gracie is to love her…..and to be afraid of her, because she is just that feisty, and if given the chance, has so much to teach us all.

Jennifer