And then there was one....Chelsea's beautiful life story.

http://alabamaslackermama.blogspot.com/2009/03/and-then-there-was-one.html 

For any of you that have been following me for a while, or for those of you who personally know me, you know that I have a 16 y.o. daughter, Chelsea. Chelsea is the sweetest, most loving child that a mother could ever ask for. We have been so blessed to have her in our lives. As I wrote in the comments section of

this post, I wanted to eventually share her story with all of you. I thought my 100th post would be just the time to do that.

I warn you, this is a very LONG story, much different than the fun and cheerful things that I normally post. So, if long and sad stories aren't your cup of tea, then come back tomorrow for my "normal" funniness! I have struggled with the decision of making this one long post, or breaking it up into several, smaller posts. But, there is just no way I could do Chelsea's story justice by breaking it into little pieces. I will also warn you that I've never been credited as being a great storyteller, so I hope that all of my random thoughts will make sense to you.

So if you are still here, go to the potty, get you a Coke Zero (or your beverage of choice), and settle in for the story.

The year was 1991, I was turning 22 years old, and had been married for 3 years (yes, I got married 5 days before I turned 19). Looking back, I was so young, so spoiled, so immature, and I'm sure several people that know me will agree with that. It was all about "Me! Me! Me!" I didn't love God like I should, either. Sure, I had been baptized, but it had been many years since I had lived my life as a Christian. The only time I graced the inside of the Church was for weddings and funerals. Marty wasn't even a Christian at the time.

Despite all of this, Marty and I had decided to start a family. We tried for several months, but nothing was happening. After a few tests by my OB/GYN (including a very "uncomfortable" ultrasound), and months of taking my temperature, it was finally determined that I wasn't ovulating. So, the doctor gave me some meds to help me ovulate.

This was 17 years ago; the Internet wasn't around. The doctor didn't really elaborate about what he was giving me other than "Here's something to help you ovulate". My father-in-law got a Physician's Desk Reference (PDR) for Christmas, so we decided to look it up:

Clomiphene: a fertility drug (trade name Clomid) that is used to stimulate ovulation and that has been associated with multiple births.

Multiple births, huh? Wouldn't that be funny? Yeah, REAL FUNNY!

Unfortunately for us, we didn't read that until I had already taken the meds for that month.

Sure enough, two weeks later....there was a BRIGHT BLUE POSITIVE on the pregnancy test. I guess I should have noticed that it turned a little too blue, a little too fast!

We were THRILLED! We were going to have a baby!

The next few months were fantastic! No morning sickness at all! Just big boobs and feeling great! The only odd thing was....I HAD to start wearing maternity pants around 11 weeks into the pregnancy. All my co-workers laughed at me, thinking I was wearing them just because I was so excited. WRONG! I HAD to wear them! I couldn't get into anything else!

My doctor never said anything was wrong, but decided to move-up my routine 20 week ultrasound to 17 weeks...."Just to see how big the baby was".

All the way to the ultrasound appointment, we joked "What if it's twins?"
Little did we know how right AND wrong we were!

As soon as the ultrasonographer put the probe on my belly, I saw TWO heads! I screamed "IT'S TWINS!!!" Then she said "Well, no there's THREE....TRIPLETS!" "Two Girls and a Boy!" Marty said "Oh SH**!" and I don't remember much after that! HaHa!

I cried all the way home from the ultrasound. NOT because I was worried about the health of my babies, or the possibility of loosing them, but because I didn't know how we were going to be able to afford to pay for daycare for three babies so I could continue working. See, "ME, ME, ME!" I wish I could go back and slap that person...really!

The next few weeks were really a blur. I had to leave my job, was put on bed rest, pelvic rest (which means....uhhh, no hanky panky), and was told that our goal was to make it to 34 weeks into the pregnancy. I was determined to make it 34 weeks or even longer!

At around 22 weeks, I started having some major complications. I was having contractions without feeling them, and I was dilating. I was hospitalized, put on Magnesium Sulfate, and then eventually started on a Brethine pump, that I would be able to use while at home. I was in the hospital for about a week, and during this time, I began to think very differently about this pregnancy. I started to realize that I could really loose these babies. I was sent home with a monitor for my contractions and a Brethine pump, and with strict orders to be on complete bed rest. I missed my baby shower, but I was determined to get every day I could for my babies!

At my next doctor's appointment, we were horrified to find out that I was dilated even more
<ALIGN="CENTER"(4 cm) and Baby A's bag was bulging. The doctor immediately called the ambulance and I was transported to St. Vincent's Hospital in Birmingham, which had a Level 3 nursery (NICU). We were told that the babies would probably be born that day. I was only 24 weeks pregnant.

If I delivered them, there was NO chance of survival.

Once I made it to the hospital, the team went into action. I was placed in trendelenburg position, where my head was tilted down and my feet were up in the air, and they restarted the Magnesium Sulfate at a very high dose. The "Mag" made me feel horrible, but I didn't care. I told them to do ANYTHING to save my babies! Thankfully, I didn't deliver that day....or the next.....or the next. The contractions had stopped, and my cervix even closed slightly.
We were thrilled! I just knew we were going to make it!!

After staying pregnant for 7 more days, the doctors were now hopeful that the babies would be viable if born, so they decided to give me Celestone injections to help their little lungs mature. I would be given two shots, 12 hours apart, every seven days until I delivered.

A few hours after my second dose of Celestone, I woke up with contractions....lots and lots of contractions. I immediately called my nurse, and told her that I thought something was wrong. My contraction monitor didn't show anything, but after readjusting my monitors, they realized I was contracting about every 3 minutes. They called my doctor, and once he came in and checked me, I was already dilated to 7cm (10cm is how far you dilate to deliver a full-term baby), and all three babies were very low in my pelvis. He immediately called for an emergency C-section.

I started FREAKING OUT! Marty wasn't there (he was working) and I was ONLY 25 weeks pregnant! WAAAAAY too early to be having these babies! The doctor wanted to immediately deliver the babies, but my sweet nurse (my favorite) convinced him to wait until Marty could get there. I remember her telling the doctor "He NEEDS to be here....he's been here for her every step of the way." He was about 1 1/2 hours away, but somehow made the drive in 45 minutes. Minutes after he walked in the door....I was in the O.R. starting my C-section. I also refused to be put to sleep for the delivery. I told the doctors that I had to either have an epidural, or they had to cut me without anesthesia. There was no way that I wanted to wake up and not know if my babies were dead or alive!

On June 18, 1992, at 12:51 pm, Lena "Courtney" Hill came into the world, screaming her itty-bitty head off, weighing 1 pound 6 ounces. At 12:53 p.m., Sara "Chelsea" Hill, quietly came into the world, weighing 1 pound 8 ounces. Then, at 12:53 and 25 seconds, Timothy "Bryant" Hill, came into the world weighing a "hefty" 1 pound 12 ounces. In that two minutes and 25 seconds, My life changed forever!

The rest of the day was a blur. But one thing I do remember, my OB/GYN came into my room and told my mother "Two of the babies have a shot, but the third one.....she doesn't have a chance at all." That baby was my little Chelsea.

From birth, Chelsea was the most critical. Her lungs were the most underdeveloped, and to add insult to injury, she developed a bleed in her brain. Nothing they were doing was helping her.
We were called to her bed to say our goodbyes.

We cried and prayed, prayed and cried. We stroked her little arms and legs, and told her how much we loved her. She was so beautiful, so tiny.....how could a baby this small live? This was the first really bad thing that had ever happened to me. I prayed like I've never prayed before. I prayed, not as a Christian, but as a selfish, desperate mother begging and bargaining for more time with her little girl.

The seconds turned to minutes, and the minutes turned into half-hours, and then hours. Our little girl survived the night! We still weren't given any hope for her survival, but she had lived far longer than everyone predicted!

Over the next few days, she slowly began to improve. Her brain bleed was still there, but had not gotten any larger, and her blood work slowly began to show some improvement. She was still on the highest vent setting and on 100% oxygen. We were still not given much hope, but she was still with us, and for that we were very thankful.

As Chelsea slowly began to improve, Courtney, our tiniest baby....who had been doing FANTASTIC, started having some issues with her stomach. She later had to be taken to surgery, where she was found to have Necrotizing Enterocolitis or (NEC), which meant that part of her intestines had died. The dead intestine was removed, and our little girl came back from the ER with a teeny-tiny colostomy. She weighed only 14 ounces at the time. After that surgery, Courtney did wonderful! She was a teeny-tiny little fireball that definitely lived up to her namesake! Her first name "Lena" was after my maternal grandmother, Lena "Mae", who was a stubborn, feisty, holds-nothing-back, wonderful lady, that lived to be in her 90's.

Bryant held his own during this time. He wasn't doing bad, but he wasn't doing good, either.
He was being the typical "Wimpy White Male". (You see, for some reason, in the preemie world, white boys do much worse than any other race or sex.) At least he was behaving while his sisters were acting up!



Slowly, the days turned into weeks, and the weeks turned into months. The NICU was a roller coaster ride of emotions. Highs when all the babies were doing well, and unbelievable lows when they were doing poor. We were pretty fortunate that usually only one baby would have a crisis at a time. Such considerate children they were!

In August, two months after they were born, I got to hold one of my babies for the very first time....BRYANT! He was still acting like a WWM, and refused to get off his ventilator, so the nurses thought a little mommy-son time was the ticket. (This was in the days before "Kangaroo Care" became the "norm" for NICU babies.) Things went great until the NICU MD came in and saw me holding him. He immediately made me put Bryant back into his bed, and "banned" any babies being held while they were still on the vent. What an improvement today's NICU policies are! SO, I wasn't allowed to hold any more of my babies for few more weeks.

Slowly, they began to improve. There were all of the typical preemie baby hurdles to overcome. Breathing problems, eye problems, hearing problems, feeding problems, weight gain, apenic episodes....you name it, they had it. But my babies were still alive and doing fairly well! Courtney was off any form of oxygen, had her colostomy reversed, and was eating like a champ! Chelsea slowly weaned off the vent, went to C-pap, and then to oxygen per nasal cannula. The bleed in her brain started to resolve, too. Then there was Bryant, poor little Bryant. In typical "WWM" pattern, he would get off the vent, then back on the vent...off, on, back and forth. We never knew what we would find when we got to the NICU in the morning. Eventually, he was able to get off the vent and stay off, but required a good bit of oxygen through his nasal cannula.

September 26th, 1992 came and went.....my original due date....and all my babies were still in the NICU. Marty and I went to an Alabama football game! It was the first time since May that I had been away from the hospital in the middle of the day.

In October, they started talking about going home. HOME? We were actually going to get to go home? Our little Courtney, who still barely weighed 4 pounds, was the first to come home. She was on no oxygen and on no medications! The only thing she had was a heart monitor to watch for any apenic episodes.

One down, two to go!

A month later, Bryant was the next to come home. He was still having a very difficult time with his lungs, but the doctor's felt it was safe to take him home. He was on oxygen, a O2 saturation monitor, a heart monitor, and a counter full of meds....but he was home!

Two down, one to go!

Then two weeks later, our little Chelsea came home. Yes, our little Chelsea, the baby who wasn't supposed to make it through the night. Like Bryant, Chelsea came home on oxygen, an O2 sat monitor, a heart monitor and a counter full of meds. But now, ALL my babies were home!!!

WE MADE IT!!!

We had so much to be thankful for that Thanksgiving!!

Things were very stressful for us once we all got home. Courtney did well, and acted and ate just like a "normal" full-term child. But Bryant and Chelsea required constant attention. It would take 2 1/2 hours out of a each three hour feeding schedule to feed Bryant and Chelsea...EACH. We also had a very difficult time getting all of their multiple meds in them. We did have nursing care, and my parents, and were very thankful for that help. There were multiple doctor's appointments every week. We were constantly busy...but we were happy because all of our babies were home!

Since Christmas was right around the corner....we had to get our cards done! So, we took our Christmas pictures.

A few days later, right after I mailed our first "family" Christmas cards....
The worst thing imaginable happened.

Bryant died.

He had been sick with a cold. His pediatrician wasn't too concerned, and thought he could be handled at home. He had been very fretful, and was requiring more oxygen than normal, but we were finally able to get him to sleep. As he slept, his O2 saturation rate slowly began to drop lower, and lower. Then suddenly, it plummeted to almost nothing. CPR was immediately begun, and his heart and breathing resumed. Once the paramedics got there, they took him to our local hospital. He coded several more times on the way to the hospital, and once he was there, we were told there was nothing they could do. Our sweet little boy was gone.

How could that be? GONE? No, no, no, no, no.....we had made it HOME!

We were supposed to be SAFE!

The next days were a blur. We wanted an autopsy....we had to know WHY this had happened. We had the typical funeral home visitation, graveside services, entertaining people in our home. Hugging, hugging, hugging, forcing smiles, small talk with hundreds of people that somehow knew us. Whether it be directly or indirectly. "I used to work with your aunt's husband" or something like that. Listening to people tell me "It is for the best", "Well, at least you have two other babies", "It was God's will", "He's better off", "Things could be worse". Yeah, every one of those phrases uttered at some point or another, multiple times.

 

 

 

-------------------------------------------------------------------------------------------------

OK, let me sidetrack just a minute here. I want to bring this to the attention of every person that may possibly come in contact with any other person who has lost a loved one:

DO NOT SAY ANY OF THE ABOVE THINGS TO A PERSON WHO IS GREIVING!!!

EVER!

I know that you THINK you are helping....but you are not! I know that you feel that you must say something. So, here is some things that you CAN say:

I am so sorry.

I will be here for you.

I love you.

Yes, I know it is very simple, but it works, it's sincere, and it's very much appreciated.

OK, rant finished and back to the story. Thank you for listening.

-----------------------------------------------------------------------------------------------

While still at the cemetery, we got a phone call from the nurse who was watching Chelsea and Courtney, telling us that Chelsea was "acting just like Bryant did". We raced home, packed her up and took her to the hospital. Chelsea did have a little cold, but was doing OK.
She was sent home after a couple of days.

During this time, my parents became very close with Courtney. She was just like a "normal" newborn....just itty-bitty (about 4 1/2 pounds). She had everyone wrapped around her teeny-tiny finger. My dad, who was a very stoic, quiet, gruff man, would just melt whenever Courtney was around.

I don't know what we would have done without my parents!



Chelsea had a small surgery to repair a hernia, but was back home in time for Christmas. At that time, our doctors let us know that Bryant's autoposy results came back without any conclusive reason for his death. We were just told "You know those preemies, their electrolytes can get just the least bit out of whack and they die." Humph, that's not what we wanted to hear.

Fortunately, the girls were able to have a good Christmas.



During this time, I had convinced myself that Bryant's death was "for the best" (you know, since everyone had been telling me that), and I tried to go on with my day-to-day life. I never allowed myself to grieve properly. I didn't have time. Things were still very stressful at home with two tiny little newborns around. Especially with Chelsea. We still had feeding problems and problems getting and keeping her meds in her. It was still taking about 1 1/2 hours of every 3 hour feeding schedule to get everything in her.

We hoped for a much better year.

We didn’t get our wish.

On January 2nd, we were in the process of trying to get Chelsea to eat and take her meds. Suddenly, she started choking and turning blue. This had happened before on many occasions, but she always was able to pull through it on her own.

This time was different.

She turned from blue to gray and became limp. She wasn’t breathing…at all.

I immediately began CPR, but I couldn’t get any air into her lungs. The trauma of the aspiration had caused a spasm in her windpipe, slamming it closed…TIGHT! No matter how I repositioned her, I couldn’t get any air to go in. 911 was called.

After what seemed like an eternity, we heard a “GASP”, and Chelsea started to breath again. She was blue, she was wheezing, but she was breathing.

She was transported to our local hospital, and then transferred to Children’s Hospital in Birmingham. She was doing OK, but they wanted to watch her for a few days to make sure there wasn’t more significant damage to her lungs.

Courtney was still doing great. Charming all of her in-home nurses and my family...especially my dad!

For the next couple of days, we commuted back and forth from home to Birmingham, trying to spend as much time with Chelsea and Courtney as we could. Mid days were Chelsea’s time and mornings and night times were Courtney’s. We couldn’t wait for both our girls to be at home, together again.

We didn’t realize that would never happen.

We had been with Chelsea during the day, and had come home and spent the evening enjoying our little Courtney. She had been to the pediatrician the day before and had been declared a “well baby”. She was starting to eat baby food, after all, she was 6 months old now. We still had a nurse with us (because of Bryant’s death and Chelsea’s episode, our insurance company allowed 24 hour care), so we went to bed.

Sometime in the night, we woke up to the sound of Courtney crying. Not just crying... screaming. We jumped out of bed, and ran into where she was. The nurse was trying to console her, but couldn’t. She said “I just don’t know what’s wrong with her, she was asleep, and woke up crying like this.” Between the cries, she sounded like she was trying to strain...maybe she was constipated? We immediately called our pediatrician, he listened to her over the phone, and came to the same conclusion we did...she sounded like she was straining. He told us what to do, so I immediately left to find a store that was open for 24 hours. This was the times before Wal-Mart was open for 24 hours. I drove to a nearby town, found an open grocery store, loaded my cart with prunes, prune juice and glycerin suppositories, and quickly drove back home. Something kept telling me I needed to hurry.

When I walked in the front door, our nurse was doing CPR on my little Courtney. Marty was on the phone with 911, arguing with them. They were telling him that THEIR unit wasn’t in our district, and we needed to call the unit in an adjacent town. ( Yeah, that really happened….we have the 911 message on an old answering machine. You know, when you call 911, you just expect that who they connect you with will be the right place. You shouldn’t have to look up another phone number to call for help.) The nurse was hyterical. She was trying to do CPR on my baby while holding her...incorrectly. I grabbed her from the nurse, and started performing CPR myself. It wasn't working. She wasn't breathing and her heart wasn't beating. Marty hung up on 911 and yelled "GET IN THE CAR!"

We ran to the car, with our dying baby and took off towards the hospital. We literally drove 125 mph trying to get our baby to the hospital. I know we shouldn't have done that, but if you can't depend on 911 to help you, what are you supposed to do? Our nurse was screaming and yelling because we were going so fast (she literaly peed on herself, too). I was oblivious. I was still trying to save my little girl. We ended up meeting an ambulance (after my husband hung up on the operator, they dispatched the correct service), so they quickly got her and drove her the rest of the way to the hospital.

She was already gone when we got there. Really, she was gone before I had ever made it back home. The nurse and Marty said "It was like someone flipped a switch, and she was gone."

I remember sitting in that ER with my mom and dad, (I don't even know how they knew....did I call them? Did Marty? I don't remember.) and that doctor coming in that room telling me that my baby was dead. I screamed, I yelled, I sobbed. I wanted to be DEAD! I blamed God. He was punishing me for my past sins. Then, I saw something that I had never seen before.

My dad started crying.

That one moment changed my life and my family’s life FOREVER. (But that, my friends, is another LONG story. Let me just say that he became the spiritual backbone of our family!)

I have no idea what time it was, if it was still night or if it was morning...I had no concept of time. All I knew was that I COULD NOT go through the whole "funeral thing" like I had gone through LESS than one month before. There was no way I could see all those people, smile, be polite, listen to all of the "It could be worses". They asked if we wanted an autopsy. I yelled "NO!" Why do that to my baby when it wouldn't tell us anything, anyway? I then told my family "I want this over with TODAY!"

Somehow, we managed to put together a graveside service that day for my perfect little angel.

I remember giving strict orders "I don't want to see or talk to ANYONE except for my husband or my mother!" I went to my bedroom, I closed the door, and just layed there in the dark and cried....for hours and hours and hours. I remember someone coming in the room, thinking it was Marty, and it ended up being another family member. I remember being SO MAD that he came in there. I did NOT want to see anyone! I also remember the "so-called friend" who pushed her way through the small crowd at the graveside saying "I know she will want to see ME!"

Isn't it dumb that I remember those insignificant details?

I couldn't tell you who was there, other than those two people.

I couldn't wallow in my grief, however, I still had another daughter to tend to. Right after the funeral, we made the long drive to the hospital to be with Chelsea. I remember holding her and just crying. I remember the looks that her nurses gave us as they passed in and out. We spent as much time as we could with her....because we didn't have anything to go home to anymore.

Chelsea improved and after a couple of weeks, she was well enough to come home. The doctor came in and told us "I don't have to tell you that it doesn't look good for Chelsea, considering the history of the other two babies." NOT what we wanted to hear!

We took her home, and tried to begin our lives as a family of three, instead of five. My days were filled with trying to feed and medicate Chelsea, doctor's appointments, clinic appointments, and therapy appointments. Marty went back to work, and all the calls and visits stopped. It was just me and Chelsea, my parents, and a friend/babysitter/helper Teri. I wasn't allowed time to grieve for my babies.

A week later, Chelsea got sick. Really, really sick. She ended up back in the hospital, on a ventilator. She tested positive for RSV. A potential deadly respiratory virus for micro preemies, like Chelsea. Ironically, she contracted it at her pediatrician's office.

One day while walking into the PICU to see Chelsea, she had some sort of "spell", and the team of doctors, nurses, and respiratory therapists were "working" on her. I FREAKED OUT! I turned around, walked out of the PICU, and sat down in the waiting room. For months, that's where I stayed. I could not go back into the PICU unless someone called or went into the unit, checked on her, and come back and told me she was still alive and doing OK. I would then walk into the unit, kiss Chelsea, tell her how much I loved her, and then go back and wait in the waiting room.

I could not go see my own baby.

I knew that since my "sick" baby had died (Bryant) and then my "well" baby had died (Courtney), it was only a matter of time before Chelsea died too. I could not bring myself to become even more attached to this little angel, because she soon would be leaving me too! I would have moments of abnormal elation, and then periods of scary depression. I was quickly headed down a road that nobody wants to be.

I thought that God was not in my life. He had abandoned me. He didn't love me any more. I just wanted to "go away and never come back". It was at this time that Marty stepped in. He got me to the doctor, and I got treatment in the form of a prescription and a few therapy sessions. Over the next few weeks, I started to feel a little better.

The best therapy was Chelsea.....she started to get better!

We had a very long hospital stay, but by late Spring, she was finally back home with us. She was in and out of the hospital every few weeks, but her problems were minimal compared to what she had endured in the past. I started to believe that she may actually make it.

Chelsea had her first birthday. She only weighed 8 pounds, and wore a size double-zero shoe. We all made it through the first year, but with scars so deep, nothing could ever begin to fill them.

As fall approached, Chelsea's pulmonary doctor told us to be prepared to spend the winter in the hospital, just as we had done the year before. He said that her lungs had not matured enough and there was just no way she could make it though the winter without incident.

I was determined to prove him WRONG!

When the first wave of cool air came through, I decided that we would not leave the house, except for doctor's appointments. No visitors (other than extrememly close family members), no shopping trips, NOTHING. I would leave once every couple of weeks to buy groceries, but that was it.

I gained 100 pounds that winter (literally), but CHELSEA STAYED WELL AND STAYED HOME!!

It was worth every pound!

That summer, we caved in to the doctor's wishes and had a feeding tube placed. That was the best decision we've ever made. Not only could we get her meds into her quickly, we could get the food in her too! She rapidly began to improve. From then on, she only had one minor hospitalization.

***KNOCKING ON WOOD***

By now, Chelsea weighed 18 pounds, and wore a size 0 shoe.

Chelsea continued to be on oxygen, was primarily fed through her feeding tube, and slept with an apnea monitor, just in case her nasal canula became dislodged during the night. She didn't talk or make sounds, and she didn't crawl or walk. She started therapy through the United Cerebral Palsy and continued to improve.

Since she couldn't talk, she had speech therapy every week and was taught simple sign language so she could communicate with us. It was so sweet to see her sign "Mama", "Daddy", "Apple", "Cup", "More". She had me wrapped around that little finger!

We also worked on getting Chelsea to eat. Since she had been on ventilators so much during her first year, she had a real aversion to swallowing things. She loved her pacifier, but hated baby food. It was a real struggle to keep anything down. At least we had the feeding tube. There were two things that she would eat.....Sweet potato baby food, and my mom's peanut butter pie. She ate so many sweet potatoes, we were afraid she would be permanently orange!

And in case we didn't have enough stress in our lives, I decided to go back to college to become a nurse. What was I thinking?

The next few years were great. Chelsea was growing and getting cuter every day! She had a head-full of blonde curls. WHERE DID SHE GET THAT? She continued with therapy, and even finally started saying a few simple words. Her very first word was "Baaaaaa Nanananana" or "banana" to all of you reading this...lol! Not "Mama", not "Daddy", not No"....but "banana".

Only my child......

She still wasn't crawling or walking, but she could "scoot" with the best of them. We had oxygen tubing stretched all over that house so she could get around. We learned to travel very well with that oxygen tank. It became second nature to us. Chelsea loved to get out of the house and charm every person she met. She was still teeny-tiny, but she had a HUGE heart.

She now weighs 23 pounds and wears a size 2 shoe.

I was blessed to have a fantastic friend/sitter/helper, Teri, that loved my little girl just as much as I did. She started helping us right before Bryant died. She kept her while I went to school. I was also very fortunate to have my parent's help. It was tough, but I did it. By the time I graduated, Chelsea was 5 years old and doing great. She had been "hospital free" for three years! She was off oxygen, but still had her feeding tube, but we rarely had to use it.

She was our JOY!

Within the next year, Chelsea was WALKING! She was finally becoming a "normal" little girl!

Then she started to school. We held her back a year, hoping to give her an advantage. But after the first week, we knew that something wasn't right. After about day 3, the class was going off and leaving her. She spent the next few weeks coloring while the other kids learned their ABC's. We had a meeting with the school, and testing was done. The tests confirmed what I didn't want to admit. Chelsea was no longer considered "developmentally delayed"...

Chelsea was considered "mentally retarded."

UGH, I HATE that word! It has such a negative connotation.

The difference between "developmentally delayed" (DD) and "mentally retarded" (MR) is you can "catch up" if you are DD, not so if you are MR. This meant that my little girl was never going to be "normal". This had come as such a shock to me. I had ALWAYS believed that my baby would eventually catch up with her friends. Sure, it would take some time, but she would do it. That diagnosis was almost like a death to me. It was the death of my "perfect" child.

So, then began our life raising a child with PERMANT mental disabilities.
We had made it through all the physical stuff....now came the hard part!


Chelsea was put into Special Education classes where she began to THRIVE! She was finally getting the education she needed and deserved! We were thrilled! Then something terrible happened.....the "No child left behind" act was passed. Now I know that I will probably be slammed by some for saying that, but in Chelsea's case, this was a HORRIBLE set back for her. We were back to her sitting in the back of the class coloring. We called a meeting, and had her put back into her Special Ed classes.

The next couple of years were great! Chelsea was doing well and learning so much....then, 4th grade came along, and they decided to try "mainstreaming" again. It didn't help matters that she was put with the loudest, most obnoxious teacher available. Chelsea came home in tears every single day. We never knew what her homework was supposed to be because Chelsea wouldn't be able to remember to tell us. The "aide" she was supposed to have, had been pulled to teach in another classroom. We sent note after note to school, with no results. So, we called another meeting. We demanded she be put back into her Special Ed classroom....FOR GOOD!

The next few years were the best yet! Chelsea had the most wonderful teacher, Mrs. Richey. Mrs. Richey had many years experience with Special Education children. She was able to do what no other teacher could do.....

She taught Chelsea how to read!

We were thrilled!! We never thought our little girl would learn how to read! Not only could she read, she could write all her letters, too! She started writing little notes to us. It was so sweet! In those few years she had Mrs. Richey, Chelsea blossomed!

Also, during this time....Chelsea was "gifted" with something that would change her quiet, calm, peaceful life FOREVER...


A BABY BROTHER.

Then the inevitable happened.....Middle School. Chelsea was going to have to leave her dear Mrs. Richey. It was at this point that we werethisclose to attempting to home school her. We never worried when Chelsea was at the Elementary School. Everybody there loved her and watched out for her. As long as she was under their watchful and loving eyes, we knew she was safe. The Middle School was a whole 'nother ballgame. Sure, we knew many of the teachers there, but would they watch our little girl like she NEEDED to be watched?

We called another meeting.

It is here that I would like to thank a very special teacher for being our advocate. For her sake, I will not say her name, because she could get in trouble (if she is still even teaching), but she knows who she is. She helped us understand exactly what Chelsea's rights were, and what we could demand ask for. We walked into that meeting armed with our information, and we got exactly what we wished for, much to the school's dismay. Chelsea would remain in a self-contained, Special Ed classroom, with the individualized instruction that she needed. She would also be taught "life skills" that she could take with her. Today, she is still working under this system. Since we asked for this, a few other children have asked for this, too. Sure, on paper, the "No child left behind" act looks good, but it doesn't work for all children.

This year, Chelsea entered "High School". Fortunately, it's in the same building as the Middle School, so she still has the same classroom, same teachers, same classmates.

Chelsea has never been happier!

Sure, we have the "normal" teenager problems. Boys, Boys, and did I say Boys?
Thankfully, all of the boys she is "in love with" are on television or movies.
As long as it stays that way....we are good!

Chelsea has changed our lives in ways that we never thought possible. She is just the most happy, sweet, loving, kind, tender-hearted child that has ever walked the face of this Earth. WHY did I waste tears over her diagnosis? There is absolutely NO WAY I would EVER, EVER, EVER want her to be any other way! If she was society's version of "normal", she wouldn't be who she is today.....and that would be such a LOSS for all who know her! Especially me.

Chelsea made me grow up....quickly.

I look back to the person I was those 17 years ago, and I don't even recognize her.
I was this selfish, spoiled, stuck-up child, who was used to getting everything she wanted.
Instead of giving me what I wanted, God gave me what I NEEDED!

I am so thankful and blessed that God allowed me to be Chelsea's mother.
I am so thankful that he was saw something inside of me that I had no clue was there.

Because of my babies, my dad rededicated his life to Christ and became the epitome of a Christian...Never once wavering from the path once he made his decision (which was the day that Courtney died). My mother immediately followed his lead. Several years later, I too followed, and rededicated my life to Christ. Two years later, Marty dedicated his life to Christ.

That's a lot of Christian soldiers coming from some mighty small babies!

It scares me to think about where I would be now without her.

Would I be in the Church? Probably not.

Would I still be married? Probably not.

Would I be thankful for every little accomplishment my kids do? Probably not.

Would I be a nurse? Definitely not.

Would I get to Heaven to see my two babies again? Definitely not!

Would I be 100 pounds thinner? Well, the verdict is still out on that...lol!

Now, are you all still with me? I warned you it was a long story!

I hope that my story will bring a little insight into my life. It has been EXTREMEMLY difficult for me to write all of this. But if Chelsea's story can help just ONE person, it has been worth it!!

Comments

In order to comment on BlogHer.com, you'll need to be logged in. You'll be given the option to log in or create an account when you publish your comment. If you do not log in or create an account, your comment will not be displayed.