My next topic will be about how I have changed and grown the past 5 1/2 years! I will talk about the good, bad, and everything in between. My focus for the summer break will be to reflect on how I got to where I am and what I need to do to continue on the path God is leading me.
So it’s been a while since I have posted my thoughts on here. After Paige passed away I found myself wondering what the difference between joy and happiness was. If they are not the same thing then why are they used interchangeably? I knew I felt a great sadness from her death, but did I lose my joy?
So I made it a personal mission to understand the difference between joy and happiness. Naturally, I asked a few Pastors that I knew and they all said the same thing -Joy comes from the lord. Ok….. I get that….but what is joy exactly? How is it different than happiness? Of course, the response I got was- happiness is a feeling. This never satisfied me. This response was never good enough for me.
I hit so many dead ends with this topic that I kinda stopped wondering and moved forward. Then just recently it finally hit me… I finally understood the difference (it only took me 5 years). Yes, joy comes from the Lord! Because it is something that is deeply rooted inside you. I know you are thinking… isn’t that what your Pastor told you? Well, yes technically it is. But this is what none of the Pastors told me.
The beauty in the mist of a disaster….because there is always beauty.
The unseen light in the pitch black valley….because there is always light.
The peace surrounded by chaos…..because only God provides true peace.
Constant… joy is constant
Moments of laughter…..those amazing belly laughs
Periods of time…… those amazing things in life that recharge our soul
Intermittent….. happiness is intermittent
So yes joy is from the Lord. Joy is something that is so rooted deep inside you that it’s hard to dig it out. Happiness is the things of this world that fulfill us. I’m not sure why it took me so long to see this. Perhaps it was part of the healing process. I’ve finally realized that, indeed, I’ve always had joy.
I recently realized that something is missing. I was asked what gives me joy… and I honestly could not answer. Does that mean I don’t have joy? Or does that mean I am not happy? What exactly is the difference? Well over the next eight weeks I am going to explore the difference between them and document my experience. I can’t wait to see what God has in store for me and I hope I am able to inspire others in the process.
So the first year of Paige’s life was probably the best year of my life. I say this because it forced me to start to become what God wanted me be. It was the year I became assertive and even aggressive if I needed to be. I learned that saying no and creating boundaries was actually a good thing. I always wanted to save the world and did so much for so many people. I don’t regret doing anything for anyone, but I allowed people to walk on me and I didn’t realize it. I learned to stand up and fight and not to back down. This child only had me to fight for her. She depended on me to make sure that she had everything she needed and deserved.
A good example would be the Endocrinologist. I had asked that the Endocrinologist come and check Paige’s hormone levels before she was discharged from the NICU. I was told that they came and did blood work and so I will get the results. Well because that was on the bottom of the list of things to do I never looked into it. I would ask every few months at All Children’s outpatient and would never get a straight answer. I mean the child was1 2lbs at 1 years old. One day I decided I wasn’t going to leave until I got an answer as to what the test results were. Well there were never any tests run before she was discharged. What? So I set up an appointment to run tests and right before she turned 1 I found out that she did not produce growth hormone or the hormone via the Thyroid. Little did I know that while she was getting her blood drawn for blood work Paige was sick.
I was excited that I was planning her first birthday party! I never had a baby shower and really was looking forward to a “normal baby moment”. Well Paige was anything but normal, LOL! At this moment Paige wasn’t pooping or keeping her food down. Every time she would eat it would just come right back up. Sharon (the nurse) thought it was a bowel obstruction in her stomach. So I called her GI to make an appointment ASAP.
Upon finishing the GI tells me that I need to admit Paige to the hospital and that he will do a call ahead so they can start preparing her a spot. When he walked out of the room to get things started I just cried. I remember thinking that Paige’s party was the next day and her leg amputation surgery at Shriner’s was a few days away on Monday. I couldn’t for the first time keep my composure, I couldn’t keep my tired mind at rest. My sister and Sharon were there in the room with me and they didn’t know how to even comfort me. I mean I never allowed my vulnerability to wide open before. Selfishly I sat there thinking why couldn’t I have my “normal” day? Why couldn’t I just experience the same things that most parents were able to take for granted? The answer is because I was able to experience something so much better. I was able to experience the love that you only feel or understand from a special needs child. It is something so deep and so humbling and I would never want anything less.
Paige went to the hospital and to everyone’s surprise she had pneumonia. Wow! Here I am just thankful that this was caught in time. My sister took Paige’s home health nurse back home and here I was in the hospital with Paige by myself. I never left the room unless I needed to get out for a few min to walk around or go get something to eat. The next day my sister and some close friends came to the hospital with a surprise 1st birthday party for Paige. There was a cake and everything. It was one of those moments that you forget where you are and what you are facing. You embrace those moments and they become etched so deeply in your heart. I was just grateful I was able to celebrate a milestone. She turned 1 that was amazing all on its own.
A few months later Paige finally had her legs amputated and started her growth hormone (GH) shots. I remember crying the first time I had to give Paige her GH I couldn’t stab her….everyday! The needle was on of those insulin needles.. So yes it was small. I had to mix the GH and make sure that it all went well because there was not extra. Next thing you know Paige was 18 months and she was finally rolling around, and getting her teeth in. I never thought that I would be so ecstatic over these “normal” things.
Right before Paige turned 2 she got ear tubes (finally) and all of a sudden she started crawling, responding to noise, and was developing a fast rate. The Dr.’s were amazed at all the things she started to do. From ages 2-3 Paige had the time of her life.. She went everywhere! She did what toddlers do. We even took summer vacations in NC. I refused to her be limited and was determined to educate on acceptance. There were many times that kids would treat her like a circus freak and I cried. But this was our life and we would have to learn how to cope with not so ideal situations.
When Paige turned 3 she started Equine Therapy. I had never seen Paige light up with so much excitement. I loved it! This was the year that Paige also got her walker! She was able to walk without anyone helping her. She was walking with support, but the walker made her so happy. She didn’t have the concept of walking etiquette lol… She would walk right in front of you or into you. The thing is that she understood everything you would tell her so she was starting to become quite the walker. She even started to stop when cars were coming in our apartment parking lot. This year Paige also became vocal. She didn’t have speech as we would understand.. but she knew the words she wanted to say she just couldn’t express them. We also went to Camp No Limits this year!! This is a camp for kids with limb differences. And for the first time I could see that Paige noticed that there were others with missing legs… and maybe she felt like everyone else for that weekend.
This year Paige also went through her first craniofacial surgery. The thing is this time I handed her over and never got her back. I had handed her over to the Dr.’s so many times that I didn’t even think twice about it. This time I thought about it a million times…. as they wheeled her away to the OR I cried for the first time. I didn’t even cry when she had her legs amputated. You think of all the things that could go wrong. I was always afraid of brain damage. I may have looked tough on the outside, but the inside I was a wreck… I tried for almost 4 years not to worry about what could go wrong during her surgeries. God has this under control so why should I worry?
Then there was that moment when I am in the waiting room with my dad and sister and the fear that you had is coming true. There is not anything you could do about it. Its unraveling right before your eyes and all of a sudden the outcome is based solely on the choices you make. No pressure, right?
The Dr comes in and says that your daughter was in cardiac arrest for 40 minute’s… What? I all of a sudden felt like I was in a dream… this is NOT happening….God please save her…please…..
She was bleeding non-stop for about 7 hours. Her blood in her body was replaced twice via transfusion. I had to make the choice to have an angiogram performed. An angiogram is when the Dr puts a die in the blood stream to see where the blood is coming out of then they stop the bleeding. I agreed because it was a 100% chance she would die if I didn’t. It also was not a guarantee that she would survive even if they could stop the bleeding. Well they were able to stop the bleeding, but the damage was already done.
The next day she went into neurosurgery and because her brain was swelling they removed her skull. I knew then she wasn’t coming back, and if she did the brain damage would be horrific. So I prayed this:
God if you will not fully restore her please take her. It would not be fair for her to struggle even more for the rest of her life. But I am asking please restore her because I am not ready for you to take her.
About 5 days later I took her off life support and held her for the last time.
I will leave you with this as this is a lot of info to read. I will continue the story…I will tell you how it affected me and how I felt towards God.
And yes Paige was the best thing that happened to me and I had to do it all over again I would. Not to change the result but to hold my baby one last time.
So here I am a new mom and this is what I was handed. A child without a diagnosis and without life expectancy past 10 days. I was faced with all of these decisions to make with little time to think about it. When I was 7 months pregnant I was told I was going to have a stillborn and I almost started planning Paige’s funeral. I decided to wait until she was born before I went ahead with planning such a sad event. And now she is here… what do I do? Well, I decided to continue to wait.
The Monday after Paige was born finally came. I am still processing everything and very naive as to how to handle a HUGE medical team I just became apart of. I didn’t know what to ask or do. What I was actually allowed to demand. Yes you can demand things from your medical staff. Of course they don’t advertise this! So here I was signing papers to have more tests done. An MRI or CT scan or both ( I can’t remember). I remember insisting that I could walk and didn’t need a wheelchair. Remember I had a C-section a few days prior…. I actually needed a blood transfusion (after I was back in my hospital room) because they said I lost too much blood, but I refused one and wanted to wait until I absolutely needed one( I never got one) . But after walking all over the hospital and talking with all of the Dr.’s I felt sick and I ended up using a wheel chair and couldn’t stop thinking about how I was leaving my baby at the hospital 45 minutes-hour away from my house.
Before I left I started crying and the nurses were so sweet and comforting. I wasn’t allowed to drive for a week because of having a C-section and didn’t see Paige until another 48 hours. The doctors recommended I stay home and rest for a day and then come back. My dad agreed so I was stuck at home. It was torturous.
It was Wednesday and finally I was able to see my baby! She had wires everywhere and was in an incubator. She was hooked up to a ventilator, but it was on room temp. She was breathing on her own but wouldn’t open her mouth to breathe. So the vent was there to simply keep her mouth open. WOW!! If she was going to die how is she breathing all on her own? I had hope that maybe she would come home.
Thursday, day 6, I was able to hold my baby for the first time. I waited 6 entire days!!!
The next thing I knew I was signing a paper for her to have a PICC line. This actually a great idea in my opinion. It is an IV that has a port that allowed multiple medications, etc. to be administered. Here she is with her PICC line and the breathing machine. She also had a feeding tube in her mouth.
Week 6 I was signing papers for a feeding tube to be inserted.
This picture is Paige at home I just didn’t have a pic of her feeding tube in the hospital.
Finally at week 7 we were going home. Paige was going home with nursing care. The day before she came home I remember asking if the first night my baby was home if we could be nurse free… the answer was no. What? How can you say that? Well the Dr wrote a 30 day script and you can’t take Paige home without nursing care. It’s to make sure the baby gets the care she needs. I then said I don’t want nursing care I can do it myself. The hospital didn’t understand why I didn’t want nursing. I was the first parent to oppose nursing care.. and that I was a single parent. Well it turns out that the hospital was right, lol. Nursing care was the best thing for Paige!
The big day finally came! That day was April 14th, 2009. It was a rainy day and my dad asked if I wanted to wait another day I an d said NO WAY!! I had to learn how to use Paige’s medical equipment that day and then put her in my car to go home. Of course it was not a typical homecoming as I had nurses waiting for me to start immediate nursing care at home. I felt bombarded with yet another medical staff that I would have to deal with. They were assessing Paige in the living room as I was at my kitchen table answering a ton of questions. I didn’t even give the nurse much eye contact as I was paying more attention to what the other nurses were doing to Paige.
So here I am the first night my baby is home and she is out in the living room with the nurse while I am in my room trying to sleep. I keep telling myself everything will be ok. Paige has a heart monitor on her and if anything happens it will wake me up. And she had 24 hr. nursing care so I felt relief with that.
Paige came home on a Tuesday and that following Saturday there was not a nurse scheduled to come. So my dad tells me that we need to change the dressing under Paige’s trach. I said it looks ok we can wait until tomorrow when the nurse is here. I was not good enough to do it by myself. Clean the stoma, change the dressing, and hold the trach. Well I ended up doing it and what happens the trach fell out. I start to panic and put it back in… then some blood comes out. No way this is not happening. I was ok with the trach falling out because I changed her trach in the hospital almost everyday. One of those days it fell out and I had the nurse show me what to do. But where was the blood coming from? So I call the dr and they explained it was just from irritation. Ok makes sense her skin was irritated and I rubbed it and it bled a little. Whew!
Just to back up for a second during Paige’s hospital stay I was at the Ronald MacDonald house. I stayed there for 3 or 4 weeks. Even though Paige had nurses to take care of her I still didn’t sleep well. She was in a room with up to 7 other patients at a time. For the most part Paige was the only full term baby in the NICU.
When we were home I did sleep better in the beginning… until that all changed. The overnight nurse would fall asleep and the heart monitor or feeding pump would go off and wake me up. Paige was in the living room and I was in my bedroom with the door shut. Needless to say after way to many incidents with that I got rid of overnight nursing. I mean if I was getting up to do the job why was someone else getting paid to sleep.
Slowly I got rid of weekend nursing too. The nursing company didn’t understand why. I was the only parent that was giving up nursing care voluntarily. Well I ended up quitting my job because I was having bad experiences with the nurses. One fed her wrong on purpose and Paige got really sick. The night nurse was always calling in and sleeping. The weekend nurse always complained to me about her husband leaving her. I eventually had a night job the nurse quit without notice so I had to quit a second job. Here’s the thing when you have a child that will not be accepted by any daycare, the only babysitter I had was the nursing company.
Despite all the bad experiences nursing was one of the best things that happened to Paige. The third week Paige was home we got a day nurse named Sharon. She was with us until Paige died, almost 4 years. Paige loved her so much it was awesome. Sharon could have easily just let Paige lay there and not do anything. But she pushed her and never gave up on Paige. Sharon did PT,OT, and ST with Paige. Then in 2011 we got the nurse Lexuan another nurse that Paige loved. The two nurses balanced each other out. We used to joke about the mean team and the nice team. The PT, Sharon, and my sister Anna were the mean team. And Lexuan and I were the nice team. We all made her work but the nice team was more well nice! LOL
This is it for now! I realized it is easier for me to write shorter posts than to try to write a really long one. There won’t be such a long stretch in between the next posts.
While I was pregnant I tried to make sure I was as healthy as I could be within my financial means. I worked at Starbucks and didn’t even drink coffee ( I am not a big coffee drinker so that was not really hard lol). I remember feeling lonely not having Paige’s dad around and being pregnant. Honestly her dad was in Iraq and we were off and on until she was about 9 months old.
Just to give a quick background what was going on with Paige’s dad and I at this time. I literally got pregnant the day before he left for Iraq (and no not on purpose). When I found out I was pregnant he wanted an abortion. This did not have anything to do with something being wrong with Paige ( we didn’t know at this point). Paige’s dad has his reasons and I am against abortion. So because of this conflict it caused issues between us. Now I know that some of you are in disgust with Paige’s dad wanting an abortion, but keep your judgments to yourself as it is not up to us to do condemn. I am also not trying to be negative about him, just giving you an overall picture of what was going on. Paige’s dad (who will remain nameless) is not here to defend himself so and if there is any negative or hateful comments about him they will be removed. Him and I had some rough spots, but we do not hate each other and we now get along.
Going back to the week before Paige was born when I had an overnight stay in the hospital. I was at home and I went into the bathroom and noticed I was bleeding heavily non-stop. I started to panic and called my dad to come get me and take me to the hospital. We went to community hospital because it had a maternity ward. They then got an ambulance and to Bayfront Medical Hospital I went. I was strapped down like a mental patient so I wouldn’t move and the ride was so uncomfortable. I was in a special ambulance that had a nurse in it too. I was hooked up to monitors and just was well miserable. I was released the next morning and the doctors have no explanation as to what happened.
Ok so the day of getting this birth started is finally here.. February 18th. 2009. The doctors wanted to do one more ultrasound before she was born. They honestly did not know anything else then what I have already been told. Because they took so long to do the scan and read it I was pushed back a day. So on Feb. 19th I was induced (2 weeks early) and the next day Paige came.
This was such an emotional experience and I couldn’t wait for it to be over. If it was up to me my baby would stay inside me forever so I could keep her safe. That is not possible so I had to somehow prepare myself that the end is finally here.
I had asked the nurse to give me the epidural as soon as I was allowed to have one. I was not really good at handling pain. Because my baby was going straight into the NICU at All Children’s (the two hospitals were connected by an underground tunnel) I was in an OR and not a birthing room. All modesty was out the window as there was at least 15-20 ppl in the OR waiting for anything to happen.
I tried natural birth but I was so numb from the epidural I couldn’t push her out. They turned off the epidural hoping that would help and it didn’t ( I was having huge contractions and couldn’t feel them lol). After two hours I had to get an emergency C-section. Well since I was already in the OR they didn’t have to move me anywhere. And she was born and it was silent…. not what any parent wants to happen. They pushed her over to me ( I could not hold her) for about 30 seconds and I couldn’t even process what she looked like. As a matter of fact I couldn’t even go and see her until the next day. She had so many tests run on her the minute she was born it was heartbreaking that I couldn’t even be with her.
All I knew is that I needed to walk so I could get this situation under control. I was the only parent on the floor without my baby in my room. If you have never had your stomach cut open you can’t imagine how hard it is to walk afterward. I remember the first night someone came in my room to talk to me about being separated from your baby and I just cried and she said that is the fastest someone has ever cried, my reply I haven’t cried since I was 7 months pregnant and it was just pent up sadness. I didn’t want this day to come.
The night nurse came in that night and cleaned me up and forced me to stand up, I couldn’t as my stomach felt paralyzed. But after a few attempts I did it. The next day I went to see Paige and I didn’t know what love was until I put my hand on her and touched her. She was born on a Friday and so I wouldn’t see the doctors until Monday. After I got back to my room I decided I am going to walk. I didn’t have any time to waste this innocent baby needs me. I was only supposed to walk 2 times a day I did it 5 times. The nurses were impressed and said that they have never seen anyone walk so much/fast so quick.
I would go back and fourth to see Paige over the next few days and I decided to be discharged on Monday so I could talk to the doctors before I left. Overwhelmed is not even what I was feeling it was beyond that feeling. I don’t know the first thing about babies and this is my FIRST one. Oh no what was I supposed to do?
I am thinking this is going to be in 4 parts not 3! Sorry guys this is a little tough for me to write, plus I have a lot to say in the next segment. Here is one of the very first pics of Paige! 6lbs 3oz’s and 16 inches!!
I have always believed in God since I was a child, but I grew up in a non-Christian household. Because of that I did not really put God as my center… I didn’t really understand that was what I was supposed to do. I will talk about my childhood in a different post, but for now I am going to talk about when I was 25.
My sister was in the Army and was stationed at Ft. Hood in Texas. I decided after her first deployment to Iraq I would move out there. I honestly had a completely different plan than God did for what I was going to accomplish out there. I wasn’t even really that sure what MY plan was. I always seemed to make things work so I wasn’t too worried.
The job that I was supposed to get fell through and then I started to panic. I had a townhouse, 2 cats, a dog, and was getting low on cash. After days of job hunting I wanted a day off and I decided to go find something to do. I was at a stop light and something told me to look over and I did. I saw the Family Christian Store and something told me to go in and apply. My first thought was NO WAY… I am not working in a religious store. But I still drove up and parked. My second thought was I am not even dressed to apply. Still I went inside.. well needless to say I got hired. Well it was a job right? I didn’t have any friends and so really there was not anyone to impress. I figured that this would be my job until I could find a better one. I was 25 and had a ton of management experience so I told myself it shouldn’t be too much longer until I got a better job.
I was in charge of the shipping so I had a pretty good job there, and soon after I started I met Cherise (who became Paige’s godmother). We instantly became good friends. I had recently started to go to a church by my house and invited her. We went a few times together, but it wasn’t really keeping either one of our attentions as we discontinued to go. But there was one sermon that would change my life more than I would ever imagine. The Pastor was talking about having a faith and doubt relationship. I realized that I did not completely depend on God to direct my life and decided to pray about it. I had a talk with God and said show me how to do this, show me how to get the doubt out of this relationship.
I had recently got a second job at a bank and I wasn’t really liking it, but I lived alone and needed to pay my bills. My part time job at the bookstore was about to temporarily become fulltime for the holidays. So I had to either have someone else help with shipping or quit my bank job and hope I would be able to get another part time job in January. Well if I was going to put my full trust in God I knew what I had to do. I had to quit the bank, so I did. I will admit I was scared…really scared. I always played it safe and made decisions based on what I knew the outcome was.
I decided to wait until late November/early December to apply for part time jobs. I decided to apply at Starbucks. I didn’t get any callbacks to any of my applications. I was getting really nervous about how I would pay my bills in February. My sister and I had already decided to go to FL for the New Year and so we did and on my way to FL I got a call from Starbucks. I was so excited….this God thing may just be working.
When I came back from Florida I had an interview and was hired for a new Starbucks that was being built to open. I couldn’t believe what was happening. Faith really does work! Don’t get me wrong it took that entire year and a half for me to work on understanding what having faith really was.
In 2008 I met Paige’s dad and he along with my sister was deployed to Iraq. A few weeks after he had left I discovered I was pregnant. I will admit I was not happy…what was I going to do? Everyone I knew was in Iraq and Cherise’s husband had PCS’ed to FT. Bragg in North Carolina. I had moved out of my townhouse and was renting a room from a co-worker. How was I going to have a baby and not have a place to put it?
That’s when I decided to move back to Florida. I drove with my 2 cats and a dog when I was 4 months pregnant. I fit what I could in my car and left the rest behind.The person that was supposed to drive back with me and provide a place to stay left without me and didn’t even tell me. So because I couldn’t get a hotel I slept at a rest area. It was not fun at all.
I finally made it home safe and sound and was happy to be around family. I was able to transfer my job with Starbucks which was a good thing. When I was almost 6 months pregnant I had my first ultrasound. I was excited and surprised when I got a short video of my baby on a disc. The tech told me that she could not see the sex of the baby because it was moving a lot. When I got home I showed my dad and he asked if there was something wrong with the face..of course I said no (I have never seen an ultrasound before so I thought it was just blurry or something).
I received a call a few weeks later asking me to go get a level 2 ultrasound. The doctor couldn’t get any clear results on the first ultrasound and wanted to get a more in depth look. I said ok still not even realizing what was happening. I went down to St. Petersburg and was told my baby would be a stillborn. They wanted to do a amniocentesis to run some tests. This day was December 9th, 2008. A day that would also be a day of bad news (the same news but a lot more intense) in 2012. It was then right before Christmas I had to decide if I was going to plan a funeral for my baby or not. I decided I wasn’t going to until I knew that the baby would not survive. I never had a baby shower or nursery set up just in case I had to return all of it.
I was being closely monitored to keep track of the baby’s progress. I finally found out at 8 months that the baby was a girl. Paige supposedly only had 1 eye and a mouth, and one leg was shorter than the other. As it got closer to my due date the doctors told me that if she made it to live birth that she would not live long as she is only surviving because of the umbilical cord.
About a week before Paige was born I started to bleed a lot and had to stay in the hospital overnight. Honestly I though that this was it the baby finally took a turn for the worse. She took a turn alright…. she was just fine but doing flips inside her mansion. I had enough amniotic fluid for triplets. My stomach measured a lot bigger than normal.
A week later on February 20th Paige had finally made her entrance… and was immediately rushed to the children’s hospital. This was a journey that I was not prepared to handle, but I asked God to show me and he has.
My next post I will talk about the birth experience and after she was born. I will talk about how God changed me in ways I never thought possible. Here are a few of her sonogram photo’s. If you have any questions or comments please leave them and I will answer them.