Slight Change of Plan

When I wrote this morning, I thought that this would be a day dedicated to my house and girls, since mom was doing a little better yesterday. I knew she was sleeping awfully late, but I assumed she over did it a bit yesterday. I went ahead and signed her contract and received her copy from the funeral home, (to save her a trip). Then I ran in walmart, not for groceries (I was too antsy for that), but for necessities. Then I went to her house. I arrived at 12:30pm, and SHE WAS STILL ASLEEP. Ok, she slept most of the night, all morning, and into midday.....Somethings up. I called the clinic and was surprised when they immediately called me back. They wanted her to come in for blood work, they wanted to look at her urine, and they wanted to give her some fluids. Amber was headed to school and Josh was headed to work, so mama carpooled with them and they dropped her off at the clinic. We didn't want her to go by herself, but I had no other choice. The girl's are not allowed. Everyone in my world was unable to babysit at the time. I stayed at mom's house and put my kids down for nap. I spent the next hour texting back and forth with mom, the aunts and my brothers. I couldn't make my stomach stop turning and my hands stop shaking. I think my nerves have finally caught up with me. I've actually been shaking for a couple days and sick on my stomach. I've put on a couple pounds with mom feeling good, but now with her down again, I am nauseous and have trouble thinking of foods that are appealing. I just kept thinking about her laying in that bed all day. How horrible must you feel, to not have enough energy to even WAKE UP. I feel so bad for her. I want to help her, I want to be with her. But my hands were tied. So I just waited and cried. She finally text me and said, "they want me to get platelets over at the hospital". I called immediately. She just received platelets at the end of last week, and she needs them again. This is not good. She said "I'm just going to walk". "No mama! You ARE NOT walking in that heat!". I woke my girls and tossed them in the car. A small nap is better than no nap in the world of behavior. We flew to the clinic, then over to the hospital. The wait was short and before I knew it we were in a room. The big mystery here, is that before the platelets, Dr. Penland called for a CT of the chest. Mom JUST had a CT last week (remember? It revealed the cancer was the same). She also had an xray at the beginning of this week. I became upset thinking that they may have saw something new on the xray. I am still petrified and mystified that this test happened today. I am trying to not think about it.

My kids have been in tow all day. The funeral home, wal-mart, the waiting roomS, the hospital room. And I have been pretty much the worst mom alive. Snappy. Impatient. No Fun. Emotional. I hate nights like tonight. Nights that I look at my sleeping angels, then feel guilty because they got the short end of the stick today. It is not their fault that gammy's sick. It is not their fault that they are active and waiting rooms are not playgrounds. It is not their fault that they have no volume control. Yet sometimes I feel that I penalize them for it. Just for being kids. Ah guilt. My new best friend. Luckily, their daddy met us for a fast food supper and took them home. Nori loves her daddy. Neva is a mama's baby that he had to bribe with watching "Transformer's Number One when we get home...." just like that, she threw away her moody mama like a bad habit.

I returned to the hospital to mom and Ronnie. The aunts had come and gone and Josh was at work. This gave the three of us the opportunity to have a very interesting discussion about options. The subject has been up for debate recently about seeking different medicines and treatment options for mama's cancer. I am particularly sensitive about this subject, because I want the decision for experimental or new medicines, techniques or treatments to be mama's and mama's alone. I WILL NOT voice my personal opinion as to whether I am pro or anti. The thing is, we have finished chemo. In 3 weeks we will finish radiation. With the plan we have been given, we just wait. We wait for the cancer to grow. This scares me beyond words, and I don't like it. From what I have read (I don't read anymore--too sad), this is the typical small cell pattern. I am not opposed to trying new things. However, I am opposed to forcing my opinion on mama. If she wants it, we will do it. If she don't, I will not pressure her. She is of sound mind (somewhat), and she can decide what to do with her own body. 10 years from now I will not regret allowing her to make her own decision. However, if I pressure her to take drugs that will drag her down more, perhaps for NO reason, making her quality of life miserable.....I will hate myself forever. I know this with great certainty. I will always encourage her to fight. To take her meds. To stay up-beat and nourish herself. I won't let her give up. But I can't pretend that I know what she's thinking or feeling or physically experiencing right now. So I won't pretend to know what she needs to do and what she doesn't. I have to trust that she will make the right decision for herself. I trust, with all of my heart, that she will do that. If not for herself, for us and her grandkids (the 4 loves of her life). I told her all of this. I told her that I would support her no matter what. Ronnie agreed. Ronnie is FOR the idea of different treatments, (he DID voice his opinion) but he also wants her to decide. She told us that right now, she is not open minded about new dr's or treatments. But she cannot say what the future holds. She warned us that there may come a day that she says "alright, I'm done. No more chemo". I told her that I would encourage her to continue, but still support her decision. That is a tough thought, that I would rather not entertain. After we talked, I think we all felt a little bit better. Scared but better.

She finished around 9:30pm. She was exhausted. She looked a little better, but still not good. She was out of breath really bad and coughing as I walked away from her and headed to my car. Without Amber at her house tonight, I have to trust that she will let Ronnie know if she feels bad or thinks she has a fever. I am very worried and paranoid. A long gloomy day followed by a sleepless tear filled night. Guess I'll wash that all down with a tall glass of Mother's Guilt. My how my plans changed.

Crystal Cloudy

Something wonderfully precious to me that I had to part with a couple years ago came back into my life yesterday. Well, sort of. An offer for it to come back was put on the table. I find myself thinking about the time I spent with this "old friend". I fantasize about the things I could accomplish if we were to become "reaccquainted".

Anyway, Mom is still doing pretty good. Amber said she woke up around 3:00 this morning to the sound of mom coughing horrifically. I assume that is why it's 9:30am, and my early bird mom is still in bed. I haven't actually spoken with her since last night. She sounded tired yet better when we spoke. She goes back on Friday for more bloodwork since her levels are still questionable. My Aunt Punkin (yes, Punkin) called and spoke to a gentleman at the blood bank regarding the supply amounts of blood and platelets in our area. She said it was an equally infomative and alarming conversation. Turns out, there's not an endless supply of this stuff sitting on a shelf just waiting to be used. Her wheels are turning and we are looking at planning a blood drive at some point. I will get you more details later.

I am about to head to mom's to check on her, then to get her contract (from the funeral home), then to the grocery store. I realized that we have absolutely no food in our house! We hit Walker's Dairy Bar last night, but I have no choice today. Wal-Mart it is. Also, I have a mountain of laundry (clean and dirty), a sinkful of dishes, and 2 kids that are completely intellectually understimulated and overwhelmed with appointments, drop offs and car rides. I'm going to dedicate a day to them and my house. With all of these things happening and other things falling at the wayside, I am actually considering taking on my "old friend"?? My mom is ALL FOR IT. She is so proud that the offer is out there and feels like I need a distraction from our situation.
The thing is, this friend is a bit needy and high maintenance. To call myself a "GOOD friend", I would need to be very dedicated and give 100% of me. I am afraid there is not enough of me to go around.

 I typically regret everything. Yes, I am that person that never really knows if I have made the right decision. So I ask myself "would I rather regret a missed opportunity to reconnect with something I used to hold so dear, or lost quality time with my mom?". My answer is clear, yet difficult.

I'll Take It

Last night I had a tough time sleeping. My mind kept bouncing from thing to thing and before I knew it, Michael's clock was going off. I finally went into a good sleep after he left, but it was short lived. My girl's decided to wake up early this morning. I awoke with my hand reaching for the phone. It is almost automatic. I called expecting Amber to answer and give me a rundown of mom's night and morning so far. But I was shocked when a familiar voice answered on the second ring "Hello!?!"  mama said vibrantly. I could almost see her smiling over the phone. That was her smile-voice. "Wow, it's you!" I responded. "Yep, I'm better. I'm not well, but I feel better. My chest feels A LOT better." I thought to myself "I'll take it....This will work for me." We made a game plan for her appointments today and I let her go so that she could call her sisters and tell them the good news. We met at Jefferson Medical to get her blood work done. She came driving up in her little sun hat. She looked very cute. Weak but cute. Sadly, her levels are the same. Which means she is still very fragile and at great risk for a lot of things. Luckily her xray from yesterday didn't reveal any horrible infections. They said it looked alright. We just really have to monitor her fever, stay away from germs and large crowds, and watch for bleeding still. She cant shave or anything that might result in a cut. Basically, she has to take it easy until we get these levels up.

By the way, if you see mama, don't let her hug you. She will every time. She loves hugs and kisses. She is probably the friendliest person I know. But the germs can be absolutely devastating to her condition right now. She won't listen to the dr and she especially won't listen to me! Maybe she will listen to you! If she does, tell her to start wearing her masks in public too!

Next came our appt. with the radiation dr. This is something that mama has been dreading with great fear. It was a pretty good wait, but when he came in he was more than willing to answer ALL of our questions.....And there were alot. If mom's still doing good and her levels are safer, radiation will begin next week. We found out that the radiation will seem just like getting an xray. There is no pain in the procedure. She will walk in and 10 minutes later she will be done. They will do this 5 days a week for 3 whole weeks. They will be radiating her WHOLE brain. She had 2 tumors. One they can't really see anymore. The other is tiny. However, the reason for radiating the whole brain, is her type of cancer (small cell) likes to hide in tiny places where it can't be detected. Whole brain radiation is the safest bet in getting EVERYTHING in there. He said that she will lose her hair and she may or may not get it back. Sometimes there is permanent loss. Her scalp will feel irritation similar to a sunburn, which she will treat with an aloe vera ointment at home. She will be very, very fatigued. Probably more so than she is now. But there shouldn't be any nausea, vomiting, dizziness, headaches or appetite loss. The only way she would experience these things, is in the event that her brain starts swelling. This is a concern for most people doing brain radiation. He doesn't think mom is likely to experience brain swelling because her cancer is so small. This is more common with larger brain tumors. However, if it does start to swell, he will treat it with steroids. Mom's biggest concern has been about memory, her vision, cognitive thinking or her ability to think clearly and do everyday activities-- will all of this be effected by treatment? The answer is "No." At least, not right now. Not after only one cycle. These side effects usually come years after treatment. However, if the cancer is left untreated, it can cause all of these things to be affected as it grows larger and heavier on her brain. They don't like to do anymore than one "cycle" of radiation because of the cognitive and memory damage that it can cause. However, with mom's cancer so small, he doesn't see a need in discussing more than one cycle. Multiple cycles are reserved for person's with large cancers that are negatively affecting certain aspects of their life (excessive pain, vision loss, etc.). I think mom found great relief in this. She was worried that she may become unable to recognize us or the kids or take care of herself and live normally.

He didn't really talk a whole lot about radiating mom's chest. I asked "if you did radiate her lungs, could you possibly get it all?" He answered kind of hesitantly. He said "We could get it all, but with cancer in the liver also, there is no guarantee that it won't spread back to her lungs the first day after radiation ends. She would have been through that for nothing". At this point, it seems he is radiating for mom's quality of life. Not for a cure. He actually said "I want you to live your life. I want you to have fun and enjoy your time". The advice is good. I'll take it. Of course, we are still hopeful for a cure. We will be forever hopeful.

Dreams DON'T Come True

I awake with a jolt. I am covered in chills. My heart is racing. My face in drenched in tears. My stomach is in knots. Then I realize: It was just a dream. She is still here. She is okay.......

My Aunt Sharon brought something to my attention recently, and I have found it very hard to stop thinking about it. She said "Nikki, I remember you telling me about your dreams. You would dream something horrible about your mama, then wake up and call her. She would say "Nikki, I'm fine", then you'd go back to bed. Do you think that was some kind of warning?". Alright, before It starts to sound all heeby-jeeby, you need to understand just how intense these dreams were.

As far back as I can remember, I felt I was mama's caretaker. If she cried, I would try to make her stop. If she was sick, I would wait on her hand and foot. Once she was running a fever. I was young, maybe 6 or 7. She was asleep and I kept feeling her hot forehead. I was so scared! So I went and got a cup of cold water and poured it on her face to "cool her off" (not one of my best get-well-soon ideas).  I remember being as young as 1st grade in class and worrying about my mama home alone. I remember in 2nd grade, my dad was out of town. I became ill at school and my teacher phoned home. Mom was running errands and this was pre-everyone-has-a-cellphone-era. When they told me she didn't answer, I started crying and told them she was probably hurt. Around 4th grade, I was up watching the movie "Beaches" and at the end when the little girl's mom dies I became hysterical. I kept saying "I don't want mama to die!" Ronnie was the only one awake and he assured me that mama was fine. It was just a movie. When I was around 11 or 12 I snuck off and called a clinic because my mom had a knot close to her breast. I didn't know much, but I had heard of breast cancer. Looking back, that receptionist probably felt sorry for the kid on the other end asking "how do I know if my mama has cancer?" I don't really know when or why I became so obsessed with my mom's well-being, but through most of my life the thoughts and fears have been absolutely consuming. Mama is more than aware of my "issue" and has always reassured me and discouraged me from wasting my time worrying. Countless conversations have revolved around her urging me to calm down and live life.

But at some point I started having dreams as well. Nightmares really. They averaged once a week or every two weeks. The dreams were different, but the outcome was the same. I lost her. I needed her and she was gone. MOST of the time, the dream begins when I find out she is gone or at the funeral. Very seldom do I know the cause of death. Some would say that the loss of my grandparents would cause me to obsess over death. Others would say that mama and daddy's divorce brought about abandonment issues. I don't know. All I DO know, is at some point early in life, I became petrified of losing my mom. Every time the weather got bad. Every time she was a couple minutes late coming home. Every time I heard an ambulance. When I knew she'd be home alone. When she got a cold. When she chain smoked. After we had an argument. The thoughts would hit me and I COULD NOT rest until I knew she was okay. The dreams were so vivid. When I would awake I would have to SEE her face to believe it wasn't true. As I have told you before, my mom slept on the couch for years after daddy left. I can't tell you the times that I woke up on the floor beside her. When I got older and she was working at David's, I would wake up and drive to the store at 3:30 AM and hang out with her until she opened. She knew when I pulled up that it was another bad-dream night. She was always reassuring. It took HER to make me feel better. After I got married and I could no longer walk down the hall to ease my mind, I would HAVE to call. It was usually early AM calls. She was always very understanding. "Nikki, I am fine baby! I'm not going anywhere, I promise. Now go back to bed". The dreams continued my entire life. But when Sharon reminded me of my "lil problem", I got to thinking.....I haven't had 'the dream', since April. That just so happens to be the month that mama got diagnosed. I've had thoughts and played my fears out in my mind. But the dream has disappeared. My reoccurring nightmare, stopped occurring.

So what does it all mean????? Perhaps it's a coincidence that I am wacko and my mom developed a terminal illness. Then again, maybe it was my heart or my mind, or God's way of giving me strength to handle this. I don't allow myself to believe for a second that this cancer will defeat my mom. I CAN'T think like that. No matter what the experts or statistics say. My mind always finds itself shuffling through the many possibilities that life holds for us. Good and bad. When I have a bad thought, I have HER to make me feel better. Just like all the years before. She's the only one that can make me feel better. SHE is STILL here. We are not promised tomorrow, but I have her today.  I like to think that I am realistically optimistic. However, in this case, I choose to believe that dreams DON'T come true.

Denial or Hope?

She sat pitifully in the waiting room. There were sick people all around. Some not so bad. Others were worse than her. I kept looking at her. She has lost more weight, more hair and her color is a dull gray. I have not felt a feeling quite as sad as the one I felt looking at the woman that has wiped my tears, comforted me through pain and eased my fears and thinking "it's time for me to do the same for her". I know she is worried. She doesn't willingly go to the dr unless she is worried. She said "well, I did have a few good weeks". I knew what she was insinutaing. I refuse to believe it. She is going to get better. She has to.

The last few days have been absolutely dreadful. She has barely left her bed. She has finished her antibiotic and she is still sick. Possibly sicker. I have spent most of my time at her house trying to find the middle ground between caring for her and invading her privacy. I am in and out of her bedroom constantly. My kids have, quite possibly, forgotten what home looks like. Her breathing is ridiculously hard to listen to. Her cough hurts MY body. I can only imagine how her chest and ribs feel after one of her marathon coughing spells. She is exhausted and just plain weak. She is eating good, by my standards, but the weight is falling off. Me and my brothers are beside ourselves with fear. This is the hardest thing I've ever witnessed.

Today started off with an illusion. "I will hang out at home, let Amber take mom for her follow-up bloodwork and then I'll visit with her this afternoon. Maybe make her some soup or something". Well, I barely got that though through my head when I spoke with Amber. (They have been at mom's for a cpl days because their AC is broken and awaiting repair.) She said that Mom was pretty bad. That she had coughed all night long and barely slept. She had a lab appointment, but instead of getting ready, she was back in bed. I asked to speak to her. She had told Amber that she didn't have the energy to talk on the phone, but I insisted. When I heard her wheezing, I knew we needed to see someone. I quickly called the clinic. I don't think I actually brushed my hair before we left. But atleast my shirt was on the right way this time. I usually wear my shirts inside out or backwards these days due to my not taking the time to even look in the mirror. Luckily, I have never showed up anywhere missing any clothing. Anyway, when I got there and she walked down the hall, I started crying immediately. She lost a great deal of hair last night. It's been a long time coming, but it's still really hard to see. She looked so bad. SO bad. I'm not sure, but I don't think mama noticed me getting upset. Amber patted my back sympathetically and reminded me that everything was going to be okay. I got the feeling that Amber had experienced the same breakdown when she initially saw mom this morning. We are all very close. I laid out mama's pills for the day and stood by and watched her take them all. She asked me "do you think I need to wear a hat or a scarf?" I assured her that she looked beautiful either way. I knew she was self conscoius, so I went ahead and tied on a scarf for her. The wait was long at the clinic. I stared at her and (probably rudely) stared at the other faces in the room too. I always wonder about their stories. I always worry about them, even though I don't know them. Even if she is stressed out with unbrushed hair and an inside-out shirt, I hope they have a daughter that loves them like I love mama. They did blood work and a chest xray. We found out that she still has low platelets (about a 4th of what yours and mine are) and her white cell count is still dangerously low. We are still awaiting xray results, but in the meantime, they let her come home with a STRONGER antibiotic and a steroid. We have been encouraged to keep her away from large crowds (germs) and we have to monitor her fever very closely. Also, we have to watch for bleeding (nose bleeds etc). She is very fragile right now. Something very small can be fatal. I am scared for her to get in my car. What if I wreck and she gets a small gash and bleeds to death? What if my girls are carrying a little virus germ and she catches it and dehydrates? The worries are overwhelming. It's not just me. It's all of us. My older brother told me he thinks he has an ulcer. We are all on edge and trying to hold it together for her.

Ronnie is petrified. He is a natural born worrier. Josh is confident-he is naturally optimistic. I am....Well I don't know what I am. Depends on what moment it is, I guess. Though mama is forever hopeful, in her heart of hearts I feel like Mama is thinking that this is "the day". The day things get bad and stay that way. Well, it can't be. I don't believe that. I know she feels rough, but she IS going to get better. I just know it. Please continue to pray.

The Results Are In......

Well, if you caught my last post about out trip to the coast, I kind of left you hanging. When we got back into Laurel, I insisted that before we even went home, we swing by the clinic and let them know about her condition. I found myself sitting in the waiting room (mom was in the car with the girls) and I was sobbing. The receptionist offered me a tissue. I just started and couldn't stop. I had been watching her struggle to breathe, struggle to walk around and force a smile until she no longer could for 2 straight days. I was scared out of my mind. Finally, the nurse walked out. They had called mama in an antibiotic and a decongestant. I could see the sympathy in the nurse's eyes. She didn't even ask me what was wrong. I guess they see this kind of thing all the time. Mom had an appt the next day, so they would take a look and listen at that point. I dried my face for mom's sake. I stayed pretty stable, until we got to CVS Pharmacy. They are all so friendly and wonderful in there. They always ask about mom. That's all it took. I started crying in there too. I explained that she was very sick and I was very scared. Not only did I have this cold to worry about, but also the scan results we would be receiving on Friday (the next day). I was tired and emotional. But more than anything, I was absolutely petrified.

I called frequently to check on mama. She was sleeping. She slept most of Thursday and Thursday night according to my brothers and Amber. When I arrived to get her, I was mortified at her color and just the look on her face. It was like day 1 of this ordeal all over again. She looked really bad. When we arrived at the Dr.'s office, mom had started talking a little bit. Her breathing was not good. She was coughing horribly and gripping her chest in pain. I was aching in fear. Finally we were called back. My heart was barely beating when it was announced that mom's cancer is the same. It has not shrank anymore. I was secretly devastated. They said this would happen. That the cancer would finally stop responding. In so many words, the Dr. said that mom's last two cycles of chemo were for nothing but adding toxicity to her body. So now comes the break that I told you about. They informed us that one lung was making a "popping" sound and one of her ears was infected. The last time she was making a "popping" sound, was before her diagnosis and they said it was pneumonia. This scares me. They went on to tell us that mom's white blood cell count was DANGEROUSLY low. She spoke of admitting mom, but agreed to let her go home. She encouraged me to take her temperature frequently and rush her to the ER for even a low grade fever, as this could be fatal because her body has NOTHING to fight off even the smallest infection. They said she could receive her blood on Saturday--but she had no choice. She had to go get platelets IMMEDIATELY. A healthy person's platelet count is around 100,000. They give a transfusion if it hits 20,000. My mom's was at 9,000. She was really bad off. When your platelets are that low, you are at a serious risk of bleeding to death. So we headed to the hospital. It was a pretty long wait (about 2 and a half hours-WITH MY GIRLS! AHHH!), but the staff seemed really busy. Mom was pitiful. She kept falling asleep in the waiting room. You could tell her little body was just plain worn out. Finally we were ready. Unfortunately, the chemo room was closed for the day. So mom had to go to the 3rd floor for treatment. The third floor was actually better in my opinion. She had a room that she didn't have to share with other patients. She had a bed instead of a recliner. But more importantly, the girls were allowed! SO I could go in if I wanted. I started thinking about the day before. She had swam, walked an entire museum, and walked along the beach. All with her body in HORRIBLE shape. Just the ear infection and respiratory infection would prevent most from getting out of bed. But she had SO much more working against her! Those kind of ailments would put the strongest person down on their back. But not my mom. I cannot believe she fought through that pain and exhaustion to try and keep the trip positive for me and the girls. She could have died. Really. No exaggeration. I was angry that she didn't tell me how bad it really was. Then again, I was angry because I really already knew.

(There's mom getting her platelets. It was 2 hrs past naptime. So my aunt sat with her and I took the girls home for a cpl hrs. They slept, I cried. I got it out of my system before going to pick mom up)

I cannot believe that this is all happening so fast. She was fine, and now she is horrible. I have spent the last couple of days tag teaming with my sister-in-law preparing meals, taking temps, cleaning house and what mama calls "babysitting" her. Friday night, we woke her practically every half hour to take her temperature. I was petrified at the thought of my mom dying in her sleep because of a cold. I know that sounds morbid, but I was overwhelmed by that fear. She is really not any better today. That too is a scary thought. She is half way through her antibiotics and there is no improvement really. My aunt sat with her this morning while she received her blood. I sat this one out. They had breakfast afterwards, then she went straight home and went to bed. She slept all day. Ronnie and Amber contacted me separately because they were very concerned when she woke up. Her breathing was terrible. They both felt that she might need medical attention. She snapped at Ronnie when he mentioned this. Soon after this incident, I arrived. I walked in her room. There was a pile of little tissues on her bed. Beside her bed was her bag of medicine. On a stool by her side was her nebulizer (for breathing treatments). She looked so pitiful. So frail. Her breathing was reminiscent of those first dark days. I asked her in a nonthreatening way if she would tell us if she needed help. She assured me that she would. She said that when she woke up and was having trouble breathing, it made her panic. She feels like she may have had a panic attack (which makes breathing even harder) and this is what Ronnie and Amber saw. "I don't want to leave yall, Nikki. I WILL tell you if I need a dr. I promise". I believe her. We are all just scared. I am really emotional right now. I am not quite sure what is happening. Is she starting all over? Is this JUST a cold? I can't stop crying. I am trying SO hard, but I can't help her. Not really. I can't make her catch her breath. I can't make her feel healthy. What can I do?

Sadly, she had to cancel her baptism. She cannot get a full breath. The thought of going under water scares her. Also, the dr doesn't want her around alot of people right now because she is so weak. I know she is sad about not being able to go to the 1st day of Journey Church in it's new facility. We were SO excited. So I intend to go sit with her in the morning to take her mind off of it. I will sit with her everyday until she is better. Daylight to dark if need be. Shes my mama. I need her. And right now, she really needs me. Please pray. Please.

Two In One

This is a double blog. That's right, you get twice the ranting for half the time (just kidding). Here we go:

"Accidental Complaint"

Sometimes when I write, I am so focused on the therapy aspect of it, that I forget there's a couple people actually reading. Well today while driving mom and the kids to the museum, I received an interesting phone call. It was from the Director of the Pediatric Floor from the hospital that initially treated Nori for her "incident". She had somehow came across my blog, and wanted to talk to me about my experience. You can imagine my shock! She wanted to hear my version of my family's experience at her hospital and on her floor. She listened attentively. She then spoke eloquently and respectfully but also factually about what was recorded from that night. She spoke of things that I had forgotten or possibly never knew due to my panic-y reaction to the situation. It was documented that Nori DID receive benedryl in the ER as well as a steroid in addition to the morphine. This was not something that I mentioned in my previous blog (because I didn't know). She also asked me about the nursing staff's performance on her floor. I told her that her employees were attentive, friendly, and accommodating to my family (this was also not mentioned in the previous blog). However, my only complaint, and it is a biggie, is I felt like there may have been a lack of communication between the nursing staff and the dr. I felt strongly that the dr should have seen us BEFORE Nori got SO bad off. I told her that I felt like this vital "miscommunication" has had me petrified of the "what if???" every time I allow my mind to drift. She offered her sympathy for my having been through that experience. She apologized on behalf of her coworkers and staff, yet stands behind their abilities as medical professionals. Luckily, Nori is a healthy happy little girl several months later. And I learned a lesson, to be more assertive and voice my opinions in a stronger fashion. This director spoke with her staff about their communication skills as well. I informed her that my prior experiences with her place of employment ARE ALL POSITIVE. I had both of my girls there, and I really feel like I received special treatment BOTH times (even though I know, that is how EVERYONE is treated). My future children will be born in this facility. This hospital has treated my mom since she has been sick as well. Every time my mom has gone into the hospital, the whole staff from admissions, to nursing, to housekeeping, to dietary (especially dietary, YUM) have been exceptional! When we have taken her through the ER, we have all but had the red carpet rolled out for us. They took us in a separate waiting room away from other patients, they got her to a dr SUPER fast, and the dr was phenomenal.

To sum it up: Was my experience that night in the ER a bad one? Yes. I am uncomfortable with how non-chalantly we were initially treated. I know there are better "ER CHECK IN" experiences, because we have ALWAYS had them with my mom. Were there good aspects to the ER experience? Yes. The nursing staff was very friendly. I was hysterical and they were very reassuring. The facility was clean and well maintained. However, when they were running Nori's IV, there APPEARED to be a little bit of inexperience to my untrained eye. The biggest thing: Nori's dr. was not as attentive as I would have liked. I feel like the answer was not obvious, so he assumed. That assumption could have been a fatal mistake. Could I have been more verbal? Of course! That is why I am so mad at myself! Was my experience on the pediatric floor a bad one? No. Was I given non-factual information while on this floor? Yes. Her swelling was not due to her IV fluids. But it was a scary situation, that for whatever reason WILL NOT stop replaying in my mind. My blogging about it WAS NOT A COMPLAINT, but a mere attempt at venting and moving on. However, this incredibly dedicated woman, read my blog and took the time to call me, listen to me, apologize for any misunderstandings, and ease my mind about future experiences with her facility. WOW. To me, that is absolutely commendable.

"Discovering Memories"

Mom and I took the girls to the Lynn Meadows Discovery Center in Gulfport, Ms. I went there a few years ago when I was in school and I was so anxious to take my girls. We decided to stay the night and kind of make a mini vacation out of it. Sadly, mom came down with a little cold just before we left.

Mom and the girls checking out the view from our room.

We spent alot of time in the pool, the weather was cloudy and perfect for little ones.

Neva got very brave with her little life jacket on. She didn't want ANY help.

Look out Kim Kardashian, here comes Nori! (Little Swimmers are expensive!)

She didn't feel well. She was coughing and her chest hurt really bad. But she put on a smile for us.

POOL TIME!

I have a little motion sickness issue. So mom took the girls on their first escalator ride!

After we ate, we decided to turn in. It was a fun day. I hoped mom would wake up feeling better.

The girls slept great. I didn't. I kept listening to how horrible mama's breathing was. She was struggling. It was truly the saddest most heart wrenching thing I have EVER listened to. She was pitiful. I didn't sleep a wink.

She didnt wake up better. She woke up worse. Way worse. You can see it in her face, can't you? She was swollen and dark eyed. I wanted to just head home, but she refused.

Welcome to Lynn Meadows! An all HANDS-ON museum for kids!! Very cool!

There's Neva serving Gammy in the dining area of the train.

This was a little reading nook. There were several books available and cute cuddle toys.

Mama took frequent breaks.She was coughing uncontrollably. I was so worried, but she kept assuring me she was okay.

The kids LOVED this airplane. Of course, they loved every exhibit. Each room had a different theme. You won't see all the rooms in this post, cause you'd be reading ALL DAY! But each room really encouraged the children to use their imaginations and get into character.

Here we are at a fancy hotel having tea. Pinkies up everyone!

Nori sold her Gammy some coffee and supplies in the little market.

She even got change back!

The girls didn't care for this exhibit. But there were cameras set up and you could watch yourself deliver the news! Here is mom getting into character.

This is what was actually happening......

This is what Neva and Nori saw on the TV. It looked as though they were on the lake!

This exhibit was tough for me. But I know it is beneficial for my girls to put themselves in the shoes of children with disabilities.

Here, the girls learned about pulleys. This place was set up to accommodate emerging reading, math, and science skills in a fun way. The exhibits encourage dramatic play, creative thinking and children taking initiative. Super educational.

Mom having a coughing spell. She will kill me for posting this pic. I just want you to know how sick she was. Cant say for sure without an xray, but we feel like she may have broke a rib coughing. This is not the first time it's happened.

There is a HUGE climbing apparatus in the center of the building. The girls and I conquered it!

ART! The girls love art!

Neva cooked Gammy some lunch in her outdoor restaurant.

It was SO much Fun. We just wish Gammy felt better.

Goodbye Lynn Meadows! See you soon!

I originally wanted to let the girls see the beach before we left. However, given mama's condition, I didn't think it was the greatest idea. But she insisted. When we went to Gulf Shores this Summer, the girls were frightened by the strong and huge waves. At the coast, they were small and calm. Nori was still a little freaked out.

Mom was really down by this point. I was really worried she might pass out in this heat even though we were only there for a moment.

Exhausted!

Her too!

Her Three!

I would encourage ANYONE with young children to take the time to go to Lynn Meadows. It truly is an awesome place.

It was a great little trip. But mom's condition took me back to our train ride and the New Orleans Zoo earlier this year. She was there, but not really. It is hard to really enjoy yourself when you are so worried about someone. I knew something was really wrong. I didn't know just how bad, until we got back to Laurel..............................

Nightmare on Repeat

I spoken vaguely about Nori and her "incident" earlier this year. Now that we are better acquainted, you and I, I would like to tell you the whole story.

About a week after mom was diagnosed, I was sitting outside with the girls. I was a wreck lost in my fears and thoughts. Michael was out in one of the fields fishing. I knew I needed to go cook supper, but I couldn't focus. I needed some distraction from my thoughts. So, the girls and I got in my car and drove out to the pond to join their daddy. Nori was kind of whiny, but it had been a long day that was approaching supper time and bed time, so I kind of dismissed it. Neva, the country girl that she is, walked around picking up pine cones, and Nori and I sat side by side on the ground, while Michael fished. All I could do was fight the lump in my throat. I thought the world was ending. It wasn't long, maybe 10 min, when Nori started screaming hysterically. I checked her for ants, because it was kind of a pain cry. I didn't see anything. I picked her up, hollered for Neva to join us, and we loaded into the car. Nori continued to scream while in my lap. This is very out of character for her, but I blamed fatigue and hunger. She screamed all the way home, as we got out of the car, even when I sat her down in the kitchen with a cup of chocolate milk. "what is wrong?" I barked. I admit I was aggravated. All I wanted to do was process my thoughts, but the kids, the house, Michael even supper was calling my name relentless and would allow me to think. She continued to scream. I went and sat on the couch. "Ok baby, come here", I calmed myself down and understood my tired little baby needed me. Supper could wait. However, when she tried to walk to me, her legs buckled and she fell to the floor. "NORI!!! WHAT'S WRONG BABY?!?!" I was in full panic mode. It all started to come together a little. The irritability, the screaming, the out of the ordinary behavior, SOMETHING was wrong with my baby! I jerked her up and immediately began inspecting her feet and legs. I couldn't find anything. Neva was saying "mama, she's alwight, Nowi, you're alwight" over and over again trying to reassure us at her mature 2 and a half years. I jerked up the phone and called Michael. I told him something was wrong with Nori, she wasn't walking. He told me he'd be home in a minute. In the mean time, I yearned to call my mom for advice and for comfort. But she was in a fragile state. She couldn't breathe, hardly at all. She needed her oxygen tank at this point (this was post diagnosis, pre-chemo). She had been having panic attacks as well. I figured the last thing she needed was to panic over Nori, and what could possibly be a splinter. Nori continued to scream and cry. She had not stopped in half an hour. It was a cry I had never heard before. We moms can pick up on various cries. We know what all of them mean. Some are hunger or fatigue, some are mad, some are even fake, but this one, this was new. I was pacing the floors back and forth with Nori in my arms screaming away. I was pleading for Nori to tell me what was wrong, as if she could with her 2 word phrase maximum. I was waiting on Michael. I finally looked out the back window of our trailer and I could see him back there, STILL FISHING! I couldn't believe it! I will not tell you the contents of the next phone conversation, only that it was in my mommy panic mode and I DID apologize for it later. I did tell him that we needed to go to the ER. Between that phone call and Michael's arrival, things got worse, WAY worse. Nori started tightening up her entire body and flailing in my arms. It is hard to describe without demonstrating, but it was very scary. There was no question, something was wrong with her little body. There were times she flexed her muscled and tightened up so hard, I could barely hang on to her. I was crying. She was making a funny gulping sound with her throat too. It was kind of like when you swallow really hard. Except she was doing it repeatedly. At this moment, Michael made it home. "Just let me change clothes and clean up a bit" he said as walked to the bedroom. I cannot tell you my words that followed that statement either. Just that I did apologize later. I CAN tell you that I WAS not waiting on a clothing change. Her condition was deteriorating--and I didn't even know what condition it was! After he looked at Nori for a split second, he knew the severity of the situation. We all jumped in the car. I could see Ms. Becky outside, we whirled into her yard and without explanation we put a shoeless Neva out at her feet. All I could say is "Nori needs a dr." For the first time in Nori's life, she didn't have to ride in her car seat. She wasn't leaving my arms. She continued to scream and flail the entire way to the hospital. I was praying. At this point in my life, I wasn't very religious and praying was usually out of desperation. I prayed out loud the whole way there. I was crying and kissing Nori repeatedly. I couldn't stop saying "I love you baby, I love you so much! Please just be okay, I need you, please tell me what's wrong!" Michael drove silently. I looked at the speedometer once and we were going well over the speed limit. This is something I would complain about under normal circumstances, but he wasn't going fast enough, in my opinion. When we finally arrived at the ER, I walked in determined that I was not waiting the typical 4-5 hrs. They took us for an initial screening with a nurse. She asked question after question, never looking at Nori or noticing her symptoms (keep in mind, Nori is still screaming in excruciating pain at this point). She hasn't stopped or even paused in about an hour. The nurse calmly asked us to wait in a room for a nurse practitioner who would determine if Nori was ACTUALLY an emergency. After about ten minutes, I noticed Nori's feet were blue and swollen like baseballs. I stomped, Nori in tow, to the room with the nurse and demanded to see someone. "SOMETHING IS WRONG WITH MY BABY AND YOU'RE PLAYING SOLITAIRE ON YOUR COMPUTER!" I admit, I was rude. I am not one for confrontation, but you will be amazed at how your personality changes when your child is hurting. "Mam", she said sleepily, "I can't move things any faster." I looked into the waiting room. I saw sniffling children and coughing adults. "They need to assess whether Nori is an emergency??????" REALLY?" I was irate. I continued to rant until the nurse practitioner came in. I told our story ONCE again. Luckily, I didn't have to show out any more, because they took us on back.

Once we were back, we were greeted by a friendly nurse. We told our story, again. Nori was inconsolable. Watching them hold her down and stick her repeatedly was unbearable. They kept making little mistakes, maybe from inexperience, maybe because their patient was so tiny, I don't know. When the dr walked in, he concluded that it was some sort of bite. However, no one could find a bite mark on Nori's body. There wasn't one. Still, with no wound mark, he decided to treat Nori with morphine. He also wanted to keep her over night for observation. Michael and I looked at each other. Morphine? All I know about this drug is my grandmother took it in her advanced cancer stage, and they give it to fallen soldiers in war movies. They were going to give this scary drug to my little baby? Michael voiced our concern, but we were told that it was standard procedure for a snake bite. Snake bite? There is no bite mark! I had my reservations about the ER diagnosis, but I knew as soon as we made it to the pediatric floor, I could talk to another dr. Wrong. Waiting for us were two nurses. Nori was doped up, but through the meds she was still squirming and moaning. Her moan was heart wrenching. There is no worse feeling than that of a mother who cannot help her child. I wanted my mama. I wanted to ask if I was doing the right thing. Everything in me said that something was wrong, something undiscovered. But what could I do? Looking back, I wish I had done alot. But in the moment, all I did was trust the people caring for our daughter. At midnight, my mom and Ronnie walked in the hospital room (I had text Ronnie earlier). Mama was crying and angry that I had not called her. "She is my grandchild! You call me when something is wrong!" she demanded through tears. Mama was gasping for air and crying as she looked at Nori. She, too, knew something wasn't quite right.  She held Nori's little body. Her face was a little puffy. You could tell she was in pain, but the strong meds had her unable to communicate with her cry. Ronnie insisted that we take her to a different hospital. But I didn't know what to do. Around 1:00am, I called the nurses in, because Nori's face was beginning to swell worse. She was kind of asleep, but really not. The nurses assured me that she would be fine. At 3:00am, I was sure that she could not swell anymore. "How would you know if her brain swelling?" I asked out
of fear. They assured me that vital signs would be affected by this. I wasn't so sure, then again, what do I know? I asked if they could just talk to the Dr about it. They came back in and blamed the IV fluids for the swelling. "The dr. said she could have some more Morphine" they said. I told them no. I knew that I had never heard of someone looking like this because of IV fluids. Nori could not open her eyes. Her cheeks seemed to fill the inside of her mouth.  Her lips were triple their original size. Later in the morning, Michael had gone to open the donut shop. Mama showed back up a second time. When she walked in, Nori was in my lap. She started screaming and crying at the sight of her youngest granddaughter. She jerked her from my arms and continued to cry "Oh my God, Oh my God!" You have to understand, this was a terrifying sight. Then finally, the dr came in. She took two steps in the room, then her eyes found Nori. The drs arms fell limply by her side, she stopped in her tracks and her mouth fell open. Her reaction sent chills down my spine. Still does. "HOW LONG HAS SHE LOOKED LIKE THIS?" "Since around 1:30 or 2 am" I answered. It was now almost 8am. Nori was conscious, but she couldn't see anything through her swelling. She wasn't talking or drinking or eating. Just grunting in pain. The dr. examined her repeatedly. She walked in and out of the room, forgetting then remembering to ask me certain questions or details. Finally, just as Michael arrived, they informed us that an ambulance was on the way to take us to UMC in Jackson. You could tell that the Dr. had not been fully informed and was frustrated with her nursing staff. Michael and I fell into each other's arms crying in fear. "She's my little baby" he said with his head on my shoulder. I had never really seen him like this. It did two things, scared me more and made me toughen up. Though I was ACHING with fear, I reassured him "She's going to be fine. She's going to be fine". But in my heart, I wasn't so sure. What was wrong with my baby? How come NOBODY can figure it out? Am I going to lose her?

During the ambulance ride, I lay on the stretcher with Nori in my arms. I text various family members to ask for prayer. I also text Brother Robby. He had given me his number in case I needed to talk about mama. But I needed someone with a close relationship with God to help me. I needed prayer for my daughter. That ride was scary. I kept expecting her to stop breathing or start getting worse in some form or fashion. I was a wreck. It wasn't long, and we were there. Michael's sisters and Mama and Ronnie had beat us there. Next came Michael with extra clothes and supplies, then my daddy. We all waited with a knot of fear in our stomachs. It wasn't long at all before a team of Dr's came in and reassured us that THEY WOULD find the problem. There would be no pain meds, because these would mask symptoms. Only Benedryl. This sounded good and for the first time, it felt right in my heart. Nori's nurse was attentive and knowledgeable about children. They felt like it was some sort of reaction, but they didn't know what kind because there were no visible marks. Her behavior was not consistent with food allergies. With the benedryl pumping into her body, Nori started showing improvement immediately. She ate a little and even smiled once or twice. This whole situation was hard because they were constantly sticking her for various tests and it is not easy to watch your child experience pain like that. I slept in her crib with her. The next morning, Nori woke up a little puffy. She was BETTER! I called everyone and sent picture texts to those who could receive them. The dr. admitted that he was dumbfounded, but this is typical with allergic reactions. He did, however, say that there is NO WAY it was a snake bite, without any kind of mark. He sent us home with an epi-pen and instructions in case something else ever happened again. We left confident with the diagnosis we had received. We would much rather have an "I don't know, but we will treat her symptoms", than an assumed diagnosis treated incorrectly. The car ride home, I kept looking into the back seat, thanking God for his blessing. Since the incident, we have had a few more little cases, but nothing like that one. We still don't know anything! I heard about a recent case with a little boy who was misdiagnosed and it was a fatal mistake. I thought about it before, but since hearing about this poor little boy, Nori's incident has been like a nightmare set on repeat in my mind. Why didnt I demand to speak with the dr? I knew the IV had not made her look so awful, why didn't I stand up and say so? Why did I trust something that my heart was telling me was incorrect? I am furious with myself for not being stronger. I learned my lesson. It will never happen again.

When mom got sick, I thought my life was over. I thought HER life was over. Then, God showed me that we are still here. That my life is still a blessing. That I have to take each day and make the most of it. I still have moments, I think we all do. Things are tough, but I now know that it can always be worse. We should be thankful for each sunrise that our eyes can view and every hug that our bodies can feel. Life is short, unpredictable and tumultuous........but it is absolutely worth living.

It's A Wonderful Life

This weekend started with plans to attend the Laurel/South Jones Game. We got dressed in our Tornado gear and headed that way.                                                               

 

  Before leaving, the kids scooped up some rocks and made some shakers to cheer on Uncle Bubba's team!

 We went all the way to South and were headed for the ticket booth when Mama announced that she wasn't feeling up to it. That was okay. We grabbed a burger and headed home. Laurel STOMPED South! WOOO!

 This morning began with a trip to Hattiesburg to Jody's Bakery to pick up Neva's cake. Yes, it IS a transformer cake.

 An Optimus Prime cake, to be exact. Yes, Yes, my beautiful little princess is OBSESSED with Transformers.

 On the way home for nap, we decided to stop by Gammy's house. She couldn't wait to give Neva a BIG birthday sugar!

 and hug...................

 Then came the gift from Uncle Bubba and Gammy. Neva was CRAZY excited!

 She got the hang of it quick! and even figured out how to use reverse! Smarty pants!

 Naptime came and went, and it was time for the party. When we got to the park, and unloaded EVERYTHING, I was RUDELY informed that the entire pavillion was booked. I didn't know you could book a public park. I cried and cried when I looked at Neva's sad little face. We HAD to make a move. Neva said "mama, don't be 'fwustwated', it's going to be okay". I replied, "Aren't you upset that we have to leave the park?" She answered simply: "No". OKAY, if she can get over it, so can I!

Mom rode by Cottonmill Park, and said she thought that would be a good location. Luckily I went with my gut and we went to the donut shop. She admitted later that there was a guy sleeping on the picnic table. "Uh, excuse me sir, can I use your bed for my daughters party?"......um, no. Thanks mom.

 After a small freak out and a bunch of location change texts, everyone made it up to old faithful, the donut shop.

 Isn't she beautiful?

 Before you think it, YES, I DO fix Nori's hair. She just won't leave it that way long. That is her pony tail holder on her arm. Her bow is in my floorboard. Good thing she is so gorgeous, she doesn't need a fancy hair-do!

 It's the "aunt's club", Jamina, Teresa, and Linda. Linda and Rhett decided they didn't want to pose for this one.

Theres my daddy. The girl's call him "Pop". Check out his LHS hat!

 She is so wonderful. She has moments, but don't they all? My 3 yr old calmed ME down about HER party having to relocate.

 She blew, she spit, she got em all!

 Cuz Cutter

 Cuz Jax

 The cake is good!

 Baby Rhett

 Me, mom, & nori's arms doing what they always do.

 They were too hyped up to pause for a picture!

 BRADY!

 Noah thinks the chocolate cake is YUMMY!

 This a a SEVENTY dollar Optimus Prime (her daddy's idea). HE can't even figure out how to work it, it is WAY too complicated!

 Neva's favorite gift was a makeup set from her sister. Good job Nori! She lost interest after opening the makeup. She kept saying, "mama, I want to paint my fingernails". I opened the rest of the gifts for her. She was gracious enough to glance at them and thank everyone as I opened, then again afterwards!

 Aunt Amber was the photographer for the day!

Uncle Josh,  The life of the party?!?!

 Kristen, Her sis in law and Cutter

 Michael got to catch up with his buddy

 Poor Nay Nay. She fell earlier in the week and bruised her face and broke her shoulder. She still made it to the party with Neva's favorite autobot-BumbleBee!

 Taylorsvillians! Aunt Sharon, Uncle Kandy, and Kasen

 Pawpaw loved the hats and the goody bags!

For the FIRST time ever, I forgot to video the "Happy Birthday" song and the candles being blown out! It bothered me, but instead of stressing (like usual), we had a second sing and candle blow at home, just us. Neva didn't mind. It was cute. Then they had some post party pizza!

 Breaking the Gator in at home!

 A quick break to pick some flowers.......

 Nori took this opportunity to TRY to drive! Gotta wait till those legs get a little longer, baby!

Birthday girl winding down.......


There were ALOT more pics I wanted to share with you, but the sun coming in through the windows made them a bit blurry and dark. Sorry. Pretty much the only ones worth looking at are the ones I didn't take. What can I say?

Physically she is kind of down. Her appetite is non-existent, she is having aches and pains and she is exhausted. But spirit wise? Mama's a rock. MY rock, to be exact.

It was a wonderful couple of days. Then again, life is always wonderful when you share it with the folks you love.