How much I've learned...

In the years since I started this blog so much has changed. My babies have become boys, my boys have become young men and the one who started it all, my Mom, left me here(well, not really but it felt that way for a bit).

My babies are teaching me to stop. I don't often take moments to decompress and just be. When Gavin was an infant I couldn't even sit still long enough for him to nurse. He would often nurse, legs dangling and me doing something or chasing someone:). I joke now that he learned to eat on the go, but really I feel a sense of sadness for him that I started his life off with my sense of urgency to "do it now". I have been trying very hard to really listen to my sweet 7 and 9 now year old's, they will be gone before I know it! Can you believe James was a baby when I started this blog? Babies for but a moment in time.

My boys are teaching me that boys really do become men, far sooner than we imagine. When they are men you cannot protect them from mistakes like you could as babies and boys.  It is so much easier to be a mother to tiny tots than to boys and boys becoming men. You have to trust that the background noise playing in their heads (you know, all those things you said you "would never say again" or...)will help them make good and safe decisions, and just love them along the way! And now I wish I could say all those things for years more.

My Mom's death taught me more than I can even explain to myself. I thought I would break into tears at the thought of her for the rest of my life, I thought I would never be me again, I thought I would feel alone and empty like I did that first year, forever. I didn't and don't. I miss her so much but it doesn't feel like an open wound anymore, I feel whole and secure and happy she was who she was. I accept that she was a flawed but amazing woman and I accept that I can be flawed and amazing, too! More than anything, I know that those last days I told her what I needed and she heard us when we told her goodbye.

James and rules

James makes up games. Gavin goes along, but the games always involve James winning. He is careful to keep Gavin hanging on by a thread as his games would not work w/ just one. Oh the lives of older and younger siblings...to be repeatedly for a lifetime.
James: " and your guy flies down"
Gavin: "yeah my guy has a the power to xyz"
James : "no, no. Your guy can only abc"
Gavin, crying" my guy never wins"
James: "but he can def, almost"
Gavin" okay"
James"oh, you almost made it"
Gavin usually almost makes it. Somehow he never does.

Gavin is 6

We had a little swim party for Gavin. I had an extreme Mommy fail with trying to adjust to my new job(aka working every flipping day of my life) and did not book a weekend party. Since Gavin's main concern was friends and swimming, I pulled it together in true WT fashion and we booked the patio/pool at J. Pepe's on Greenville. This may seem highly innapropriate to some, but rest assured it was heaven to me and the birthday boy. I invited my nonjudgemental friends and Gavin's friends parents to share in the delighful evening of sitting by the pool, drinking Margarita's and watching my 6 year old enjoy his swim party...and no clean up!
That night, on his very last night as a 5 year old, Gavin snuggled up on my shoulder and said "Do you like this snuggle or one of the others?"
I asked, "What are my other choices of snuggles?"
Gavin" The elbow snuggle, the tummy snuggle, or this is the arm snuggle"
We tried all three and settled on the good old arm snuggle. I hope we can keep trying them all! Always the original:)

Gavin and I were outside and I was watering. I accidently sprayed him a bit.

Gavin: Now I got all fixed up for Lily(my friend Rachel's 7 year old daughter) and you ruined it.


Me: Do you have a tiny crush on Lily or something?

Gavin: Well, I tell her I love her and she doesn't mind

Changes

Sunday night I was driving to pick up Jim. I just completely lost it and was screaming and crying. Sometimes I remember...she has died. It is always a shock.
It's like my body and mind forget that she's gone in order to carry on with my daily needs. This sense of normalcy is comforting in the moment but leads to desperate feelings of loss when I come face to face with the truth that she is gone.
I had a dream this morning that really sums it up. I fell asleep on the couch so I was in a half sleep sort of state while Gavin was watching Sesame Street. In my dream my Mom was far away and I was thinking that she might miss some event that was upcoming because she could not get back for it, I woke up confused. I was still processing my thoughts from my dream and as I was waking fully remembered that she is not on a trip far away but has died...forever. I thought to myself "She can't make it back for any events" and I was once again stunned by the shock.
In the book I am reading grief is referred to as a state of insanity, a manic depressive state that passes. I completely agree.

Two weeks tonight

At 2:08 am it will be two whole weeks.
There were so many moments I thought that death might be easier on you and on us in a way. I take that back now! Selfishly I wish you were still lying in a bed with your phone on your chest and I could call you. You would answer no matter what time and I could talk to you about sadness, frutrations, stories about the boys, worries about life, etc. I called you at least 4 times a week in the last years and every day as your illness took you to the end. Sometimes with not much to say, but "I'm sorry you're feeling so sick". Your voice was there and in times of crisis you became you again, even if for just a minute. I saved that message you left the day after my accident. It is nice to hear your voice. You were so sick...but here.
I know, through others voices, that I will be okay. I hear that I will not feel so empty forever. I am sad about that in a way because I want you to be with me and the constant memories(though painful) keep you closer.
I miss you, Mom.
My brother sang his song to her as she passed and at her funeral.
Forest Fagan~Blue Hillside

My Mothers Passing

In Sept of 2009 my Mothers CT scan showed that she was cancer free. She was elated and had gone back to her life of seeing clients, gardening and studying. She had moved back to Austin in the Spring, but came up for our children's birthdays and special events as she always had.
She had some Hernia's bothering her and related the stomach pain she started to feel(on 10/14) to them, she decided to have the hernia's repaired. She came up to Dallas for her surgery on Oct. 29th.
I dropped James off and headed to the hospital the morning of the the 29th. When I got there Dr. Tate was out and explaining that he had seen "visible signs of disease" and that to operate would not be wise. He stitched her up and sent her to the recovery area. I knew she would be devastated as it had only been one month since she was declared "cancer free".
Mom started Chemo and went back to Austin. Forest and Rayne were at her home to help her. She was weak and shaken but so ready for the fight. When she came back on November 22 she looked so sick. She was throwing up daily and feeling just as she had a year before. She came to James' birthday party and then went to Simons home.
Simon drove her to appt's and I met them there. She stayed with me the week of Dec. 14th-20th and her sister Gail was here. We went to see her Dr on the 15th and we were informed the Chemo was no longer working, hospice was offered. Gail and I were with her.
Mom was not ready to give up and chose to try a clinical trial at Mary Crowley, she felt elated when we went on Dec. 21st but we had concerns as they said it was not for efficacy but to determine symptoms. She started the treatment. Simon drove her down and I would come for lunch or meet them there to see Mom. Her brother James came to visit.
On Dec. 31 she came to my home for a week. I helped her take a real bath. She was very weak and had to go to bed after the bath from exhaustion.We had a family dinner on New Years Day, I made Ham and Black eyed peas. She claimed it was the best meal she'd ever had. We had planned to watch a movie and she had been really excited, but was just not feeling well enough to watch the movie. On Monday, she was determined to go to her support group at Baylor. She was so weak, she fell in the driveway. Even after the fall we went to the support group  and she talked positively about continuing her fight.
On 1/5 I took her back to Simon's. Later that night she was feeling really weak, running a fever and noticed a spot on her abdomen that was red. Simon and Missy drover her to the hospital. She was admitted that night and I visited her the next day. She was diagnosed with a perforated bowel and they tested her for sepsis(which was later confirmed). They put her on two strong antibiotics and Dilauded for the breakthrough pain(we decided this was the pain med to be on as she was chipper and morphine made her cranky).
When I walked in the door on Thursday morning, she was smiling and said "It's so good to see your face", she seemed so cheery I was a little concerned she was not in reality. When I went the next day she was still very happy and feeling well enough to get up and use the portable potty next to her. We talked about how she felt and she asked "does it seem like I'm in la-la land" to which I replied "well, kind of". She assured me she was not and that when she found out about the cancer she went through every worst case and had feelings about it so now she felt like she had already faced her fears for the possibility of death. She said she was not afraid to die. Her drainage tube for the infected area on her abdomen was operating as an ostomy but the Dr.'s seemed confused about it. She told me she had fallen backwards onto the bed. On Friday she fell onto the floor and laid there for several hours. She had bruises on her head and lower back and they did an Xray and CT scan. She was very shaken by the fall and this would become her focus.
Saturday and Sunday were good days. There were no major or life threatening events.She seemed very swollen but she believed it was from too much IV fluid(we now know her body was shutting down).
Monday evening I did not go to the hospital. I went to dinner with my kids and then home and fell asleep, I regret this now! On Tuesday morning my Aunt Veenie called me at 7am. She had called Mom and been told that there was a respiratory distress incident and the team was called. Mom was put on 100% Oxygen and her saturation levels were still below 80. She remained on 100% oxygen until she died. I called Mom and told her I'd be over soon. I called Simon and told him and he said he would go to the Hospital. I went to work until my pt'er arrived and then headed to the hospital. I should have gone straight to her.
Mom was upbeat and answering her phone. She ate a few bites and drank water. Her lips were chapped so I gave her my mint lip balm and the mint smell was pushed through the tubes into the room. We talked about how she was feeling and her plans, she wanted to go to Simons and get back on the study. The Dr's and nurses were very concerned about her oxygenation level, but surprised that Mom remained alert and upbeat. They could hear and see fluid in her lungs so the Dr. increased the lasix and potassium. Mom's arm was very swollen from the potassium and her veins were really hard to find. Simon and I went home around 9 and planned to see her the next day.
At 10:43 pm my phone rang. The person on the phone identified herself as the charge nurse, Christie. "Your mother is not doing well and we aren't sure how things will go in the next couple hours". I said "are you saying she might die". This was a reality that talking about cannot prepare a person for! She told me it was not looking good and that I should call my brothers. I called Simon and Forest and threw on clothes. I sobbed on the way to the hospital and ran to her room. When I went in she was not responding to the nurses but breathing. I shook her saying "Mom, Mom!!!" and rubbing her head. She opened her eyes, looked into mine and said "What's wrong, honey?". She looked so worried, she was every second my Mom until she died! I told her she wasn't breathing well. I was crying and she said "well, let's get me up, get me going". She was not leaving me that night. She told me, as if to make me less worried "those two are the most drama filled nurses here" and rolled her eyes. I think she was angry that they made us so scared. Simon arrived and she was still upset at the team. The resident told us we needed to really talk to the Dr about our plans. We were waiting to see the Dr.
The Dr's said they thought she had taken too much pain medication and with her already weak lungs it had caused her breathing to slow.I called Forest and told him she was better (we thought she was). We talked for a long time that night and she made the decision to take the IV's off. I was going to go home and sleep and Simon was going to stay but she told us she needed both of us, "you're my team" so Simon and I slept on the little fold out love seat together. She told us not to let anyone in(poor Christie got a talking to for coming in). I think we slept a total of less than 2 hours that night. She would say "let's take a nap" and then wake 1 hour later saying it was a great nap and be ready to talk. I said "let's take another one" but we never really did.
On Wednesday I took James to school at 7:30 and then took a quick shower and headed back. Simon never left. We talked to Mom all day.She talked to clients and Friends. Her Sister, Sister in law, and niece headed down. We told Forest to make plans to head up. Missy arrived about 12 and Mom napped while we ate lunch.She seemed to have a few episodes of almost convulsions, but the nurses said nothing. She took antibiotics,lasix and 1/2 her potassium pill by mouth. At one point I was siting by her bed and felt so sad. I started to cry and leaned down on the bed. I moved my face to her arm and then to her neck, I was sobbing. She rubbed my hair and told me it would be okay. She asked if I was taking care of myself, was I eating. She told me "you have to take care of yourself".She told me she was proud of me and that I would never be "just an ordinary girl".
The palliative care team came down and I asked for more information so the nurse brought Dr. Houck. She was our saving grace because she told us that Mom might not make the night and we were able to get people on the way. I would reach out to Dr. Houck again at 7 that night in desperation.
We had walked down to the family room so Mom could take a call. She asked us for silence. We were gone about 20 minutes. When we walked back into the room Mom's O2 mask was off and she was barely breathing. We called the nurses and started talking to her. We were worried that she would die before Forest arrived. We kept saying, "you can't sleep now, Forest is coming, we have things to talk about" We called Forest and he had just started on the way. We called my father who had planned to come over the next day and told him this might be his only chance to see her. She was happy that so many people were coming to see her, Simon told her "it's a party for you, Mom!" Her phone rang and she brightened up, it was her client.
After she spoke to that client we told her she may need to take a break form talking to clients. She said "yes. I probably should". A few minutes later she said "tiger woods, he made a mistake" Simon said "yes he did" Mom said " I was counseling him but had to suspend him for two weeks". We laughed, but she was serious.
Dr. Houck arrived and I asked if we could buy some time. She told us there was nothing to do to prolong her life. She was not having a reaction to anything they could correct and with her Oxygen levels, she was worried it might be only hours.
We kept talking to her and at one point she sat up and started reciting a poem called "Jenny kissed me". I thought it was a dream state but she said, "you will read that at my funeral" and started planning exactly how she wanted her funeral. She asked for paper and wrote the poem and then the order of the service. She put the paper down and said, "it's a work of art". We each had a part and she wanted no deviation.
Simon was standing beside her and started to cry. She was happy to see him expressing his emotions and told him he needed to cry and feel emotions.She held his hand.
She talked on the phone to Martha and then Jim. I called Gail and put Mom on the phone. It was hard to hear everything with her oxygen mask.
Mostly she smiled. She would look at us and smile and we each smiled back. At one point she looked at me and said "Do you think I'm going to die tonight?" I said "I don't know, Mom. Whenever you're ready".
Whenever she seemed to be drifting off I would say "Forest is coming" at one point she responded "You keep saying that, where is he?" and we all laughed. He was close.
Dad and Susie arrived. We were all with her talking. She was tired but we didn't want her to fall asleep.
Forest arrived and laid his head on her shoulder, he was crying. He said "How will I talk to you" and she responded "here" and pointed to his chest. She rubbed his hair. He brought her the red clover tea she asked for and she sipped a bit with her ice.
He sat down and started playing. Dad and Mom threw coins for an I-ching reading. She talked more about the funeral and then we left Forest to be with her alone.
When we went back in she was getting uncomfortable and asked for pain medication. They gave her a shot and then she asked to lay down. She wanted to rest.
We were going to leave her for a bit but Missy and I were still in the room and she started rolling from side to side. She almost fell out of the bed and Missy went to get Simon. I asked what she was doing and she said "just moving around" but I told her she was about to fall. Simon came in and her breathing started getting very shallow and gasping. We asked for Forest to come and I asked for Ativan to ease any anxiety. Dr. Houck had told me that sometimes O2 deprivation makes people just drift off in sleep but sometimes they become agitated, I did not want her to be scared. Forest and Dad came in. She was dying so I asked that it just be the three of us. We started saying "We love you Mom" over and over and touching her. We repeated how much we loved her as her breathing became more difficult. We sat the bed up and Forest tried to sit her up but it was too late. She looked surprised. The nurse came in and asked if we still wanted the shot. I said yes. I was so desperate that she not be scared. The nurse gave it, but Mom took her last breath seconds later. My body went numb at 2:08am. A part of it has been missing since.
We sobbed and held her.I asked for it to be just us again.
Forest sat down and started to play. We all cried as he played our Mother into the next life. Michael arrived and sobbed. He left work early but there was traffic so he missed seeing her.
We let everyone come into the room about an hour after her passing. The nurses and Dr's had tears in their eyes when they came in.

A little Poem by moi for those normally on my card list!

Just because we didn't
send a card to you this year
Doesn't mean we think any less of you,
in fact, we hold you in our hearts or think you dear!

The plain and simple truth of it,
the honesty, we fear;)
Is time just got away from us
This lovely(but busy) time of year.

So with profound love and joy,
And happiness we pray
Have a very blessed Christmas
and truly Happy Holiday!!!

With thoughts and prayers for
Peace, joy, and love!
Merry Christmas, Happy Hanukah,
Happy New Year and all of that stuff.
~Amy

Much love,
The Tate's
Amy, Jim, Michael, Andrew, James, and Gavin

Umm, Mommy...

...those underwear are really too small.

TMI to follow.

I was half naked in the kitchen(my belief is that it is my house and I can be half naked in my house so this happens often). I am not damaging my children...I am helping them to understand that very few women look like the Victoria Secret models and that is GREAT! (I would not mind being perfectly toned like those models but come on people I've had 4 babies and ...this is it :) )
I wear all sorts of undies. Some happen to be hanky panky thongs, and this is what was on my bum today.

James "Mommy, I found the remote and Um, those underwear really are too small for you"
Mommy "Some underwear are supposed to be this way"
James "Well they are pretty small"
Mommy "OK James, they are small"

We're all about the undie education here.

Left out the MRI results

There was just too much to write in the last post and life is buss. Sorry this amazing news is late!
James was born with a lymphatic malformation previously called a cystic hygroma. He was part of a study for OK432 over the summer. James had another MRI a couple weeks ago.
We drove to Houston yesterday to see Dr. Edmonds for a follow up. We got the most amazing news...after 6 years(they found the mass during a sonogram while I was 28 weeks pregnant) of learning about Lymphatic malformations and 10 ENT's(with varying treatmant plans) James MRI shows NO sign of the mass!!! He had the OK432 injections twice this summer.
We were gearing up for a very dangerous surgery for the last 5 years...thankfully we found Dr. Bauer in Dallas who referred us to Dr. Edmonds last year. I cannot say enough about Dr. Edmonds. He is so caring and kind! We are thankful that we found him and learned surgery is not the only option and other sclerosing agents can have issues. James would have likely had paralysis and a huge scar...and now he is all better!
Dr. Edmonds says that he has not seen a recurrance in any child who has responed this well to treatment! We will go once a year for many years to come for a follow up MRI and results, but feel so good about the prognosis!
James definately has his smile back!
You can read more in previous posts on my blog.

Differerences

James is old enough to understand that he looks different right now. Last night he was brushing his teeth and I noticed him looking at himself in the mirror. His right neck is very swollen and he looks very disfigured on that side. His sweet chiselled jaw line is no longer there.
Today we went to the grocery store and I must admit I was concerned that people would notice his differences. I am most concerned that he will notice someone noticing. Nothing like that happened, it was business as usual.
When we got home we were unloading groceries and I was making dinner.
James: "Mom why do I have to have this big place on my neck"
Me: " The medicine they put in to heal the pocket makes it swell. There is an infection so your body will heal it up"
James: "what's an infection"
Me: "it means you have an illness in your neck"
James: " I wish I didn't have to have a place"
Mommy" "It's because you are a very special boy. When you were born your neck was swollen and I knew you were special the minute I saw you. Then it went away and it will go away again"
James(starting to cry): "But my smile is different when I have this"
Me: "your smile is always the same to me, James"

I am crying now, but I did not as I said it. I hope his smile can be the same to him again very soon!

The Dr. said the swelling should start to go down after 10-14 days. The fever, swelling, and pain are WNL but still so unpleasant to see him go through. Jim and I are praying every minute that this was truly the best choice!

Sad:(

I am beyond exhausted. This week has been very tiring, but last night put me over the edge. I did not sleep for even 5 minutes.
James has been in some pain, but mostly if the spot ws touched. Yesterday his neck got really swollen and it was very painful. He couldn't even give hugs without crying and when Daddy tried to kiss his neck, he cried for 5 minutes. It is heartbreaking!
Last night his neck swelled up more and is about the size of a baseball. He cried all night long even on tylenol and then motrin. They are calling in Tylenol with codeine. He cannot get calm enough to fall asleep so I know it really hurts.
I feel so sad. He was perfectly healthy and his mass was hard to see for most people. I am questioning my decision to do this and also really reliving the emotions I had when he was so difigured as a baby.

Life as we know it

The surgery went great. Tiny little incisions so just the surgitape.
James did great but had a little scare in recovery while stil under. His airway was compromised and they had to prop rolled blankets under him to get his position right. After that he did really well. Swelling and tenderness as expected, but no fever yet. We were at Children's in Houston and they were fantastic! They kept us overnight for observation to make sure the swelling wasn't going to cause more breathing issues, but were able to get out Wednesday and just got back home Wed night. The Dr. said day 3 is usually the worst.We go back in 2 weeks for folllow up, blood work, and another EKG then 4 weeks later for the next procedure.
Things are pretty much back to normal, today(day 3). James has tenderness but can play and eat and sleep as usual. The hospital was great but still pretty scary for him. He was so sad that he could not go home and a little groggy from anesthesia so extra emotional. He just kept saying "I want to go back to the hotel" and tearing up.

My tiny movie stars...

Okay....not movie stars, but in the video
James is wearing a green vest and Gavin is in a l/s t-shirt They had fun on this shoot.
Debi Deberry is the voice of Jimmy Nuetron.

Happiest Day video

James treatment

At 28 weeks pregnant while getting a routine US, a mass was discovered on our sweet baby James' neck. It measured 4cmx4cm and was thought to be a fluid filled mass. WE were uncertain of what the outcome would be at that point and saw specialists, had an MRI fo James through my belly, and had weekly US until delivery. I cried and prayed every day in hopes that he would be able to eat and breathe at birth, wishing that there was no mass! I really rarely think about how terrified I was today, but this week I've been remembering.
At birth the mass was very evident and disfiguring. James was beautiful. I remember feeling very protective and sad, but he was so perfect. I just wanted everyone else to see the perfect boy I saw. I prayed and touched him. I massaged the spot and rubbed my hands together and layed them on his neck to use "energy". Whatever worked was my motto!! I remember going to the store and a well meaning lady saying "oh, what happened to him", she probably thought something bit him or he was having an allergic reaction:( It was so hard for me to say, he was born with a mass...and watch her face as she realized this was a birth defect, not a horrible reaction. I felt bad for her, but also angry that my sweet baby didn't look perfect to her. Not angry at her, just at the world in general.
Miraculously at around 1 month the mass seemed to be shrinking. It really looked smaller to our family. I know, in retrosepct, James was just growing. As James grew the mass stayed the same size and seemed to move inward. It became less detectable(looking back at picture it is still very much there, but it looked so much smaller than when his whole right side was hugely swollen at birth) and today is hard to see unless you know he has it. I can see it clearly and feel it and continue to wish it would just go away, but I know that is unlikely. I also know through MRI's that it has not shrunk, it is just the same size that my sweet tiny boy was born with and now he is much bigger.
We've spent the last 5 years trying to find the right Dr. A Dr who would be our partner, really explain our options, and treat James kindly. Dr. Bauer was perfect for us. We found him and loved him and this is one of his specialties! We hoped he could be the Dr to help us, but he referred us to Dr. Edmonds in Houston.

We made the trip to Houston today for our 1 hour appt w/ Dr. Edmonds. (He is doing the study on lymphatic malformations and OK432 that we hoped James could qualify for instead of the very scary surgery that would likely impact his trigeminal nerve). Good news~he qualifies because his mass is macrocystic rather than microcystic for the most part and we feel good about the Dr. and his explanation of the treatment. We also feel really good we did not do surgery because it is so risky and according to Dr. Edmonds you almost always end up with some damage to the facial nerve.
Bad news~we'll be spending alot of time in Houston. The treatment will most likely take 2-3 procedures and we'll spend 1-2 nights in the hospital the first trip. If all goes well we may not have to stay overnight the second and any subsequent visits.
The procedures causes swelling and infection so James will have a fever for about a week after each procedure. He will likely have irritation(pain:() in his neck where the mass is during this time because the bacteria will cause an infection to hopefully cause the body to block and shrink the mass. We are hopefull that these will be the only side effects.
We have to treat the mass because chances of severe swelling and or infection that requires emergent care are likely without treatment. We want to take care of him before school starts so now is the best time. Treatments should start next month.

More Little Lessons

In the quiet of my mind I know that screaming at a cherub faced almost 3 year old is NOT healthy. Even when he has sharpied the back of your passenger seat in your far overpriced, gas guzzling, SUV. Screaming at your 3 year old will make you feel guilty in just a few minutes and in no way matches your parenting philosophies. Why, you ask, did I do it? Because I need some major professional help...(that's my husbands line)...it's most likely from exhaustion because I am constantly chasing my sweet almost 3 year old and darling 4.5 year old and I coughed all night long for the 3rd night in a row.
I did feel guily 5 seconds after screaming:(
Some thoughts are deep...like cherish every minute because they'll be moving out sooner than you can imagine.
Some thoughts are not deep...like why can't you just color on paper?