2 updates, 1 day (note: today's blog was done yesterday, but not posted until today due to a computer glitch).
Off to the CathLab we went. No expectations of anything alarming. Reassured by the doctor, echo looks great, no reason for concern. . . numbers should be great.
Promised Tray that the annoying catheter in his neck would be gone and he'd only have an IV or 2 in his hands
Promised Tray that today was the day we were going to our new private room on the floor.
Returned from CathLab with a new fancy triple lumen central line in his neck. Promise 1 broken.
Restarted on Milrinone again. Must stay in CICU for 3 more days at least. Promise 2 broken.
The almighty numbers that rule this place of the very tiny to the very large dictate everything. Trayvon's pressures in his heart were not where they need to be. His heart is working too hard at this time. A hard working heart can result in a tired heart and that is a definite no-no. So we will continue to help it out. I've been reassured that this is normal. That this is what they anticipate happening, but typically the echo shows the issue before catheterization. Not so for Tray.
22 is Trayvon's "wedge" pressure, goal is 10.
18 is the right atrium pressure, goal is 8.
1 pump to 4 pumps in less than 2 hours.
1, 2 lumen catheter to 1, 3 lumen catheter
0 IV's, to 2 IV's in his hand
10 meds to 14 meds.
Med levels too high, doses reduced.
Med levels too low, doses increased.
We we reassess that beautiful heart in a week and see if the changes have improved the numbers. Those wonderful/awful numbers we rely on to determine every step of the journey.
In the mean time I had to brace for the disappointment that was going to be coming. Tray was sad. His neck was in agony from the catheterization. He had the IV in his neck that meant he still couldn't sleep on his right side, his favorite side. After some morphine and conversation and reassuring that we are still going to the floor "once a bed is open for him " uh um (fudge there), he settled in and resigned to his new fate. Add in 2 dressing changes to the 3 chest tubes and he was done being messed with.
But, as I have said, 2 steps forward, 1 step back. More numbers, but as long as the forwards outnumber the backs we are A OK. I shared some fries from Wendy's with him and a bit of Cherry Coke, big hit!! LOL Excited to find that he can order Turkey sandwiches at will and a snack pack arrived just for him. Plus, the computer cord that was needed so badly, arrived in the mail today, so he was back up and running on his game. . . much happier now.
Till next big update.
Tuesday, February 21, 2012
By the Numbers. . .
I found that going by the numbers is a fantastic way to capture our journey here thus far.
7 days ago - we got a phone call that changed everything for our son.
50 units of blood later, Trayvon was finally somewhat stable.
16 IV pumps used to manage the vast number of drugs and fluids needed to keep him alive until his precious new heart and his body became friends.
3 different breathing machines later until lungs are strong enough to handle basic breathing.
3 chest tubes to drain the fluid accumulating in his lungs.
1 large IV in his jugular vein to administor dozens of meds.
1 large IV in the artery of his right wrist to monitor blood pressures from within.
1st of 5 doses of powerful anti-rejection drugs to completely supress Trayvon's body from recognizing its new gift.
5 days ago - Trayvon is answering questions and begging for food while still on the vent.
30/20 are blood pressures you do not want to see on your child's monitor, ever.
16 breaths per minute the ventilator breaths for him.
4 days ago - Trayvon is off of all breathing assistance, 3 machines leave the room.
10 IV pumps now in use.
80/40 is our new normal blood pressure.
3mcg/kg/min is the rate of the Dopamine needed to keep that new magic number so stable.
3 Days ago - Trayvon is sitting in a chair.
5 IV pumps now in use.
100/50 is our new normal blood pressure without the dopamine.
1st time in 18 months, Trayvon is oxygen free.
2 days ago - Trayvon leaves room for the first time.
4 IV pumps in use.
450cc of drainage from his chest tube.
6th echo done since admission.
4 chambered heart beating beautifully!
1 day ago - Trayvon takes his first steps (3 feet)
3 IV pumps in use.
1st smile since just before surgery.
3 days of no eating.
Today - Trayvon walks around entire CICU without assistance.
Off Milrinone for the first time in 5 months.
1 pump left on IV pole.
3 chest tubes continue to drain heavily.
7th echo done since admission.
4 chamber heart continues to beat beatifully!
3 meals eaten with no complaints of tummy pain.
2 Tylenol is all that's needed to keep him comfy.
So there it is. The transplant process thus far and the amazing way, numbers simplify just how far Trayvon has come in just 7 short days.
Tomorrow is our first biopsy. The first of hundreds over the course of his life. The biopsy will be our first glimpse into the heart and how happy it is in its new home. Trayvon's immune system has been destroyed in a specific way (killed off his t-cells) with the goal of allowing some to grow back slowly over time. Without t-cells, Trayvon is susceptable to virtually every germ. He will wear a mask when in public. He will not return to school. Purell will be our new best friend.
But, by the Numbers we will go and continue to be amazed at how far he has come in such an incredibly little amount of time.
 |
| Trayvon excitedly waiting for the air ambulance to go to NYC. |
50 units of blood later, Trayvon was finally somewhat stable.
16 IV pumps used to manage the vast number of drugs and fluids needed to keep him alive until his precious new heart and his body became friends.
3 different breathing machines later until lungs are strong enough to handle basic breathing.
3 chest tubes to drain the fluid accumulating in his lungs.
1 large IV in his jugular vein to administor dozens of meds.
1 large IV in the artery of his right wrist to monitor blood pressures from within.
1st of 5 doses of powerful anti-rejection drugs to completely supress Trayvon's body from recognizing its new gift.
5 days ago - Trayvon is answering questions and begging for food while still on the vent.
30/20 are blood pressures you do not want to see on your child's monitor, ever.
16 breaths per minute the ventilator breaths for him.
4 days ago - Trayvon is off of all breathing assistance, 3 machines leave the room.
10 IV pumps now in use.
80/40 is our new normal blood pressure.
3mcg/kg/min is the rate of the Dopamine needed to keep that new magic number so stable.
3 Days ago - Trayvon is sitting in a chair.
5 IV pumps now in use.
100/50 is our new normal blood pressure without the dopamine.
1st time in 18 months, Trayvon is oxygen free.
2 days ago - Trayvon leaves room for the first time.
4 IV pumps in use.
450cc of drainage from his chest tube.
6th echo done since admission.
4 chambered heart beating beautifully!
1 day ago - Trayvon takes his first steps (3 feet)
3 IV pumps in use.
1st smile since just before surgery.
3 days of no eating.
Today - Trayvon walks around entire CICU without assistance.
Off Milrinone for the first time in 5 months.
1 pump left on IV pole.
3 chest tubes continue to drain heavily.
7th echo done since admission.
4 chamber heart continues to beat beatifully!
3 meals eaten with no complaints of tummy pain.
So there it is. The transplant process thus far and the amazing way, numbers simplify just how far Trayvon has come in just 7 short days.
Tomorrow is our first biopsy. The first of hundreds over the course of his life. The biopsy will be our first glimpse into the heart and how happy it is in its new home. Trayvon's immune system has been destroyed in a specific way (killed off his t-cells) with the goal of allowing some to grow back slowly over time. Without t-cells, Trayvon is susceptable to virtually every germ. He will wear a mask when in public. He will not return to school. Purell will be our new best friend.
But, by the Numbers we will go and continue to be amazed at how far he has come in such an incredibly little amount of time.
Saturday, February 18, 2012
The Roller Coaster Ride. . .
Anyone that has spent any time in the hospital for anything knows a couple of things:
1. You spend all your time hurrying up, just to wait.
2. Hospital time is different than any other form of time in existence. It can move at the speed of light, and it can move at the speed of stop. Some days you feel like you've been here for weeks and others, for hours.
3. Sleep is optional. The days of doling out sleeping pills to patients is over and now, you have to beg plead an borrow to get any sort of sleep time assistance. It makes no difference if the patient has been awake all night, thus the caregiver has as well.
4. There are smooth patches and rough patches every day. The size of the patches may change, but something good and something bad will happen every day in a hospital. How you handle them is the key
So, we are at day 5 post transplant. Trayvon's recovery is nothing short of amazing. If only he realized it. He is depressed. He is frustrated and he is tired. Tubes extend from his body and are draining stuff he refuses to look at. The precious IV in his neck which has saved countless blood tests, has tape on it that is bothering him. He new heart beats so hard it scares him. He is, as he so aptly expresses, "overwhelmed". The realization of what he was to endure with the process of transplant is foreign to him and now he wants to know why we didn't tell him about all of this. He's mad.
My heart breaks as he asks me these questions. I'm sad. When he has a "temper tantrum" about something, I become frustrated as well. When he has pain, I'm mad. We're both feeling the sting of reality today and though it doesn't belittle the progress or the awesomness of the gift of life, it's hard.
He only wants to sleep now. In the day. To avoid everything. But then he's up all night and therefore, so am I.
Today we are going to "make him" get out of bed and interact, play games and express his feelings on paper. He is fighting the idea with all he has. He's depressed.
We will be visiting with a counselor today or tomorrow to work through some of these emotions with Tray. I will have to work through mine on my own.
I miss my family, my husband, my children, our life, my happy go-lucky boy. I know, this is temporary. I don't need pep talks about the other side, the light at the end of the tunnel, the good will outweigh the bad, etc, etc. I know all of this. It doesn't help with today.
So, day 5 and the emotional roller coaster has dipped a bit. I'm sure tomorrow it will be something different. For that I'm happy.
Til next time,
Renee
1. You spend all your time hurrying up, just to wait.
2. Hospital time is different than any other form of time in existence. It can move at the speed of light, and it can move at the speed of stop. Some days you feel like you've been here for weeks and others, for hours.
3. Sleep is optional. The days of doling out sleeping pills to patients is over and now, you have to beg plead an borrow to get any sort of sleep time assistance. It makes no difference if the patient has been awake all night, thus the caregiver has as well.
4. There are smooth patches and rough patches every day. The size of the patches may change, but something good and something bad will happen every day in a hospital. How you handle them is the key
So, we are at day 5 post transplant. Trayvon's recovery is nothing short of amazing. If only he realized it. He is depressed. He is frustrated and he is tired. Tubes extend from his body and are draining stuff he refuses to look at. The precious IV in his neck which has saved countless blood tests, has tape on it that is bothering him. He new heart beats so hard it scares him. He is, as he so aptly expresses, "overwhelmed". The realization of what he was to endure with the process of transplant is foreign to him and now he wants to know why we didn't tell him about all of this. He's mad.
My heart breaks as he asks me these questions. I'm sad. When he has a "temper tantrum" about something, I become frustrated as well. When he has pain, I'm mad. We're both feeling the sting of reality today and though it doesn't belittle the progress or the awesomness of the gift of life, it's hard.
He only wants to sleep now. In the day. To avoid everything. But then he's up all night and therefore, so am I.
Today we are going to "make him" get out of bed and interact, play games and express his feelings on paper. He is fighting the idea with all he has. He's depressed.
We will be visiting with a counselor today or tomorrow to work through some of these emotions with Tray. I will have to work through mine on my own.
I miss my family, my husband, my children, our life, my happy go-lucky boy. I know, this is temporary. I don't need pep talks about the other side, the light at the end of the tunnel, the good will outweigh the bad, etc, etc. I know all of this. It doesn't help with today.
So, day 5 and the emotional roller coaster has dipped a bit. I'm sure tomorrow it will be something different. For that I'm happy.
Til next time,
Renee
Wednesday, February 15, 2012
A Valentines Day Miracle
Sitting in Church, listening to a lovely sermon by our Pastor as a thought drifted through my brain. . . "I wonder if I would feel the vibration of my phone in my pocket if a call came through." Then, the phone vibrated. I felt it. I looked at it and my heart fell about 4 feet to my toes. It read "blocked", which could only mean one thing on a Sunday morning. . . it was the call we were waiting for.
After getting the info from the NP on the other end of the line and pushing the thoughts of all of the unfolded laundry I needed to tackle before leaving for who knows how long, I calmly went to the sanctuary and informed Trayvon that his call had come and we needed to leave a bit early to get some things together. I was remarkably calm for such a momentous moment. Because the last time the call came, I was anything but calm. . . I was actually quite hysterical and looking back, quite a sight to behold I suspect. This time though, I felt peaceful.
We left Church after gathering Sergio, Trayvon, Nettie and Marriela. We went to the pharmacy to get some meds that were waiting, then to the store to get some allergy meds for Joshua and some diaper cream and hair supplies for Sergio and Marriela. I unloaded them from the van, and after confirming with all of the kids that there was a good chance that this was the night Trayvon would get his new heart, went to work getting things around the house done.
There was some speculation that the donor, that wonderful human that gave the greatest gifts at the moment of their family's greatest saddness, would also be able to donate his lungs. However, Trayvon's team felt strongly that the lungs were not ideal for transplantation and we just needed to hear the "all clear" from the donor's hospital. So we waited for the final confirmation that we were a "go". In that time, I gave a hair cut, 2 baths, did one head of hair, folded and put away 4 baskets of laundry, prepared two med bins, started a crock pot of chicken wings for dinner, made all the beds and helped Cody and Marriela fill out all of their Valentienes Day cards.
At 5:00 we heard that it was going to happen and now we needed to start the arrangements for transportation. Despite several reassurances that the transportation was all set. . . it was anything but. I made several panicked calls to Medicaid transportation, as they were the ones responsible for making the arrangements. The woman told me I needed to call back Monday through Friday during normal business hours. WHAT!! I remained calm (have no idea how) and explained that the heart transplant couldn't wait until they opened the next morning at 8:00 am. Could I please speak with a supervisor. Phew, the supervisor knew what I was talking about. However, he didn't know how to activate the orders. . . calling someone else. Phew, that person knew how to activate the orders. . . but the air ambulance they had approved, wasn't available immediately. . . WHAT!! Calling someone else. FINALLY, we received word that all was worked out. We were to leave Syracuse at 9:00pm and land in NJ at 10:00 catch an ambulance and be at the hospital by 11:00. Best laid plans never work out. . . it snowed for the 3rd time the entire winter, heavily, near Pittsburgh, PA where our flight was coming from, grounding them for over an hour. In end, we left Syracuse at 10:15, landed in NJ at 11:00pm and took one hell of an ambulance ride from NJ to New York Presbyterian Hospital where we were happily recieved by the CICU staff at 11:30pm, a full hour and a half late.
At 1:30am I found myself standing next to my son's operating table trying to reassure him that this is the moment we've been waiting for and all would be well. They started the meds and his final words, "What if I pass away?" came out of his mouth and then he was out, with a look of sheer panic on his poor little face. I left that room in a million different peices. He was getting the gift of a lifetime and yet his departing worry was one I refused to acknowledge. In the end he left me to wait with that very horror imprinted on my heart and brain. With nothing more to do, most everyone asleep, I went back to his room, laid down and slept for 4 hours. At 5:19, the doctor awoke me. . . "His heart is in, beating well and he is doing great." Less than 4 hours after saying good-bye, he was already laying on that table with a brand new heart.
7:30am he finally arrives in his room, I'm running on adrenaline at this point. He looks good. I was so relieved. His heart rate was 130, which is normal for a normal heart, but his old heart would never have been able to handle that. . . it was wonderful.
Since then, we've been on the roller coaster of recovery, as anyone knows about ICU's. There is typically 2 steps back and 1 step forward. Sometimes, it's 3 steps back and 2 steps forward, but eventually, in most cases, the forward steps outnumber the backward steps you find yourself staring at your miracle thinking. . . how did you do that?!
There are no words to express how much love I have for a family and a person I don't know. Their day of sorrow was our day of rejoicing, such a mixed bag of emotions. One day, I hope to express to them the immensity of their gift. Let them see just what they've done and how much their loved one still lives on. Tray will not be shy with his gift. He wants to run, play, live, love and he will do all with the same enthusiasm he did before his transplant, only this time it will be without limitations, oxygen, IV meds running 24/7, IV lines hanging out all over and medications that ruled his life. He will make sure that he makes that donor live through him.
So, the day before Valentines Day, our son recieved a true gift of love. . . a new heart. The story continues.
After getting the info from the NP on the other end of the line and pushing the thoughts of all of the unfolded laundry I needed to tackle before leaving for who knows how long, I calmly went to the sanctuary and informed Trayvon that his call had come and we needed to leave a bit early to get some things together. I was remarkably calm for such a momentous moment. Because the last time the call came, I was anything but calm. . . I was actually quite hysterical and looking back, quite a sight to behold I suspect. This time though, I felt peaceful.
We left Church after gathering Sergio, Trayvon, Nettie and Marriela. We went to the pharmacy to get some meds that were waiting, then to the store to get some allergy meds for Joshua and some diaper cream and hair supplies for Sergio and Marriela. I unloaded them from the van, and after confirming with all of the kids that there was a good chance that this was the night Trayvon would get his new heart, went to work getting things around the house done.
There was some speculation that the donor, that wonderful human that gave the greatest gifts at the moment of their family's greatest saddness, would also be able to donate his lungs. However, Trayvon's team felt strongly that the lungs were not ideal for transplantation and we just needed to hear the "all clear" from the donor's hospital. So we waited for the final confirmation that we were a "go". In that time, I gave a hair cut, 2 baths, did one head of hair, folded and put away 4 baskets of laundry, prepared two med bins, started a crock pot of chicken wings for dinner, made all the beds and helped Cody and Marriela fill out all of their Valentienes Day cards.
At 5:00 we heard that it was going to happen and now we needed to start the arrangements for transportation. Despite several reassurances that the transportation was all set. . . it was anything but. I made several panicked calls to Medicaid transportation, as they were the ones responsible for making the arrangements. The woman told me I needed to call back Monday through Friday during normal business hours. WHAT!! I remained calm (have no idea how) and explained that the heart transplant couldn't wait until they opened the next morning at 8:00 am. Could I please speak with a supervisor. Phew, the supervisor knew what I was talking about. However, he didn't know how to activate the orders. . . calling someone else. Phew, that person knew how to activate the orders. . . but the air ambulance they had approved, wasn't available immediately. . . WHAT!! Calling someone else. FINALLY, we received word that all was worked out. We were to leave Syracuse at 9:00pm and land in NJ at 10:00 catch an ambulance and be at the hospital by 11:00. Best laid plans never work out. . . it snowed for the 3rd time the entire winter, heavily, near Pittsburgh, PA where our flight was coming from, grounding them for over an hour. In end, we left Syracuse at 10:15, landed in NJ at 11:00pm and took one hell of an ambulance ride from NJ to New York Presbyterian Hospital where we were happily recieved by the CICU staff at 11:30pm, a full hour and a half late.
At 1:30am I found myself standing next to my son's operating table trying to reassure him that this is the moment we've been waiting for and all would be well. They started the meds and his final words, "What if I pass away?" came out of his mouth and then he was out, with a look of sheer panic on his poor little face. I left that room in a million different peices. He was getting the gift of a lifetime and yet his departing worry was one I refused to acknowledge. In the end he left me to wait with that very horror imprinted on my heart and brain. With nothing more to do, most everyone asleep, I went back to his room, laid down and slept for 4 hours. At 5:19, the doctor awoke me. . . "His heart is in, beating well and he is doing great." Less than 4 hours after saying good-bye, he was already laying on that table with a brand new heart.
7:30am he finally arrives in his room, I'm running on adrenaline at this point. He looks good. I was so relieved. His heart rate was 130, which is normal for a normal heart, but his old heart would never have been able to handle that. . . it was wonderful.
Since then, we've been on the roller coaster of recovery, as anyone knows about ICU's. There is typically 2 steps back and 1 step forward. Sometimes, it's 3 steps back and 2 steps forward, but eventually, in most cases, the forward steps outnumber the backward steps you find yourself staring at your miracle thinking. . . how did you do that?!
There are no words to express how much love I have for a family and a person I don't know. Their day of sorrow was our day of rejoicing, such a mixed bag of emotions. One day, I hope to express to them the immensity of their gift. Let them see just what they've done and how much their loved one still lives on. Tray will not be shy with his gift. He wants to run, play, live, love and he will do all with the same enthusiasm he did before his transplant, only this time it will be without limitations, oxygen, IV meds running 24/7, IV lines hanging out all over and medications that ruled his life. He will make sure that he makes that donor live through him.
So, the day before Valentines Day, our son recieved a true gift of love. . . a new heart. The story continues.
Saturday, February 4, 2012
Making Room for Memories. . .
As a self proclaimed amnesiac, I find myself trying to go back and recall those lost memories that seem to have alluded me. It's amazing, as I sat here to write them down, just how stuffed full my head is, with apparently useless information, and just how unfull it is of the things I need to write of. What a dilemma. Do I purge some of the useless stuff, and thus fill your poor heads with it, in an effort to regain some access to those lost recesses of my mind, or do I just leave it alone and try to pull out the "stuff" through all of the other "stuff". Hmmm. . . I say, PURGE!
So here goes, as a fore warning, some of this info did appear useful at some point, so maybe, just maybe, you'll find it interesting and useful too.
1. WhiteOut, does not "wash" off, nor does any known kitchen or medical product remove it without a great deal of friction. . .and as a side note, children do not like friction. So, don't let your child paint themselves from head to toe in WhiteOut.
2. You should never try to carry hot grease across a kitchen in a Rubbermaid disposable bowl while wearing running shoes with vented toes. It hurts like the dickens and the stain on the shoe is everlasting.
3. Children can fall down a flight of stairs, look like they've killed themselves, only to surface with a bent pinky finger (numerous times apparently in life), an adult, can only fall once and inflict numerous injuries to themselves while looking like they never touched a step on the way down. Akin to the "bumbles bounce" analogy in Rudolph, "children bounce", adults don't.
4. Don't teach children the phrase, "Shut your pie hole." unless you are properly prepared to face the teacher to whom your child has used said phrase.
5. Don't put a fake tattoo on a child's butt cheek in an effort to conceal it from his teachers. The child, thinking it is an awesome tattoo, will drop his pants happily on his school bus to share his artwork and earn himself a 2 day stint of school bus suspension.
6. Using the "leash" on a child is fine. Unless, said child is black, you're white and the place is Disney World on Martin Luther King Jr. Day. Though, very needed at the time due to said child's inability to refrain from literally attacking the characters and running without a single thought of losing us, it was not received well throughout the park. I may need to keep that piece of knowledge, now that I've thought of it. Hmmm
Ok, that may only be six things, but it's enough to make a start on extracting a few deeply placed memories.
Where to begin with recessed memories is hard to determine. But, as I sit here and scan through photo after photo of my life and the amazing, silly, loving and sometimes downright terrifying, I have just realized something. . . I do remember. I do remember what I feel I need to remember. I see a photo and I am transported back to that moment. What a wonderful realization. Maybe I'm not a true amnesiac after all.
As I sat here typing this, I've had 3 children yell, "I love you." I've made breakfast for 5 kids, hugged my husband and gave him a kiss as he walked out the door, folded 3 baskets of laundry and now sit and help my son play a game on the Ipad. I am feeling loved, needed and despite not being able to recall some random memory or event, I know that I have many stuck in this crazy head of mine. So I'm going to just sit back today and look through the couple of thousands of photos and soak in all those "lost" memories. There'll be some tears, lots of laughing and some moments of quiet reflection, but I will revel in the fact that I'm not suffering from amnesia after all.
So here goes, as a fore warning, some of this info did appear useful at some point, so maybe, just maybe, you'll find it interesting and useful too.
1. WhiteOut, does not "wash" off, nor does any known kitchen or medical product remove it without a great deal of friction. . .and as a side note, children do not like friction. So, don't let your child paint themselves from head to toe in WhiteOut.
2. You should never try to carry hot grease across a kitchen in a Rubbermaid disposable bowl while wearing running shoes with vented toes. It hurts like the dickens and the stain on the shoe is everlasting.
3. Children can fall down a flight of stairs, look like they've killed themselves, only to surface with a bent pinky finger (numerous times apparently in life), an adult, can only fall once and inflict numerous injuries to themselves while looking like they never touched a step on the way down. Akin to the "bumbles bounce" analogy in Rudolph, "children bounce", adults don't.
4. Don't teach children the phrase, "Shut your pie hole." unless you are properly prepared to face the teacher to whom your child has used said phrase.
5. Don't put a fake tattoo on a child's butt cheek in an effort to conceal it from his teachers. The child, thinking it is an awesome tattoo, will drop his pants happily on his school bus to share his artwork and earn himself a 2 day stint of school bus suspension.
6. Using the "leash" on a child is fine. Unless, said child is black, you're white and the place is Disney World on Martin Luther King Jr. Day. Though, very needed at the time due to said child's inability to refrain from literally attacking the characters and running without a single thought of losing us, it was not received well throughout the park. I may need to keep that piece of knowledge, now that I've thought of it. Hmmm
Ok, that may only be six things, but it's enough to make a start on extracting a few deeply placed memories.
Where to begin with recessed memories is hard to determine. But, as I sit here and scan through photo after photo of my life and the amazing, silly, loving and sometimes downright terrifying, I have just realized something. . . I do remember. I do remember what I feel I need to remember. I see a photo and I am transported back to that moment. What a wonderful realization. Maybe I'm not a true amnesiac after all.
 |
| My Dad's last family outing with us. Miss him so much. |
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| Sergio's first visit to our home, he was slightly larger that he is now. |
 |
| Cody, thinking he was funny spraying me with one of our favorite "toys", 60cc syringes filled with water. Awesome water guns! |
 |
| Daddy hanging out with his boys on the steps that don't exist anymore. |
 |
| My sweet Nettie. |
As I sat here typing this, I've had 3 children yell, "I love you." I've made breakfast for 5 kids, hugged my husband and gave him a kiss as he walked out the door, folded 3 baskets of laundry and now sit and help my son play a game on the Ipad. I am feeling loved, needed and despite not being able to recall some random memory or event, I know that I have many stuck in this crazy head of mine. So I'm going to just sit back today and look through the couple of thousands of photos and soak in all those "lost" memories. There'll be some tears, lots of laughing and some moments of quiet reflection, but I will revel in the fact that I'm not suffering from amnesia after all.
Wednesday, January 25, 2012
The Rantings of an Amnesiac. . .
I know a blog is something you are suppose to keep up with far more often than I am. I have so many stories, so many things in our lives to share, and then I sit to type and it's all gone. . . and I mean gone. I know life has been challenging in the past few years, I can see it in the pictures I have in my files, I can see the lines hanging from my kids, the helmet on my son's head, the daily tantrums, the non-stop medicines, the constant appointments, etc, etc. I know this is not the "normal" life that most lead, yet it is soooo normal to all of us. It doesn't feel hard, or challenging at this very moment, because despite all of the "stuff", all is good. I have developed a strange ability, liken to childbirth, to forget those times that ripped my heart out or caused me great pain.
I can honestly walk into the hospital for each admission and face it like it's just another day rather than relive the horror that has often manifested itself within those walls. I can say hi to the staff and mean it, I can move in and out of those doors as easy as if it were a hotel and leave the crud behind. Most of the time I love this ability of mine. It certainly makes the day to day grind easier and doesn't allow me to focus on the often uncertain future of my children. It allows me to live in the moment and not in the past or the future.
BUT. . .I hate it as well. I find that I don't retain the good memories either. I can't remember all of the funny things my kids say, despite laughing for hours about them. I can't remember holding my son for the first time in my arms. Well, maybe that's not entirely true. . . I can remember the acts, I just don't have the emotional tie to those memories. I need pictures to often conjure up a memory and then that memory is just that, a snapshot of the very photo I needed to recall it. I often recant to Peter my frustrations with this, as he has the amazing ability to remember everything from sights, to sounds, and even smells. Oh how I long for that with some of my memories, and then on the other hand, I would also have to remember the sights, sounds and smells of so many bad things as well. Ask me a date or or time when something happened to anyone of my children and I'll whip it off without a problem... ask me the date of my best friends birthday or how old my parents are or a date when Peter and I went someplace together and had a great time, and there is a blank. I often joke with the kids and tell them, "Please be careful with how much you talk to me, because there is a finite amount of room in my head and the important stuff, like your birthday, might slip right out." My fear is, this is actually true. I remember the dates and times of diagnosis'. The exact weights of kids and every test and scan any one of the kids have had. But, struggle with the more abstract and enjoyable things.
I am confident God has granted me this amnesia for a reason. To be a good mom. I couldn't possibly relive the traumas over and over and still be able to breath each day, so he allows them to slip away. I can't be picky and ask for Him to select which memories stay, so I find myself coming to the realization, I need to start writing them down. I need to start ensuring that all of the amazing, wonderful things are recorded right along with the crappy and downright scary things. It'll be messy and probably not all that coherent to the rest of the world, but they're my memories and stories so I'm not worried about it at all.
So it begins, soon anyways, the rantings of an amnesiac.
Take Care and God Bless,
Renee
I can honestly walk into the hospital for each admission and face it like it's just another day rather than relive the horror that has often manifested itself within those walls. I can say hi to the staff and mean it, I can move in and out of those doors as easy as if it were a hotel and leave the crud behind. Most of the time I love this ability of mine. It certainly makes the day to day grind easier and doesn't allow me to focus on the often uncertain future of my children. It allows me to live in the moment and not in the past or the future.
BUT. . .I hate it as well. I find that I don't retain the good memories either. I can't remember all of the funny things my kids say, despite laughing for hours about them. I can't remember holding my son for the first time in my arms. Well, maybe that's not entirely true. . . I can remember the acts, I just don't have the emotional tie to those memories. I need pictures to often conjure up a memory and then that memory is just that, a snapshot of the very photo I needed to recall it. I often recant to Peter my frustrations with this, as he has the amazing ability to remember everything from sights, to sounds, and even smells. Oh how I long for that with some of my memories, and then on the other hand, I would also have to remember the sights, sounds and smells of so many bad things as well. Ask me a date or or time when something happened to anyone of my children and I'll whip it off without a problem... ask me the date of my best friends birthday or how old my parents are or a date when Peter and I went someplace together and had a great time, and there is a blank. I often joke with the kids and tell them, "Please be careful with how much you talk to me, because there is a finite amount of room in my head and the important stuff, like your birthday, might slip right out." My fear is, this is actually true. I remember the dates and times of diagnosis'. The exact weights of kids and every test and scan any one of the kids have had. But, struggle with the more abstract and enjoyable things.
I am confident God has granted me this amnesia for a reason. To be a good mom. I couldn't possibly relive the traumas over and over and still be able to breath each day, so he allows them to slip away. I can't be picky and ask for Him to select which memories stay, so I find myself coming to the realization, I need to start writing them down. I need to start ensuring that all of the amazing, wonderful things are recorded right along with the crappy and downright scary things. It'll be messy and probably not all that coherent to the rest of the world, but they're my memories and stories so I'm not worried about it at all.
So it begins, soon anyways, the rantings of an amnesiac.
Take Care and God Bless,
Renee
Saturday, January 7, 2012
Love. . .
I was horrified and honored to read the agonizing eulogy of a young mother who, along with her husband, lost all three of their precious daughters, as well as her mother and father, in a Christmas Day fire. I can not imagine the scene that day, as she was dragged away by the fire fighters, watching in horror as her life was consumed by unforgiving and relentless flames. As I read, I thought, how would I deal with such a situation, such a monumental ripping apart of my being, as my children and I are separated for the rest of this earthly life. How does a parent come to grips with such a concept, especially when there was no warning, no way to prepare for such an event. . . and on a day of joy such as Christmas none-the-less. Thinking about it actually causes me enormous anxiety. . . yet, there is no guarantee any of us will escape such a life altering event. No on on this earth is exempt from pain and suffering. . . it is what it is. This is a dark world, a cruel world and one that is unforgiving in its desire to try and take from us all that we have and even who we are are.
But, there is one thing and only one thing that stands between us and that black abyss. It's love.
Love can and will conquer all. Love is an emotion that can drive a person to unbelievable acts of kindness and heroism, and it's an emotion that can drive a person to unthinkable acts of desperation and destruction. We are all capable of love, even the most vile of humans can feel love. . . the key is the ability to receive and reciprocate without the anticipation of something in return. As soon as you throw in the need for reciprocation, you have cheapened the exchange. . . you have not loved as God has attempted to teach us to love. Look around, see the news, read the paper, listen to people talk of one terrible thing after another. A mother kills her five children and then herself. A father steals a son from the loving arms of a mother and hides him away to never see him again, murders, stealing identities from the young and old, the list goes on and on. Walk through the corridors of any hospital, see the looks of desperation on the faces of the young and old who are abandoned by those that supposedly loved them. The abuse of "loving" is going on all the time. Yet, there are so many MORE examples of real love all around us, all the time, and it's our job to find them and learn from them. . . that's what this eulogy did for me today.
Today, I learned that through unspeakable loss one CAN speak of the one thing no one can take from them, love. I learned that through the eyes of a child and the love of a child's hear,t one can go on. I learned that as a person, who has and is experiencing the enormity of love and all it entails, it can bring you through situations you would have never thought you could endure.
As a parent, I have signed orders saying "Do Not Resuscitate" my child when they eventually stop breathing or their heart fails to continue beating. I have sat there and listened to doctors say, "There is just nothing more we can do except wait for nature to take its course." I have sat there and listened to the hushed whispers of the doctors, nurses, and support staff during rounds as they come up with a gentle way to tell you that the fight is coming to a close. I have planned the final hours of more than one of my children in my minds eye. The final bath, the final dressing, the final goodbye and the final physical touch . . . I have only had to carry out these plans once for a child I was to call my daughter. Even through all of that pain, Love and only Love was the thing that carries you through. I know, I am loved, by many. I also know I am loved by my Creator, God. I know that I have loved wholly and honestly and though it often hurts more than to not love, I don't regret it one iota. I have been granted more than my share of immunities from one of the greatest losses a parent can experience, the loss of their child. But, I have also witnessed more good-byes than I can remember of others, as they exchange their final farewells. From every one of these experiences, LOVE is the predominant emotion for virtually all of them. The love they felt, the love they continue to feel despite the inability for their child to reciprocate it any longer.
So today I feel blessed. I feel like I have been given another opportunity to learn life's greatest lesson. My heart can not fathom the loss of these 3 little girls and the unbearable grief the parents must feel. But, through their loss and their mother's love put into words. . . their legacy will go on. I know they have taught me and I'm sure they have taught many others. The very thing their precious mother has prayed to happen, has happened. Thank You to Lily, Sarah and Grace, you have, indeed, touched my life.
Love can and will conquer all. Love is an emotion that can drive a person to unbelievable acts of kindness and heroism, and it's an emotion that can drive a person to unthinkable acts of desperation and destruction. We are all capable of love, even the most vile of humans can feel love. . . the key is the ability to receive and reciprocate without the anticipation of something in return. As soon as you throw in the need for reciprocation, you have cheapened the exchange. . . you have not loved as God has attempted to teach us to love. Look around, see the news, read the paper, listen to people talk of one terrible thing after another. A mother kills her five children and then herself. A father steals a son from the loving arms of a mother and hides him away to never see him again, murders, stealing identities from the young and old, the list goes on and on. Walk through the corridors of any hospital, see the looks of desperation on the faces of the young and old who are abandoned by those that supposedly loved them. The abuse of "loving" is going on all the time. Yet, there are so many MORE examples of real love all around us, all the time, and it's our job to find them and learn from them. . . that's what this eulogy did for me today.
Today, I learned that through unspeakable loss one CAN speak of the one thing no one can take from them, love. I learned that through the eyes of a child and the love of a child's hear,t one can go on. I learned that as a person, who has and is experiencing the enormity of love and all it entails, it can bring you through situations you would have never thought you could endure.
As a parent, I have signed orders saying "Do Not Resuscitate" my child when they eventually stop breathing or their heart fails to continue beating. I have sat there and listened to doctors say, "There is just nothing more we can do except wait for nature to take its course." I have sat there and listened to the hushed whispers of the doctors, nurses, and support staff during rounds as they come up with a gentle way to tell you that the fight is coming to a close. I have planned the final hours of more than one of my children in my minds eye. The final bath, the final dressing, the final goodbye and the final physical touch . . . I have only had to carry out these plans once for a child I was to call my daughter. Even through all of that pain, Love and only Love was the thing that carries you through. I know, I am loved, by many. I also know I am loved by my Creator, God. I know that I have loved wholly and honestly and though it often hurts more than to not love, I don't regret it one iota. I have been granted more than my share of immunities from one of the greatest losses a parent can experience, the loss of their child. But, I have also witnessed more good-byes than I can remember of others, as they exchange their final farewells. From every one of these experiences, LOVE is the predominant emotion for virtually all of them. The love they felt, the love they continue to feel despite the inability for their child to reciprocate it any longer.
So today I feel blessed. I feel like I have been given another opportunity to learn life's greatest lesson. My heart can not fathom the loss of these 3 little girls and the unbearable grief the parents must feel. But, through their loss and their mother's love put into words. . . their legacy will go on. I know they have taught me and I'm sure they have taught many others. The very thing their precious mother has prayed to happen, has happened. Thank You to Lily, Sarah and Grace, you have, indeed, touched my life.
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