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Mommy's Journal
July, 2004 We found out on this day , by fetal echo-cardiogram, that you would be born with a Severe Congenital Heart Defect. The diagnoses; you had no septum (wall which seperates the 2 ventricles and 2 atriums, so instead of 4 chambres you had one), so basically you would have half of a functionning heart. We would have to wait till you were born to see if your right and/or left ventricle would grow. If the right grew and left didn’t this would mean a heart transplant, if the left grew and not the right, you would have an operation called Fontan. If both grew you would still have to get the Fontan. Your inferior vena cava is also none existant at the bottom of your heart (where it should normally be), but instead is hooked directly to the superior vena cava. For the remainder we would have to wait till your birth to find out.
We were given the choice to terminate or continue the pregnancy, and your daddy and I didn’t even have to say anything, we knew our choice was to give you a chance. You are our gift from God.
November 13th, 2004 Hi Sean, I decided to start a little journal of your birth and the days following for you later on. You were born on a Tuesday, November 9th, 2004 at 4:40 pm,weighing 7lbs 9onces and 20 inches long (3k420, 50.5 cm). I pulled you out myself, you looked up at me with those beautiful eyes. I gave you a kiss, yes even though you were all gooy, who cares I’d waited so long to see you and kiss you. Was a good labour, lasted 10hrs and I pushed only 20 minutes. Daddy cut the umbilical cord and then you were taken by the neonatal specialist. You didn’t even cry, not even when you were born. The nurses then wrapped you up and I was able to hold you for maybe a minute, just time to get a picture, because they had to bring you NICU. You were/are the most beautiful little being I’d even put my eyes on. Blond hair, eyebrows and lashes, blue eyes. Handsome as could be. Grand-maman Monique, Granny Elsie and Auntie Cindy were there to see you. They saw you for a few seconds in the hallway, before wheeling you off to NICU. You are a strong baby, you didn’t need to be hooked up on oxygen, you were breathing all on you own. You were transferred to Intermediate Intensive Care on November 11th, 2004. No one but daddy and I have been allowed to see you, hospital rules. For safety purposes, to prevent any germs, bacteria, infections, to protect all you little ones in NICU. Even so, daddy sneaked grand-maman in and she got to see you for a couple of minutes. She was on cloud nine. You didn’t eat (weren’t allowed) for the first 24 hours. But on November, 10th I gave you your first bottle and had a chance to hold and rock you for the first time. It was the most wonderful moment, I can’t even explain how it felt, holding you my precious angel, the most extraordinary gift I’ve ever received. Your daddy and I have been staying at the hospital since your birth. We have a room on the 5th floor, wing 8, room #5822. Where we come and relax, while you sleep. Your daddy or I (or both) are there to change and feed you and in Intermediate Care we get to hold you and rock you anytime we want. You were put under a lamp on the 11th for 24 hours, because of Jaundisse, but this morning they’ve put you back under it for another 24 hours. So while you are under this lamp, we cannot bundle you up, but you are nice and warm under this lamp, you only wear a diaper and have a mask over your eyes. The nurses remove the mask for feedings, but we can’t hold you for more than ½ hour, because you have to go back under the lamp. The cardiologists and surgeon (Dre Vobecky) are all meeting on Monday, November 15th @ 4:00pm to discuss an action plan. They will then be meeting with your daddy and I afterwards to discuss what is to follow. Right now we are expecting you to have an operation within the enxt couple of weeks, to band your pulmonary artery, which is shunting too much blood to your lungs. Today : 7 lbs 4 (3k292)Love you Sweetheart, MamanXOXO
November 18th, 2004 Hi Sweetheart, well your daddy and I are waiting for you to undergo your MRI, which is scheduled for 2pm. You lost your umbilical cord during the night of Monday – Tuesday. I starting giving you your bath as of Tuesday. You’re a wiggly little thing, so cute. Monday you gave us quit the scare your heart rate went up to 285, during the morning shift change. You now have a tuve on your head to inject a special medication in case this happens again. Fortunately your heart rate came down on its own. We met with Dr Vandoesburg (cardiologist) Tuesday evening about your surgery next week. The doctors say that you are lucky in your bad luck of having so many malforamations with your heart, because whatever is hooked wrong or not will actually help with the Fontan Procedure. Next week they are proceeding with the banding of the pulmonary artery. You are such a good baby. You only cry when you are hungry, need a birp or have an unclean diaper. You smile all the time (some people say it’s gas, I say your smiling), it looks like you are dreaming of angels, when you’re sleeping. I love you so much, you are my God given Angel Love always, Maman XOXOXOXOXO
Something I noticed, you were born in room #10, transferred to NICU in bed #4410, and you are now in Intermediate Care room #10, labour lasted 10hrs10min. MRI has been done. This morning they tried 4 times to get the lock back on your head, and got it on the 4th try. Once in for your MRI, the lock had broken out of the vein again, and they got it in on the 3rd try. Your veins are so tiny and hard to find, and you don’t have that many usable left. They burst when the nurses try to get one and your blood is so thick it makes it even harder. My heart breaks into a million pieces everytime the nurses try, because I can see you in pain and all I want to do is take all the pain for myself. You are such a strong baby you amaze me. Love always, Maman XOXOXOXOXOX
November 19th, 2004 What a day you had, it started with a Tacycardia attack (heart rate at 280) around 12:33 at night, for about 30 secondes. They didn't administer any medication to bring it down, because you recovered on your own. In the morning they tried irrigating your IV lock on her head and the vein was blocked, so they removed it. But since you need one in case of any other Tacycardia attacks the head nurse (Julie) decided to ask permission to send you to get a pick-line (Catheter IV) put in by radiology, which was approved. Your daddy and I had just finished lunch, at the hospital restaurant, when my name was called over the hospital intercom. We both turned white and rushed to Security to call. The nurse advised us that they just took you down to radiolody an hour earlier than expected. You wouldn't believe all the scenarios that went through our heads, before getting a hold of the nurse. We met you there only one parent was allowed in, so I stayed with you the whole time. Your daddy wanted you to be with your mommy, and he's not very good with seeing them poke and prode you. It's not easier for me, but I need to be by your side. So, after 4 tries they get a vein, FINALLY. You've had two very exhausting days, you are such a strong baby. Today you hardly had the strength to cry, I wish so badly that I could take all of this happening to you away. Your daddy is with Kaitlyn (your big sister, my step-daughter) tonight at home, till Sunday. Kaitlyn finally saw some pictures of you. She asks about you everyday, and can't wait to meet her little brother. Love you with all my heart, Maman xoxoxoxo
November 20th, 2004 Allo mon amour, today you had a great day, you were rested, awake and all vital signs were stable. After each feeding I've been holding you and rocking you for an hour. I have a hard time putting you down and leaving you there, at one end of the hospital and me at the other end. Love You, Maman xxxxxxxxx
November 23rd, 2004 Hi sweetheart, it's 7:40 pm and I'm at your bedside in the ICU. Yes, you had your first operation today at 14 days old. We found out late last night that you'd be having your pulmonary artery banding done today. So, this morning daddy arrived at 7 am and we had you blessed. We both rocked you till 8:30 am then you were taken to the 3rd floor operating room #9. Operation went well the pre-op took a bit longer than expected, because they had a hard time finding a vein. Your operation started at 10:30 am and we got to see you at 1:30pm. You look so defenseless, you have wires everywhere and tubes, there's one foot I can actually hold on to. You started moving your eyes around 6:30 pm, what a relief. Your daddy and I rotate every 2 hours, to be with you. We do not leave your side unless the doctors ask us to leave the room. I wish I could take all the pain for myself, I feel so powerless sitting here, but at least I get to touch and talk to you. Love you dearly with all my heart, Maman xxxxxxxx
November 24th, 2004 Hi Angel, today you're pretty much stable, except you aren't urinating enough. They took out the thorax drainage tube and your scare is healing nicely. You are definately an Angel sent from God.
God grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
The Wisdom to know the difference.
Tonight your pulse starting fluctuating alot and went down as low as 68. The arythmia keeps your rate up and down. the doctor's plugged the pace maker on at 149 to stabalize your rate for the night, all other vital signs are stable. Good night my angel, Love Always, Maman xxxxxxxx
November 25, 2005 My angel, today they removed your pace maker for most of the day, but put it back on for the night. Your heart rate is still fluctuating alot. They also reduced your oxygen, so you are now at 25, and have started some breathing on your own. You are such a trooper. No morphine for 5 1/2 hours, but your pain seemed to be intensifying, so I asked the nurse if you could have a bit. Took 5 minutes and you were relaxed. It is almost unbearable to see you cringing in pain, trying to cry, but no sound coming out because of the breathing tube. This was the first time tonight that I'd seen you like this and it broke my heart into a million pieces. I wish so badly that I could take your pain away. Your daddy sent me to the room to rest, guess I must look tired. Can't really feel anything right now. All I want to do is stay by your side. You hold on tomy finger and don't let go, just as I can't let go of you. It's been 16 days, since you were born and I've only slept at th house 2 nights. Those 2 nights were so painful, that ever since, I've been sleeping at the hospital. At least just being in the same building and I can go see you 24/7 makes a world of difference. Your daddy want me to go home and rest, but I will not go home until you come with us, which should be within the next 2 weeks. You are my hero! Je t'aime de tout mon coeur mon ange, Maman xoxoxoxox
November 26, 2004 Allo mon amour, I realized in a dream last night, that your bed # 3223 in ICU equals 10 when you add all the #'s together. You had a good day today, stable, no bad news. You also had your first visitors (grand-maman et grand-papa). they were so happy to see you. They were extremely relieved to see you finally and see how well you are doing. Grand-maman is staying with me at Cacho and your daddy had gone home to rest (he goes back to work on Monday). Love you mon Coco, Maman xxxxxxxx
November 27, 2004 Good news your oxygen is down to 18, your feeding tube had been increased to 10cc's per hour. Looks like they will be removing your breathing tube tomorrow. Your daddy is visiting with you right now and grand-maman and I are in the waiting room. You were very awake this morning, the moste awake I've seen you since your operation, wonderful feeling to see you so awake. Love always, Maman xxxxxx
November 28th, 2004 Hi sweetheart, wow what a day. You were extubated this morning, yahoo ! What a relief, everything went well and you remained stable. You had visitor's today, Grand-da and Auntie Cindy came by, and visited while your daddy was here. Grand-maman and I went home to do some laundry, but came right back. I got to hold you at noon today. What a joyous time. Your daddy held you afterwards and fed you a bottle. The surgeon prefers to wait a few days before I breast feed you again,so they can monitor how much you are eating. Grand-maman is rocking you right now, as I'm writing these thoughts. This is the very first time she gets to hold you and she can't keep her eyes off of you. Today is a wonderful day ! You are alive and here and a part of our lives. Love you dearly,
Maman xxxxxxxxxx
November29th, 2004
My little hero, found out today by Dre Vobecky that you are leaving ICU and moving up to the 6th floor. This is where a parent can cohabitate with their child. Yahoo, I get to sleep right next to you. You are such an inspiration, my angel, 5 days after a heart surgery, all but 3 tubes removed, you are definately my hero. The room is nice, 2 patients per room. There's a fold out bed for me besdie the crib. It could be a blanket on the floor for all I care, I'm just extatic that I can sleep in the same room, without haveing nursers/doctors, moving me out of the way all the time. You are in room #6614. Ther patients here are all heart and/or transplant patients. This is the next step to going home. They show us how to administer medecin and keep an eye on any signs of heart failure, in your case. Grand-papa came to pickup grand-maman tonight, and saw your for the first time, without all your tubes. You still have a small feeding tube and a pick-line in your arm, "This is nothing compared to the 30+ machines you were hooked up to". God Bless you my love, love always, Maman xxxxxxxx
November 30th, 2004
Hi my little hero, what a wonderful feeling it was to wake up beside you and see your beautiful face. When I went to bed last night, I couldn't help but look at you, I should say "stare at you from my bed." Today you had a lung x-ray and a Nuclear Medicine exam. The nuclear medicine exam was for your liver and spleen. They inject a liquid in your veins, which goes to your liver and spleen. You are lying on your back, strapped (machine looks like a MRI machine) and this huge machine turns around you. At one point it was an inche from your nose, and you, as usual, did it like a pro, you laid and slept through the whole thing. I was allowed to attend, so I sat beside you in case you'd wake up. You are stable, but have a difficult time bottle feeding. It tires you out very quickly, even if I make the hole in the suce bigger. You are not a cryer. You just like looking around, you are so curious, you also sleep very well. Love always, maman xxxxxxxx
December 1, 2004 Allo mon Coco d'Amour, today is the first snow fall, and Dre Vobecky thinks we'll be home by the end of the week. She removed your pick-line and now all you have left is your feeding tube. I'm watching you sleep as I write these words, you are so beautiful, you look like an angel. Daddy and I can't wait to bring you home. We can't wait for you to see your room, you'll see it's very quiet at home compared to the hospital. You'll finally have some peace and quiet for the first time since your birth. Daddy and Kaitlyn will be decorating this weekend to start putting some Christmas spirit in the house. I rocked and snuggled you all day today, and you slept in my arms. You looked so cozy and me well I was on cloud 9. Good night sweetheart, sweet dreams, Je t'aime Mamanxxxxx
December 5th, 2004 Hi sweetheart sorry I haven't written in a while, the good news is we came home last Thursday (Dec 2nd). So, it's been pretty busy, getting into a new routine, with your home coming. It's been terrific having you home, finally. You've had your 1st start to your 1st everything. Daddy showed you around your new home and I showed you your room, yes your own room. No sharing with other babies and tonnes of monitors ringing. I brought you into the house, since I left with you in my belly. You met your big sister Kaitlyn on Friday, she held you right away. You have a nurse that comes once a week to weigh you, take your saturation level, and vital signs.Got to go you just woke up and from what I can tell you're starving. Love always, maman xxxxxxxx
February 17, 2005
Hi my sweetheart, sorry I haven't written in so long. You had your first Christmas, with Grand-maman, Grand-papa, oncle Dominic, your sister Kaitlyn and I. We didn't go to Granny & Grand-da's because there were too many people and children, it would have been to dangerous for your to catch something. You received so many gifts we couldn't see you amoungst them. Daddy proposed Christmas Eve and we'll you know I said yes. We've celebrated my birthday and Valentine's Day with you, it was great having you there. All the firsts of everything with you, so very, very special. There is one thing I want to say and I want you to know and never forget is how much I love your. You have fulfilled my life more than you'll ever know. You smile a lot, have discovered your hands and try toput both fists in your mouth. Curious, you don't want to miss a thing, you love watching your mobile and especially smile and enjoy the blue elephant with white dots. I hung a blue butterfly over the change table and you should see the smiles you get when we twirl it. You've started talking, will goo and gaa and you're and excellent imitator. When we put our hands together, stick out our tongue or go oh, you'll do the same thing. I started you on cereal this week and you seem to be enjoying them. Love you dearly maman xxxx
February 25, 2005
Hi Sean, my sweetheart, I just finished breast feeding you and you fell asleep like an angel in my arms. You're down for another 3 hours or so till your next feeding. Oups, I can hear you stirring a bit. Ok, I'm back. Well yesterday grand-maman and I went to Sainte-Justine's with you for your Cardiologist's appointment. You're so tired after, it always takes approx. 5 to 6 hours, yesterday was a 6 hour day. Dr Vandoesburg has put you on the waiting list for a Catherter and other tests to get prepared for your upcoming operation. He found that you were more blueish than usual, and your saturation, was only at 72. So, in the next week or 2 we'll have to bring you in for that. The Glenn procedure which they'll be doing is coming up soon. While I was rocking you tonight, I couldn't put you down. I wish I could hold you forever, and protect you from any pain. But I know that without this operation you can not survive. It's part of His plan, God has sent you on a special journey from the day you were conceived. Whatever His is plan is for you, it's a blessing and a God send to have you. When you crack one of those wonderful smiles, gums and all, my heart just melts. So, we will go through this together, as a family. You will never be alone. He is watching over you, as well as your daddy and I. Sleep my little angel, I love you dearly, I have to get some sleep to before your next feeding. Love always Maman xxxxx
February 28, 05
Hi Angel, you're sleeping in your vibrating chair. Yesterday afternoon, when we went for our nap, in mommy/daddy's bed, I was holding you and it struck me, you're getting operated soon. I was imagining when we are there in the operating waiting are, holding you and having to hand you over, and see you go down the corridor to the operating room, my stomach just knotted up. God will surely send me the strength to hand you over, but I'm sure (most likely), I'm going to fall to little pieces. You're waking up from your nap, I'll write again later, Love You, maman xxxxx
March 2nd, 2005
Hi sweetheart, sorry I didn't get back to you any sooner, you might be a tiny being but you keep me quite busy. but I enjoy every minute of it. Yesterday we got the call from Sainte-Justine for your pre-operation exams. We'll be taking you in next Tuesday, March 8th, for 7:30 am to get prepared for your Catheter, heart diagnostic tests. You'll be sedated and it takes about 2 hours. They should start around 10:30. We have to be there early to get your IV put in and othere tests. You'll be staying overnight on the 6th floor, where one of us can sleep beside your crib. I'll be staying with you and we couldn't get a room for daddy at Cachou so he'll come home and be back 1st thing in the morning. So we are expecting your surgery for the Glenn, whould be in the next month or so. Something I'm not looking forward to, but then again it's a necessity for your life and it will help you with your oxygenated blood circulation, which will make you rosier instead of blueish. I know it's a must I just wich you didn't have to go through the pain afterwards. Love you dearly my sweetheart, maman xxxxxxxx
March 8th, 2005
..... more journal entries to be added between these 2 dates, because especially the months of May, June and beginning of July are extremely hard to type out, these are the hardest months of our lives, with them bringing us to the end of Sean's earthly life. Still to painfully raw to type out.
July 8th, 2005 It is with great pain and grief that I share with you the loss of our son Sean. After his long battle, we had to let him go. It was no longer fair to ask anymore of Sean. He lead an extremely happy life for the 5 months he was out of the hospital and has taught and touched many, many lives, even lives he has not met. And during his time in the hospital he was always cared and loved for, especially by the angels who work at Ste-Justine's Hospital. Speaking for myself, he has taught me nconditional love, courage, strength, how to let go of the ones you love and now he will teach me how to move on, because that's what he would desire for everyone. Sean had coded the night before at 7:15 pm, they ressessatated him with heart massage and 3 shocks, he remained in very bad shape with no chance of recovery. Everyone took care of him during the night (while John, and grand-maman and I got a bit of sleep) and till the last minute. He came in this world by me and left this world peacefully in my arms at 11:09 am Friday (July 8th). They placed him in my arms and I got to rock him for awhile, he was not awake, it had been a month since I had had the chance to hold him, and he was taken then off the respirator, where I continued to rock him and John was holding his tiny hand, and tell him how much I loved him. He was not alone, never alone. The whole family, doctor's and some nurses were there in the ICU room. They then asked us to leave the room for a bit, they then removed all the tubes and lines and bathed him, wrapped him in a blanket, cleaned the room, placed him on his bed surrounded by his toys and beautiful music. I returned and rocked him for a while and nurses and doctor's came one by one. He touched so many lives, I have the utmost respect for this little human being, whom I'm so proud to all my son. He will be put to rest in the Garden of Angels, a section reserved solely for children, where he can rest with them, no more needles, poking and proding, he can just rest and look over us.
August 8th, 2005 Allo mon Coco d'amour, it's a month today that you took your last breath in my arms. I'm so grateful that I had the strength to hold you during your last hour. I miss you as much or maybe even more today as I did a month ago. But I know you are here with me in my heart every single day. Maman went out today to purchase something for you, no not diapers, toys, clothes or anything like that, today I went to purchase your stone marker. It's marble and bronze, with a brass vase, so I can put fresh flowers for you and that way you can play with the little butterflies that visit you. The stone is rectangular with a brass vase in the top middle, on the left side I asked that a brass teddy bear be put and on the right side a brass little angel boy kneeling and praying. It will only be laid in the fall as will the grass. And it will say :
Sean Joseph Lockhart
Our little Braveheart
November 9, 2004 - July 8, 2005
I never thought that at the age of 37 I would be buying such a thing, especially for my baby, my only child, but daddy had taken care of the lot purchase, and in the healing process I wanted/needed to be part of the funeral arrangements to, so I did this part on my own. While I was there I also purchased a lot for daddy and I to be near you. Since, you are in the Garden of Angels, where only little babies are resting, I got ours right across from where you are resting. It'll be just like when you were sleeping in your room and daddy and I were in our room, we'll be near each other, but for eternity. My love for you will be eternal and even though my arms ache to hold you every single day, I know that you are at peace, with no more pain. You and God give me the strength when I think I have none left. I still don't smile much, but sometimes I catch myself smiling when I think of you. Laughter, well you know how much and how loud maman would laugh, haven't done much of that in the last month, but have a few times. I know it will take time. TIME : Tears In My Eyes So right now time for me is mostly "Tears In My Eyes", but eventually will be "Things I Might Enjoy". FEAR is something that I do not let my days be haunted by : "Forget Everything And Run" I'd need to "Face Everything And Recover" and that's how I'm learning to heal it's not by getting over this, your death, the loss of the most important person in my life, it's by going through it. My pain is real as is my love for you, the unconditional love that I gave and received, by having you in my life. Je t'aime mon petit Coco d'amour, Maman xxxxxx
September 20th, 2005
Something I shared with my Angel Mom friends today, about what a wonderful son we have.
Thank you so much for your kind words. Sean, like other heart babies or cancer children, or any life threatening illnesses go through so much. Even when he was bed ridden for the last 2 months in ICU, he still had that spark in his eyes, trying to tell me something. He
didn't smile during this time, too drugged up and too many drainage
tubes, IV's and 2 open heart surgeries. I don't know where these
babies get the strength to continue. I think of the little boy
Chance who doesn't have his mommy by his side and my heart is just broken to bits. I think Sean may have held on for so long, because I was there every single day. There were only 3 nights where I didn't sleep in the hospital, the first night was 2 days after his surgery, but John stayed with Sean, the nurses convinced me to go home and get some rest. And Sean was doing so well, had his
breathing tube out, almost no IV's left, only one drainage tube from
his chest, he had even eaten during the day, so I said ok. That
night at 3am the telephone rang and it was John calling to tell me
that Sean had taken a turn for the worst. Let me tell you I don't
know how I drove to the hospital, and you know you think about those phone calls when the phone rings in the middle of the night, and it ends up being a wrong number, but this was it! I couldn't leave his side ever again. Even if I wasn't sleeping in his room, at least I was in the same building. I often think of him, when he was in the hospital laying there, I would stroke his hair and sing to him and
he'd close his eyes gently and relax, or giving him eskimo kisses,
he'd do the same thing, I could see how relaxed he would become.
The nurses would sing along with me, or some days I would put
classical baby CD's in and put the radio between the 2 cribs (only 2
patients per room) in the room, for the other baby to hear the
music. Sean went through, I think it was 12 roomates during his
stay, which the majority were babies, all but one made it. Sean was
there for the little baby girl who died of pnemonia (4 months young)
and 2 days later Sean died. It was his time, and he gave us more
than I ever expected, we almost lost him 5 times during this time
and that's without counting the first month of his life, where there
were complications also. He is a trooper and a Champion. I am so
proud to be his mommy (maman) and to have had such a little big man in our lives. I try to grasp for the strength that my son had to
take in every moment of life, but I'm not there yet. But I'm
trying. He was born on 11/09/04 and died at 11:09 on July 8th,05
which I think is a sign somehow. I also noticed other things, like
his wide blue-grey eye's(which when you looked into them you could
tell he had an old soul), he had wide eyes to capture every minute
he could in this world, he was born with long fingers, to grasp onto
life (which he did like a champion) and had big feet, to climb those
uphill battles, loosing his last. I am so grateful and proud of my
son, words can't even describe it. I truly believe that each soul
chooses their parents, and John and I were priviledged enough to
have been blessed and chosen to be Sean's parents. Because he knew that in his brief life he would receive what he came here for,
unconditional love, caring and nuturing. I knew, in my motherly
gutt, that he was living on borrowed time, so I noticed all the
little things that parents don't usually notice and took note of
everything in my journal (which I'm unable to finish on his site,
because the last few months are still too raw to type out, and after
typing his first month in NICU, ICU, what he went through there
seemed like a breeze compared to the last 2 months of hell). Wow,
I've been going on and on about my little Braveheart, guess I needed to share this morning. Thank so much for letting me share my Champion with you all. All you Angel Mom's and your families are in my thoughts and prayers every night and day. You are a blessing to me !
Thank you all, wishing you all a gentle day with yourselves,
{{{{{{{{HUGS}}}}}}}}}}}
Mylène - Maman to Angel Sean
http://sean-lockhart.memory-of.com/about.aspx
"Some people only dream of angels, I held one in my arms"
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2 months have passed since you've been gone
Angel Wings
At the ending of the day when I'm weary
After a waterfall of tears have all been cried
And I'm feeling like the skies will always be dreary
Nothing's there to fill the emptiness inside.
I lay my head upon my favorite pillow
Just close my eyes to block all the sorrow
wonderin' where I'll ever find the strength inside-
to do it all again- tomorrow.
And then I feel it-
inside me.
I feel it-
around me.
Like a gentle hand just wiped away the tears-
and held me close to wash away my fears.
It's you, my angel, watching over me.
And I know no matter what tomorrow brings,
You'll be here to wrap me in your angel wings-
your lovin' angel wings.
The sun comes up, it's time to face the day
and I think that things are going to be all right-
But as the day wears on my nerves begin to fray-
I feel the hollowness that creeps in every night.
And like clockwork all the tears begin to fall
As I look at my reflection in the glass-
the eyes looking back at me make me feel small-
and I ask, my God, how long's this going to last?
And then I feel it-
inside me.
I feel it-
around me.
Like a gentle hand just wiped away the tears-
and held me close to wash away my fears.
It's you, my angel watching over me.
And I know no matter what tomorrow brings,
You'll be here to wrap me in your angel wings-
your lovin' angel wings.
Thank God for your angel wings
Je t'aime mon Coco d'amour pour toujours, maman xxx
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You would have been 10 months old today - it's been 9 weeks since you've been gone
Allo mon Coco d'amour, today you would have been 10 months old, it's been 9 weeks since you've been, and it's not getting any easier. Today maman brought you some flowers and cried the whole time. I miss you terribly, you are always in my thoughts. I'm not sure how to live this new life that has been given to me, how to live with the gutt wrenching pain, everyday. I guess someday I'll just get used to living with this pain. I feel like I've aged 20 years, since you've been gone. I put a smile on for others, I fake it. Laughing is still not part of my life yet, sure I'll laugh a bit, a fake one, for others. But the real smile and laughing died the day you died. I hope/know someday they will come back, but for now faking it is the best I can do. How do I go on with my life without you in it, I don't know. I manage to get through the day, only to go to bed and wish that you'd come and get me. And I cry myself to sleep, missing you more and more each day. I also have mixed emotions about the last 2 months of your life, where you faught so hard and went through hell in ICU, only to die in the end. But now you have a perfect heart, which enables you to do everything you want, you will never know anymore pain or suffering. You deserve it and so much more. You are forever a part of my heart and soul. Love you eternally. Maman xxxxxxxxxxxxxxxxxx
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you turned 11 months yesterday, and it's been 3months since you've been gone
Allo mon Coco d'amour, yesterday you would have been 11 months old, and Friday was 3 months when you became an angel in my arms. I miss you more and more each day, but I try and find comfort in knowing that you are at peace, healthier than you would have ever been on earth, no more hospitals for you my sweetheart now you receive only the best of what our souls are meant to receive, Love, peace, serenity, joy, happiness and much much more. I know that you are surrounded by amazing angels of all ages and all walks of life. You are joined daily by new angels, that breaks my heart for the other parents and family that have to live with the pain of loosing their loved ones, because I know how the hard journey they are on. The pain never goes away, it's there for life, I'm learning how to live with it, with help from Angel Mom's, therapy, family and friends, and soon I will be starting compassionate Friends. I find myself remember more the good times we had, your smiles, your giggles, your joy of life, and when I do, you make me smile. Ok there are still tears, but those I don't think ever go away, either. I also, know that you are with me always, I can feel you and even smell you somedays (without going into your room). Your room is still the same, daddy and I haven't touched a thing, I go in to clean, and I go in every day to give you an eskimo kiss on your sheets, lay my head down on the mattress and tell you how much I love you. You will always be a part of our family, even though you may not be here physically. You taught me more, in your short life on earth, than anyone else in my 37 years on this planet. You taught me unconditional love, unselfishness, strength, courage, how to give and also receive help, how to enjoy the smallest things in life. You also taught me how to let go of the one person I loved more than life itself, you, my sweetheart. That day you became an angel in my arms, is etched in my heart and head for my earthly life. You gave daddy and I the love and strength to let you go. I can still feel you in my arms, feel your soft skin on my lips from kissing you endlessly, and I still feel that moment where it felt like we, you and I, were the only 2 people in that ICU room. Nothing else mattered, I had you in my arms again, for the first time in a month. That's where you belonged, in my arms. I know how missed me or daddy holding you, I can remember the pain in your eyes from just wanting to be held and cuddled. That look is also etched in my head and heart forever. I tried to comfort you as much as I could for those 2 months, by laying my head beside your face, kissing your neck and just for you to feel my breath and skin against yours, and believe you knew. I carressed your hair, and any part of skin that was not obstructed by tubes, IV's or bandages. Remember how I would sing and some nurses would sing along. Daddy was a bit shy in the beginning to talk and sing to you, but that didn't last, remember. We didn't care what people thought, because you were and still are such an important little Champion in our hearts, forever. You give me strength and courage to move on, more than any living human being. I can't believe I've made it through 3 months, I never thought I'd live one day without you, but I have, and I know it's because you are helping me. Mon Coco d'amour, maman misses you terribly, the gutt wrenching pain is still there, but the ok days out number the bad days now. The Why's have also decreased. The why you had to leave, I'll never find the answer to that question for as long as I live. I love and miss you, more than words can even describe, I will LOVE you FOREVER ! Love always, maman xxxxxxxxxxxxx
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5 months today, since you've been gone
Allo Coco, maman sent this out to her friends, sharing my thoughts and feelings. As I'm typing this, in 14 minutes you became an angel 5 months ago. While daddy was holding your tiny hand, and mommy was rocking you. At 11:09 you were gone from this world. I still can't believe, it has to be a bad dream, but no it's true. I feel so blessed to have had the honor of being your mommy during your stay in this world. I would not change a thing, even though the pain is more than I can handle some days, you taught me to fight, as you did. So I go on in your memory, to honor you, my son! Love you always and forever, maman xxxxxxxxxxxxxxxxxxx
Hi, something I wanted to share, well yesterday my mom, SIL and I went to the candle light service held at the funeral home, which is the same place where Sean is resting. It was a really emotional ceremony, beautiful but hard. They had flute musicians, pianist, professional singer. They had a screen at the front of the room, on the wall, which had a fake burning fire place, but near the end, they showed all the names of those who left us this year. When the letter L was coming up for Lockhart, I thought I was going to faint. All 3 of us were standing in the back of the room, because it was a full house. My stomach was getting in knots, and when I saw Sean's name I crumbled. Had to sqawt down, bowed my head in my hands and balled. I can't believe my baby is gone. At the end of the ceremony, they were giving out little books, with a pen for people to bring home and write their memoires. In memory of the Funeral Home Manager's grandfather. She never got to meet her grandfather, he passed before she was born, but he kept a book of his memoires, which she has read, and feels that she has known him her whole life. And she wanted to share this with everyone, that we to write our memoires for those to come. My mom, SIL and I went for a coffee after in the next room, where they had a light buffet, tea, coffee and egg nog being served, and a couple sat with us. Her little book had butterflies on it, I left to go back to the ceremony room to write Sean a note in the book left for everyone to sign, and when I came back my SIL said she was going to try and find a butterfly book for me (the couple must have overheard). Anyways, no book found, but the lady and I had exchanged our reasons for being there, her mother had passed away just a few weeks ago and was finding it extremely hard, and I just looked at her with tears in my eyes and said "I know how hard it is, I lost my 8 month old son this past summer". Both her husband and her, just looked at me stunned. Anyways, before leaving the lady got up and said, you can have the butterfly book, and all 3 of us just teared up, as did the couple, and I gave her mine in exchange. I know that Sean was sending me/us a message that he was okay, this was his way of letting me/us know. I'm sure of it.
Today at 11:09 am it will be 5 months since Sean became an angel in my arms. I'm already very tired from all the crying last night, and I'm at work, but that's life as I know it today. My life has changed forever, and now I have to work on trying to find another kind of normal, whatever that is. But life as I knew it, is gone. When I think I can't miss or Love Sean anymore, I'm overwhelmed by both of them, with a greater sense of loneliness and emptiness. This is such a hard journey, and I would really appreciate your prayers today, I pray for all my angel mom friends, and other friends going through a rough time, everynight I ask God to give you all the strength to get through another day.
((((((((((((((((hugs)))))))))))))))) and love you forever and always my love, mon Coco d'amour xxxxxxxxxxxxxxx
Maman
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Christmas poems, pour toi mon Coco d'amour !
This year
This year I want no tinsel ,
no Christmas tree with lights.
I want no cups of eggnog
no singing Silent Night.
No hassled holiday shopping
no presents with pretty bows.
I want no Christmas carols
or Santa's Ho Ho Ho's.
No snowy horse drawn sleigh rides
or busy city streets.
No wishful window shopping
or chocolate candy treats
I don't want Christmas cookies,
no candy canes or cake.
Not even being good
just for goodness sake.
No brightly colored paper
no bargains, deals or sales.
I don't want roasted chestnuts
or that grinch that steals.
I want no Christmas plays
with stories that they tell.
No TV commercials
and all the junk they sell.
I don't want reindeer prancing
or a jingling Christmas bell.
I need no Christmas cards
that wishes all is well.
This year I wish for peace
for those that I hold dear,
in the spirit of the season
and throughout the year.
The warmth of friends and family,
fond memories for all to share.
Love, joy and laughter
That's what I want this year.
This year I wish for you,
that with me you could be.
My dear sweet child of mine
that's what I want for me.
I WILL BE THERESharon J. Bryant
Mom, tomorrow I will be there
Though you may not see
I'll smile and remember
The last Christmas, with you and me
Don't be sad mom
I'm never far away
Your heart has hidden sight
My memory will always stay
I watched as you touched the ornaments
Sometimes a tear was shed as you did
I touched you gently on your shoulder
And on tiptoes I proudly stood
I'm only gone for a little while mom
I'm waiting for the day to be
When God calls out your name mom
We'll be together, just you wait and see
But until that time comes
Carry on as you did when I was there
I tell the angels how much I love you
There are angels here everywhere!
I stand behind you some days
When I know that you are sad
I want you to be happy mom
It would make my heart so glad
So on this Christmas Eve, Mom
Think of me as I will be thinking of you
And touch that special ornament
That I once made for you
I love you mom and dad, also
I know you know I do
And I'll be waiting here for you
When your earthly life is through
Love,
Your child in Heaven
Special Handeling
I was handed a package the other day.
It was wrapped securely to mailed away.
Attached to the outside as plain as could be
was a simple note for all to see
Please rush through the holiday season;
Too painful to open for any reason!
Contained within, find one bereaved heart--
Fragile, broken, falling apart
Tried to go shopping the other day;
The hype of the season blew me away.
Sat down to write cards,
That was insane.
Couldn't find the list
Or think of my name.
People say, "Come over,"
"Be of good cheer."
"Celebrate the holidays,"
"Prepare a New Year."
But my grief overwhelms me
Like waves in the sea.
Can they cope with me crying;
An unsettled me?
I don't have any holiday cheer,
Decorations, traditions, big family meal,
I can't do it this year.
Do you know how I feel?
Guilty and frustrated!
I've let everyone down!
Our holiday celebrations
Used to be the best in town!
So just ship me away
Address unknown
When my grief is over,
I might fly home.
Signed: Bereaved Heart
I wish you a Merry Christmas and a Happier New Year
I am spending my Christmas in Heaven that is crystal clear
I know your heart is broken because I seem so far away
I want you to know; I am in your loving heart to stay
My Soul and Spirit lives within your heart
and I am promising you, we will never part
I will continue to whisper to you like a gentle prayer
trying to assure you, I am in God's Eternal Loving care
Mail out your Christmas cards and hang up our stocking too
because I am filling your stocking this year just for you
I am stuffing your stockings with Peace, Joy, Happiness, and Love
from all the Angels, Saints, and our Father from Heaven above
I am enjoying the Peace, Joy, Happiness and Love in Heaven
because Jesus died on the Cross with His last words of Seven
Remember the Kingdom of God is there for us all to share
as long as we remain in His Grace until our last prayer
My wish for you this Christmas is that you shall hear
my Joys of Peace and Happiness in Heaven is quite sincere
I am sending you His Gift of Love for you mommy dear
Have a Merrier Christmas and a Happier New Year
Missing you My Baby!
It's the night before Christmas, we're all filled with joy,
Except when we think of you, little boy.
The stockings are hung by the chimney with care,
And in our hearts it's as if you were here.
Children are sleeping, in their bedrooms they lie,
But we're still filled with grief for our baby that died.
You see, this Christmas you would have been here too,
But every Christmas I know we'll miss you.
As I wrap up the presents my thought are on you,
And what we'd have bought if you were here, too.
A car, a ball, a red fire truck?
Or maybe a rabbit's foot to bring you good luck.
The tree is all trimmed with bright colored balls,
And decorations hang on all of the walls.
It looks so pretty - - I wonder if you see
Your Christmas ball we've hung on the tree.
I made it for you before you were here,
Not knowing I'd hang it with eyes filled with tears.
Tomorrow is Christmas, I'll try not to be sad;
I'll count all my blessings and try to be glad
You've not a part of our future - -
you were a part of our past
And someday I know we'll be together at last.
Compassionate Friends, Delmar, New York
Maman misses you so, so much, I LOVE you and will love your forever xxxxxxx
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Christmas Eve - Day
Allo mon Coco d'amour, yes it's Christmas Eve. I'm sure you are all getting ready for the big festivities in Heaven, with the birth of Jesus. Maman went to visit this morning and brought 3 ornaments to put on your wreath. A wooden teddy bear with angel wings, a heart that says LOVE and a golden angel. I shoveled a path for us to be able and visit and took the snow off of your stone. Oh how I wish you were here physically. But we are so blessed to have had you for one Christmas, it's more than other parents have had, which is sad. I'm waiting for Grandmaman and Grandpapa to arrive, auntie Cindy, uncle Avi, Matthew, Corey and uncle David are coming over today. Daddy is gone to visit you, he brought a small fake tree for you, with a big Santa Hat on top, a cute little teddy bear and I put a tiny white stocking in it also. You are not forgotten, you will never be forgotten. Maman has lit your candle on your special table, it will burn today and tomorrow, because I know you are with us. And it's just a reminder that you are the light of our lives.
Will write again in a bit aunti Cindy and grandmaman/papa just arrived.
Love you sweetheart, always, maman xxxxxxxxxxxxxxxxxx
Allo mon amour, well I'm Extremely exhausted now, we made it through our Christmas holidays, ok. Visited you Christmas Eve and day. Daddy brought you a small Christmas tree and put a big Santa hat at the top of it, with a teddy bear, grandmaman and grandpapa each bought you a special ornament, as I did, and Daddy. Kaitlyn, made a special card for you, inside there's colored Barney and a polk-a-dotted elephant, your favorite. I put it in a ziplock and pinned it to your wreath. Auntie Cindy brought you fresh flowers and 2 red roses, which are in your brown vase. On your special table at home which daddy wanted a tree on it, so you have a Christmas table is full of new little gifts. Auntie Cindy brought a beautiful little angel, grandmaman/papa brought a double candle holder which has 2 angels holding them. Daddy had your 2005 ornament engraved, and will be doing so every year for you. Your tree has angels and last years ornaments.
We had my grandmaman/papa, granny, grandda, and your auntie and uncles, cousins over, we were 18 in all for Christmas dinner. It was nice to have everyone here, I wanted to feel close to you, with your candle burning, on your special table. Daddy made a toast, to our 2 special angels watching over us, you and Sheila. It was very moving. All the adults, put $50 each = $550.00 which is going to the Sainte-Justine's Children's Hospital, in your name, instead of buying each other gifts.
My favorite gifts are all related to you. Daddy got me a white gold ring, like a wedding band, but on it, in gold lettering, is your name, dates and it says 'luv u always'. LOVE IT. A crystal rectagular stand, with engraved butterflies inside, which sits on a kaleidoscope of coulours, when you turn it on the crystal lights up all different colors and you see the engraved butterflies inside, it's on your table. WOW, Kaitlyn picked that out. LOVE IT. A wooden wishing well to put in your garden next year, LOVE IT. Angels. I gave a memory braclet to grandmaman, every women got a glass stained butterfly on a stand from Abbey Press. Kaitlyn and grandmaman I gave them a little blue elephant from Abbey Press for the loss of a precious child. Picture framed of you and one of Kaitlyn to every family. We ate and were surrounded by love, family, and you / Sheila were there I know it. I could feel your presence all day. Yes, tears were shed, and knots in the throat that wouldn't leave, because we miss you so, so much mon Coco d'amour.
We are blessed, we made it through it, and now we can grow and build from this first Christmas without you here physically. Sweetheart you touched so many people, who now see life in a much different way.
You are truly a blessing, and daddy and I were special enough to have been chosen to receive the most precious gift, of being the parents to you, who was here but for a brief moment physically but who will always be with us, no matter what. Not everyone gets to be chosen to receive a pure angel in their lives, but we have, we are extremely grateful for your special gift to us, choosing us to be your parents. We gave and in return received the most unconditional love, that some people can only dream of.
LOVE YOUR FOREVER AND ALWAYS, Maman xxxxxxxxxxxxxxxxxxx
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Allo Coco, something I shared with my angel mommy's
Did it every cross your mind, that it might the other way around, that we were the chosen ones and not our angels. This is something that came to me Christmas day, maybe I read it somewhere in the past, or I like to think that Sean brought this to me as a Christmas gift. Our angels, before they came to us knew from the beginning what their timeline was going to be. Either their time in their
mother's womb, or their time on earth. Taking a first breath, many breaths or not at all. They knew that they wanted us to be their mommy's, because they knew that we would love them no matter what.
That their too short lives, because they left before us, would not be an end to their existance, but the beginning of us remembering them forever. They chose us, to bring to our lives something, a meaning in our lives, that we would not have experienced should they have chosen someone else to be their mother's. I feel so blessed to
have had Sean in my life, he choose me ! Wow, I'm so grateful for that. He teaches me from the heaven's. He teaches me that the small stuff in life, I used to worry about, are not worth worrying about. To Love. To show my Love for others.
We were the chosen one's, to help others, to make our lives better, to surround ourselves with people we've never met, to only grow to love one another, even though we come from different soils, different walks of life, rich or poor, skin color doesn't make a difference, we are all the same, we loved and still love our children. We want answers to questions no one has an answer to, we
want the world to know our children, we want others to understand what it's like to loose the most precious person in our lives, our children. No one understands, except those of us who've had to live the loss of our children.
Why me ? I now believe, that why not me. I was blessed by a pure angel, who chose me. Chose me to love him for eternity, to teach me things in life that I would have been blinded or closed minded to in the past. To take away my fear of the little things in life. I used to terrified of spiders, no more. Fear of dying, I no longer fear it at all.
I choose to believe that I was chosen, and not the other way around. Just thought I'd share this with you all, you may think I've completely lost it, but I haven't. I was blessed by a pure angel.
Je t'aime mon Coco d'amour, luv u always xxxxxxxxxxxxxxxxxx
"I'll lend you for a little time a child of Mine," He said. "For you to love him while he lives, and mourn for when I come to claim him.
It may be six or eight years or twenty-two or three.
But will you, till I call him back, take care of him for me?
He'll bring his charms to gladden you, and should his stay be brief, You'll have his lovely memories as solace for your grief. I cannot promise he will stay, since all from Earth return, But there are lessons taught down there I want this child to learn. I've looked this wide world over in my search for teachers true, And from the throngs that crowd life's lanes, I have selected you.
Now will you give him all your love, nor think the labor vain, Nor hate Me, when I come to call to take him back again?"
I fancied that I heard them say, "Dear Lord, Thy will be done. For all the joy Thy child shall bring, the risk of grief we'll run. We'll shelter him with tenderness, we'll love him while we may, And for the happiness we've known, forever grateful stay. But should the angels call for him, sooner than we've planned, We'll brave the bitter grief that comes and try to understand."
by Edgar Guest
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I feel like I'm living 2 different lives
First I want to thank everyone for their uplifting words, prayers, hugs and suggestions. I did lay in bed last night with one of Sean's teddy bears and almost squeezed the fluff right out of him (LOL). And even spent the night cuddled with it.
Second I was reading in one of my grief books how this lady feels like she's living 2 different lives. WOW, really hit home. When I talk to my online friends through bereavement websites, I feel normal, understood and validated. There is nothing wrong with crying and wanting Sean. But the rest of the world, the world I have to function in on a daily basis, seems to believe that it was a singular event and that with time it will be over and done with. I feel like I'm living 2 different lives, an outward one in which I interact and function and appear as I did before (or at least I think I appear so), which drains me of all my energy, it's very hard work "to Appear". An inner one in which I keep a major secret from everybody. YES, I still hurt, YES, I still cry. And NO there isn't a day that goes by that I don't think of and long for Sean. As the lives of many of you long time grievers, I know that this is a lifelong journey of feeling the pain and shedding the tears. I don't think people on the outside world realize that YES, I will still be shedding tears in 10, 20+ years from now, and that the pain will still be there but incorporated in my daily life.
If I am to incorporate Sean's life and death into my life, I have to accept that some people will NEVER understand. They will not understand my screen saver at work with Sean's picture, his framed picture on my desk and home, the need for me to talk about him, and hear and say his name. Even though when I do hear his name or talk about him, and have tears building up in my eyes, I don't want them to stop. It's all part of my life, SEAN is a part of my life, and will always be. And for those who don't understand, if they did come to understand, that would mean that they to have lost a child.
I know someday I will have a new found renewal that will be my life, which will incorporate Sean's life and death. I know that Sean is leading me every step of the way.
This is paragraph from a book I read, " I am aware of a greatly decreased tolerance for idle conversation." And that's exactly how I feel, I don't want to chat with no purpose other than to fill the conversation. " At first I felt guilty and worried that I should make more of an effort, but then I gradually came to the realization that I had no interest in prolonging superficial acquaintances." Really hit home once again. Enough said for today, holding you all in my prayers, and sending you all tonnes of hugs,
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7 Months since you've been gone
Mon beau Coco d'amour, it's been 7 months since I last held you in my arms. My eyes are tearing up, I miss you so, so much I can't even describe the heartache and pain I feel. Some days I wonder how I made it through another day. I look forward to the day I will be with you again. I'm not afraid of dieing anymore, because I know I'll be with you once again. You are always on my mind and in my heart, forever. People think that as time goes by it's suppose to ease the pain, right now it's just getting worst. Valentines Day is around the corner, and I remember putting your red PJ's on with the bib grandmaman gave you, which said "will you be my valentine". This month also represents Heart month, and how can I not just wish that there had been something the doctors could have done for your heart and health to make you better. I hear babies that come through will all these miracle surgeries, and you my darling weren't spared, WHY? It's so unfair. You are a part of my heart and soul and 7 months ago when you left in my arms a part of me died with you. I'm not the same, I never will be, until I can be with you again. I miss you more than anyone or anywords could ever express. You are Mon Coco d'amour and no one else will ever take your place. I hope you are having a good time with the other little and big angels. I can't wait to see your big wide eyes and you wonderful smile. Kiss your little fingers and feet, tickle your belly, stroke your hair, just to be with you. Until then you know you are constantly in my thoughts, and my love for you has grown, you will NEVER be forgotten, NEVER, I can promise you that.
LOVE U ALWAYS AND FOREVER, sending you tonnes and tonnes of hugs and kisses, Maman XXXXXXXXXXXXXXXXXXXXXXXXXXXXXx
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Sean's autopsy results
Hi my love, daddy and I went to the hospital on Thursday April 6th to meet with Dre Vobecky for the results of your autopsy report. I will copy what I shared with my friends to you, even though I know you already know everything I'm feeling and going through.
Hi everyone, well today is the day we have to step through another door in order to be able to close it. John and I are going to the hospital today, where Sean stayed for 3 months and where he passed away. We are meeting his doctor and head nurse to go over what happened and the results of the autospy. I can't believe this, I've always been a strong person and I feel so helpless and torn. I could comprehend going through the results of a parent, a grand-parent or even a spouse but my child's I'll never accept this fact. I never thought in a million years I would be telling people I'm going to review my only child's autospy report. Life is so unfair, but who promised us fairness, right.
I had a bad day at work yesterday, but I now realize that I let myself explode over work, things that usually don't get to me, I let them get to me, because I had to take it out on something. I realize it had nothing to do with work, but everything to do with how torn I am about today and everyday without Sean.
I'm just sitting here crying my heart and soul out (the little bit that is left of my heart) and just wish that loosing Sean was just a big nighmare. And I'd hear him running around upstairs giggling. He'd be turning 17 months old.
I realized the day before last, that Sean has been gone longer than he had a chance to live. He lived for 8 months and this weekend it will be 9 months since he took his last breath in my arms.
I am still haunted by Sean's hospital stay, seeing everything my little man had to live through, and try so very hard to replace these memories by those of seeing him happy, giggly, who he really was.
I thought that as time would go by, it would be easier, but as time goes by it's just getting worse and worse, the ache and pain. I've been told the first 2 years are the worst and then the heartache is something I will learn to live with and integrate in my daily life.
I'm glad to be home alone this morning, because I don't have to wear any smiley masks for anyone. Nor do I have to fake it, because that alone drains me more than any physical or mental work I've ever done. But as a friend of mine said today, it's hard to live life on life's terms, but what else can we do, but live one day at a time.
Thank you all for your prayers and for just being there for John and I. I have to go now, and meet John at the hospital.
Hi everyone, we are back from the hospital. Going back to the hospital for the first time with John was very difficult (I've been back alone, but I was still numb at the time). Sean's doctor met us, and went to get his files, she wheeled his files in on a trolly and I lost it. I forgot how many files and how thick his files were/are, so many that a trolly was needed, and it brought back the memories of every test he underwent and how sick he really was. We didn't get any answers that we didn't already know. Dre Vobecky was extremely gentle and didn't go into detail as to what was done during the autopsy. She had tears in her eyes from the moment we sat down with her, and me well I cried the whole time. There is no name to Sean's severe heart defects, he was an extremely rare case 1 in over millions, (we already knew and know we had a one in a zillion child). Sean Lockhart will remain in the study/research cases for years and years to come, he is on a special list, how could he not be, being he was the most special gift I was ever given. As Dre Vobecky stated Sean's name will NEVER be forgotten, even when those who took care of him are gone. His purpose here was one of many reasons, to touch us and teach us many things in life and hopefully help with other children born with CHD (congenital heart defects). They did find an abnormality with his chromosone 15, but again they can not pinpoint what the abnormality is, because it's something so rare, they've never seen before. (Chromosome 15 spans about 100 million base pairs (the building blocks of DNA) and represents more than 3 percent of the total DNA in cells.) His arythmia (a rare case of arythmia, no name again to this condition, except perhaps atrio-ventricle arythmis) was also a major factor in his death, which was the electricity in his heart not functionning properly. Why, this is also unknown. He could have passed away at home anytime due to that factor, but he chose to enjoy every minute of life. Always smiling and taking everything in. Something we could all learn from Sean. Is it genetic, no, they couldn't find anything that indicated it was. When we have another child(ren) will they be born with heart defects, just like any other couple we have a 1 in 100 chance. Dre Vobecky has been a Cardiac surgeon for 18 years and has never seen a case or heard of a case where the parents had another child with severe heart defects, causing the death of another child. Yes, some have had other children with heart defects, but the number of heart defects out there are not all cause of death or concern. Some people live their whole lives with heart defects and don't ever require surgery.
I am very proud of my little man, and wouldn't change a thing or any decisions we made. He is the strongest person I've ever met and I was blessed and honored he chose me as his mommy.
Another chapter to our lives, which we must close. Unlike Sean's life which is a chapter that will live on as long as we are alive. Sean's life meant something for so many and I will NEVER let anyone forget I have a son, our Champion, our Hero.
LUV U ALWAYS AND FOREVER MON COCO D'AMOUR XXXXX MAMAN
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9 months since you've been gone sweetheart !
Allo mon Coco d'Amour, it's been 9 months since you've been gone. You lived for 8 months outside of the womb and now you've been gone for a longer time than you actually spent here with us, holding you and being able to touch and kiss you. The love has not left us and nor will it ever. My Love for you will be what will keep me alive until I can hold you again in my arms. Sean you will always be a part of me, no matter where I am. A poem that was sent to me by grandmaman, for you my sweetheart, my love.
Longer
This is the anniversary,
The one that I most fear.
Today, you have been gone,
Longer than you were here.
It's impossible not to,
Show cracks in my veneer.
When I realize you've been gone
Longer than you were here.
It gets so much harder,
With each passing year,
Knowing that you've been gone,
Longer than you were here.
I still feel you around me,
You always seem near.
How can you have been gone,
Longer than you were here?
I think of all the things you missed,
And often shed a tear.
Thinking how old you would be,
If you weren't gone, but here.
I'm sure I'll never know why,
Things will never be clear.
Why do you have to be gone,
When you should still be here?
People just don't understand,
An aching this severe.
Knowing that you are gone,
And wishing that you were here.
© Sue Saladino 03/16/06
I will love you always and forever, maman xxxxxxxxxxxxxxxxxx
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I held you for the last time a year ago on a Friday !
Allo mon Coco d'amour ! A year ago on a Friday was the last time maman got to hold you tenderly in my arms. Oh how I remember that day, how it felt holding you in my arms, your smell, your soft skin. You have left me with so many memories in your short stay here on earth and I am extremely grateful for those memories. When I close my eyes I can still feel you, see you, and sometimes even smell you. You are the love of my life, and your love has now sent us another little life, which will now permit me to mutliply my love amoungst you and your brother or sister. You are constantly on my mind and in my heart and soul. I miss you more than words can even describe. My life will NEVER be the same, until I can be with you again. I look forward to that day, but now I also look forward to spending time with your little brother or sister. I know that you had a big part in making this happen especially during these hard months without you. It will never be easy, but no one ever promised us an easy life. All I know is no matter where you are you will Alway and Forever be a part of me and I will continue talking to you and sending you my love. Sending you tonnes of hugs and kisses from here to heaven, mon petit pou d'amour.
Maman xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
How Do I Love Thee
How do I love thee? Let me count the ways.
I love thee to the depth and breadth and height
My soul can reach, when feeling out of sight
For the ends of Being an ideal Grace.
I love thee to the level of everyday's
Most quiet need, by sun and candle-light.
I love thee freely, as men strive for Right;
I love thee purely, as they turn from Praise.
I love thee with the passion put to use
In my old griefs, and with my childhood's faith.
I love thee with a love I seemed to lose
With my lost saints, - I love thee with the breath,
Smiles, tears, of all my life! - and, if God choose,
I shall but love thee better after death.
~Elizabeth Barrett Browning
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