All you need is this kind of love!
All you need is this kind of love!
Lori of Lavender Luz challenges us to look the perfect moment. If you look hard enough, they are all around you, you just might not be seeing. The more you see, the more you will find. Which was my thought as I stood in The Big Brother’s room last night staring at a photo.
But in the beginning…
I was a steadfast on holding onto my motto, “I’m a BOY mom!” My other battle cry, “NO! I am not going to have anymore, have you met my boys?”
The Big Brother had to have been in ear shot of all of this. Afterall, I do have a big mouth. But as is his habit (or anyones, for that matter) he had fine tuned the skill of selective listening.
He was in second grade when the family moved in across the street. A gorgeous family with three adorable little girls. His favorite, Baby Mollie. He couldn’t get enough of her. Blasting into the house he would brag about how good they said he was with her. To which he would use as ammo to plea, “see Mommy, if you have another baby, I can help you, cause I’m good at it.” While I was touched… this was not enough to motivate me for further sleep deprivation.
Another tactic he used in his ongoing argument was his assurance he would not leave me “all alone” in the hospital. “Remember when Little Brother was born and I came to visit you? Wasn’t that nice? If you have another baby I will come and visit you, again.” All very touching but still, I was remembering the much wanted, neglected hamster I had been caring for and was not completely buying what he was selling. Touching as it was.
So, imagine his great joy and delight when much to our surprise, The Big Brother was going to get his wish. A Baby, just what he always had wanted. The newness of his two brothers had worn off long ago so he couldn’t wait for his new brother or sister.
I don’t recall him wishing for a brother or sister but I remember he wanted to name a baby girl, Tootsie. He thought it would be great fun to be able to call her Toots. Boy, girl, he didn’t care, he was on board, 100%.
When Madeline arrived he in love had been making great plans for homecoming. I remember being just so sad for him, when he was told Madeline was rushed back to the hospital and would be there for many weeks. That, was not what he had been planning. He had been practicing for this moment for 9 months.
But good to his word, he was a faithful visitor and from the start, an adoring, loving Big Brother. Any chance he got, he was at her side or picking her up, or squeezing her with all his 10-year-old might. I could just kick myself for all the times I begged him to “give her space”. Because I learned too late he just couldn’t get enough of all that cuteness…no one could.
When finally, Madeline was going strong and spending more of her time at home, Big Brother took full advantage. A favorite memory, I was taking her to get a picture taken in her Easter dress. He skipped a laser tag party, grabbed his Sunday best and insisted on private photo session. And yes…it was that precious.
When Madeline died, within moments I thought, “I cannot tell him, how will I tell him, his much adored, desired Baby Sister is gone.” In the end, I wasn’t even there when he was told. A teacher whose care and compassion carried The Big Brother through that year, was there. She said she will never forget that moment.
As time has passed Big Brother, with some strong faith and guidance, seems to be in a different place. Gone are the days of him asking can we “get” another baby, can we please adopt, Mommy?” The permanence of this loss was too much on his heart and mind but he has seemed to tuck it somewhere inside himself. Slowly, I thought, he had moved on. He had ceased talking as much about her and requesting to “visit” her in Chicago. All healthy, I was assured, but still, caused a sadness in my heart wondering if he thought of her still or had he, perhaps, outgrown his Baby Sister.
But 13 year old’s nature being what it is, I had not thought of a good way to ask without causing any unnecessary trauma. Also, I knew I needed to be happy for this contentment and maybe I should be taking notes.
The Big Brother uses his new treasure, his I-Touch as an alarm. After learning we were going to have a weather delay, I went into his room where he was sleeping to turn off his alarm. I picked up the I-Touch to crack the code on turning off the alarm, then I pressed the button to turn on the screen. And much to my heart’s delight and through a few tears this is the screen saver I saw my Big, Boy’s Boy 13-year-old I-Touch.
Don’t misunderstand, I am very glad that he has found peace. But I cannot tell you the warmth that filled me up to see the Forever Love he has for his Madeline and the quiet ways he has found to keep her close.
My heart is grateful for that perfect moment in time to witness such sweet and tender-hearted love for Madeline that I mistakenly thought had faded away. Perhaps, instead, has found a deeper place to grow.
“Let’s do the Time Warp Again.” On the second Tuesday of the month, Kathy at Bereaved and Blessed hosts a party in which the game is to look through your blogging archives and chose a previous post in which you mentioned the theme, then reflect on what has changed on your journey since that time. The theme this month is Change.
At times I truly believe that old saying, “The more things change, the more they stay the same.” Except I tweak it by adding…at least a little.
I have only been at this blogging business since May, 2011. My first published post was on May 18, 2001. When I started blogging (at the great and not so gently urging of friends) I wanted to be funny and witty. I fancied myself a modern-day Erma Bombeck who would entertain with humorous anecdotes. Mostly about Johnny and The Brothers. I had always wanted to do that.
The problem…how was I going pull that off when I was only beginning to function a mere six months after burying our Beautiful Madeline. Initially, I didn’t even plan to discuss her death and our paralyzing grief. I wanted people to read and I thought if people tuned into all that, well, they wouldn’t come back. But I am learning you cannot accomplish any goal if you are going against what is in your heart and on your mind. That path leads to nowhere.
The post I chose is the first one I wrote where I mention Madeline. I am discussing how Johnny is helping me cope with missing her. It is rightfully entitled, “Just Too Much”.
Going back through my archives this what not initially my choice for this Time Warp, but when I read through I changed my plan midstream. I read “Just Too Much” and couldn’t believe I wrote it. Yes, the Johnny anecdote is one thing. What struck me was the somewhat nonchalant tone I took when writing about Madeline and that experience that day. It sounds so restrained and sterile…detached. Because, believe me, I was there, that was NOT quiet sobbing.
I think when I started this blog I was so focused on what direction I thought I was taking my writing. The path that would save me. The path that would put a band aid on what wasn’t broken and let me escape my own nightmare. But somewhere on this path I discovered it was leading me in the wrong direction. And I couldn’t keep up the dueling personalities any longer.
Today I like the path my blog is taking. Life According to John is now reflects only ONE me. The real me. The me that likes a good belly laugh, especially at the absurd and most especially at the everyday absurd that is the chaos of my home. But it also is the me that still longs and aches daily for Madeline…that still chokes back tears when everything seems to be too much.
And now when it is just too much I dump it one here and each time I write about Madeline… her life and our life without her…I know I am taking a just one more step, a very small step, on the path to Just Right.
I belong to a club. One that I did not… nor would ever…have asked to join. In fact, none of the members want to belong. But no one asks. You become aware of your membership when you begin to “wake” from the gut wrenching, horrible nightmare of “losing” your child.
We’re an “odd” club. We are “thrown” together. We DO NOT want to be here and by all means…………..we DO NOT want new members. “Misery loves company” does not apply. This type of misery I would not wish on any one. The dues come at too great of a price. The price………..your Child’s Life.
New members joined us on Friday December 14, 2012, in Newtown, CT. We did not want them and they do not have any desire to “get to know” us, or our “way of life.”
Each member has a very personal story and has experienced their own “personal” hell. Many of us can relate to each other and share a similar hell. Others have nothing in common. For some, the only thing in common is that we have buried our “Baby”. Be it their “Baby” died in the womb, never drew their first breath, spent only a finite amount of time on this earth, battled a horrible disease, battled drugs or took their own life. All feel like Hell.
I have been a member of this “club” for two years. Each story I hear, I think, “what a living hell.” All unimaginable to those “not in the club.”
The parents and families of these Precious “Babies” who lost their lives at SandyHook are in a Hell that, not even “club” members can fathom. The Hell that must exist for your Precious Child to have their life taken at the violent, brutal hands of another. To know that their child experienced unspeakable terror, fear and pain in their last moments and there was nothing they could do to protect them.
This is what I keep thinking since this horrific event. The horror of their last moments, how the families will ever “go on.” My Baby Girl, although considered “medically fragile” died suddenly. The trauma of her sudden death and surrounding circumstances haunts me, but if there is any comfort she was in “loving” hands. There is no comfort that can come from your child’s life being taken with unspeakable violence and horror.
Today, I heard about two or three more “kids” being laid to rest in Newtown, CT. My initial thought, those “kids” are someone’s baby. Don’t they deserve more than that. What about their name? How about, if you don’t know their name, LOOK IT UP. With the same effort and energy being used to sensationalize this horrific loss. My friend Kathy at Bereaved and Blessed writes about this, challenging each of us to “remember a name”. To remember their name, honors their life.
Their names, their sweet faces. They were someone’s Precious Girl or Little Guy. When I hear the debates surrounding gun control and mental health (both appropriate) I cannot engage. My heart and mind keep going to those families who are beyond suffering.
I just think of the rawness and complete numb state your mind and body shift to at the death of your baby. This raw grief defies explanation. The constant replays of your last hug, the last kiss. The unimaginable “what-if” and “if-only’s” that are on a constant reel to reel in their head.
Trying to endure a new minute, a new hour, a new day knowing you will never……. in this life…………hear your child’s voice, see their sweet face or snuggle their baby again. The panic I know they will feel when this hits. That feeling of “I must see my baby, I cannot go another moment without my baby. Yet, you must………you have to………….. you do.
I wish I had no idea what it is like to bury my child. But I do. So I am scared. Scared for the parents and families left behind. Scared for their grief and pain. Scared for their sleepless nights. Scared for their unstoppable, body wrenching tears that will flow. Scared for the nightmares that will inevitably haunt them. Scared for the strength they don’t know they have……… or if they have……. just to get out of bed.
Dear Newtown Ct, families, I am soooo sorry that this has happened. I am so sorry you have to be in this “club.”
Grief is a marathon…………a perpetual marathon. Not a sprint. It is a test of endurance that no one wants to try to pass. Some members of “the club” do better than others. Many of us just simply……….endure. I pray that these families are able to simply…………..endure.
I have been out of touch Dear Readers. I have had a full mind and heavy heart , leaving me with a lot to write about but unsure where to begin. Different for me, if you have had the pleasure of my company you know…………… I am chatty! However, at times when the heart is heavy the words become stuck. This has become the case.
Thus, I was glad to learn from my friend Kathy over at Bereaved and Blessed it was for Time Warp Tuesday. Just the motivation I needed. Kathy invites us to visit an old post, reflect on “where” we were when we first wrote it and “where” we are now, in our thoughts or on whatever “journey” we may be taking. The subject this months is “gifts.” Very apropos as Christmas calls us to be in the “Spirit of Giving.” Easier said than done with a grieving heart sometimes stuck in “wishing” and “hoping” for what “no longer is” or “never will be.”
I chose a post from last September. We were fast approaching the One Year Anniversary of losing Sweet Madeline and the weight of the grief was suffocating. Adding to the weight was watching her brother’s grieve and try to comprehend the unthinkable loss of their baby sister. The Big Brother quite simply adored Madeline and was literally in her face at any opportunity. Sneaking any chance to be cheek to cheek. Not knowing what the future held I was quite often telling him to “please get out of her face, stay out of her room, let her rest.” Reader, as you probably guessed, The Big Brother NEVER DID listen.
As well, never did I dream this……………… his failure to listen …………….. could quite possibly be the best gift ever. I recount the day I received this gift in A Brother’s Love.
Welcome back……….I watched this again for the first time in a long time today. I am still, today, as touched by the gentle heart my now Really Big Boy still has!!!! I am even more grateful as I struggle through, without our Precious Girl, to have even just a moment preserved for a band aid for my heart. To catch just one of those rasberry kisses.
As a Mom, I am on that poor boy all the time to just listen!! Possibly, I should have learned my lesson with “Madeline’s Moments.” What a treasure to have a non-listening child sneak in to video his “irresistable” Baby Sister sleeping. To have this “gift” to watch these moments and feel completely transported to that moment when our Precious Girl lay sleeping in the next room and feel for just a “moment” that I could quite possibly just reach through and kiss and hug that Sweet, Sweet Baby. And just for a moment I quite possibly felt her touch and inhaled her sweet perfume…………….a gift………….no amount of money could ever buy.
No………….it is NOT a typo, you read correctly, it is called Perfect Moment Monday. Yes……………..I know it is TUESDAY but I thought about my perfect moment on Monday………………..if that counts? However, life got a little in the way on Monday and now, here I am, writing from my own personal time machine. So, Dear Reader, please humor me and play along. Please and thank you!
As has been said, “The best things in life aren’t things at all.” They can’t be bought, wrapped and put under a tree. At times they appear in what you believe to be the mundane of your life. Not at all in those moments marketed to be perfect.
Case in point, the child, who shall remain nameless, that looks at disappointment at his gifts on Christmas Morning when he realizes you really meant he was getting that rated M for mature game. I had already sent my own letter to Santa, was my reply. Sad child, frustrated parent, not so perfect.
I did not have high expectations of Thanksgiving either. When you have lost a family member, no matter the age, you struggle through the day to not be filled with grief and longing for your loved one. This was especially tough since our Precious Madeline’s anniversary is in November and we were struggling so with this 2 year milestone.
However, for her Brothers, we knew we must pull something together and present the makings of a holiday. Possibly complete with a new tradition. Shake it up a bit and give all of us something to anticipate. Something with potential for fun. So that’s what we did. With “four” boys in our home who love history, we headed to Gettysburg the day after Thanksgiving. Excitement abounded……………for The Brothers, as we were going to stay in a hotel WITH a pool. Not something we do much of so they were pretty happy.
Of course, hotel life and all looks good……………….. on paper. Actually having The Brothers together in confining quarters is a different story. Paper………………. not as pretty. We did get a little front room with a pull out sleeper and t.v., etc. Best idea Captain Daddy ever had. Despite our suite, after the car drive and some museum time, The Brothers weren’t really feeling “Brotherly Love.” If my ears didn’t deceive me disparaging remarks were flying under their breaths.
Particularly difficult is managing some of Johnny’s autistic behaviors on the road. Being away can stir up a great deal of anxiety. And Brother being “good” brothers…………….they don’t always display much sympathy and there is a lot of OMG STOP IT, JUST STOP IT. (By all concerned)
So where, you may be thinking, was there any perfect moments in THIS SCENARIO. Like I said before…………….it came out of nowhere, when I was expecting the fists to start flying I discovered this……………….
Things got quiet, so I walked into the suite (cracks me up to call it that) to see if they had left and what to my astonished eyes did I see? The Big Brother and Johnny, the MOST unlikely pair, lying side by side on the bed, with their legs touching…..yes, touching………….. and then I noticed their hands. Their hands were pressed together in that way of comparing and then it happened, their fingers locked together. What an absolute perfect sight for my sad eyes. My heart filled to see Big Brother and Johnny sharing this time, albeit brief, when they were at peace and all was right in our little life for that Perfect Moment.
Fall. Such a beautiful time of year. I love the crispness in the air. The breathtaking colors of the leaves. The warm glow of the autumn sky. For so long these images of fall took me straight back to high school and memories of shlepping along with the band and football games.
That memory has been replaced. Now that crisp air and breathtaking colors conjure a much different memory. One of fear, hope, hospitals and grief.
It was a beautiful November day when I first learned we were going to be blessed with our Fourth child. Initially we were overwhelmed. Four children and I hadn’t been in the baby business in 6 years. A surprise blessing you could say.
Another beautiful November …………..one year later…………..our Beautiful Madeline was here. Four months and four surgeries. Finally she was home, we were beyond thrilled. In the blink of an eye our thrill turned to fear. With one turn of my back I heard her gasping for air and turned to see her sweet face struggling and blue. In a blur, 911 was called. She was rushed to the ER, then promptly to the OR. Doctors took turns holding the tiniest of tubes to keep her airway from completely closing. By nothing short of a miracle, a tracheostomy was successfully done, a mere 5 weeks after open heart surgery. I was numb with fear ……hope and……………unconditional love.
For the remainder of that beautiful fall, I watched the leaves and sky turn golden from the side of a hospital crib. I could not feel the warmth of the crisp air. My senses were overwhelmed by the continous beeping of monitors. My eyes not able to take in the beauty of the foliage for they were fixated on the numbers the monitors were screaming. Fight songs playing through my head were replaced with pleading prayers for healing
From this hospital room, I watched the tree grow bare and then droop with snow. Finally………………. a December morning and with a staff of home nurses Madeline came home……………….we were again, beyond thrilled. Again, our thrill turned to fear when two weeks later she began vomiting. A routine follow up became a night in the ICU and more surgery. Pleading prayers for healing turned to begging God for mercy and strength.
It was Baby Girls First Thanksgiving and Christmas and her stocking was to be hung on her hospital crib decorated with Red Velvet bows. Madeline rang in the New Year in a Pediatric Rehabilitation Hospital. Again……… we pleaded God for strength to bring her home.
God heard our prayers…………….our Little Irish Lass amazed us all and finally came home.
Winter turned to Spring and much to our delight she was with us to done her Easter finery and stare in wonder at the brightly colored easter eggs. We had gotten over the hump, we just knew it.
Spring to summer…………..many doctors appointment, several near misses………. but she was home. Baby Girl was a fighter, one tough cookie! Feisty, you could say.
Imagine our euphoric delight on July 4th. We had made it! One Year!!! Red velvet cupcakes and sparklers all around. We even got to go to the beach……………Baby Girl got to her dip her toes in the ocean and frolic in the sand.
Roller coaster. Death defying roller coaster ride………………a concise description of the year of emotions. But hey, we were taking that last smooth turn for all it was worth.
Summer turned to fall……………..and preparations began for diving into the beautiful fall, renewing our senses with that crisp air and golden sky and rejoicing in our life……………..away from hospitals. October was pumpkin patches and Halloween costumes. Our Madeline was a perfectly adorable Bumble Bee. She stared in amazement at the festive activity and barrage of pictures. Pinch me………………I was dreaming……………..bring on the Holiday fun.
A beautiful November morning, Madeline lets out a scream……………….911 is called……………..here we go again. Our joy now turns to horror…………….absolute horror. Pinch me……………………I must be dreaming…………………. a NIGHTMARE!!! Again………….we pray…………our pleading prayers………….turn to begging……… to hysteria. Our tears flow and wrap our body in a pain so raw you can’t believe this is real. On this November morning, with a clear blue sky, Our Sweet Madeline took her last breath. Again I prayed……………….Please God, this can’t be real…………….it was. It must be a nightmare………………..no……………. it’s your new life.
A week later on a beautiful November morning, with golden leaves and clear blue sky…………….Our Sweet Madeline was laid to rest. My new fall memory…………………her brothers, wearing blue blazers and white gloves, carrying her tiny casket up to her burial site. She was laid to rest under a tree, ripe with fall foliage, under a warm autumn sky.
Two years have now passed……………………slow and full of pain. A golden, warm fall day. Beautiful and painful. Trees heavy with golden leaves in a gilded sky. I pray for strength………for me……….to find a new way and for healing…………..for our broken hearts. I still plead and pray……….Dear God, keep my Baby Girl in your care, safe in your heavenly arms…………….until she can be in mine…….on a beautiful November morning, in a warm gilded sky.
I have a guilty pleasure. Don’t we all……………..right? A select few know of mine………… but now I guess I have selected for you, Dear Reader, to be in the know. In moments, days and hours of sadness, feelings of hopelessness and in the trenches of grief, I grab my beverage of choice, curl up in my bed, pray for the world to pass me by and turn on the obvious mood lifter……………………..PRISON SHOWS.
I can watch these shows for hours. I have seen so many that, sadly, some are re-runs to me. Why???……………….weeelllll, I have NO IDEA. While I am viewing I consider why am I watching the devil incarnate, on my television, telling, sometimes with pride, their horrendous crimes. Often accompanied by the hard luck story.
Do I relate to these men and women……………NO! I barely walk against the don’t walk sign. Cautionary tales, perhaps?…………. No. Did I miss my calling as a Prison Warden…………could be. Am I crazy? Yet to be determined.
Anywhoooo…………..my point? Well, the last two years, without our Madeline, have been unbearable. There are days you do not know how you got through the last hour, let alone how you will get through your day. Grief, at times, can confine you. Your confinement is the equivalent of doing hard time. On bad days you won’t even go out on the yard. Just the day-to-day activities can be a ball and chain. Grief has you trapped and you see no way out!
You scream on the inside………….WRONGLY CONVICTED!!!! What did I do to deserve this sentence? I followed the rules. I’m a “good” person.
Sadly when you receive this sentence there is no “Appeal Process, no bail, no parole, no credit for good behavior………………….. not even a work release program. All you have is time. And you have no choice but “to do” your time. Time that must be “done” while serving your maximum sentence…………………….life without your precious child. No time off for good behavior……………….
There is no good or easy way to tell your child about death, especially the death of their Baby Sister. Much time is put into teaching them to pray, not preparing for death. “Pray for our Sweet Madeline and for her Doctors and Nurses to take good care of her, so she can come home soon.” We recited a version of this simple yet pleading prayer for 16 months.
Left with no words when our prayers were not answered in a way we can possibly ever fully grasp, we simply said, “God called Madeline home.” “She is an Angel now with God, her cousins and Grandma and Grandpa’s.”
As I have not found even this knowledge to be adequately comforting, I often wondered what The Brothers were thinking. Big Brother is pretty firm in his faith for a little/big guy. He told me with awe, “Mom, she’s like a Saint now!” Johnny, so literal, simply said through tears, “she was so beautiful and now she is gone.”
The Little Brother, maybe was the most like me…………… he simply didn’t seem able to take it. Once all the “doing” was over for her funeral and he was sent back to his “normal” day-to-day routine, you could say the bottom fell out. He to did not know what to do with this knowledge. Knowledge that his Baby Sister he and everyone prayed so hard for, was gone……………..she was now in this place called Heaven and it was supposed to bring peace and comfort. Yet, all around him was great sadness. His response to his great sadness………………..retreat………..retreat under the desk, in the closet, under the Christmas tree and in the bathroom. And we didn’t know what he was thinking because he refused to discuss. However, as they say, actions can speak louder than words so we concluded he was simply as broken and confused as anyone.
Thank to selfless, dedicated teachers going way beyond the scope of their job descriptions, Little Brother began to retreat a little less, and less. He began to talk just a little but just enough. One day, his teacher told me to check his folder. He had written a poem. I was a little nervous as to what he might write. I was thinking his favorite (potty humor) or something angry. I thought…………wrong. The Little Brother had possibly been sold short. He hadn’t been shut down as much as possibly he was giving this place Heaven a great deal of thought. And while under those desks he had been painting this comforting picture………………..
GATE OF FAITH
Just at the gate
Is where you’ll find your fate.
As you see in the bright night
Just coming through
Just follow me and the moon rises
Just come with me
I’ll do as you wish
By the river full of fish
As I lead the way
To the gate of your faith,
Just as we pass trees in peace,
As long as you stay with me
You’ll never be lost,
As the owl flies up in the night sky
You’ll always have your way with me
Just follow me
The gate of your faith
It’s just so hard
To resist the feeling.
(The Little Brother, 2nd grade)
So…………..I wonder, is this what Baby Girl heard when God Called Her Home?
My Sweet Little Bumble Bee. That is the last photo ever taken. It is our treasure.
For two years I have carted my constant companion, grief. She never fails to show up, and her presence is unwelcome. That I have met her and fostered such an intimate relationship is a fact I could live without. Our relationship is tenuous at best. She stabs me in my heart at every opportunity. She thrives on the surprise attack.
I try with all of my might to keep her at bay. The best I usually do is to remain in a state of a face to face standoff. I know she is there and I am doing what I can with every fiber of my being to keep going. In return she stands firm taunting me with each step I take. I feel that I do a decent job of carrying on. Some days grief works harder. Today, she did some of her best work.
Tomorrow is the two-year anniversary of Our Sweet Madeline’s death. I was prepared for tomorrow. Today, not so much.
Two years ago, November 1, 2010, was her last day of life. This is the thought that played on a loop in my head. What did we do together? I struggle to remember. Did I spend enough time with her? Did I hold her every chance I got. What about hugs and kisses? Were there enough? Is there ever enough?
I remember that evening sitting with her in our chair waiting for her night nurse. I knew of a little girl with down syndrome and shared the pictures with Madeline. Telling her she was going to be so strong just like that little girl someday. Had I only known our someday would never come. This was our day together, this was to be our final day together.
Grief changed her game on me today. Instead of how long it has been since Sweet Madeline died, I find my whole being aching for how long it’s been since she has lived.
Today is All Saints Day. I went to mass. Prepared to see the kindergartners dressed in their Saintly Attire. Not at all prepared for what hit. Never will Madeline be 5. Never will she go to kindergarten and NEVER will she march down the aisle to When the Saints go Marching In.
Through my tears I had a thought. She has done her march. I like to think she led the March……………the day God called her home.