Surviving the death of a special needs child. My personal and painful journey through the proverbial hell.

Published on April 4th, 2016 - Updated April 5, 2016 16 Comments

It’s been 3 months…. 6 months8 months…. 1 year and 1 day… 1 year and 3 days today since my almost 17 year old special needs daughter Daniela Cristina, passed away. That’s how long it has taken me to write this article.

The day a third of my heart went missing.

April 1st, 2015, was a regular Wednesday, like any other Wednesday. The alarm clock went off at 7:30 am, like it did plenty of days before that day. I woke up, went to the bathroom, brushed my teeth, and like every day prior I walked up the stairs to wake up the kids and get them ready for school. I went into Gabriel’s room first, my youngest son 11 at the time, and woke him up with lots of kisses, like I’ve always done since he was little. I remember telling him, “please don’t take too long in the shower! your sister’s next!” and I walked out of his room on my way to get my coffee before getting Daniela, ready for school. I remember passing by her room, which is next to Gabe’s, I checked my watch, which marked 7:40 am and changing my mind thinking “let me check on her before getting my coffee” I went into her room. As I entered her room she was laying on her stomach with her face buried in the mattress, like she did plenty of times before, which scared the bejesus out of me. Every time I would find her like that I would rush and turn her over, thinking she couldn’t breath and she would immediately turn and with those gorgeous green eyes and beautiful smile she would laugh in my face, almost saying “gotcha! did I scare you mom?”. This time though, there was no laugh, and no “gotcha”.

She was covered with her tinkle-bell blanket, which I remember covering her with at around 1 am, before I headed for bed, but her right foot was sticking out of the blanket and the bed. I remember touching her foot, which I thought it was unusually cold and saying “are you cold monkey?”. I always called her my monkey in a loving way, as that’s what she resembled, clinging to me while I would carry her in my arms. It didn’t feel right, so immediately I touched her back, which was ice cold and hard. My heart sped up. I felt the strong palpitations in my mouth and panic sunk in an instant, I knew something was terribly wrong. When I finally got to her little hand it was cold and stiff. I tried flipping her over, that’s when I saw her lips were blue and she was unresponsive. I remember screaming from the top of my lungs the most visceral scream I could muster “Daniela is dead”!!!!!! while running out the door for help and as quickly back into the room. My husband was downstairs getting ready for work. He came upstairs running and rushed back downstairs in panic mode, I guess to call the paramedics. By that time I was desperately trying to wake her up crying and screaming hysterically, “Dani!! Wakeup!! Please wake up!!!!” It felt like the paramedics took forever to arrive, but it was only 4 minutes. I remember one of them grabbing me and pushing me out the door. I couldn’t stop screaming, I kept yelling for Dani to wake up, that she needed to wake up because we had to go to school. But she wouldn’t wake up….. My Daniela never woke up again….

The paramedics knew she had been dead for a while, because rigor mortis had already set in. A parade of police officers, the sheriffs, the coroner and paramedics were running up and down. Each one of us got separated by the police and questioned like criminals. I remember been in the kitchen and as the female police officer was questioning me we both broke in tears, as she too had a special needs brother and the pain was too familiar for her. The coroner said she had died from natural causes. Perhaps an aneurysm or a heart attack. Whatever it was it was painless according to him, and she went in her sleep. After all the horror subsided, and the sheriff and police officers satisfied their investigation as they presumed foul play, all that remained was our broken hearts, a beloved child gone in an instant and lots but lots of questions that would go unanswered forever. What happened?!… What did I do wrong?!…. Why didn’t I wake up to help her?!….

For almost 17 years after Dani was born, I committed my heart, body and soul to care for her. I changed my routines, my life and our family’s dynamic for her. Every vacation, every shopping trip, kids plays, absolutely everything was scheduled based on her, and her needs. Daniela was always first and the kids understood why and accepted without complaining. For almost 17 years I woke up every night at 3am to check up on her, but that day, that Wednesday April 1st, 2015 I didn’t, and to this day the thought of “if I only would have woken up she might be with us”, still hunts me down.

The weeks prior to April 1st, Dani was restless. She would spend the nights playing, and of course the days sleeping. This whole disruption of her daily routine took a toll on me. The day before, March 31st, Dani went to school like any other day. She was happy, like everyday, because that was my number 1 priority, make her happy, so she was always happy. She had worked on Easter projects at school, and everything seemed normal, like any other day. We had a wonderful day together, we listened to her favorite music in the car coming back from school, Kiss from a Rose by Seal, we played at home, I fed her, bathed her. We had fun. Last time I saw her and gave her our usual goodnight kisses – three kisses on her forehead and one on the tip of her nose – was April 1st at 1am. She snuggled in bed with her twinkle-bell blanket, and I told her “time to go night-night cochi-cochi!”, cochi-cochi was her nickname….. That was the last time I saw those gorgeous green eyes staring back at me.

Daniela – The child that defied all odds.

Daniela was born with an extremely rare syndrome, called 9p+. A genetic syndrome that affects approximately 1 in every 250,000 children in the US. Not much is known of it, and the little there is doesn’t paint a bright future. Kids with this particular syndrome don’t make it past the age of 5. As a Psychopedagogist I knew we had to find the best care for her after she was born. So we did what any parent would do, look for the best hospital and doctors we could find. That’s how we made it to the Emory Hospital in Atlanta, GA. There we met with a wonderful Genetics Specialist, Doctor Paul Fernhoff, whom would monitor her and study her progress for years as there is very little documentation on her syndrome. We got the best therapists and little by little this child that couldn’t even roll on her own at the age of 1 much less hold her bottle, blossomed into this amazing, happy, almost independent curious child.

Despite her progress Daniela was non-verbal, severely mentally delayed, couldn’t walk for which she was on a wheelchair, but was able to crawl everywhere and walk like Frankenstein with assistance; she required assistance during feeding time, and most normal activities. So I became her voice, her legs, and everything she needed. From the moment we got the DNA results of her syndrome with tears in our eyes, we committed to care for her and provide her a life as happy and as normal as we could. But the fact this date was narrowing on us by the passing of every day was heart-wrenching.

A parent of a special needs child, who’s committed 24-7 to her/his care, develops a symbiotic connection based on completely unadulterated unconditionally pure love. There is no “I don’t love you because you didn’t by me this or that”, there are no conditions to love, there is just love of the purest kind. I would know by just hearing her cry what was wrong, what she needed and how I could make it better. My mission was to make her as happy as I could for as long as I could.

By the time her 5th birthday was approaching, we couldn’t even breath. We were all waiting for that dreadful moment we had heard for so long. To our surprise and the doctors, she made it past 5, and 6 and many years more.

The doctors told us that there was a greater chance that she wouldn’t survive puberty. The fear was back on our minds. Every birthday we would sing happy birthday and I would enthusiastically scream “You made it to 10! 11! 12!” or whatever the age, and she would get so happy, like if she actually understood what was happening. We always thought she understood much more than what we gave her credit for.

Dealing With The Loss…

I’ve survived many events in my life. I was rapped at the age of 18 in college. 7 of my 10 pregnancies didn’t make it, one of them was a 8 1/2 months still born, the dramatic death of my dad, caring for mom who suffers from Alzheimer’s. Life hasn’t been “nice” some would say. But despite everything, I had my kids, I had Dani, so everything seemed unimportant as the years went by, experiences I had to go through so I could become who SHE needed me to be.

After the paramedics and police left the house, the funeral home came to pick my Dani up. I remember getting dressed to go to the funeral home and everything after arriving the place is blurry to me, I don’t remember much. Friday April 3rd was her funeral and I remember attending, and I remember lots of people came for support, but I don’t remember details. Everything is a blur. Seeing her lay on that huge casket without moving, playing, laughing, was too painful for my brain, to on top deal with everything else so I shut down. I know people talked to me because I could see their mouths moving, and I must have answered for sure, I just don’t remember a word I said; I must have been in autopilot.

It’s been a year and 3 days and the pain, the desolation, the sadness, the anger, the rage, the guilt is still there, and no amount of therapy can take it away. I’ve become almost a master in hiding my feelings and “pretending” everything is ok, especially in front of the kids, but I’m not ok, I will never be ok. A third of my heart was ripped out of my chest, so I cannot be ok, no one can, and that’s ok. For me that’s ok. I still silently cry when I pass the baby’s isle at the supermarket, or drive by Dani’s school, and my heart still shrinks every morning at 7:40 am.

The hours spent caring for this child have become empty spaces in my daily routine, and nothing fills them up. Therapists haven’t worked, talking to friends hasn’t worked, nothing seems to be working so inevitably I became anxious until I realized, there is no cookie cutter way to deal with the loss of the greatest love of my life. As a therapist I know my fellow colleagues are trained to treat loss the same, and it isn’t the same for everyone, it cannot be. I need to find ways to deal with this on my own, and I’m ok with living without ever finding them at all. I’m ok with missing her and thinking of her until the day I die. I’m ok with my new routine of going to her room, kiss her favorite toys, wish her an awesome day wherever she is and back before bed to say goodnight. At least the anxiety has gone away, the pressure to “please” others is gone, and that’s progress for me.

My daughter didn’t kill anyone, didn’t harm anyone, didn’t point a gun to anyone nor was found stealing from anyone. She never harmed a soul in her life, it wasn’t a matter of divine intervention, no magical being wanted her near, there was no accident that caused her death, it was life; random unpredictable life. Her little body wasn’t prepared to deal with puberty, but she beat the odds, because we both worked hard so she could grow with us and stay with us longer. Just thinking of that, the bond and love we shared, despite the sorrow I now feel makes me incredibly happy.



Manuela Valenti is a Psychopedagogist, Professional International Artist, Fashion Model, soon to be Chemist, wife and mother of 3. She is the CEO and founder of By Valenti Organics, Manuela Valenti Studio & Gallery and other companies.


http://www.byvalenti.com


Monday, April 4th, 2016  |   permalink  |   16 Comments  |  
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16 Comments... add yours

  • laurie says:

    I cannot even begin to imagine what you’re going through. I’m so sorry for your loss.

  • Cynthia Y says:

    I don’t normally comment on anything…but I had to on this. You lived the nightmare that ever mother fears – the death of your child and were brave enough to share the raw experience with us. Thank you for writing such a powerful piece.

  • Erica says:

    I just found your blog by googling the loss of s special needs child. 8 days ago I walked into my almost 7 year olds bedroom and found him exactly as you explain. Beyond shocked. We don’t know what happened either. Thank you for sharing

    • Erica, I’m so, so, sorry for your loss. My heart aches for you and your family as I know too well the pain and sorrow you’re all going through. I’m living with the pain and the sadness everyday of my life, and reliving every instant of it as if it just happened this morning. There are no words that would calm your pain, and I won’t even dare say your baby is in a better place, because there is no better place for your baby than with you. If there is anything I can help, even if it’s just to talk, I’m here for you. My most sincere condolences and a warm heartfelt hug for you and your family.

      Manuela.

      • Erica says:

        Thank you. The shock is starting to wear off. Just doesn’t seem possible he isn’t here with us anymore. We are happy that his earthly burdens are gone are his soul is in heaven but so sad he’s not here to see everyday and to care for. Whenever I think of finding him it just makes my stomach flip flop and it’s like my heart skips a beat. I read how you lost other children as well. We buried our daughter 8.5 years ago. She was born too soon for intervention. Hugs to you

  • Anne MacLellan says:

    Erica,

    I also lost my child with special needs several months after you (July 15th, 2015). Graham was 25, but was a child in many ways (he was nonverbal, had severe autism, an intellectual disability, bipolar disorder and epilepsy.) He lived in a wonderful group home and was found in his bed by staff who went to wake him up. (he died of SUDEP – sudden unexpected death in epilepsy). There is so little out there about losing a child with special needs. My husband and I belong to a group for parents who’ve lost adult child but we are the only ones who’ve lost a child with special needs. It’s so different, most people don’t understand.

  • Carol says:

    July 29th 2016. That was the last day I hugged my special needs daughter. She was 26 years old. She was my only child. She was my everything. All that you shared, the blur, the shock, the loss of part of yourself. Too true. Our house is so silent now. All the laughter, smiles, hugs, just gone. Did she know? Was she scared? Did she try to call for us? Questions I ask myself everyday. My daughters name was Manna, and she was the most beautiful vibrant soul I ever met. Thank you for putting into words what I am not yet able to.

    • Carol, I’m so, so sorry for your loss… I deeply feel for you as I know too well what you’re going through. We share the same pain, the same loss, the same silence, the same anguish, the same desperation… We’ve been touched by the purest most unconditional love there is, and it’s impossible to let go or move on, as I’m told time and time again I should.

      I’m here if you need someone to talk.

      Love.

  • Annette says:

    Thank you. I just lost my 22 year old daughter, Shelby, from medical complications from previous surgeries. She had cerebral palsy. I buried her yesterday with a fourth of my heart. Reading you article I can identify!! It’s the unconditional love & care of that innocent child that needs you. We have no resentment of caring for like that. It’s a part of who we are. I was good with that. Losing that routine, everything, that’s such a huge part.

    • Annette, I’m really so, so sorry for your loss. My most sincere condolences to you and your loved ones. There are no words I could write that would even come close to ease your pain.

      I apologize for the late reply. Getting closer to my daughter’s death anniversary hit me harder than I thought, and I’ve been completely off the grid for months trying to unsuccessfully catch my breath and figure out what to do every hour that passes by. This is the second year without my love, and it’s well… not a good one. For the looks, this will be my “normal” for years to come.

      Loosing everything that is/was your daily routine, your world for so long, leaves you without a floor to stand on. But that unconditional love that goes away is the one that takes not only literally your breath away but a piece of your heart with it.

      Shelby was really lucky to have you as a mom.

  • Gisele Bourque says:

    June 14 will mark the one year anniversary of my daughters death. She was 38 years old, her name was Nadia. I am doing better than I thought I would. I miss her so much but I don’t miss the anxiety and stress that came with it. But I would give everything to be able to touch her again. I have the same routine of going into her room every morning & kissing her picture & wishing her a good day. I still have her clothes, they still have her smell.
    I have accepted that a part of my heart went with her that day but I still enjoy life. It would be ashamed to have given her everything we could for 38 years and not live a good life. We plan to honor her life by being happy!

    Gisele

    • I apologize for the late reply. It seems I cannot catch a break. I lost my mother back in May of this year, so I’ve been away trying to cope with everything.

      I’m so, so, sorry for your loss. It cannot be easy for you. I’m not yet at that point where I can enjoy life as you do. My heart still keeps a beat on a daily basis when I think of her, and I cannot catch my breath most days. But I’m still here, figuring things out as I go, as I’m sure you do too. Whatever helps on the day-by-day as wishing her a good day, or hug her clothes when you need it the most, if it helps keep at it. We each cope with the loss in our own ways, and there isn’t a right or wrong way.

      Manuela

  • Mary says:

    This was beautiful. We all deal with a loss in our own way. They take a piece of you with them but that’s ok cause we may not be able to see or touch them but they are still around us an that conection helps an get through life.

    • Thank you Mary. These children definitely take a piece of your heart with them when it’s their time to leave, and throughout their lives and even after, they change us in ways impossible to imagine. The memories, the laughs, the unconditional love is what keeps us going, even after they’re gone.

  • Ullanda Thompson says:

    Today is a bad day for me. I loss my Domanique on 16 September 2016. She died 2 months 9 days shy of her 16th birthday. We didn’t get to do a sweet 16. I miss my baby. Her little brother and sister help but 16 years is a long time to love someone and it hurts me everyday she’s not here.

    • I’m so, so, sorry for your loss Ullanda. I wish I could tell you the pain goes away, but it doesn’t. I’ve learned to “hide it” although I find myself bursting in uncontrollable tears still now and again. My two boys help, but it isn’t the same as you say. I’m here if you need to talk.

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