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My Angel is Always in my Mother’s Day Picture

Twenty-three years ago, my first-born child, Connor, died from Sudden Infant Death Syndrome.  He was born in April and I’ll always remember how incredibly significant that first Mother’s Day was for me.  Little did I know at the time that the next Mother’s Day I would be hiding in my house with a torrent of emotions overwhelming me.  Connor died August of that same year at 3 mos. and 24 days old.

Needless to say, the most powerful emotion was raw, agonizing grief.  It’s impossible to describe the physical pain you feel when your baby has died.  And on Mother’s Day, when other moms are celebrating, you realize how incredibly alone you really are.  You can’t talk to your other mom friends because both you and they feel so awkward, unsure of what to say.  As a friend how do you celebrate the day while someone else has lost her reason for being?  And as the person who is grieving, how do you rise above your sadness to smile and wish your friend a happy Mother’s Day?  No, for everyone involved, it’s much easier to hide in your home and wait for the day to be over.

And then, to be honest, there’s the anger and resentment.  Why would God allow this to happen to you?! I’ll admit to many times thinking of abusive and negligent parents whose babies were still alive. Yet for me, who did everything right, my baby is dead.  It takes many years for this anger to abate. One day I finally realized that no one is immune to tragedy and that everyone has their own story.  The answer to the question “Why me?” is “Why not me?” Who am I to never experience sorrow or tragedy?

I went on to have three more amazing children who now are 22, 18 ad 15 year’s old.  Each of them in their own way has helped me heal. The pain has softened but there will always be a sense of sadness and longing for what might have been.  I channeled my grief into activism and am now the CEO of First Candle, the non-profit that provides bereavement support to families who have lost a baby to Sudden Unexpected Infant Death and Stillbirth.  When I speak with a young mom who has recently lost her baby I’m transported right back to that moment when my own precious baby died.  It’s hard to believe it’s 23 years ago.  In some ways it feels like a lifetime ago.  In truth I am a different person, wiser and at peace.  What I can offer young moms is hope. When they see me, they see that indeed you can survive the heartbreaking grief.

When my second son Spencer was born I started celebrating Mother’s Day again.  I love looking at the picture every year as my family grew and my children have become young adults.  And somewhere in those pictures I always see their little guardian angel, their brother Connor. It could be a butterfly, a sun beam or an orb over one of their shoulders, but I always know he’s there, my first born who made me a mom that first Mother’s Day.

 

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Why I Love the Two Disabled Men in My Life

For those of you who follow my blog you know that my 22-year-old son Spencer is Intellectually Disabled and my husband Greg has Primary Progressive MS and is confined to a power chair. For those of you who aren’t familiar with my story, Greg is my second husband and was only diagnosed 4 weeks after our wedding. He went from walking at our wedding to being immobile within 3 years. I can’t count how many times in my life I’ve heard the words “I could never deal with everything you do.”

Caring for two people with disabilities isn’t always easy but loving them is.

First I’ll share the hard parts. There are so many everyday things that you take for granted when you are able-bodied – dancing at weddings, going on a hike in the woods, visiting friends whose homes aren’t wheelchair accessible, spontaneously planning a weekend getaway. These are all things we can’t do together, and it definitely makes me sad. And yes, sometimes I get cranky when I have to do the majority of the work around the house and work full time.

As a mom it hurt as I watched other kids Spencer’s age get their driver’s license, graduate high school then college and fall in love for the first time.

But the one thing that truly terrifies me is what happens after I die to Spencer and Greg if I were to die before him? The profound weight I feel being completely responsible for two people I love is at times overwhelming.

It’s difficult for people who have able-bodied, neuro-typical loved ones to fully comprehend how hard it can be. I get that. Prior to my life as a caregiver I didn’t either.

Does this sound tough?

I won’t lie – it is. But here’s the amazing side of my life with Greg and Spencer.

Greg is my hero. He has not allowed his disability to define him. Prior to his diagnosis he was a pro-golfer. Today he is on the board of the Stand Up and Play Foundation, an organization that donates specially designed golf carts to courses around the country. The Paramobile allows people with disabilities and spinal cord injuries to play golf and other sporting activities. Greg now teaches the game he loves to stroke victims, military vets and others with intellectual and physical disabilities. He also keeps himself in shape by daily chair yoga sessions and working out on the Myocycle, a device that uses functional electrical stimulation (FES) to help people with muscle weakness or paralysis to exercise by pedaling a stationary bike.

Even more than his commitment to be his best self and desire to help others is his unwavering determination not to be a burden to me. It is a rare day when Greg complains about his disability, even though he has every right to.

I sometimes forget how incredibly hard it is for him to manage seemingly easy tasks such as maneuvering his power chair to get a dish from the cabinet or put something in the microwave. I know it upsets him that I have to do many of the tasks around the house that he would prefer to do – mowing the lawn, snow blowing, leaf blowing, even changing light bulbs in ceiling fixtures. I love that he wants to do these things as I also know there are many able-bodied husbands who don’t help around the house even when they can.

One of the greatest challenges for him is getting into bed and I have to help swing his legs up. Until COVID I used to travel a great deal for business and if one of the kids wasn’t around to help him get into bed he’d sleep in his chair. Last month, after my friend passed away from a long battle with cancer I knew that I needed to go away by myself and regroup. Despite this being difficult for Greg, he encouraged me to go, never once complaining.

I know Greg doesn’t believe me, but I don’t see the disability I simply see the man. The guy who always buys me the perfect gift. The man who I enjoy spending time with no matter what we’re doing. The goofy stepfather who makes my kids laugh and has been known as Steppy since the day we got married.

As for Spencer he is hands down the kindest and happiest guy you’ll ever meet. While he can’t drive he takes several walks a day, sometimes to Subway or Dunkin Donuts and other times just around the neighborhood. Everyone knows him and he knows them. He’ll stop and have conversations and tell them what’s going on in his life. My heart melted the day he told me that when he gets a girlfriend he knows that the most important thing is to “respect her and treat her with kindness.” While he might have trouble reading a book he can read a person’s emotions perfectly and when he senses someone is upset he’s the first person to offer comfort. Yup, that’s my son.

My daughters and step-kids love Greg and Spencer unconditionally. They too see beyond the disabilities to the men they are. And in my heart I know that, should anything happen to me, they will be there caring for both of them.

When Greg proposed to me we had no idea this would be our future. When Spencer was born I had no idea I would be caring for him the rest of my life. None of it matters because I love these two men just as they are.

 

Are you stressed by all of the demands on your time from family and work? Get my free guide 5 Steps to Create a Chill Life.

If you would like to join a group of supportive women in midlife who are ready to get past fear and self-doubt and live life joyfully and abundantly, head over to Midlife Mavericks: Fabulous, Fierce, Females!

What It’s Like on My Baby’s Birthday 23 Years After He Died

This Sunday is Easter.  It’s also the birthday of my sweet angel Connor, my first born who died of Sudden Infant Death Syndrome.  He would have been 23 years old.

His birthday has only fallen on Easter once before – the first year he was gone.  I still recall the pain I felt that day.  Easter has always been one of my favorite holidays.  The beauty of spring and the hope of rebirth.  It was impossible for me to wrap my head around how this beautiful day could bring me such sadness.  All I could think about was how unfair life was that my baby wasn’t with me anymore.

And now here I am 23 years later.  Does it feel different this year?  Yes. The pain isn’t as raw.  It’s more of a dull sadness that hits me at moments I least expect.  For those of you whose grief is still new and all-consuming please know, you’ll get to where I am.  As the Executive Director of First Candle I frequently speak with families who have just experienced a loss.  They look at me with hope.  Seeing me let’s them know that somehow, they will go on.

But this isn’t a typical Easter or year.  Because of COVID 19 we’re isolated from one another and witness the struggles of so many people both financially and emotionally.  That first year I survived Connor’s birthday with the help of friends and family who surrounded me with love and hugs.  My heart breaks for families who have lost a baby and don’t have that support right now.

Today my husband’s dad is being buried.  We can’t attend because it’s too far away.  His sister will Facetime us so that we can be virtually present.

This weekend we will plant a tree in honor of Connor and his dad.  For me the tree represents hope through loss.  The year Connor died I received a Rose of Sharon plant.  Over the years it grew to over 12 feet tall.  When I looked at it, it was a reminder of just how far I had come in my own grief journey.  We moved from that home so now we will plant a new tree and our grief journey will continue.

 

Are you stressed by all of the demands on your time from family and work? Get my free guide 5 Steps to Create a Chill Life.

If you would like to join a group of supportive women in midlife who are ready to get past fear and self-doubt and live life joyfully and abundantly, head over to Midlife Mavericks: Fabulous, Fierce, Females!

What it’s like when your baby has died

My life is divided into two parts  – before my son’s death and after. Connor was my first child and he died of Sudden Infant Death Syndrome (SIDS) at 3 months and 24 days. I barely remember the person I was. I do know that I was carefree and naive and at the same time arrogant. Arrogant to believe that unspeakable tragedy could only happen to other people. I credit Connor’s death with making me empathetic – for recognizing that everyone has a story and if we open ourselves up to people we connect through our vulnerabilities.  

The time between his birth and death is also a blur – after all it was only four short months.  I remember the normal first-time mom anxieties of worrying how to hold him to give him his first bath. But I also remember quickly falling into a wonderful routine.  His death was like a bomb exploding – it happened so quickly without any warning.  What began as a perfectly ordinary day changed in a second with the phone call from the daycare provider who uttered one of only two sentences I remember from that day; “There’s a problem with the baby. He’s not breathing.”  After that it was the chaos after the explosion and all that was left was me standing in the rubble of my life. 

As the CEO of First Candle I speak to hundreds of bereaved parents – some within days of their baby’s death and others many years later. The new ones always ask me the same question – “When do you start feeling better?” There’s never an easy answer to that. Again, it’s similar to the bomb analogy. The initial pain and trauma thankfully don’t last forever but there are times when it comes back such as seeing your friends’ babies who are the same age your child would have been. The first birthday after your child has died and the first anniversary of his death are especially painful and instantly take a parent back to that day when life changed forever.

Researchers now agree that the grief a parent experiences after the loss of a child is a type of PTSD.  I was one of the lucky ones – I had the support of my community, family, friends and co-workers.  Others aren’t as fortunate. There are parents who, after their baby has died, must deal with insensitive investigators and state workers and are forced to re-enact the time of death using a baby doll. Families who face the reality of having their living children removed from their home because they are suspected of abuse. Recovering from these experiences takes years and even decades.

For the first year after Connor’s death I wouldn’t let anyone take a picture of me.  I just couldn’t bare to see how sad, old and tired I looked.  Physical ailments are common among bereaved parents.  Grief causes our immune system to crash and induces chemical reactions in the body what can last over a long period of time.

  • Digestive problems such as loss of appetite or overeating
  • Sleepiness and sleeplessness
  • Heartache and chest pain
  • Forgetfulness and memory loss
  • Cognitive changes including general confusion and difficulty concentrating
  • Emotional changes including sadness, crying, and prolonged weeping
  • Respiratory problems including shortness of breath and asthma
  • Panic attacks; i.e., sweating, rapid heartbeat, numbness, and tingling
  • Confusion with an associated feeling of loss of control or a feeling of “losing one’s mind”

I became pregnant very quickly after Connor died which was the right decision for our family, but my second son has intellectual disabilities and to this day I wonder if it’s due to the stress of grief I was experiencing. 

As a society we’re not good at dealing with grief and it can ruin relationships. The rate of divorce is high among parents who have lost a baby. Men and women often express grief in different ways and it’s difficult to understand if a spouse appears to not care or shut down. We often receive calls from men who are afraid to grieve in front of their partner because they feel they need to be “the strong one.”  Months after my son died a friend was talking about how exhausting it is to have a toddler. I felt like screaming that I wish I had the chance to be that exhausted and had difficulty getting over what I perceived as an insensitive and thoughtless comment.

October is Pregnancy and Infant Loss Awareness Month. If you’ve experienced a loss, what advice would you give to a newly-bereaved family?  Share below.

 

Are you stressed by all of the demands on your time from family and work? Get my free guide 5 Steps to Create a Chill Life.

If you would like to join a group of supportive women in midlife who are ready to get past fear and self-doubt and live life joyfully and abundantly, head over to Midlife Mavericks: Fabulous, Fierce, Females!

When it comes to fear “trying” isn’t enough

On Sunday I spent three hours with my daughter helping her overcome fear.  She’s an All-Star cheerleader and, for those of you who aren’t familiar with the sport, it’s nothing like sideline cheer.  It’s extremely competitive and requires a great deal of strength as there’s a lot of tumbling involved.  My daughter’s been doing one of these tumbling moves for several year and then, one day, she couldn’t do it anymore.  It’s not because she injured herself, it’s because she developed a mental block.  Suddenly, she had an all-consuming fear of doing it.  Something that used to come so easy to her was literally impossible for her to do.  Or so she thought.

A mental block isn’t uncommon in the All-Star cheer world.  At some point though, the athlete needs to overcome it. 

Both her coaches and her older sister (who is an also an All-Star cheerleader) worked with her in every way to get her to “just throw it.” Over the past few weeks it’s been building up in her head until now it’s a big thing.  Like a REALLY big thing.  Losing her skills has consumed her (and me) to the point that she’s in tears every day.  If she doesn’t through her tumble pass her coaches will be forced to take her off the team.

So yesterday, in the sweltering heat, I sat there watching her on the trampoline trying to force herself to throw her back handspring.  I encouraged, I threatened, I tried to piss her off – anything to JUST DO IT.

Her sister and I both told her, all the classes in the world won’t help, she simply must decide that her fear of doing it will not overpower her love of cheer.  There was about an hour of her screaming “I’m TRYING” and me screaming back “DON’T TRY JUST DO!” I’m sure my neighbors think I’m a horrible mom.

And then, after three hours, something clicked, and she did it.  And then she did it again.  And again.  She stopped trying and just did it.

That really is what it comes down to with fear isn’t it?  You can’t try you just need to do.  Whether it’s tumbling, leaving an unhappy marriage, quitting a job or anything else that brings fear, at some point you need to realize that “trying” isn’t going to change the situation.  It requires action.  Yes, taking action against fear is hard – it’s like standing at the edge of the diving board and deciding you will take that next step and dive in.

What are you trying to change in your life?  What action do you just need to do?  Share your story and let’s support each other.

 

Are you stressed by all of the demands on your time from family and work? Get my free guide 5 Steps to Create a Chill Life.

If you would like to join a group of supportive women in midlife who are ready to get past fear and self-doubt and live life joyfully and abundantly, head over to Midlife Mavericks: Fabulous, Fierce, Females!

My Daughter’s Ready to Leave – I’m Not

Last night I spent time researching colleges with my 16 year-old daughter.  She commented that she’s anxious to figure out which colleges she wants to apply to and get it done.  She can’t wait for college.

She’s ready to take the next step in her life.

I’m just not sure I am.

Recently, we were with some friends and I was reminiscing about something cute she had done and her comment – with the requisite eye-roll – was “Mom, I was..like.. 12!” To me it feels like yesterday.

I wish I had every minute of her life on video so I could look back. Trying to capture moments on my phone has never been my thing however.  I don’t want to put something between me and living the experience but now I think back and I’m sad because there are so many moments I can’t remember.

Probably one of the reasons for my memory lapses is the stress I was under.  When she was young I was going through some major drama –a divorce, major financial problems, my current husband was diagnosed with MS and my dad was disappearing into Alzheimers.  I had a lot on my plate and it was difficult not to simply be in survival mode.  I try to live without regrets but I wish I had been better able to put those feelings aside and focus on the good stuff.  To breathe in every scent, feel every touch, view every smile and hear every laugh.

At the same time that I’m trying to capture every moment with my older daughter, I want to also be present for my younger daughter.  It’s a tightrope walk, especially for someone who was an only child and had my parent’s sole attention.

There are so many “firsts” and “lasts” coming my way it’s sometimes overwhelming.  But I know I need to embrace them and let life play itself out.

I think back to when I moved to Los Angeles when I was 22 and wonder how my mom let me go.  I had no idea how hard that must have been.  When I asked her about it recently she simply said that she knew it was the right thing to do.

So, like her I’ll let her go when I need to and accept that it’s a new chapter in both our lives.

 

Are you stressed by all of the demands on your time from family and work? Get my free guide 5 Steps to Create a Chill Life.

If you would like to join a group of supportive women in midlife who are ready to get past fear and self-doubt and live life joyfully and abundantly, head over to Midlife Mavericks: Fabulous, Fierce, Females!

 

 

What Every Parent of a Child With Intellectual Disabilities Fears

Today I realized that I’m getting closer to the edge of the cliff.  What cliff?  The cliff my son will go over unless mama starts taking charge.

My son Spencer is 19 years old and has intellectual and development disabilities – IDD for short.  If you aren’t familiar with how the “system” works, people with IDD can remain in school until they turn 21.  In addition to academics, they receive Occupational Therapy, Behavioral Therapy, Speech Therapy, Physical Therapy and other support services that help them function in the real world.

And then, at 21, it all stops. They go from a regular routine of school and programs to nothing.  As their parents, we’re left to figure out how to keep them busy during the day so that we can still work (because not working will never be an option for us) and they can still experience personal growth rather than sitting on the couch all day. Within the special needs community, we refer to the time when our IDD children are forced to leave school as “falling off the cliff.”

Depending upon which state you live in, your now adult child will hopefully receive some financial assistance towards an aide to assist him with his daily living, a day program (which simply means activities to keep him occupied), a job coach and possibly residential assistance (which means a small amount of money to be used towards rent.)

This probably sounds great – as if the person is set up for life.  The reality, however, is far different.  For people with profound disabilities the financial assistance doesn’t go very far and certainly doesn’t cover all the support the person needs.  In Connecticut where I live the residential financial assistance is non-existent due to financial mismanagement.  There’s a waiting list of over 2,000 people.  And while it’s great to think they will find a job, how often do you see people with severe disabilities working in offices, restaurants or retail establishments?   Even for a person like my son who is considered “high functioning” but has an extremely limited attention span, talks to himself and is in constant motion when he’s not sleeping, the prospects of finding and maintaining a job are still limited.

Very often people with IDD end up living with their aging parents who still need to support them.  Parents in their 70s and 80s who are caring round the clock for their adult children, some who must be bathed, fed and carried, now in their 40s and 50s.  Parents who are terrified wondering what will become of their child once they die.

For those of us lucky enough to have other children we hope that they will care for their brother or sister but feel equally guilty knowing how this will impact their own lives as they start a family and build a career.

As my son gets closer to the edge of the cliff my main goal is helping him to become independent and a valued member of the community.  It would also be nice for him to have a social life – not really that much to ask for.  This requires me teaching him how to do things that many parents take for granted – learning to use his smart phone to communicate, shopping for groceries and making healthy choices, cooking his own food, washing his own clothes, using public transportation and, eventually, holding down a job.  Sure, the school helps and I’m fortunate that Spencer is in one of the best in the state, but it still requires a great deal of time and effort from the family.  It’s a full-time job.

I’m also fortunate to sit on the Board of Directors of STAR, a not–for-profit organization serving individuals of all ages who have developmental disabilities, as well as providing support services to their families.  I’ve gained more information about how I can help Spencer than most parents normally would.

And so, I’m beginning a series of blog posts chronicling my journey to the edge of the cliff and my goal of building a safety net to keep Spencer from going over.  My hope in writing these posts is that I will not only help other parents who are in a similar position but also enlighten everyone on the struggles parents of children with IDD face.

I welcome thoughts, comments and questions and hope we all can support one another.

Residential Challenges for Intellectual & Developmental Disabilities

Disclaimer – I have a material and/or financial connection because I received a gift, sample of a product and/or compensation for consideration in preparing to write this content. All opinions stated within are my own.

When you’re the parent of a child with intellectual and developmental disabilities (IDD) there are a lot of fears that keep you up at night.  Probably the biggest issue is what will happen to your child once you die.  Where will they live?  Who will care for them?  What sort of life will they have?

I used to feel as if I had all the time in the world before I needed to worry about these things but in the blink of an eye my son is on the brink of being an adult – and it scares the crap out of me!  For parents of neuro-typical kids the path is clear – either vocational school, college, a job or possibly enlisting in the military.  From there they usually are launched to their independent future.  This is far from the case for parents of children with Intellectual Disabilities.  Here’s the reality – our kids will never have an independent future.

As their legal guardians, we need to plan and pray.  The solutions can vary dramatically depending upon where you live, what supports you have and your child’s ability.  The good news is that our children do have more options than previous generations.  For many families a state institution used to be the only solution.  There was no thought to where the person would live, how they would spend their time or even, quite frankly, their quality of life.  Now, each person is considered as an individual and the focus is on person centered planning.  This requires a team of people who care about your child to be involved helping map out a plan for his future.  Most importantly, the child is involved in this process.

There are no easy answers however.  Money is always an issue.  Many people with IDD  can’t find jobs.  A vast majority of people with IDD can’t live on their own so a roommate situation is necessary and finding someone who’s compatible isn’t always easy.  Location is also an issue.  Most people with IDD can’t drive and need to rely on public transportation. Do you see why most of us lay awake at night?

As I said, the solution for every family is different.  I feel lucky.  My son has a strong support system, especially two sisters who understand they will be taking care of him and are happy to do so.   He is able to care for himself and will probably only need an in-home aide for a few hours every day to help him.  There are now home monitoring systems which will allow me to check in on him through video monitors, get alerts if he hasn’t come home and automatically shut down any appliance he may have left on.

I highly encourage any parent who has a child with IDD to start planning as soon as possible.  It’s never too soon.  Here are a few first steps to start planning for your child’s future living situation:

  • Get involved with ARC , the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities and their families.
  • Learn more about the funding and services available in their state through DDS.
  • Talk to other families in your community who have a loved one with IDD to learn about their solutions.
  • Learn about tax savings through the ABLE Act.

What plans have you made for your child?  What resources have you tapped into?  Share your stories here.  We all need to support each other.