Archive for the ‘Stress’ Category

I’LL BE THERE FOR YOU (The Rembrandts)
December 9, 2019

We’re closing our 6th day of pretty much living at Children’s Hospital LA (CHLA).  Cole was admitted last Wednesday and will be here until the end of the year, maybe just into 2020.  We’re surviving.  Actually better than surviving.  We’re getting into a routine where we’re both hanging out with Cole during the day and then one of us goes home to attempt a good night of sleep and to spend some time with Luna, our poor, needy ten year old Golden Doodle.  Then it’s back to CHLA.

Cole’s days are filled with lots of nurses, doctors, residents, and various support staff popping in for vitals, to add weight to his traction, to help us with anything we need – like transferring him from the bed to the traction wheelchair for an outing or helping with other needs.  He’s also had a barrage of very welcome and much appreciated visitors.  At first it felt overwhelming but now that he’s more settled and doing remarkably well with the traction, the visits have been a great source of joy.  For him, and for us.

It took me a long time to understand that it’s okay to ask for help, support, or care.  Early into my parenting journey, I did my best to be an island.  I have always been a pretty self-sufficient person and in fact often served as the maternal one amongst my pack of friends when I was single. I’m pretty good about jumping in when someone is in need and am always at the ready to help. I’m appreciative when someone recognizes that I am in need, but in the past it was hard for me to fully accept it.

Nowadays, I try to ask.  I reach out to friends when I’m struggling and I have tried to build a support network so that I don’t have to go through things alone (I should clarify that my husband is the biggest part of my support and a great partner – but he’s also sometimes going through the same things as I am such as Cole’s current medical situation).  I was part of a special needs mom’s group for a while, which I think is where I  both realized how much I like having people in my life who understand some of the unique parts of my parenting experience, and how valuable regular sharing is to me.

I’ve learned that being an island is not what’s best for me.  I like knowing that people are thinking of me and wishing my family well, particularly in high stress situations like the traction and looming spinal fusion surgery.  I also really like being able to show the same support and care to my friends, near, far, and in the social media stratosphere. It’s one of the most positive aspects of social media – the strength and heart of many.  I know not everyone feels this way but having gone through some of Cole’s surgeries quietly and the more recent ones more publicly, I can honestly say that the impact of sharing truly helps to quell fears, stand tall, and to make it through the long days and nights.

So keep the love coming and know that if ever you find yourself in need, I’ll be there for you.

UNDER PRESSURE (David Bowie & Queen)
November 22, 2019

A friend recently told me about a study that concluded that the chronic stress special needs parents experience is akin to the stress experienced by combat soldiers.  It’s a shocking comparison but the reality of the continued level of care of a special needs child adds complexities to the lives of the parents for their rest of our lives.  I get it.  My son is eighteen now.  Nothing about his care has changed in terms of his needs except I’m now eighteen years older and he’s a lot taller and heavier.

While we strive to provide him with as much independence as possible, and with a rich life outside of home and school, it doesn’t come easy.  As parents of special needs children know, nothing about our children is easy.  We fight for adequate, affordable medical care, inclusive education opportunities (for which we have annual IEPs that require a lot of prep and determination to ensure that our child’s rights are protected, his needs met, etc.), we work hard to maintain friendships and social opportunities, we bathe, dress, transport, transition, entertain, feed, tend to personal needs, fight bureaucracy and support our children in every way imaginable.  We do it with love and care because we love and are dedicated to our children.

The considerations that go into planning anything (restaurants, friend’s houses, travel, long outings) is daunting. You don’t just jump in the car and go (and you can’t send him off in someone else’s car because you need a wheelchair accessible van).  You need to ensure that your destination is wheelchair accessible, that you have access to reasonable bathroom accommodations for changes, that your friend’s house doesn’t have a steep drive way with multi level floors or steps leading up to the house, that the restaurant can accommodate a wheelchair, and more.

I also recognize how fortunate I am to have a partner who shares all of the parenting demands.  He’s highly involved and supportive of both Cole and me.  Not all families have the luxury of two able bodied, loving, involved parents. 

But it isn’t easy and there’s rarely a break.  Our kids needs don’t change as they age.  While typical peers are walking, talking, dressing themselves, making friends, feeding themselves, showering, toileting, going to school, learning to drive, going out with friends, attending concerts or movies or dating, we are still taking care of our kids.  When typical peers are heading to college and moving out on their own, we are still taking care of our kids needs.  We’re just a lot older, which makes some of it harder.

The physical nature of caring for a child like mine is that it puts a lot of stress on your body, especially as it ages, between the transfers, transitions, lifting (my son, thankfully, is small – just around 80 pounds), and the eighteen years of interrupted (and sometimes complete lack of) sleep.  There’s no one else who is going be there, so you just do whatever needs to be done, no matter what state you are in.

A lot of us have kids with medical issues on top of everything else, so when my son exhibits some reflux occasionally, I begin to worry that his Crohn’s Disease is acting up, and when he’s scheduled to have a major surgery that has significant risks and requires a lot of juggling to get pre-op appointments and insurance issues lines up, there’s stress. When he comes home wet from a leaky g-tube, is there blockage, does he need a replacement, or incompetence? There’s also financial stress in that therapies, equipment, supplies and medical treatments, medications and procedures all come at a cost.  And more stress.

My husband and I both work full time as well so there’s the added pressure of ensuring that work doesn’t drop and that we maintain good standing at our respective jobs.  We are fortunate in that we both work for companies that have flex time and where we can work remotely if needed, like from the hospital while our son is recovering from a surgery for a week.  We are fortunate that we have insurance, even if it’s not always easy to access certain benefits.

We don’t have family around who can physically help with childcare.  We have found a couple of people who work really well with Cole and who, when available, are happy to spend time with him and to support us as well.  Of course, at a big financial cost.

The idea of any kind of balance in your life when you have a 24/7 child and work full time is laughable. There’s not a lot of “me” or “us” time in your days – ever.  The notion of self-care is just that – a notion – not a reality.  As vital as self-care is, it’s just not something finds its way into daily routines with ease or consistency.

It’s hard to maintain friendships but I strive to do so because my friends are my sanity and lifeline.  Without regular girl’s night outs, I’d lose my mind.  The conversations, laughter and love feed my soul.  It’s also hard to keep a marriage healthy when, as a couple, we have virtually no home time alone and rely on occasional date nights for some much-needed adult time.  At this stage in life, having your social life still dictated by childcare availability is stressful and simply requiring childcare adds an additional cost to going out. Childcare often ends up costing more than the actual date.  But no going out alone sometimes is not an option.  It nourishes us and gives us much needed time together.  It’s not a luxury.  It’s a necessity.

Following the conversation about the stress comparison, I had what became a heated conversation with someone close to me who I thought had a sense of what my life is like and understood the pressures I live with and the total long term impact and worry exists in my life.  Was I ever wrong.  Instead of compassion about my concerns regarding the upcoming surgery and particularly how hard the recovery will be for Cole and us, I was admonished for getting upset and raising my voice. My heart broke.

While I don’t need or want recognition or accolades for doing what any parent would do in the same circumstances, a little understanding and care goes a long way.  I love my son to the core, and I love being his mom.  Nothing is more important to me than him being happy and living a life that is rich, full of experience, love and joy.  But in that existence, we as parents, also need to have our own little bits of pleasure, peace, and ourselves.  Without it we would implode.