I Won’t Back Down (Tom Petty)

October 6, 2021 - One Response

Today is World Cerebral Palsy Day. It’s not a celebratory recognition day but more of an informational and support day. An advocacy day. The fact of the matter is that cerebral palsy is never going to be a welcome diagnosis. It’s a lifetime, uncurable diagnosis. Cerebral Palsy impacts over 17 million people worldwide so it’s far more common than most people recognize.

From the start, learning your baby has cerebral palsy triggers feelings of guilt, grief, uncertainty, sadness, and fear. It also incites our need to protect, learn, advocate, educate, and more than anything love. Cole’s birth was one hundred percent not what I expected. I had a healthy pregnancy. I loved being pregnant and the love I felt for the growing baby boy in my belly felt so intimate and unlike anything I’d ever felt. I fantasized about his arrival and the joys of watching him grow and thrive and meet all of life’s milestones. I imagined the kind of boy he’d be and all of the things we would share together, as a family.

However, life had a different course for us to navigate. Cole arrived via c-section, not breathing for nearly 12 excruciating minutes, ultimately requiring five weeks of NICU support before he could come home. It was determined that at the tail end of my pregnancy, I was exposed to a child who likely had Fifths Disease (Parvovirus B19 – a fairly common childhood virus that has cold like symptoms with rashy pink cheeks, also known as “slapped cheek rash”). It’s generally harmless but can be fatal to fetuses in utero. In our case, I showed no symptoms or illness, nor did I have any awareness of my exposure, but Cole and I both had antibodies, discovered by the battery of tests run following his birth. It caused him to retain almost a pound of excess fluid, which led to him to stop breathing at birth.

Thankfully, he defied the odds and “the next hours” became “tomorrow” and “tomorrow” became “next week”. I had the most basic understanding of what Cerebral Palsy meant. I have a 2nd cousin, who was in my dad’s generation, who has C.P., though no one ever called it that. In the early weeks and months, it didn’t matter. What mattered was doing everything possible to support Cole. He went home after five weeks in the NICU with a g-tube for feeding because he wasn’t able to suck.

No one really helps to prepare you to parent a child with cerebral palsy. It’s never part of the imagined outcome of your baby’s story. Once home, we quickly got into a crazy routine of eat, sleep, pump, sleep, eat…repeat. We were blessed to have a friend who happened to be a pediatric physical therapist, who kindly taught us a series of exercises to do with Cole to help coax his body to roll, stretch and move. We quickly started a daily program of attending physical, occupational, feeding and speech therapies, and then supporting the therapies with at home work as well.

We filled our heads with knowledge, and armed ourselves with a tough exterior of “we’re okay”. We weren’t really but we learned pretty quickly that no one, even family, wants to know the reality of our day to day. No one wants to hear about the loss of dreams. The truth is there’s no real opportunity to adequately mourn the loss of the child, the life of the child, you imagined, or the life as a parent you dreamed of whilst preparing for your baby’s arrival.

The other reality is that fierce, unwavering love you have for your child and your determined desire to ensure that his life is happy, rich and full leads you to learn to advocate, research, connect and to tap into strengths in yourself that you never knew existed. You become more compassionate, resilient, creative, and inclusive. You throw your efforts into ensuring that the world is more understanding and accepting of people with disabilities and differences. You do your best to support and seek out opportunities to enrich your child’s life by finding inclusive activities, encouraging friendships, and following your child’s lead.

We become the best version of ourselves so that our children can become the best version of themselves.

Just the three of us (circa 2009)

Categorized in cerebral palsy, Family Life, Gratitude, Motivation and Special needs parenting
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Don’t Stop Me Now (Queen)

October 4, 2021 - One Response

One of Cole’s new dance routines at iDance is to Queen’s Don’t Stop Me Now. It’s one of my favorite songs to dance around the house to and to belt out in the car when no one (or only Cole) is listening and as teen was part of my “dancing with myself” repertoire (along with a few other songs on the Jazz album). But I think that song also has served as a mantra of sorts for me since I first heard it in 1978. I listened to that album over and over again and reveled in the power of Fat Bottomed Girls (which I believed myself to be), the teasing sexuality of Let Me Entertain You (which I admittedly have always thought would be a perfect strip tease song), the longing and romanticism of Jealousy, Dreamer’s Ball and Seven Days, and the anthemic positivity of If You Can’t Beat Them and Don’t Stop Me Now. I still love to listen to that album in order, track by track.

So watching Cole learn a routine to Don’t Stop Me Now of course put the song in my head all day and took me back to my old bedroom where I’d make up dramatic jazzy dances to it, proclaiming my fourteen year old potential and worthiness. I channeled my inner Freddie Mercury, hoping that if I could muster just a fraction of his seemingly boundless confidence and spirit, I could push through my insecurities and teenage angst and survive middle school. The funny thing is that I still find that song to be motivating, and I still find myself wanting to dance (yes, like no one is watching) to it and experience the freedom and joy it brought to me as a kid. I still find the song makes me want to break out of my head and follow my heart and dreams.

My hope is that it inspires Cole to do the same.

Categorized in Family Life, Joy, Life, Motivation and Teenage angst
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I’ve Been Everywhere Man (Johnny Cash)

October 1, 2021 - Leave a Response

Though it’s still warm, okay hot, here in Southern California, there are glimpses of fall starting to sneak in. Fall is my favorite season, and admittedly autumn in my neighborhood is not as transitional as it is in other parts of the country, but being a sweater girl (to the degree that I was nicknamed “Sweater” when I was a teen because I loved to wear vintage beaded cardigans and loopy mohairs with my pegged Levis or pencil skirts), I’m donning cozy sweaters the moment our temperatures drop below 75 degrees.

The deluge of advertisements, recipe suggestions and marketing emails that proliferate my computer, billboards and storefronts too indicate that fall is upon us. Halloween, Thanksgiving and the Winter holidays are already filling space on shelves and in our thoughts. The “what are you doing for XX holiday?” queries and plans abound. The pool now gets cold overnight despite the still hot days – the nights are cooling significantly. We’re contemplating our last official swim this weekend.

Enjoying aquatic therapy at Stepping Stones

With this being Cole’s last Saturday with aquatic therapy, it’s now time to come up with weekend outings and distractions for him. For the past four months his Saturdays had him at iDance in the mornings, home for a quick lunch, and then back out to aquatic therapy. He arrives home in the late afternoon, happily exhausted, wanting Sundays to be pretty lazy and calm. Maybe a swim with us, or a long, leisurely drive, or meeting family for breakfast, and then enjoying the rest of his Sunday watching YouTube videos or favorite TV. He is a guy who relishes a day to himself after a long week – Morrisey’s Spent the Day in Bed is his jam…

Having a bit more of the weekend back open means that he’ll need to fill more of it. While I’m happy to let him have his day, I don’t like having two days of the leisurely screen time. With the world opening up a bit more I’m already making plans to do more outings with him (and when it works out, with him and friends because that is definitely his preference). He received a membership for two to LACMA for his birthday making visits to see their exhibits a no-brainer. I’d also like to get back to doing beach boardwalk strolls in Santa Monica – we did them frequently during the throes of quarantining because it felt safe and was calming to be by the ocean, explore some farmer’s markets and farms, take advantage of some of the holiday events like the drive through Christmas lights festival we did last year, and visit other museums in addition to LACMA. Getting Cole on board is not always easy but I’m determined to get him out and about on weekends.

With the weather cooling, exploring outdoors becomes more inviting as well. Cole’s never been to Joshua Tree or Big Sur. If things feel safe to explore beyond our area, I feel like day or overnight trips would make for grand weekend fun. We, as a family, don’t often do short trips but I think that having been cooped up for these past eighteen plus months, the idea sounds heavenly. I don’t feel ready for international travel yet but inching out of our comfort zone is a good start. Baby steps…

Categorized in Family Life, Life, Special needs parenting and wanderlust
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Waking Light (Beck)

September 29, 2021 - Leave a Response

September is somewhat of a “birthday season” in my relatively small and extended family. Dan, Cole and I all have September birthdays, added to those of my brother, father-in-law, and sister-in-law, and our god-daughter. It’s a lot of celebrating and new beginnings.

This year feels even more significant in terms of new beginnings. With Cole back in the throes of in person school and outside activities like iDance, and my office preparing for us to return in some sort of hybrid fashion back to some in person office days next month, it just feels like we’re starting to shed the past eighteen months of truncated hibernation. With that I feel like I too am moving towards shedding some layers of fear, uncertainty and introversion, welcoming the idea of being around people I haven’t seen in person throughout the pandemic.

Moving back to a more normal life has been thus far been a slow, mitigated process. At first we saw almost no-one, adding a couple of close families and only outside visiting. Once we were all vaccinated, earlier this year, I actually started going to a few stores and ate at a restaurant (outside) for the first time since March 2020! Cole’s still not comfortable to run errands, though it does cross my mind that it’s a handy excuse for him not to run errands! Things feel fairly safe here – masks are required nearly everywhere and people in our neighborhood are largely respectful of this. My office has a vaccination policy in place, a fancy temperature station when you enter the building, and masks requirements for all indoors. I’ve gone in here and there recently and am reminded of how much I enjoy and miss the camaraderie of my peers. I miss my ducks too!

My office – Halloween 2019

Birthday season often finds me contemplating my place in life and this year is no different. More so than, say New Year’s, birthdays lead me to consider what’s working in my life and what I’d like to approach differently or change or embrace or explore. This year, like some past, it brought me back to this – to writing. I need the brain overload outlet. I learned that exercise is a very beneficial outlet for stress and a welcome antidote for sitting all day, but it doesn’t have quite the same effect on what’s going on inside my head. I’m looking forward to seeing how exercise and writing work together! My hope is that 2022 will find me edging towards a healthier, happy me – that we all will be moving forward towards finding joy.

Categorized in Family Life

Back in the Saddle Again (Aerosmith)

September 28, 2021 - Leave a Response

It’s me…back after nearly two years. I’m getting back to writing!

I left off with Cole still literally hanging out, in traction, waiting for his spinal fusion surgery at CHLA. We ended up there for forty seven days. Yes, you read that correctly – 47 days! And then due to some complications from pain relievers that caused internal bleeding, we were back for another several days after being home for just a few. The surgery itself was hugely successful. Cole’s spine is straight and long, his organs no longer smushed up into one side of his body, and he gained almost seven inches in stature. The surgery also improved his head control so his access to his eye-gaze Tobii communication device is markedly better and he’s gained confidence from his face front, sitting tall presentation.

We found ourselves settling back at home and into our usual work/school/life routine for about six weeks before Covid19 struck. Dan and I both started working from home exclusively March 18, 2020 and Cole stopped school right after that. On one hand, we’d just spent a month and half together in a single hospital room so being quarantined to our house with a yard and neighborhood to wander felt fairly luxurious. We adapted our days to incorporate Cole’s on-line school needs as well as his entertainment and personal needs. Cole graduated from high school, completing the year on Zoom and having a drive-by ceremony. We created two offices spaces within the confines of our small home and settled into the new (covid) normal.

Oh, and we adopted two kitty brothers who arrived the night of March 17, 2020. They were about a year and half old and I had fallen madly in love with them on a foster site I found whilst we were in the hospital. I’d been keeping an eye on them since late December 2019, and happily they were still available to adopt in March! The foster would only allow them to be adopted together because they were completely devoted to one another (still are). The boys were part of a litter she called the “tea kitties” – each kitten in the litter was named after a tea. Our boys are Oolong and Earl Grey. We kept their names because they’d had them for a year and half already and it felt mean to rename them but had we done so they’d have been Nigel and Reg, respectively.

At this juncture late in September 2021, Cole’s been back to in-person school at a “CTC” – career transition campus – a post high school program sponsored by the LAUSD. The program provides some continued education, life skills, and for those who are able, work training programs in a variety of different fields such as data input, baking, retail, silk screening, car detailing, farming, and more. Cole spent his first year on zoom and is now happily back to riding the bus to and from school, with peers and pals, and enjoying the program. He’s back at iDance and just finishing up two sessions of his summer favorite, aquatic therapy. Dan and I are both still working from home, through in October I’ll start going in a couple of days a week as our offices slowly start to reopen.

It astonishes me how adaptable Cole has been through all of these challenges he’s faced these past couple of years. There have certainly been some low points because being stuck in hospital and then at home with just us would be hard on any kid, any teen, but he got through it all without serious issues. The one thing he implemented, as a measure of self-salvation I suspect, is that he no longer willingly will join us in the living room or dining room to eat or watch TV or hangout. His bedroom became, and continues to be, his sanctuary. He enjoyed going on walks, drives, and visits with us during the worst of the quarantine, and he swam with us and enjoyed having friends over when it started to feel safe to entertain outside in the backyard, but (if I’m honest) like many teenagers, he really didn’t want to hang with us anymore than necessary and for a guy who has little opportunity to exercise his independence, we respect his decision. It saddens me sometimes but I do recall wanting my alone time as a teen so I do understand.

A big impetus of starting to write again is that I find I live in my head and these past eighteen months have not helped that and in fact have made it worse. Writing has always been the best way for me to purge my overloaded brain from everything it’s striving to sort out and process and create. Writing helps to keep me nimble. So, I’m back. No one may be reading (yet) but the simple exercise of writing is enough for me. I actually have a couple of writing projects I’d like to attempt so resuming a daily or weekly practice of writing will be a useful practice in creating as well as the brain purge. I feel positive and excited about what lies ahead!

Categorized in Conversation, Family Life, Life, Teenagers and writing
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DINNER BELL (They Might Be Giants)

January 2, 2020 - Leave a Response

Since we’re still stuck in the hospital in somewhat of a holding pattern, waiting for the surgery date to arrive, I’ve been doing a lot of daydreaming and plotting.  Naturally, inspired by the new year, new decade, and in part by the outpouring of support from all walks of my life, I’ve been trying to come up with a way to bring my worlds together and to be able to spend real time with people.  Ways to show my appreciation and gratitude for their care.

I love to entertain and I love evenings spent enjoying food, drink, lively conversation and games.  There’s a Barefoot Contessa episode where she’s in Paris and one of the expat chefs she cooks with explains that he and his wife started hosting weekly dinner parties where they welcomed strangers from their neighborhood as a way to get to meet people.  I love the idea.

We actually started doing monthly summer dinners with a few neighbors last year that have been such a fun way to connect with the people around us.  When I’ve mentioned this to other friends, the reaction is always one of surprise.  I’ve found that quite a lot of people don’t really know their neighbors anymore, and if even they know them, they don’t socialize with them.  I’ve really loved our dinners and look forward to this summer when we get back to it!

While I’ve been here contemplating things I’d like to do in the new year, not resolutions, mostly actions, my husband shared a Facebook post from a colleague who lives in New Jersey (his company welcomes people working remotely so their staff are all over the country, and a couple even outside the country).  She and her husband starting hosting monthly pasta dinners when they purchased their home as way to entertain, meet new people, see existing friends, and make use of their new home.  I loved it and wanted to know more about how they came to do this.  Turns out they were inspired by a blog post on Serious Eats, where a couple decided to do a weekly Friday Night Meatballs dinner.

The point of the evenings is to bring people together not to impress everyone with your culinary prowess or to spend a week preparing for these evenings.  It’s about keeping things simple, sharing your space and time connecting with people in your life and connecting people in your life with each other.  The mix of guests can be forever changing even if the meal itself remains the same, dinner after dinner.  Evenings can end up with lively games and other fun simple entertainment – impromptu karaoke anyone?

I’m dreaming of being home and figuring out how this idea can find its way into our routine.  One of the greatest gifts of Cole’s spinal surgery journey has been the recognition that we have a big community of people who care about us.  I really want to welcome them into our real life and implementing a regular dinner night seems like a perfect way to do just that.  I can’t wait to see who will actually join us!  I really hope we have a revolving mix of people open to the magic of togetherness!

Hero-Dinner-Party

Categorized in Backyard Living, cerebral palsy, Connectivity, Cooking, Dinner Parties, Family Life, Friendship, Gratitude, Life and Special needs parenting
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LET’S START THE NEW YEAR RIGHT (Bing Crosby)

December 30, 2019 - Leave a Response

It’s hard to believe that 2019 is coming to an end – not only 2019 but the decade.  It’s hard not to have this past month define much of 2019, but the reality is there have been a lot of things that happened in 2019 that are to be celebrated.  Perhaps looking back, our current hospital adventures will be celebrated too.  At the very least, our survival of them!

One of the things I’ve worked on this past decade is to be more open to asking for and accepting help.  Somewhere in the last few years I started going to a special needs moms support group, which started opening me up to exposing myself.  I also have a couple of dear friends who encourage the same of me and it’s transforming my psyche.  I’m definitely a work in progress and will probably always be such but learning to be open to change and vulnerability have impacted my life in more ways than just as a mom.

I’m not good at resolutions so my interest in the start of a new year doesn’t really lie in committing myself to do this or improve that.  The usual things like devoting more time to wellness (fitness/healthy eating/sleeping), finding balance in life, being my best self are ongoing endeavors.  A couple of years ago I challenged myself (along with a friend) to try to do new or different things throughout the year.  That too is something I hope to continue to explore.  I was gifted a guitar for Christmas this year so learning to play is on the agenda – I have some lofty songs I hope to eventually master!  I also want to challenge myself to write more – whether it’s this blog, short stories or even letters to loved ones.  The practice is cathartic and I dream of one day having something published, making the practice even more important.

I see 2020 being the start of a movement where I strive to be more present with my time, care and interest in my family, friends and others.  I greatly appreciate the simple, but intimate joy, of spending time with people I care about or am interested to know better over shared meals, experiences and time.  I don’t feel like I do it enough though and really want to have impromptu meals, game nights, afternoons hiking with friends.  I’m at an age where life feels more fleeting.  An age where both peers and parents are leaving us or are facing health challenges.  Time shared is so much more valuable than any purchased gift.  My perspective of this value has deepened as I’ve aged and I feel strongly about drawing my community more into my everyday life, holding them dear and near, celebrating nothing and everything.

On that note, slightly in advance, here’s to a bright 2020!  I wish you all a glorious new year filled with promise, joy and love!

 

 

Categorized in cerebral palsy, Connectivity, Family Life, Friendship, Joy, Life, Optimism, Resolutions, Special needs parenting and Wiritng
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BLUE CHRISTMAS (Elvis Presley)

December 24, 2019 - Leave a Response

Today is Christmas Eve.  We’ve been living at Children’s Hospital Los Angeles (CHLA) since December 4th.  Cole’s surgery has been rescheduled due to a cold he caught here.  If all goes well and he stays healthy for the next weeks, it will be January 6th.  We thought by January 6th we’d be well into healing but have hit bumps all along the way.

Christmas Eve is Cole’s favorite holiday.  For seventeen of his Christmas Eve’s, we’ve gone to my brother’s house to celebrate with our family and extended family, usually my sister-in-laws siblings, their kids and her dad an his wife.  Sometimes her half siblings and their children join as well so there’s 20-24 people gathering together for a night of fun.  We arrive with a non-gender grab bag gift, ready for a great night. The evening starts with cocktails and appetizers as everyone tumbles in.  Lots of catching up and lively chatter.

Eventually we all take our assigned seats and the feast begins.  It’s a traditional roast beef and Yorkshire pudding meal with two salad choices, two veggies, mashed potatoes, au jus, horseradish and lots of yummy wines.  It does not deviate.  Convivial conversation abounds as we all devour the delights.  Once we’re done eating, we migrate to the living room were we all don crazy Christmas hats that my brother has collected over the years. Some are Santa hats, some silly ones, some Hanukkah ones (we’re a multi-cultural family).  We then choose our day of Christmas and sing a rousing, often terrible Twelve Days of Christmas.

While we’re singing, someone sneaks out and throws on a furry, plush Santa suit and beard and appears just as the singing ends with little gifts for the younger ones.  Over the years it’s been most of the adults, and more recently the eldest of the cousins.  It’s silly but depending upon who is Santa that year, can be quite funny.

Following Santa’s visit, we settle back around the tables with cookies and sweet treats and take an annual holiday trivia quiz to determine the playing order for Dirty Santa.  Once we set the order, the game begins.  Starting from low to high, someone selects a grab bag gift. The next person can either steal (maximum of three steals per gift), or choose a wrapped grab bag gift, and so on.  The coveted gifts get stolen until they can be stolen no more.  Gift cards and tech gadgets are popular.

At this point it’s nearing 11:00 pm and everyone’s winding down, heading home, getting ready for Santa and the next day’s festivities.  In Cole’s mind, this is the perfect night.

Sadly, this year we’re stuck at CHLA.  It’s a fantastic hospital to be stuck in if you find yourself stuck in a hospital on Christmas.  But nevertheless, we won’t be with the rest of our crew and one of us will wake up at home alone (me) tomorrow because only one parent can stay the night and it’s my husband’s night.  We were gifted a little faux tree this morning complete with twinkle lights and few ornaments and have a festive collection of holiday stuffed animals that have been gifted to Cole by thoughtful visitors lending further to the holiday feel, though it somehow still doesn’t quite feel Christmasy.

Cole seems to fluctuate between being happy and sad when reminded it’s Christmas Eve. I think he might rather just have the next two days pass without much fanfare as we inch closer to the January 6th date.   Tomorrow I’ll bring a festive bag, left by Santa, with his gifts and hopefully it will be a cheery day.

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Categorized in cerebral palsy, Christmas, Family Life, Gratitude, holidays, Life, Special needs parenting and Surgery
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THE GHOST IN YOU (Psychedelic Furs)

December 17, 2019 - Leave a Response

I’m sitting in an armchair with Cole sleeping next to me in 27 lbs of traction, nursing a cold.  The last thing we need is a cold or illness of any sort but weeks in hospital in December are hardly the best circumstances to prevent illness!  Nurses and other kids all have the same little cough that he has.  Who knows where it came from – there are so many people coming in and out of the wing…So we’re doing all we can to keep it from getting worse. The surgery is scheduled for December 24th, which gives a week.

The traction process seems to be going well.  Cole’s spine is responding favorably to the slow stretching and from the last x-rays his ribcage is shifting back into place.  He sits so much straighter which gives us an idea of how he will sit following the surgery.  It’s really positive and he says he’s more comfortable even in the traction – and how can he not be?  His pelvis is straighter so he sits better and it’s also no longer touching his rib cage.  With his rib cage straighter, his lungs are no longer impacted so his breathing is better and simply sitting straighter really has an impact on his overall image – he looks more mature and present.

We’re now two full weeks into this incredibly weird existence.  I feel like a ghost in my life.  I spend about 75% of my time at the hospital, returning home every other night to cuddle our lonely, confused dog, do a load of laundry, sleep, shower and return to the hospital the next morning.  I can tell my husband has been there but we’ve not been in the house together for two weeks.  We spend time at the hospital together but with Cole and visitors and nurses, aides, doctors…endless comings and goings at all hours.

It’s hard to know what to do with myself when I’m home.  I’ve wrapped all of our gifts, though I’m not sure why.  We do have stuff we’ll pass along to my family for their celebrations and we shipped to family out of state but what of our celebration?  How do you celebrate when you know you’ll be spending Christmas Eve waiting with worry while your son undergoes a ten hour surgery with a couple of hours of pre and post op on either side of that ten hours?  How do you celebrate Christmas when your son will be in the PICU on Christmas and likely Boxing Day? We’ve considered doing something before with Cole but we can only have two visitors so we can’t even do something with the just my brother and his family and my mom, who is coming down from Oregon.  The reality is it doesn’t matter much to my husband and I, but it does matter to Cole, whose favorite holiday is Christmas.

None of this matters except getting him back to full health before surgery and then getting him through the surgery and the next month of recovery.  We’ll have to create a new holiday after all this is but a memory so that he can celebrate his recovery, bravery, and grace that he’s shown throughout these weeks.

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Categorized in cerebral palsy, Christmas, Family Life, Gratitude, Life, Special needs parenting, Stress and Surgery
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I’LL BE THERE FOR YOU (The Rembrandts)

December 9, 2019 - Leave a Response

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.

Categorized in cerebral palsy, Connectivity, Family Life, Friendship, Gratitude, Kindness, Special needs parenting and Stress
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