Archive for the ‘Love’ Category

SIXTEEN FOREVER
September 20, 2017

My boy turns sixteen today. Sixteen! How in the world did sixteen years go by so quickly?

At sixteen, he’s leading a relatively happy life, especially considering the challenges he deals with day in and day out. He’s matured quite a bit this past year, more noticeably so than any past year. The self he presents to the outside world is considerably more self reliant, intuitive, and communicative than the one he shares with us.

I suppose that’s typical of most teens, but knowing that he uses communication resources fairly regularly at school and during this past summer at camp, sharing deep, considered thoughts, like when asked what he has had to persevere during his life, he answered that he’s persevered through several surgeries and recoveries, and then conveyed that one of his future concerns is what will become of him when he graduates from high school. Like I said, deep, considered thoughts.

He continues to love music, and is willing to try new bands and singers, but in times where comfort is needed, still reverts to favorites from his early childhood. He’s the same way with television programs. He can watch endless episodes of Little Bill and his favorite cooking shows (Barefoot Contessa and Pioneer Woman) but now has a great love of Modern Family. There’s less of a willingness to try new programs despite the endless accessibility to heaps of programming he would likely love if he gave it a shot.

He loves sports, and water activities, though if asked, he’d say skiing is his favorite. We’re building a swimming pool for him after years of consideration, because he’s always thrived in water, and never as much as he has this past summer doing aquatic therapy with a new therapist. His last hip surgeries left him not able to stand or take steps but since working with her he’s building so much strength that he’s standing tall, taking steps in the pool wearing 5lb ankle weight. With the strength comes confidence. Having a pool of our own will give him the opportunity to move his body at the end of a long school day, sitting, or on hot weekends, and it will inherently boost his social life because inviting friends to swim is an easy, fun social activity.

Baseball too has become a fun, social activity. He has friends who play in his Champions league, and friends who volunteer as buddies in the league. He enjoys the thrill of “running” the bases (as fast as his buddies can push him) and the cheers he gets as he passes each set of bleachers. The smile is infectious and elicits cheers from both sides.

High school is going well. Now a sophomore, he continues to love riding the bus to and from school, especially because he has a good friend who rides too. They listen to music and watch cooking videos on his Tobii. He has friends in class and if his recent report card is any indication (straight A’s), is focused on doing well in school. Knowing he’s happy at school, simple as it may be, is a huge relief.

So all in all, he’s doing well at sixteen.

He and I have talked about some of things that cause him sorrow, one of the biggest being that this is an age when most of his friends are learning to drive and getting their licenses. He knows he won’t be. I’ve told him that if he can get to a point where he can successfully communicate his needs on his Tobii, we could consider a ride share service sometime, or more to his liking, he could drive with friends. But he has to be able to clearly make his needs and wants known. I see it as incentive for him to be more reliant on the device.

He wants to have a first kiss. He has loved girls since he was small and he has loved specific girls at times in his life. He had a girlfriend last year in school (she’s since graduated), and after observing them together one night at our house when she came over to watch “SING”, I could feel the giddy love between them. She also has cerebral palsy so they sat in chairs next to one another and spent the movie trying to hold hands and making eyes at one another. The feelings were there and I wish I could have better facilitated their evening so they could be nearer to one another. It was pure sweetness.

He wants to spend time without his parents. This summer we had an amazing caregiver for the last couple of weeks with whom he did so many fun things and who brought out the best in Cole. I think he’d like to have someone like that in his life more consistently so that he could go to the mall on weekend day and shop and wander, or who could take him to the movies or lunch or out with friends. It’s on my list…it’s just hard to find someone quite a special, as perfect a fit, as we had this summer.

All pretty typical things boys want at sixteen.

To me, he’s forever going to be my baby. I don’t mean to suggest that I view him as a baby in anyway. He’s my heart. He’s the reason I exist. We have a connection to one another that sometimes takes my breath away. When he’s feeling disconnected from me, and I lay my head down next to his or reach out and take his hand, the look he gives me is that of pure love. It melts me to the core.

For sixteen years I’ve been blessed to be his mom. My experience is not the typical mom experience, but it’s a journey that has shaped me as a person in ways nothing else could, and it’s my been my privilege and pleasure to be known as Cole’s mom in many circles.

Happy Birthday to my beautiful boy, my joy! I wish you could stay sixteen forever…

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Posted in cerebral palsy, Family Life, Gratitude, Joy, Life, Love, Special needs parenting, Teenagers | Tagged: , , , , | Leave a Comment »

JUST LIKE STARTING OVER
September 19, 2017

I’m one month out, post surgery. I got the clearance to begin easing back into physical activity. I can walk with vigor, exercise moderately, and tend to some of Cole’s needs (still not quite ready for heavy lifting, but can move towards it over the next few weeks). I’ve been back in the office since the start of the third week. I tired quickly at first but I feel like myself again.

Yesterday all of the surgical tape was removed, and I got my first clear view of my new self. While the procedure was prompted by health concerns and constant pain, I must say the superficial benefits of it are pretty amazing. I actually have breasts that fit my frame and compliment my body. I feel lighter, stand taller, and am completely inspired to get the rest of me in better shape to better suit my new boobs. All of my clothes fit differently too.

As I wrote previously, the aching pain I have suffered from for twenty odd years is gone. Though I haven’t been able to lift Cole yet, I can tell that not having so much body in front of me, will be an asset in lifting him safely and more comfortably, especially as I move deeper into my fifties and beyond. The need to lift him and support his body whilst taking care of personal needs and dressing is not going to end.

It will be several months before I’m completely healed, and at least one or two more before my new breasts settle into their final size, but even just four weeks in, I have to say it was worth all of the hardship I’ve inflicted on my poor husband and child, who have had to make adjustments to their routines to accommodate my needs. At the end of the day, it’s just a few months in the lifetime we will continue to share. From here on out, each day will give me a chance to get stronger, healthier and to become more the self I dream of.

Doing something this major, largely for myself, has taught me that it’s okay to take chances on myself. I view it as an opportunity to reset some of the habits I’ve fallen into over the years of my adult life. I am eager to continue transforming myself both physically, through better eating and regular exercise, mentally, by engaging in things that interest me and feed my soul, and emotionally, by trying to be a better wife, mom, friend, daughter, sister – a better me. My guys and my friends have shown tremendous kindness, support and love during this process and I want to keep that alive in all of my relationships.

Who knew that new boobs could lead to such a whole being revolution?

Posted in cerebral palsy, Family Life, Gratitude, healing, Life, Love, Marriage, Motivation, Special needs parenting, Surgery | Tagged: , , , , | Leave a Comment »

CRUEL TO BE KIND
January 11, 2016

I had a bit of a revelation this past weekend. Perhaps somewhat overdue revelation but I had it (finally) and it’s put me to shame.

A discussion about something Cole related with my husband turned, as it often does, into an argument. I took my frustration out on him and got nasty. It’s my M.O. – not one I’m proud of but it happens a lot when we get into these emotional conversations. I think a lot of people do the same, and it is a learned style of fight that got passed on to my by my mom and brother. Hurt the ones you love.

The revelation I came to, is that my frustration when discussing difficult things in my life, is that we’re discussing difficult things in both of our lives. Shared frustrations, concerns, fears, anxiety, and stresses. When I talked to friends about these things, I have an outside opinion to bounce things off and to bring in different views. When I discuss things with my husband, the frustration is that we’re both in a similar place and it doesn’t help to remove me from where I’m stuck.

I’m not sure if I’m expressing that properly but in my head it makes sense and it struck me that it’s the root of some of the anger I direct at him. He can help me resolve some things because he’s looking for the same resolution, and I can’t necessarily help him. Sometimes you need a trusted or knowledgeable outsider to provide perspective and insight.

While I know that my fighting style is cruel, and not appropriate, especially when aimed at my partner, someone I love, this recognition I had gave me cause to reflect on my misguided anger in a way that I haven’t before. It gave me a deeper awareness of my failing. When I’m hurt, worried, concerned, or even appropriately angry, it’s not useful or helpful to deflect it upon someone else, especially someone who is often sharing the same emotions and therefore doesn’t need the additional burden of my wrath.

We’re going to fight still, everyone does, but I’m really going to make a bigger effort to stop to better understand the whole of a situation and what might really help to resolve it before I lash out.

Maturing can be a real bitch sometimes, especially when the mirror reflection is of someone were not proud to see…

Posted in cerebral palsy, Conversation, Family Life, healing, Life, Love, Marriage, Special needs parenting | Tagged: , , , , , | 2 Comments »

THAT OLD FEELING
November 16, 2015

No matter what your circumstances, marriage is hard. Whenever you have two different people approaching anything together there’s bound to be some give and take, and when it’s creating a life together, and raising a child together, the potential for discontent becomes greater.

Throw in a child with special needs, who impacts your lives in many ways a typical child does not, the discontent grows. You can’t blame your child for the impact he has on your life. For the most part, his presence in your life is glorious, as with any child. But his needs will always take precedent and his influence is felt in nearly every decision.

Cole’s now fourteen, an age when many teens are starting to spend a couple of hours or more in the house alone whilst the parent(s) are out running errands, grabbing a bite of lunch with friends, working out, going to a movie, whatever. It’s an age where a lot of teens are also going out on their own, to the mall, parties, the movies, etc. Unfortunately, that’s not us, and it’s not Cole.

I’m certain Cole would love the opportunity to have the freedom to hang out with friends, doing something fun with out parents or adults. But he needs someone to support him, even if it’s just pushing his wheelchair, and making sure he’s included in the activity. The opportunity has never come up, not yet, but it’s also not something we can impose on his friends.

We don’t have great childcare at the moment and moving him is so much harder on him since the surgery, which leaves us with little opportunity for date nights and the like. Not having alone time puts a lot of stress on a marriage. You’d think not spending time together would prevent it but I find the disconnect makes things so much harder. It often feels like two people moving through a life side by side, but not together.

I’ve given it a lot of thought because my husband was traveling quite a bit these past months and given to my own devices, I create my own routines and it’s then hard for him to break back in to the fold. We bickered and bitched for the first weeks that he was home, and just this weekend things started to feel reconnected. We didn’t pick on one another, we accomplished things, and we relaxed a bit. I’m hopeful that we can continue on this path for the next few months where he’s homebound and not traveling. It’s nice to see glimpses of “us” again.

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Posted in cerebral palsy, Family Life, Life, Love, Marriage, Special needs parenting | Tagged: , , , , | 2 Comments »

RUN THE WORLD
November 10, 2015

I have two nieces who I love to pieces. Sorry, couldn’t resist. I always think of that cartoon where the cat hates meeces to pieces…I want to say the Pixie and Dixie Show? Jinx the Cat? Anyway, I adore my two nieces…to pieces.

Emily is seventeen and senior in high school. She’s currently sending out her college applications, narrowed down to something like fifteen from forty! She’s looking at schools all over the country with an interest in computer science. Em plays on the varsity volleyball team at her high school and in league as well. She also played water polo for a season in high school.

She’s been part of a junior leadership program at Cedars Sinai for several years as well as volunteered as a candy striper. She also has been involved with some girls empowerment seminars at her school and was selected to be a part of the Girls That Code internship program this past summer, doing a seven week , 9-5, stint at the Honest Company. She’s impressive.

Emily

Emily

Her sister, Devon, is fourteen, almost fifteen. She is a freshman in high school, and plays on the varsity volleyball team as well. She is in fact one of the top players on the team. She’s one of the top players in her age group in the country. She plays both indoor and beach volleyball and is getting a lot of notice. She too plays in league, and for the US National High Performance beach volleyball team, in the 17 and under category…one of ten girls. She’s impressive.  It’s going to be interesting to see where her interests take her through high school.

Devon

Devon

Besides their shared love of volleyball, the girls are actually quite unique. Emily is more serious than Devon, and Devon is more artistically inclined. They’re both bright, kind and beautiful. I love having nieces because it gives me a chance to get my girlie on, especially when they were younger.

Even though we live in the same area, I don’t get to see to them nearly as often as I’d like. The circumstances of my life are a big factor – between work and taking care of Cole, it’s tough to find time that works with their busy schedules. With Emily perhaps attending a university on the other side of the country, it has me wanting to see them more. It will be so different with her, and then Devon, away on their own, finding their own place away from the family. Cole and I are already plotting out our care packages! Monthly letters, photos and treats!

Tonight I finally have a chance to see them both play together on the same team in the playoffs for their high school volleyball league. The stars aligned – the game is near my office, starts at 7 pm (later than usual), and I’ll be there, cheering for my darling nieces. Whoo Hoo!!!

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Posted in cerebral palsy, Family Life, Life, Love, Nieces, Special needs parenting | Tagged: , , , , , , , | Leave a Comment »

PHENOMENAL CAT
November 2, 2015

Prior to Cole having his surgery I read a funny article about the healing power of a cat’s purr (Healing Power of Cat’s Purr). I shared it with my husband because we have a cat, Charlie, and I thought it was kind of interesting. He scoffed at the idea, as he’s apt to do when I share something off the beaten path, and particularly when it comes to health or medical related subjects.

Charlie is about twelve years old. We adopted him when Cole was two, along with his brother (Nick) and sister (Nora), both of whom are no longer with us. Charlie’s a fairly independent cat. He’s always liked Cole and as he’s aged he often tries to sleep on Cole’s back or bottom (Cole prefers to sleep on his stomach), but otherwise, we don’t typically see much of him during the day. Charlie spends his days sunning outside, visiting a few neighborhood dogs and cats, and doing whatever cats do. He relishes his independence.

However, Charlie’s routine took curious turn when Cole came home from the hospital following his surgery. Charlie became a caregiver. He took to vigilantly curling up between the casts during the day and night or draping himself over one of Cole’s legs with his head resting on Cole’s hip, purring. Purring a lot. Purring healing purrs.

He spent every day of Cole’s healing nestled on or near Cole. We took to calling him Nurse Charlie because he was so consistent. When Cole was moved to another room, Charlie would curl up in the spot left by Cole until he returned and then would reposition himself to be close to his charge. It was really fascinating. He took his nursing duties very seriously.

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Even now that Cole’s returned to his usual routine and is out of the house during weekdays, Charlie still hovers nearby and curls up with him for bedtime. It’s rare that if Cole’s resting on the bed, Charlie’s not nestled right next to him. It seems he’s not quite ready to stop caring for his precious patient.

Funnily, my husband and I both took to posting #NurseCharlie photos on our instagram accounts and when he was recently away on business he had lots of inquiry about Nurse Charlie. It would appear that our cat has captured some hearts. Perhaps he needs his own instagram account!

Posted in Cats, cerebral palsy, Family Life, healing, Life, Love | Tagged: , , , , , , , | Leave a Comment »

ANNIVERSARY SONG
April 22, 2015

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Today is my fifteenth wedding anniversary. We’ve been a couple for seventeen years. Almost a third of my life…Before Dan the longest relationship(s) I had been in lasted no more than two years, and ours is in many way the most challenged. The divorce statistics for couples with special needs children are pretty daunting. Something like 80% to the national average of 45%. I’d say we’re doing pretty damn fine!

The past fifteen years have not always been easy and there have admittedly been times when it felt like the best thing to do would be to throw in the towel but the love has always been there, even when we haven’t liked each other very much.

I’m a handful. I admit it. I can be very hard on someone who disappoints or angers me. I also have a tendency to lash out and be hurtful, especially with my husband who is the unfortunate recipient of my foulness no matter who or what the cause. He has the pleasure and sorrow of being the one closest to me, and the one who is around me the most.

The pay off is that I’m more often sunny and pleasant. He actually thinks I’m funny and tolerates my singing, which even my son refuses. We’ve had to endure a lot of stresses over the years, most notably the birth of our beautiful boy, our attempts to navigate the world of special needs parenting, and everyone’s favorite, finances. But we’ve managed to come together more often than not and work well together. Our strengths compliment one another making us a force to be reckoned with. Our journey has been unexpected and bumpy but always with an underlying current of love running through it.

We plan to celebrate rather simply because it’s a hectic time workwise for both of us and a Wednesday (not as fun to do late night celebrating on a weekday!), but, because it’s a rarity, the idea of sitting across a restaurant table from my husband, sharing wine and nibbles is heaven.

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Rather than one single grand gift, I decided to go with the 15 theme…Fifteen assorted prezzies! They range from a CD with 15 songs that remind me of him to a bag of what he claims is the best coffee he’s ever had (James Coffee Co.) to a Replacements t-shirt (we saw them the other night and he commented that he realized he didn’t have one of their T-shirts despite them being one of his faves) to 15 photos from our wedding that I created an album for to a chocolate croissant (his favorite) from a great bakery near my office to start the day on a sweet note. The process of coming up with the ideas and the different fifteens (like the songs, pictures and things I love about you list) really put me in a frame of mind of recognizing how blessed we are and of how much I love him.

Nothing crazy, but hopefully things that say “I listen, and I hear you”…Here’s to the next fifteen, Darling.  I can’t wait to see what is yet to unfold!

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SUNDOWN
April 2, 2015

I turned on the car recently and Sundown was just starting to play on the radio. I had a moment of sadness but then realized it was a happy start to the day. Maybe my dad would be with me…Sundown is a song that reminds me of him more than any other. I’m not sure why exactly because I don’t think it was a special song to him. I just have memories of it on the radio, me sitting in back, leaning over the middle of the front seats (I was a child back when backseat belts were not used), the two of us poorly singing Sundown. I can still feel the utter happiness I felt in that moment. He’d glance at me as we sang, smiling with a twinkle of conspiracy he often shared with me.

So I turned up the radio, started off to work singing loudly and joyfully, hoping he could hear me and that he was singing along too.

He had a way of making you feel like you were about to have some sort of adventure with him. A simple trip to the grocery could become an afternoon lost wandering around comic book stores in search of a random issue he needed for his collection. A trip to a museum ended with him introducing me to my first martini(s). Gin or vodka? Dirty or dry? We wandered around downtown until we found perfection in our preferences, and an expensive cab ride home!

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When he and my mom moved to Oregon, we’d spend hours talking on the phone, and sent lots of cards and letters. He was my best girlfriend. There was very little we left out of conversation. I’m blessed to have come to a place with him where we were so close.

Today is his birthday. He would have been seventy-two years old today. It’s funny because I can’t quite imagine the man he would be if he were still around. He died unexpectedly at fifty-six, going for a backhand shot in a tennis tournament. Not a bad way to go all in all but tragically way too soon. He probably had a smile on his face, which for some reason brings me peace.

My mom stayed in Oregon for another decade before she and her beau moved back to Los Angeles to be closer to the grandkids. I don’t know if my parents would have moved if my dad were still around. They were happy there. It’s a lovely place to live. There would be frequent visits to see the kids for certain, but whether they’d return for good, I can’t say for sure.

I’ve said before but it pains me that he couldn’t have known Cole. The two of them would be fast friends, compadres, and partners in crime. My dad would have taken it upon himself to devise all kinds of gadgets and gizmos to improve Cole’s life. He was like that. He would have been inspired to create and dream with and for Cole. No matter how much I miss him, the real tragedy is that they never met.

I miss him.

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I’ll miss him every day of my life…

Posted in cerebral palsy, Family Life, Life, Love, Special needs parenting | Tagged: , , , , , | 1 Comment »

WHY DO FOOLS FALL IN LOVE
April 1, 2015

I had lunch with a friend yesterday. She’s a former colleague, and now friend, and also happens to have a son who is in the 7th grade. Besides both having been our business for nearly twenty years, we also share the intrigue of raising teenage boys. While our experiences are different, we share many common values and have similar interests in raising our boys to be well rounded, kind and respectful.

Both of our boys are starting to develop interest in girls, and she shared that her son recently asked her if she believed in young love, to which she responded emphatically with a NO. I found it to be a romantic notion and if Cole were to ask me the same question, I would probably have answered YES.

I love the idea of young love. I must have fallen in love (or thought it was love) a dozen times when I was young. I think back to certain boys and can remember exactly how I felt at that time in my youth. I must have been thirteen when I fell for my first real crush. He lived in my neighborhood and was the absolute end all be all in my eyes. I used to skateboard past his house as often as I could, hoping he’d be outside so I could talk to him. I dreamed about conversations we would have and would imagine walking to school hand in hand with him. Sadly, he didn’t share my crush but we did become friends over the years, and eventually dated briefly in high school but by then my crush had faded. Still, I loved the feeling of love.

There’s innocence to what I consider young love to be. It can be unrequited, but still feel intense and all encompassing. It’s almost like your emotions are experimenting with themselves, or working out the kinks, teaching you to understand them.

I wonder what it’s like now for teenagers to crush on one another. From what I can tell from stories my teenage nieces share and from other kids, is that young relationships often take place via texting and social media, and not so much in the realm of spending real time together, getting to know each other. It seems like there’s a bit of disconnect in the way todays youth, well, connects.

I’ve asked Cole if he likes anyone special and he smiles slyly at me. I’m not sure if the sly smile is an “as if I’d tell you, mom” smile, or “why, yes, there is a cute girl in class that I like” smile. My gut is that it’s the former, and I don’t push but I’d love to be privy to his heart. I want him to feel butterflies and excitement and to be tickled when that girl talks to him. Young love is not necessarily the same as the deep, romantic love we hope to share with that special someone as adults, but I do think it’s real and magical and I believe in it.

Posted in cerebral palsy, Family Life, Life, Love, Special needs parenting, Teenagers | Tagged: , , , , , | 2 Comments »