ALSA in August

Holy August. Wait, holy middle of August. Crap.

I made a promise to myself that I would find a charitable organization to highlight each month on this here little blog. And I’m starting to suck at it. I am notorious for shifting self-imposed deadlines. I am a procrastinator. And I tend to start things and oftentimes never follow through. But this lack of regularity is simply due to a lack of time. In no way is it a reflection of my waning interest in my initial undertaking. In fact, I am having fun and learning so much about various non-profits and I love sharing them with you. Unfortunately, where I feel like I should have all sorts of extra time, honestly…as summer draws to a close and the chaos of football and back to school preparations and squeezing the last bits of summer out of summer ramps up…time is something I just don’t seem to have enough of.

With the ALS Ice Bucket Challenge sweeping the nation, and specifically my family’s participation in both donating money and dumping ice cold water on our heads while subsequently challenging fifteen people to do the same, not to mention my monumentally annoying constant pleads to donate to our personal St. Baldrick’s fundraiser…I feel asked out. I feel as though if I even suggest making a donation to a new organization this month, whether monetary or otherwise, I’d be overstepping. To be truthful, I feel as though I need a break from making the ask. Even though these monthly posts aren’t really me making the ask; for some reason I feel nervous each time I ask you to consider helping, or encourage you to take a peek and see what each organization is all about.

So this month I’m taking the easy road and will jump on the coattails of some pretty ingenious people and simply encourage each of you to allow yourselves to be swept up in the Ice Bucket Challenge craze. This particular viral challenge started when a Massachusetts resident diagnosed with ALS (Lou Gehrig’s disease) started posting about it on social media. He was diagnosed in 2012. He is twenty nine. He was an athlete. He is someone’s husband, son, brother, friend; ALS can strike anyone. This disease is presently incurable and at diagnosis there is a 2-5 year life expectancy. So please, donate what you can. Donate if you dump water on your head and donate if you don’t. And if you can’t or don’t want to donate, you can still do good and raise awareness (the ALSA contends that only about half of the general population knows of ALS), by hopping on over to www.alsa.org and read about cutting edge research, learn the personal stories, and acknowledge those who have succumb to this incurable disease.

And watch the videos. You can scroll by, but you should watch them. Cause they’re cute. And funny sometimes. And creative sometimes. And at most take what, two minutes out of your day? They’re a feel-good kinda thing. And they do serve a purpose. Admittedly at first I was confused by them because I had no idea what was going on, sadly something that tends to happen often (I blame my children). But I asked. And I researched and read. And thanks to our daughters' being nominated, we got on board. And it was awesome.

Again, please visit www.alsa.org to find out more about ALS, to donate, or to read about the great Ice Bucket Challenge. It’s a pretty cool story. With a pretty cool outcome, both for awareness and funds raised.

 





 

This poor guy. We had strapped him in to keep track of him as the sisters completed their IBC. But one sister decided to jump out of the way, and all the ice and water landed in his lap.

He was...not happy.



Staying Small

Week Thirty Two of Fifty Two

"A portrait of my child(ren) once a week, every week, in 2014"

Thursday marked this guys fifteen month birthday. That has always felt like some sort of milestone that solidifies a gigantic leap towards "big-kid-ness." But this little man...I don't know. This week I feel as though he still leans more towards baby. Kind of like his five year old sister.
 
I think it has something to do with the fact that he refuses to talk, which admittedly I'm a touch grateful for, because holy Shiitake mushrooms said five year old sister talks enough for all of mankind. I think it could have something to do with the fact that he still nurses like a newborn baby throughout the night, which admittedly, I could freaking do without. I think it has something to do with the fact that I am wrapping all extremities around this littlest and holding on to all semblance of his infant-ness! I see this week as an accomplishment; a win for me when it comes to preventing his growing up. I think it also has something to do with the baby blanket I knit for him this week. And not baby as in I ran out of yarn and the blanket finished ridiculously small. No, a baby blanket as in not a toddler blanket. Not a big-kid blanket. A baby blanket, it is totally helping! So yes, please, and thank you for that.

Of course, he is laying the drama on thick these days, and this week we have also seen his tiny little temper flare. The way his little fists ball up when we tell him not to chew paper or eat cat food. The way he cautiously and slowly sits his dimply behind down on the floor, and ever so gently lays himself back on the ground, utterly unable to take one more step if we take the broom away from him. The broom which he uses to swipe things off shelves and topple over toys, people and cats alike. The way he grits his teeth, squeal-screams and turns red in the face when we take away smart phones and prevent him from baby dialing (very much like drunk dialing). Or the way he leans into something (people, beds, couches, more people) with all of his might and growls out of some mystery frustration.

He has also mastered nose picking this week. Sorry. But true. He is such a nose picking boss that he can sometimes be found sucking his thumb and picking his nose at the same time. Fire up the college fund people! And maybe his is a little man after all!



I am joining Jodi and her 52 Project at Practising Simplicity  http://www.practisingsimplicity.com 

An Update

About two and a half months ago I wrote about my son's anxiety (read HERE).  It was hugely cathartic for me, and I hope someday it will be cathartic and reassuring for him. In some ways it feels like his diagnosis was a lifetime ago. And like most things in life, it also feels like it happened yesterday. To be blunt, we have come a long way. To be honest, we have a long way to go.



When we finally arrived, after seeing a therapist for a few weeks, at the point where we knew we needed to loop in our pediatrician and talk about medication, I felt both a deep sense of relief and an intensified fear of the unknown. I could not wait to start his medication, and I was terrified of starting his medication. Researching side effects, and overall effectiveness of a medication, particularly in children, is a scary thing.

My son was ultimately put on a common selective serotonin reuptake inhibitor (SSRI), and forever more I will stand by the effectiveness of this drug, for him...for now. He started on a very low dose, and his pediatrician and I hoped and were optimistic that we would be able to keep him at that dose. While we were warned that the drug could take weeks to have any significant effect, I maintain that we saw a difference in him immediately. Perhaps a placebo effect, but my gut tells me it was more than that. I think the biggest and most immediate change was that he began sleeping. My eight year old child was finally starting to sleep through most nights. Bless. It. My heart broke for him and all of the sleepless nights we had struggled through, when he woke up after taking his very first pill and was so excited that he had slept. He was excited to have simply slept. He was proud of himself for having simply slept. He was relieved to have slept, but was skeptical too, as he should have been, since we had tried (and failed with) so many sleep remedies before.

Also, his "tantrums" ceased almost immediately. He smiled and became a hugger reborn. We witnessed tiny but more frequent glimpses of the little boy we had once been so familiar with. We continued with weekly therapy and talked some good talks. And while life was immeasurably improved I still can't shake the guilt.

I remember sitting in front of the doctor in tears quietly whispering that I wished we had done something sooner for my child. Even now there are times when I can not shake the images of his anger, his tantrums, the terror and sadness and frustration in his eyes. Sometimes I can not get out of my head the sound of my shrill voice screaming at him. Sometimes I can feel his sister's frightened tears as I wipe them from her tiny cheeks. And I think to myself...three, nearly four years. We struggled. He struggled. But it took years to finally get him the help he truly needed.

And yet, as things go when cruising through life, before we knew it he hit a wall, plateaued if you will. It was amazing, disheartening and eye opening to watch the medicine decrease in effectiveness. The pediatrician had anticipated that this might happen, and we were scheduled for frequent (and I mean frequent) med checks. In the beginning I was unsure how long he would take the medication, but once I saw the glimmer of hope that this SSRI brought, I became desperate to continue with it. At every med check my heart beat faster, wondering if we had arrived at the point where the doctor would recommend not continuing with medication. Thankfully just before our eleven day road trip vacation extravaganza his dose was doubled and prescription refills granted for the next few months. I was so hopeful that we had found "the answer". I was so naïve to think it was so.

I have to say I signed a tremendous sigh of relief when I knew that we would have a higher dose of medicine for our great family getaway. Because my pre-medicated son would have hated everything about our vacation. He would have hated the uncertainty of the drive. He would have hated the lack of schedule (in fact, he would have hated summer in general for the lack of schedule alone). He would have hated going to restaurants. He would have been paralyzed by the thought of which rides to ride at amusement parks. Tears would have been shed. Hearts would have been wounded. He would have tried to control each of our decisions. He would have missed home and the cat and he would have been miserable. My husband and I counted our blessings, and then watched as we saw anxiety try to push through the medicine and pull my son under again.

We arrived in South Carolina the day after Hurricane Arthur vacated. We were lucky. But Rip Tides remained, and they terrified my son. The girls...not so much. But him...he spent every second that he was in the ocean, not jumping waves or body surfing, but instead pulling his little sister "to safety." He demanded we spend our days at the pool. And honestly, it was easier there anyway because holy wind...so we did. Once the threat of being sucked out to sea diminished, we ventured back to the ocean. After all...we drove umpteen miles and so many hours to play ocean-side...not pool-side. We had one good morning, and then during an evening stroll met a man who had hooked a baby Black Tip Shark. Or Black Finned Shark. Or Some Kind of Shark (perhaps the evening stroll along the beach had been preceded by many Coral Reef Splash drinks??) Either way the next morning was met with more demands for the pool. Because, and we should have seen this coming, the kind fisherman who let my kids pet the Something-Something Shark also casually mentioned that "if there are babies out there, there are also mamas out there." Plans finalized. Pool vacation it was.

Since we have been back we have had another med check and it took all I had in me not to bring up how I felt my son was once again spiraling downwards. I really do not want to entertain the thought of an increased dose yet. But there are times where I feel him slipping. Succumbing. And I'm scared and sad.

While his medication initially allowed my husband, oldest daughter and I to spend two days and one night away from home hiking Mt. Katahdin, even the higher dose is no longer able to usher him through sleepovers at his grandparents.

Where his medication has provided him with a more sound sleep and I can now kiss him goodnight and not wake him up, (before the slightest touch would cause him to wake), he still wakes in the middle of the night roughly four times a week. Thankfully the medication has him in a place where he is able to fall back to sleep with relative ease (provided his father or I are next to him).

While his medication has allowed us to breathe again as parents, and as a family, we are learning that any sort of discussion regarding change...or me taking a vacation, or him going to college, or his sister going to college, or his cousin going to college is enough to allow anxiety to regain control of my child.

While his medication has not protected him from hurt feelings or feeling intensely inadequate in comparison to his friends, or those he looks up to, I am so thankful that medication has allowed the relationship between my son and his older sister to re-blossom. They used to be so close. So. Close. For years I chalked their increasing distance up to a boy/girl dichotomy. They could not find common ground because they were so inherently different is what I told myself. But since being on medication, I am in awe of the change between those two. They do have common ground. They can have a conversation.  They do like spending time with each other, and value each other's friendship and trust. Years of hurt feelings have been repaired in just a couple of months. And while I am so thankful, when I catch them playing together, or chatting over Harry Potter, or asking the other's opinion, I can't help but kick my own ass for not pressing therapists and advocating for bigger interventions years ago.  Yes, bickering and yelling and tattling still happens. And there are times when I want to throttle them both, but I can clearly see their love again. And for a while it was so one-sided. My son has always idolized his big sister, but for far too long she had a hard time...I don't even know what the word is. But she had a hard time with him too.

Ultimately we have learned that we can never let our guard down. We have learned that he takes the safety of his little sister as a threat. We know that when he begins to amass an arsenal of Nerf guns and plastic swords in his bedroom, or when he insists on sleeping with a "weapon," that we better figure out what he is thinking about, or what he has been exposed to. He struggles still to articulate his feelings, and we know that when he starts to unravel at any given time in a day, we need to quickly backtrack and try to eradicate the source of stress (be it a conversation, an activity, a show, a chapter in a book, a news clip).

As parents we have to be intuitive and smart and calculating about what we say in front of him, because we do not want to exacerbate his level of stress. We can not talk about moving. Or my husband's tenuous job situation. Or celebrating my 40th year and our 15th anniversary via an adult only weekend getaway. We can not talk about maybe taking the same weekend hike with him when he is in fifth grade. We can not talk about school. We have had to make a plan for school that includes homeschooling this year, if the first thirty days don't work out for him. We do not expect completely restful nights. We are very, very careful about what responsibilities we give him.

While his medication has allowed us to restock our patience and breathe easier, the wounds are still so fresh that when he has a bad day I immediately think the worst. Immediately I am in the place of "worst case scenario," telling my husband that this isn't working. None of it...the medicine, the therapy, the bazillion hugs that he requires in a day...none of it is really working. I can not ever pull myself from thinking of his future self. I worry about how bad this could get for him.

This learning curve is steep. It is fluid. It is not fun and can be exhausting and frustrating. There is no stopping anxiety. There is only a pause. Perhaps a mute for a couple of days or weeks. There is only coping. Not a cure.