Tuesday, June 30, 2009

Forward motion

Today, Ben made some forward motion that resembled an attempt to crawl. He was sitting on the floor, and instead of falling backward and then rolling toward his toys, he pushed himself forward onto his hands and knees. He pretty quickly collapsed on his face, but, hey, it was an attempt! He really had a great overall day today. He ate a lot, and played a lot, and did not throw up AT ALL! Now, that's my boy!! Keep it up, Benner.

I'm holding onto a hope that Ben will be able to crawl by Christmas this year. I'm going to hold on to this intention in my mind, and work with him each day believing that this can - and will - happen. What a fantastic Christmas gift this could make!

Sunday, June 28, 2009

Status Quo

Not much new to report in Ben-land. He's still wobbly. The frequency of his vomitting has decreased in the past month, but there have still been some unfortunate episodes. I've developed a sort of PTSD response to his coughs, as they are often the precurser to the big sloppy show. Fortunately, we finally have his swallow study scheduled, and I'm hoping that will offer some insight into his eating (and keeping it down) difficulties.

We've started the introduction of Kinesio tape, which is long bandage-like strips of tape running the length of Ben's spine, designed to help turn on his muscle tone. I don't know if it will help, but it's non-invasive and worth a try. It has caused quite a stir to friends and family who've wondered why Ben needs these huge BandAids.

Still awaiting some lingering test results. I'm growing tired of following up with the doctor's office staff who promise to call me back, but rarely do. Just one more thing on my expanding "to do" list. I find it hard to maintain motivation to keep hounding them, when I don't really believe that the answer will matter much.

So, that's it for now. Life goes on with Ben in his typical wiggly and giggly fashion.

Tuesday, June 23, 2009

Gawkers and talkers...

I belong to an online group for parents who have children with hypotonia, along with various other illnesses. Today, there have been a lot of posts from parents who are tired, angry, and offended by others who offer inappropriate advice, or who gawk, or who make rude comments about their children.

I believe most people have the best of intentions when offering their 2-cents worth. Speaking from my own experience with Ben, however, the level of exposure to advice multiplies exponentially with every layer of illness and delay. In the past 15 months of Ben's life, he has seen a minimum of 12 doctors, and probably 20 nurses, along with a case coordinator, a nutritionist, and weekly sessions with his physical therapist and occupational therapist. Add to that grandparents, aunts and uncles, friends, acquaintances, and the occasional passer-by, and you can see how many opinions might start to add up. Unfortunately, some of this advice does come with a not-so-subtle tone of judgement that suggests we, as Ben's parents, aren't doing everything we could do for him. I can't count how many times I've heard, "Have you tried...(insert random treatments here)??" My favorite suggestions are those distant recollections of a miracle cure such as, "I think my friend's neighbor's nephew's daughter in Montana had the same thing as your son, and a little vitamin C cleared it all up. Why don't you try that??!"

As for the gawk-factor, again, I don't believe people are intentionally rude. Unfortunately, many people are not exposed to enough diversity to easily know how to handle themselves when they encounter someone who is different from themselves, be it racially, culturally, developmentally, or medically.

I think the reason that the stares and comments can be so painful is that first and foremost, our children are our children... not just our "special needs" children. When life gets so full of evaluations, medications, and operations, it seems that all other people see is what is wrong with the child. We want desperately for people to see the beautiful, courageous, funny, and happy kids that we see, and not always be reminded that there is something "different".

After all is said and done, I don't expect everyone I meet to communicate with complete empathy about Ben's situation. I believe it's also my responsibility not to over-react to the well-intentioned helpers, the uninformed tactless opinion-launchers, or the just plain rude gawkers.

Saturday, June 20, 2009

You show 'em, Ben!

It appears that Ben overheard his therapists talking about his lack of progress.... and now he wants to prove them wrong! In the past couple of days, Ben has shown a small surge in strength, and he is actually trying to pull himself up to a standing position. For Ben, just to demonstrate the motivation to attempt this task is a big step.

He has also decided that he should now feed himself. Because of his ataxia, or incoordinated movements, this is a particularly tricky thing for Ben to do, but he is determined to do it nonetheless. If we try to take the spoon away to feed him ourselves, he squawks like a bird and refuses to eat until we give him back the spoon. I'm so impressed with his determination and his desire for independence. So what if he ends up with smashed carrots in his eyelashes, nose, and ears?! He gets some in his mouth, too, and we are so very proud of him.

Because of Ben's physical limitations, I'm afraid that sometimes I haven't always given him the opportunities to demonstrate how much he can do - how much he does know. Too often, I'm ashamed to say, I've just assumed he can't or won't want to do something. Now watching him try to feed himself and try to get around more on his own, my eyes are more focused on the possibilities for his success. He is trying to express his real need to grow up and show the world all of his amazing talents. I'm so glad he is stubborn enough to get his point across, even if he needs to use creative bird-squawks instead of ordinary words. I do so love my little Ben.

Thursday, June 18, 2009

A great message.

This morning, my husband found me in the living room around 6:30am. I was standing and holding Ben while watching TV and sobbing. I was watching a recorded Oprah show about miracle babies. Included in the show was a particular YouTube video (Link included below) about a father's tribute to his son. This little baby was born with a genetic disorder that was "incompatible with life" and although he only lived 99 days, his parents cherished every moment.

These parents are such a great example of living for today...living in the moment...approaching life with a thankful heart instead of asking "why me?" For me, this was a great way to start my morning. My head and heart are better focused, and I'm so thankful to these brave parents for sharing their love of their son with the world.

To see the video on Oprah's site: http://www.oprah.com/media/20081001_tows_99balloons

Tuesday, June 16, 2009

Hard to hear

I'm with Ben everyday, so I know that he is not progressing very quickly. If I look back six months, I can see that he's learned some new skills since then, but he is still so far away from gaining much independence.

Yesterday, his physical therapist explained to me that in fact, Ben is not responding to therapy as well as they had hoped. Even though I already knew this, somehow when I heard it from her, I felt like I'd swallowed a brick. I suddenly felt very heavy. She explained that she believes Ben's strength is improving, but his involuntary muscle movements seem to be interfering with him achieving his goals. I had to fight back my tears.

His therapist went on to tell me of another boy she has worked with who reminds her very much of Ben. Like Ben, this other boy has never received a diagnosis that explains his delays. She explained that this boy is now two and a half, and can crawl and pull himself up on furniture. That gave me some hope, I suppose. She finally added that she feels Ben's happy and motivated personality will help him a lot. OK, I thought... I'll hang onto that for now.

Sunday, June 14, 2009

Bleep Bleep Bleep... etc etc

Sometimes I wish I was carrying a "mommy cam" so I could show everyone just exactly what my days are like. At one point today I thought Ben's mouth was bleeding, but it turned out to be red playdough. Anyone out there who has kids knows that every now and then you encounter a rough day. My rough days are unfortunately complicated by Ben's delays and wiggly nuances.

Today, Sarah had another birthday party to attend...two hours at an indoor jumping/bouncing playground. I should mention, my husband has been traveling for seven days now, and he was supposed to be back tonight. I was so excited to see him and was counting the hours...until he called today to say he'd be a few more days. I was disappointed, but I reminded myself to stay positive and stay in the moment... blah blah blah.... I was still disappointed.

Let's fast forward to the second hour of today's birthday party.... Sarah is wound up and squealing that high pitched laughter that only 3 year old girls and dogs can hear. Ben has had enough of the whole thing. Cranky, his only real method of protest is crying and jerking himself backward as hard as he can. He will not tolerate the stroller. He will only slightly tolerate me holding him.

Now it's time for cake and ice cream. Sarah is thrilled, and proceeds to get totally hopped up on sugar. Next, she is given a helium-filled balloon. With this, she has reached a state of total bliss. She and her little friends are bopping their balloons all around the room. Just then, I notice her doing the pee pee dance. It's the unmistakable holding of the crotch while bouncing back and forth from foot to foot. While holding cranky Ben, I take her by the hand to take a potty break. However, instead of walking along with me, she breaks free and goes running around the place like a cheetah on crack. She is feeling quite proud of her escape until.... the unthinkable.... she loses her balloon.

Sarah collapses to the ground in total despair. Great sobs. Lots of tears. I give her a hug and then continue to lead her to the potty. Reluctently, and still crying, Sarah goes into the stall with Ben and me. She can NOT stop crying. Wailing is more like it. Others in the restroom are starting to comment, and I'm certain that they believe I'm trying to chop her feet off with a dull knife. I try all my great Montessori mommy tricks. I calmly say, "I understand you're sad, Honey. Let's try to take some deep breaths." No luck. More crying, and then she says the worst four words she could say today (of all days)... "I want my Daddy." I wanted to just sit down and sob too. I wanted her daddy also.... Mostly at that moment I wanted him to be in that nasty stall instead of me. I had to internally censor all the words that were now coming to my mind....

Finally, after ten minutes -that's right, TEN MINUTES - Sarah calms down enough that she can actually pee. In the midst of her meltdown she has taken off her pants and underwear and kicked them across the stall. She now sits down on the dirty floor to put her clothes back on. Except... she was also given a long necklace as a party favor, and she has accidentally put her leg through the necklace, so she cannot pull her pants all the way up. She has to take everything back off and start over. I am now so hot and so tired of fighting to hold on to jerky, squirmy, cranky Ben that I seriously consider just grabbing her and running out of the building, letting her moon everyone in our path. Ugh.

We finally did get out of there, (yes, with Sarah's clothes on) and I'm thankful to be home now with a nice glass of Cabernet. Zen philosophy does help me cope with Ben's medical issues. I can focus on my breathing and find a state of calm and peace in almost any situation. However, for Sarah's meltdowns, it turns out I need to add some red wine.

Cheers. Here's to an easier day tomorrow....

Happy morning...

It's Sunday morning. Our week with Grandma and Grandpa is over, and everyone had a wonderful time. While Ben did suffer some from his dog allergy, his medications were helpful to him, and he powered through like the little trooper he is.

I learned this week that Ben loves to play in water. He had his first chance to play in a sprinkler and a splash pool with other children. Ben has always disliked bathtime, so I was very surprised to find him happily splashing in the water! How nice to watch Ben enjoying the same activity as all the other children.

For me, "staying in the moment" continues to be the best defense against stress and worries about Ben's health. It's amazing, really. It requires practice, but the payoff is so worth it. I would love to expand on my experiences with mindfulness meditation, but at this very moment, Sarah is determined to bring my attention to giving her doll a makeover. This sounds important....there is lipstick involved.... yes, I'd better take a look!

Tuesday, June 9, 2009

Uh oh.

There is a loud and ugly sound in my house tonight. It's the painful sound of Ben coughing. Among Ben's challenges is that he is highly allergic to pets. He just spent 24 hours at Grandma's house, (note that every family member we have has a dog) and now his skin is all broken out and he has a hacking cough. Poor little guy seems miserable. His coughing and subsequent screaming are very suggestive to me of yet another possible round of pneumonia. We are scheduled to go visit the other set of grandparents tomorrow, and I can feel my anxiety level starting to rise. I'm keeping my fingers crossed that he starts feeling better by morning. Every parent knows how hard it is to watch when a child is sick. With little Ben, this is pretty much the norm.

Fortunately, I attended a seminar today: The Psychology of Happiness. I learned some valuable tips for cultivating optimism amidst the most challenging of circumstances. I'm planning to put those to good use tonight. Those tips along with a vodka-tonic... Wish me luck.

Sunday, June 7, 2009

A happy summer weekend

This was one of those uneventful but pleasant weekends of summer. Ben is healthy and happy right now, so we could just relax and feel like a normal family of four! We did the usual - yard work, laundry, grocery shopping. On Saturday afternoon, I took Sarah to her friend's birthday party, and loved watching her socialize with her tiny preschool pals. On Sunday, we tried to BBQ in a thunderstorm, and enjoyed spending some time with friends. (It turns out that rain water adds a pleasant zing to the ordinary grilled burger!) Ben and Sarah loved having our friends as a captive audience, and they laughed and giggled all day.

Ben has now made it FIVE days without vomiting. I'm calling this vomit-watch 2009. With each passing day that he goes without throwing up, he seems stronger and happier. I'm hoping that his body will finally have a chance to get better nourishment, which will in turn allow him to maybe gain some muscle strength.

Not much else to say for today. It feels so wonderful when we can just relax into the normal rhythms of daily life without worrying about Ben's breathing treatments or medications or doctors appointments. When we have days like these, Ben's delays and struggles seem to fade away a bit, and life feels so much lighter.

Friday, June 5, 2009

Falling, falling, falling...

Have you ever had one of those intense and terrifying dreams, where you feel yourself falling, and you wake up just before you hit the ground? That is the sensation I feel everytime I allow myself to imagine our future with Ben. As much as I try to stay in the moment, I occasionally will catch myself thinking about what it will be like if he never gets any better. It is important to note here, that I am a social worker, and before I finished college, I provided direct care services to physically and mentally disabled individuals. I know what it's like to change the diaper of a sixteen year-old girl with CP. I know what it's like to use a gait belt to get someone in and out of a wheelchair. I know how it feels to spend 12 hours a day alone with someone whose only methods of communication are crying or hitting. I sometimes imagine how I'll feel if I'm forced to drive the big ugly van with a wheelchair lift, instead of the sexy, sporty 2-door that I've always wanted.

Today was one of those days where these thoughts floated in and out of my mind. It gets so overwhelming that I literally feel I'm going to fall into a sadness so deep that I may not find my way out. A feeling of panic overcomes me, and I have to quickly think about something else. I never imagined myself as a stay at home mom, let alone a stay at home mom of a severely disabled kid. Yet, here I am. I love my kids more than life itself, yet the pain is still very real and always just below the surface.

Thankfully, I have meditation... and Matt and Sarah... and Ben himself... to bring me back to into the moment. Just breath. Just one moment at a time. Just keep going.

Day two... the dry spell continues!

Well, two full days and nights have passed without Ben throwing up. Unbelievable! Could we have found a solution? Having a break from the vomit has made both Ben and me SO much happier! It's been a vast stretch of free time that I am usually spending cleaning the floor, changing Ben's clothes and then soothing his grumpy little self after each episode. I'm keeping my fingers crossed for another day....

Wednesday, June 3, 2009

A note about big sister, Sarah

As this blog is about our family's journey with raising our son, Ben, I want to be certain to document one huge contributor to our success... our beautiful daughter, Sarah. At just 3 years old, there is no doubt that Sarah is wise beyond her years. She is so loving and kind to her brother, and for the most part, this just seems to come naturally to her. In spite of all the extra time and attention that Ben requires from my husband and myself, Sarah never responds with jealousy. She is starting to notice that other friends of ours, who are the same age as Ben, are able to walk, run, jump, and talk... and yet, Ben can not. I have explained this by telling her that Ben's muscles are weak, and that it is very hard for him to learn the things that other babies are learning. Sarah often responds by saying, "Well, there is no better baby in the world than our Benny."

Today, I watched while Ben was rolling on the floor, struggling to reach a toy he wanted. Sarah was playing alone across the room. I didn't say anything, I was just watching. Ben wasn't crying or anything, but it was clear he was starting to get frustrated. All of a sudden, Sarah walked over to where he was, and said, "Here's your toy, Ben. I know things are hard for you, but I will help you."

How could a mommy ask for anything more?

A small victory!!

I can not believe it. Ben made it through this ENTIRE day without throwing up at all. I honestly can not remember the last time I could say that. Yesterday, Ben's nutritionist had explained an article she read about children whose stomachs are unable to expand properly while a meal is being eaten. She suggested reducing the volume of meals, and trying to feed him more often. Although I felt we were already feeding him small but frequent meals, I tried to go a step further with that today, and... no vomiting!! Hooray for Benjamin! I'm keeping my fingers crossed for tomorrow.

Ben was such a happy boy today, and he even had his first trip to Incredible Pizza with his sister, grandparents, and me. I was so excited to see him take his first ride on the carousel. He held on perfectly, and was so proud of himself. He loved watching Sarah run around and giggled right along with her all afternoon. What a great day. No doctors appointments. No illness. Ben was able to just be a happy little boy and spend a fun day with his family. What a rare, but much appreciated, break for us.

Tuesday, June 2, 2009

Tigers above and below me.

In a book by Geneen Roth, (When You Eat at the Refrigerator, Pull Up a Chair) she recounts her own version of an old Buddhist story. To quickly summarize, there was a woman who had dieted and exercised her whole life. Because she followed a strict high protien diet, she denied herself the pleasures of sweet fresh fruit. One day, she found herself running away from some tigers that had escaped from captivity. As she was finally trapped on a cliffside, with tigers both above and below her, she discovered a ripe strawberry. Realizing her death was inevitable, she ate the strawberry, and enjoyed it more than she ever could have imagined. Then she was eaten by tigers.

As Ms. Roth summarizes in the book, the moral of this story is that there are always tigers above and below us in our lives... job losses, illnesses, weight problems, etc... but it is up to us to continue to enjoy the pleasures and joys that are also always around us. It is important not to wait until we reach some imagined perfect time or place, because that perfect time will likely never arrive. With this story in mind, I will recap my afternoon....

After a very short nap, little Ben woke up crying. Knowing he had a doctors appointment in about an hour, I asked my daughter Sarah to change her clothes and get ready, while I changed Ben's diaper, fed him, dressed him, and tried to make myself presentable as well. Sarah chose a beautiful sundress, and Ben happily went about eating his lunch. Ahhh... how nice. Then, just as I was about to take the kids out to the car, a huge thunderstorm hit. Drats. Rain. Oh well, I thought, we can make a run for it. I buckled Ben in the car first, and then loaded the stroller. I buckled Sarah in the car... when to my surprise... she had forgotten undies under her dress. OK. Back inside, and up the stairs to get some panties. Once back to the car with the undies, I discoverd Ben had thrown up his entire lunch all over his shirt and carseat. Drats. Back inside for towels. Back outside for the cleanup. All the while, I'm standing outside the car in the thunderstorm. Ben sneezed about 10 times on the way to the doctor... huge gobs of yucky goo sprayed everywhere. With all this, we still arrived to the doctor on time.... only to wait AN HOUR in the waiting room. You might imagine how happy my children were to wait quietly on a chair for an hour. Needless to say, I felt surrounded by tigers at this point!!

Fortunately, I remembered this story from Geneen Roth's book, and I was still able to laugh at the silly things the kids said and did along the way. After Ben's appointment, we went to get library cards, and had fun choosing our first selections. We had a nice dinner and blew bubbles outside for a long time.

I do love ripe strawberries, and I hope I never pass one by.

My little Snoopy...

One of the hardest parts of life right now is the physical strain of carrying Ben around. He is around 20 lbs, and his lack of muscle tone, combined with his sometimes uncontrolled muscle movements make him very hard to carry. He generally lacks the ability to try to hold on or support himself very well. I explained it to my husband as it's like trying to carry a 20 lb beagle around the house all day. Snoopy Ben. Wiggly, yet still so very cute.