and sometimes all you need is a friend

…who will bring you home-made chicken noodle soup, chicken pot pie and potato soup and let you ooh and aaahh over her sweet, delicious, newborn grandson and listen to you whine and whine with you about how life can suck sometimes and laugh with you over the fact that social media does sometime make our life less challenging and more fun.

She also can forgive you for writing that incredibly long run-on sentence in the previous paragraph.

It’s good to have a friend like that.

Yeah, I know, I’m blessed!

found hope

Despair. It seems to be everywhere and even more contagious than the H1N1 virus. It sucks that everyone has so much crap just bringing them down these days, you know? I mean, how can I enjoy a good whining session when everyone else is dealing with crap of their own?

Yeah I’m wallowing a little lately.

Kids are sick. One kid apparently “had” mono in the past but doesn’t have it now and where was I when she had mono? Of course now it is probably just a virus and we need to ride it out. Awesome, thanks, Doc! In the meantime, tylenol and motrin is our friend.

My training for upcoming 5Ks, 10K and then the half marathon is a bit off. Of course I try to push all the harder and then do nothing…no-thing and then train all the harder.

Hubs remains on vacation unemployed and dragging out and on since …good Lord, Holly was pregnant when he was last working a steady, real job with a steady, real paycheck. I ask…yes, I dared to ask if he had called the union hall lately to check his status on the out of work list and he grunts and shrugs. I know I should be grateful that he didn’t scratch too. But that wasn’t enough for me. Call me bitchy but I had to wonder OUT LOUD a little more about this vacation out of work status of his.

I know, I should just shut up and pick up the slack, work more hours and bring home the bacon. Unfortunately (and fortunately for others) patient census has been low and has remained low for a number of months now. I hear it is not exclusive to our unit and our area either. Are birth rates falling because so many people out there are out of work and losing their homes, etc; or are we doing such a fantastic job in the world of perinatal medicine that birth rates of sick and premature infants are dropping off? I’m thinking it’s the times, the economy. I know I wouldn’t want to have a baby right now the way things are…oh, wait. I’m dealing with early menopause right now. Me, pregnant? HA!

Yeah, I’m wallowing. Perhaps I’m wallowing just a little too much. Out walking along the Tidewater Bikeway today I found myself wallowing just a little bit more. Alone on the trail and alone in my thoughts it is pretty easy to get carried away like that and I did.

And then I saw it along side the trail of the path…

Just a little bit of hope.

It won’t solve all of my problems, real or overwrought, right now. But I needed this. I REALLY needed this right now. I picked it up and put it in my pocket. The power of that one smooth little stone seemed to make my step a little lighter, a little faster. I actually found myself smiling…just a little, but I was smiling. I saw another little piece of hope further up the trail. I left it though because in times like these, I imagine that there is someone else out there who could use just a little bit of hope to get them through another day. To whomever left a little hope along the Tidewater Bikeway, I thank you from the bottom of my heart. It is exactly what I needed right now today.

owwies DO always get better- a guest blog

Owwies always get better. At least that’s what I tell my guys. At their age it’s a good enough working theory and all they need to know for now.

Boots, the 3-year-old, was skeptical a month of so ago when he encountered the most painful owwie of his short life, scraping off half the skin on the pinky side of his hand in a nasty case of road burn from a treadmill.

Within weeks, though, he waving the hand in stunned amazement. “It did get better!”

Big Guy, 5, was a doubter about a year and a half back when hernia surgery sheered an elephant-trunk-like appendage from his belly and closed a hole in his abdominal muscles. He’d wake up crying in the wee hours for a few days after the operation, begging for his old belly back. “It didn’t hurt,” he’d weep.

Now, though, he takes great pride in his brand-new belly button that looks almost like his brother’s.

And I, too, had trouble believing when I was about Jodie’s age and I blew away a section of my femur in a car accident. I’ll admit to having more than one case of the weepy “why me’s” while I was stuck in a hospital for three weeks as my friends enjoyed the summer.

Dad and I have been lucky so far that the guys’ owwies have been minor and short-lived. Except for the surgery, which we at least had ample time to plan for, to arrange work schedules, to see that there was help with Boots as Big Guy recovered.

I can’t even imagine how to begin dealing with what The Big Top’s gone through of late, ever since a happy weekend at a dance competition, complete with Mom-appropriate juice boxes, went bad. Way bad.

I suspect my reaction would be a bit like Laura’s, which is to run myself into a frazzle commuting 80 miles to visit my kid in the hospital while still half to three-quarters sick myself. Moms are like that, aren’t they?

Which, of course, doesn’t help anyone much in the long-run. But we never can see that when we’re in the throes of it.

Here’s wishing Jodie the best during what has to be a frustrating hospital stay – in isolation, no less. And here’s wishing the rest of The Big Top the best during a juggle that’s recently become 10 times more complicated.

And here’s wishing Laura the wise counsel I saw on Twitter just minutes ago:

“I’m thinking when the doc said I need to rest for the next two weeks he meant something different than what I can do. Thinking his idea better.”

Yes, it is. Hint, hint!

Debra Legg is a blogger and free-lance writer in California’s Central Valley. You can read more about her adventures in boyland at debralegg.com.

not your sainted mother

Ahhhh Mother’s Day! Filled with hearts and flowers and expressions of love and admiration for all the awesome, amazing, wonderful mothers everywhere. It is a well-deserved day of recognition for mothers everywhere as well as a great way to stimulate the economy with cards, candy, flowers, perfume, jewelry, brunch at a fine restaurant…All mothers love, love, love these things even if they protest to the contrary. Still all the consumer worship on Mother’s Day pales to the handmade frame fashioned from old puzzle pieces or the tiny handprints of your little munchkin in blue paint on red construction paper or the delightfully, lovely macaroni necklace that you wear proudly to church on Sunday morning because it is the perfect accessory for you favorite dress.

I have to confess that I am a little ambivalent about Mother’s Day, the way it has become an institution in of itself to worship and praise the awesomeness of Mom. Some of my conflicted feelings stem from my own complicated and toxic relationship with my own Mom. I love her. I love her so much. But I just can’t be a part of her life nor allow her to be a part of mine. Logically I understand the poison comes from her untreated bipolar disorder. Emotionally I just can’t get past the damage it has done to me and I dare not risk the same damage on my own family. So if I knew where she was and wanted to send her a Mother’s Day card I would be struggling to find just the right one in the Hallmark-y type store. All the warm fuzzy cards just don’t seem to express truthfully how I feel. We both know any of them would be a big fat lie artfully rendered in a heart-warming poem with soft focus art. Mom is/was not a saint but she is my mother and yes, I do love her.

My ambivalence continues in that I know I am not a sainted, perfect mom as well. Compared to the moms described in those cards I, well, I present as a bad mother. At least I am in good company.  Seriously, I can’t wait for her book to arrive to the Big Top! While I know that I don’t fit her description of a “good” mother:

“A Good Mother remembers to serve fruit at breakfast, is always cheerful and never yells, manages not to project her own neuroses and inadequacies onto her children, is an active and beloved community volunteer. She remembers to make playdates, her children’s clothes fit, she does art projects with them and enjoys all their games. And she is never too tired for sex.”

I am confident that I am the kind of mother “who loves her kids and does her level best not to damage them in any permanent way. A good mother doesn’t let herself be overcome by guilt when she screws up.” Oh how I have screwed up… a lot. Don’t believe me? Just ask my kids. Thankfully, they forgive me…right, kids?…Just like I try to forgive myself as well.

Happy Mother’s Day to Moms everywhere…to the sainted ones, to the “Good” ones, to the good ones like me, to Ms Waldman, to Holly Austa (my darling daughter #1)…

and to my own Mom…wherever you may be. I love you.

Your daughter,

Laura

the best shot

I am madly in love with this picture! It is a cellphone shot that my daughter, Zoë sent to me from her high school football game tonight. As much as I wanted to be there to watch Abby cheer, I missed the game because of a headache. The quality absolutely sucks…and yes, Zoë, I know this picture would have been so much better if taken with the phone that you want to upgrade to. Nevertheless, in spite of the quality, this is an amazing picture.

You see four boys in this picture. The little guy in yellow is my son, Daniel. To the left of Daniel is Abby’s boyfriend, Jon. Daniel just adores Jon and it is plain to see in this picture that this is an absolute truth. I am so thankful that Jon takes the time to hang out with his girlfriend’s little brother. I don’t know if he realizes it but the time he gives my son is the most amazing gift he could possibly give to his young friend. Oh and yes, he does score major sucking-up-to-the-parents points because of it. He’s a good kid and we are all fortunate to know him. Someday we can say we knew him when…hopefully he will always remain so generous…when he becomes the greatest film maker ever.

We should all freely give some time from time to time. Few other gifts we might give could ever compare or be remembered as well.

A man can only be judged by his actions, and not by his good intentions or his beliefs. ~ Paul Newman

compassionate responsibility

It is no secret that my son Daniel is developmentally disabled as a result of his extreme premature birth. I have blogged about his physical, emotional and mental struggles and his triumphs all the time over the last four years of blogging. He has come a very long way from that day when he fit from head to rump perfectly in my right hand and he has much more of a difficult, incredible journey to travel. I can’t be prouder or more nervous for him as he faces each day of his amazing life. I imagine any parent of any child with special developmental or medical needs feels the same way that I do.

Recently I overheard a conversation between two young mothers about their reasoning for not expanding their own families…okay, I was eavesdropping! Anyway, the young ones both concluded that although they love being mommies and would love to have more babies they just can’t because what if the next one is (cue soap opera tense moment music) “damaged in some way like retarded or something?” They go on to agree that it is just too hard and too much for any family to take on this responsibility of a damaged child and since there are no guarantees…

Oh yes they di-id!

Believe me, I so wanted to whip around and offer more than my 2¢ worth. These dumb bunnies desperately needed to receive some of my mind’s spare change whether they wanted it or not. But I reigned myself in. I remained silent in the knowledge that, like my t-shirt that I was wearing stated, I was blogging this!

Really, people like this can’t be judged too harshly. They are clueless because they haven’t lived anything but their own sheltered life. They have no idea of anything other than their own meager existence. Permit me, if you will, to offer a glimpse into the life of just one family raising a school-aged child with developmental disabilities.

We have our bad days as we see our child struggle with dressing  and other, more personal self care activities that most kids his age accomplish without any help. We have the days of total, complete frustration just trying to complete the weekly first grade homework packet. Those days we also have a moment or two of gratitude that someone at his last IEP meeting had the foresight to suggest homework expectations be amended to allow for a slower, self-guided pace on an as needed basis. We see how hard he struggles to “keep it together” when he is sensory overloaded in the chaos that is the school playground before and after school. Some days we aren’t sure how we feel when we come to learn that his struggles and triumphs are fodder for yard duty moms’ gossip on campus. Yeah, he is amazing in spite of all his obstacles but stop talking about him like he is a freak of nature, I want to rage at them.

We have the good days too. When he asserts his preference for how he wants to wear his hair or what shirt to wear we are proud that he knows what he likes and can voice it. One day he very quickly reads through his weekly sight words with no prompting at all and we just squeal with delight on the inside. He confidently figures out his math word problems and we are amazed. As he bravely takes on the arduous task of spelling and writing his surname we quietly cheer on his determination. It is a freaking long name for any first grader to learn how to spell and write…just ask his four “normal” sisters.  When we hear his teachers describe all the things he is accomplishing in the classroom we just want to jump up and down and cheer. Sure he has miles and miles to go but just look at him.

What an amazing boy he is!

This week, even more amazing to me is his compassionate heart. At the end of the school week last week I found in his backpack this award.

According to his teachers, Daniel took the initiative to reach out to a friend in need. One of his classmates had gotten into a bit of trouble and was disciplined. His teacher tells me that the poor boy was devastated that he had gotten into trouble and was on the verge of tears. Daniel, witnessing this, walked over to his classmate and put his arm around the boy’s shoulders and whispered, “It’s okay friend.” He then walked his friend over to a free play area of the classroom and got his classmate engaged in a new activity. The classmate’s transgression was forgiven and forgotten. Daniel reached out to reassure his friend of this Room 1 absolute truth. Mrs. L reported that Daniel’s reaching out to a friend in need touched everyone. As she said to me, we all should have the compassionate responsibility Daniel has.

What an amazing boy he is!

Make no mistake, life with a child with special needs is filled with good days, bad days and truly amazing days. This was one of those amazing days. My son taught an entire classroom, teachers included, compassionate responsibility. What family wouldn’t celebrate a day like this?

Want to know more about life with children with special needs? Take five minutes.

holding on

Nothing being said under the Big Top and here in the internet world. Nothing being said at all. The only thing happening is me holding on to this perfectly precious baby girl and her holding on to me.

And there is definitely nothing being said about what appears to be a double chin. Just focus on the baby, dammit!

I DO get by with a little help from my friends

I wasn’t sure how my recent ranting, bitching and moaning would be received. I actually sat on those thoughts for several days because I wasn’t sure whether or not y’all would “get” it. I did respond personally to one dear friend’s query and was shocked at what I spewed into her lap so I hesitated writing about this further…note to other dear ones who were messaging and emailing that is why I haven’t replied. But it would seem that most of you do understand. I was being purely selfish in my post. I am angry and upset with myself for not making waves and keeping the peace and I am angry, upset and worried over the very real prospect that I might find myself raising at least my youngest children alone and as well as enjoying the milestones in all of my children’s adult lives and the grandchildren. The way that I see it is we both have worked too hard together creating and building this circus act to not enjoy it together for a very long time. Bill, I hope and pray, seems to be beginning to understand. Maybe. We shall see.

This is my therapy and your encouragement, support, hugs and prayers are definitely better than Prozac.

Thank you!

hope springs

While grocery shopping for the Big Top I picked up a couple dozen of these gorgeous tulips. Yeah, I know Mother’s Day is almost here but who says I can’t buy myself some flowers five days before Mother’s Day just because I am a mom?

I guess the store clerk thinks that I probably shouldn’t because as she scanned them she asked if these were for a special mom in my life.

Why yes, they are for me! I just love tulips. They are just so hopeful to me.

Hopeful?

Yes, hopeful. I grew up in Pennsylvania where the winter can seem so endless sometimes. Whenever I saw the tulips blooming I knew that it (winter) was almost over and it gave me hope.

The clerk is probably wishing she never commented on the pretty flowers.

Then the lady in line behind me joins in.

I grew up in upstate New York and I know exactly what she means.

True, winter is long gone here in my neighborhood but I can’t help but buy me a little bit of blooming hope to brighten up the Big Top and share with my circus. No, this doesn’t mean that anyone is off the hook come Mother’s Day!

While I breathe, I hope ~ Geanini Barbeli

expectation that needs encouragement

You know announcing an expected baby should be happy news.
It is happy news even if they weren’t quite ready to share it. Right now Kelly and family sure could use our thoughts, prayers and LOTS of encouragement right now.
I am walking tomorrow in honor of my amazing son, but I am also walking for women like Kelly’s wife, who do everything right before conception and during pregnancy and yet there is still complications. I have a very good idea what she is going through right now and having watched Bill from my bed 11 years ago, I can imagine what Kelly must be feeling too.
On the surface, to many, the March of Dimes is all about cute, successful preemies with happy endings. But it is so much more than that. It is about support and education of young women before conception, during pregnancy and after. It is about research in perinatal and neonatal medicine. It is about lobbying for funding and laws to enhance the quality of life for all pregnant women, babies and children. It is about educating healthcare professionals on the latest in the care of women of child-bearing age, the babies they conceive and carry and their children.
Go over to Kelly’s blog and give some love to him and the family. It’s a long way until September and they need all the support we can give.