Tracy Gumfory

I Can Thank Down Syndrome For That...

Please stop what you're doing and go over to Holly's blog to marvel at her beautiful little Brooke. She has written an amazing post about perspective and achievement, for our babies, and for as as parents. Please go read it here. She inspires me.

Thank you, Holly. Knowing you is just one more thing that I can thank Down syndrome for!

Auntie Bits

Please pray for my dear friend Bits. She and one of her children have been hit with that wrench and hit really, really hard. Hard times come and hard times go. There is usually a reasonable hope for good times to return. When there is not that hope, there is despair. It is truly desperate times when it involves our children. Then hard times become suffering and torment, and no matter how bad things have been, that damned wrench just keeps coming back to hit them again and again, leaving bigger bruises, deeper wounds, injuries that will not heal. That cannot heal. That damned wrench has claimed far more than it's pound of flesh and I hate knowing that it still flies, bloodied with their pain, to hurt them again and again many more times before this is over. Please pray with all of your might for my friend and her child.

Keep your head above water Bits. You will get through this.

Click on the Music Player to hear this beautiful song*.

Did you ever picture your life like this?
No shooting star to grant your wish.
Are you everything you hoped you'd be...
or caught somewhere in between?
You dropped your nickels down a wishing well
and prayed for luck to cast it's spell,
to bring you closer to your dreams,
that always seem just out of reach.
You pray to God the moment when
you feel the current pull you in.
Tryin' to keep a head above water
has never been harder.
Even when it feels hopeless...
you're gonna get through this.
Head above water
gotta fight from going under
even when it feels useless to wish...
you're gonna get through this.

Have you ever felt like giving in?
Tried for hours but just can't win?
Tell yourself you're not good enough?
The struggle alone is just too much.
No one's there to hear you scream.
Gasp for air but just can't breath.
Did you ever think you'd see the day
when you'd watch your life get washed away?
You pray to God the moment when
you feel the current pull you in.
Tryin' to keep a head above water
has never been harder.
Even when it feels hopeless...
you're gonna get through this.
Head above water
gotta fight from going under
even when it feels useless to wish...
you're gonna get through this.

Did it ever hurt so bad
that the thought of feeling lost
would never end?
Well you will think again.
Tryin' to keep a head above water
has never been harder.
Even when it feels hopeless...
you're gonna get through this.
Head above water
gotta fight from going under
even when it feels useless to wish...
you're gonna get through this.

~Theory of a Deadman
Head Above Water
The Truth Is...Album

*Can anyone tell me how to make the music play automatically?

Well then...

July 8th came and went this year without any notice until days later...

It was an after thought this year, that date that seemed to have such profound significance just one year ago. Jack, you've come a long way, baby...and so have your Mommy and Daddy.

Three weeks ago, I brought home a swimming pool. The water park would cost $228.00 for the package deal that we could use for roughly six weeks, since they go back to school the second week of August. The pool cost $249.00, plus no driving, no parking, no inevitable registration ticket for the van because I am incapable of ever paying for it on time, no over priced concession stand food and drinks, no wet seats in the van, no eeewwww every time I see someones diapered baby in the water, and we can use our own pool until it gets cold, whereas the water park closes after Labor Day every year. The pool took less than an hour to assemble and start filling. It is NOT my fault that the Dearly Beloved decided that the entire back yard had to be cleaned up, taking a full day, before the pool could go up. I would have made the kids clean up the area the pool was to be set up in and done the rest later as incentive for the kids to be able to get in the pool!

Two weeks ago I brought home a swing set. Again, it was a great deal, and all three kids love it. I bought a baby swing for Jack, and there's a nifty saucer thing that will encourage his abdominal muscles to strengthen while he balances himself in it! That took a full day to assemble.

Last week, since we are a family of five now, and since the front porch glider canopy is long gone, and cannot be replaced anywhere, and it's only a two-seater anyway, and looks really junky and broken down on the front porch, I brought home a new glider. The old canopy-less glider is now under the tree in the back yard, and the new glider resides on the front porch, shiny, gleaming, smooth and canopied! Which really has nothing to do with us being a family of five, but it's just the perfect size for My Love and I to sit on the porch in the evening breeze.

And The Dearly Beloved said to me, "If you bring anything else home for me to put together, I'm going back into the house and pretending I never saw it. You're on your own." I'm pretty sure that he meant it, but I'm not going to test it out. I did see his chest swell out quite a bit when he saw how much fun Jack was having on the swings and saucer while The Girlie and The Poddest of Pods were whooping it up in the pool.

I love my new job...been there since June 8th! At my old job I was working about 80 hours per week with nary a thank you, all for $50.00 per week travel reimbursement. This job? I'm working about 40 hours per week for roughly the same pay, but the travel reimbursement for two weeks paid for the swing set, the pool and the front porch glider, including tax!

A huge thank you to the Dear Daddy for all of your hard work and for all of the great fun your children are having as a result!

New Toofies

Poor Jack has been miserable trying to cut his last first molar. It's taken twice as long as the other three to come in put together...but it's finally in as of this morning! It's tooth #8, on the bottom left!

Letting Go...

A few nights ago, Jack was standing next to Princess' kennel having one of his nightly holler-fests with her. She licks his fingers and when she stops, he hollers at her to do it again. Suddenly he let go. He stood for all of 3 seconds before plopping down on his butt. I tried to photo-document the event, but with Jack down, Princess laid down and they had a staring contest instead.

Despite the fact that I absolutely forbade Stoopid Katee* from telling me any new thing he does until I've already told her that he's done it for me, she reported last week that she let go of his hands and he stayed upright for a few seconds in a standing position.

Other fun stuff he's taken to doing is pushing the dining room chairs across the floor and walking behind them full speed, sometimes faster than his little legs can carry him, and he's all but running around furniture now, instead of cruising. Some not-so-fun stuff: his Father allows him to crawl from the couch to sit on top of Bailey's kennel and sit up there like he's king o' the kennel. What? Really? Who is this man? It amazes what what Jack gets away with doing around his Dear Daddy. The bathroom door is always closed now. He has not discovered the lid to the toity raises, but he has figured out to use the brute strength of his arms along with the traction of bare toes to skinny up the side of the bathtub, over and in...head first. He's narrowly escaped injury only because he's only allowed in the bathroom when someone is there to prevent a topple. We're aiming for walking by two. I keep hearing how much trouble he'll get into then, but really, the boy gets into tons of trouble now!

There are so many moments in our children's lives that make us burst with pride. Who knew some of the biggest would be so simple. I asked Jack, "Where's your nose?" and he poked his own nose several times hard enough to smoosh the tip down. Katee taught him that! Then I asked Jack, "Where's Mommy's nose?" He lunged forward and sank all five sharp little nails into the tip of my nose! Yep, he actually made me bleed, but he found my nose!!

*We love you, Katee!

Growing Up

Today my little girl hit a major developmental milestone, but she forbade me telling anyone. And I promised that I would not. So I can't. So don't ask. Because I cannot tell you. Period.

My cell rang in the late morning. She'd snuck the phone into her bedroom, away from the nurse and the sitter. Oh, my heart was pounding. I'm sure the ring wasn't any different than it's ever been, but even before I saw where the call originated, even before the first tentative "Mom?" I was bracing myself for the words that I knew would come. And they did. I swear I had at least a few heart palpitations. I pulled over to the curb and directed her in the step-by-step of what to do. She responded by snapping my head off. I said I'd be home within the hour and made it there in 45 minutes. I wanted to make sure she was not having any discomfort, but even though we were sequestered in the bathroom with the water running in the sink, every privately and discreetly whispered inquiry was met with shortening the stub of my neck where my head used to sit. Dang! I can't wait for next month!

In the evening she timidly asked "Mom. Do I have to wear it to bed?" All timidity was instantly gone when I replied "Yes, sweetheart." You'd have thought I'd strangled her favorite pet and served it to it for dinner with a demi-glaze of apricot sauce! Clearly, it is entirely my fault that she is, in her own desperately quiet words, "Suddenly...I'm no longer normal."

I'd hoped this event would take place outside of school hours. Wish granted. It causes me great pain that she is so very adamantly refusing to discuss any little detail. She gets infuriated when ever I try to give her direction or tips. So, I made a list, sent her brother outside with a Popsicle and tackled it all at once in one fell swoop. There are things she needs to know, like, yes, you have to wear it to bed. And, you need to wrap it up before you put it in the garbage. Stuff like how to tell when it's on it's way, what to look for, how to alleviate the discomfort. The angrier she got, the calmer I got. I finally said that I wasn't sure why she was so angry with me, that I just wanted to make she she knew what to do and how to do it. That's when the tears came and she whispered so, so very quietly, "It's just that...suddenly...I'm no longer normal." I wanted to scoop her onto my lap and rock her like a baby. Instead, while I had her attention minus the glares and daggers, I assured her matter-of-factly that it was indeed perfectly normal and that all of her friends would be experiencing the same things very soon if not already.

So, the less said, the better. I'll wait for her to ask what she wants to know. And then I found the pile of laundry and the comforter that looked like a small farm animal had been slaughtered on it...four days later...balled up in a corner of her closet. Thank goodness for ordinary old household hydrogen peroxide!

Scrawny Ronnie

Jack finally weighs exactly 22 pounds! Yeah! I am quite certain that Katee, the nurse extraordinaire, is entirely responsible for this feat! She rocks!

He can also, thanks to Katee, "Rub your tummy, rub your tummy!"
He can't quite "Pat your head! Pat your head!"
But he can "Now let's find your nose! Now lets find your nose!"
All of which is amazingly adorable! Especially if you hum along to the old classic nursery rhyme Where is Thumbo, as it's intended!

The Dearly Beloved and I were worried to be pregnant again at our late ages, and you already know how distressing a Ds diagnosis is, but I swear on all that is sacred, I thank My God in Heaven every single day for this child.

Jim Bob Duggar once said that God gives us exactly what we want, even when we didn't know to ask for it.  I believe he was exactly right!

Since my Little Butter Ball has finally gained adequate weight, he has graduated out of the infant seat and into the big boy seat I bought way back in May before he started losing weight! Katee and I installed the seat to the accompaniment of much heckling from the Dear Daddy. Of course it's easy for him to heckle and harangue ~ he's never been the one to assemble the carseat/stroller combos, swings, bouncers or any of the other stuff that comes along with babies. He has built each baby's crib, if you count correcting the botched job the kids and I did on Jack's loaner crib. And he has faithfully been the one to lower their mattresses at each juncture of their development. I suppose the heckling did lighten the mood when Katee and I were looking to each other to know what to do with poorly illustrated diagrams. It's not as if we're both college educated ~ oh, wait. We are!

I Got Canned

So, after my fun and friendly office mate and I spent a good deal of time hashing out what we'd each been told in orientation and compared it to the reality of the demands being made of us, she summed up the conversation by fulfilling a promise she'd made to me back in early February, to tell me first if she was leaving. "I'm putting in applications every where. I have three interviews set up. I can't do this anymore. They keep demanding more and more for the same crappy pay. They never say 'thank you,' or 'good job,' or give any sort of reinforcement for our efforts. They just keep piling more and more on our work loads, which would be fine if they were paying us for it." Dang. I knew it would happen eventually, but she was the one bright spot in all the office hours this job demands.

On Tuesday, after the Memorial Day Holiday, I went to my office manager to air my concerns. The biggest concern I had was about being on-call. Yes, they did say I'd be on-call every other weekend. They never mentioned that I would not be paid for it. I was supposed to alternate with my office mate every other weekend. Our Director of Clinical Services, or DOC, whom I'd long ago taken to thinking of as a rabid squirrel with a drinking problem was supposed to be on call Monday through Thursday from 6 pm to 8 am. The reality of it was that my office mate and I were getting calls all night, every night. Within the first month of starting at that company, the DOCS wasn't taking call at all. Ever. Not weekdays. Not weekends. The next big gripe was being sent out to homes for nurses who only work 11pm-7am to do their evaluations and competencies, only to have the nurse refuse because "Why isn't the DOCS doing this? That's her job, not yours. You aren't even my supervisor, so how can you do my evaluation?" My standard answer became that the DOCS brought this to me today/yesterday and said it had to be completed no later than today or you will be out of compliance and will not be allowed to work. Which led to my next gripe. The DOCS has the LVN's requirements months in advance of no later than today/tomorrow, and she demands that our schedules for the following week be turned in the previous week, yet time and again, she'd fly into our little office in a tizzy and demand that we both rearrange appointments we'd made with families weeks in advance because "If you don't get this done by tomorrow, that nurse will not be allowed to work!" She completely put the entire responsibility for our LVN's livelihoods on us, instead of on her own incompetence where it belonged. We knew it was wrong. The LVNs knew it was wrong. The DOCS knew this would send us on a mad scramble to change dates and times with all of our families, often pushing our visits into the dinner and bedtime hours, and us scrounging up childcare for the middle of the night to go see a nurse who didn't start her shift until 11pm. The families didn't like it, the LVNs hated it, and as the RN, we got the brunt of all their frustrations. Funny how the office manager knew nothing of this. That was Tuesday afternoon. He left on vacation late Wednesday. I was called into the DOCS' office Thursday morning with the "This just isn't working out. You're not happy here and we both know you aren't. It's just not a good fit" speech. She slid my final check across the desk and I rose to leave. "Thank you!" she said cheerfully. I said, "Well, I wish I could say that it's been a pleasure, but it hasn't and we both know that it hasn't." And I packed up my pencil cup, bottom drawer snacks stash and my desk-top fan and left.

All the way home I tried very hard to be upset about this. It didn't work. I wasn't upset. I finally called my office mate, who was just leaving a patient's home, and told her that I'd just been fired. "You are joking, right?" I said no, I wasn't joking. She asked if I'd been given a reason, in light of the obvious lack of a valid reason, and I repeated what the rabid squirrel had said. She was the one to point out how very typical it was for the rabid squirrel to wait until I'd turned in all three of my recerts before she fired me. We bantered for a while about just how much this company really does suck and she finally said more than asked, "You really aren't joking, are you?" So we hung up with promises to keep in touch and her parting words were, "Well, congratulations! I'll see you next week for Willie's recert!"

I was home by ten am. I took a wonderful nap and then raced out the door for a 12:15 interview. I was quite pleased to call Katee, Willie's LVN, to tell her I'd landed the job. When I casually mentioned that I'd gotten canned, she was immediately worried about losing Willie. Until I'd gotten hired at this interview, I was worried about Willie losing her. We love her. We don't want to lose her. I'm not entirely sure what the pay is, but it's local, so no more hour long commutes to the office. That's good for at least $600.00 in gas every four weeks. And it's all intermittent visits, no supervision, no case management, no nurses getting ticked at me for correcting their notes, no middle of the night phone calls, no massive amounts of Q/A, no putting up with the continual PMS of the recruiters, and best of all - no rabid squirrel. It's win-win. And I waited a full 34 hours before I told The Dearly Beloved. It went something like, "Oh yeah! I forgot to tell you that I got fired yesterday! But not to worry, I start at a new job Monday!"

"...I still hate my job.
My bosses are *icks.
I don't get paid nearly enough
to put up with all of their *hit..."
~Theory of a Deadman
I Hate my Life,
Scars and Souvenirs Album

My Little Girl

On June 7th, the sweet little bundle of pink I cuddled in my arms just yesterday will be promoted to Middle School. I've been fully aware and more than cognizant that she'd be leaving sixth grade and elementary school this year for seventh grade and middle school in the fall. I've been so consumed lamenting the poor quality of the only middle school in our district, the only one in our side of the whole danged town, that I was kinda gobsmacked when her teacher sent home a letter to parents asking that their graduating sons wear a suit and tie and that their graduating daughters wear a bright colorful dress with low heeled pumps for the grand occasion. And that's when it hit me like a ton of bricks...her very first promotion, commencement or graduation...depending on how to want to word it, was upon us. Oh. My. Goodness.

And I've vacillated between despair and outright denial ever since. We went shopping for her graduation dress this past weekend, just me and her. Every single dress I loved on her, she hated. Hated. Including the two tailored florals that gave me a glimpse of the shape her body will eventually take. I'm glad she hated those. Well, one of them anyway. The one I really loved was suitably little girl enough to have been quite tastefully worn to a birthday party or to a formal occasion. And it was on sale. But she hated it. After I dismissed every single dress in the juniors department because they lacked any sort of shoulder beyond a spaghetti strap and quite often not even those, and her staunch refusal to wear anything from the children's department, a wonderful sales lady from Formal Wear trekked back and forth between our dressing room in juniors, bringing every bright colorful dress she could locate - from the children's department. She is growing up, and after The Girlie found something to hate about every single dress, she finally consented to a sweet little pink number if it could be found in any other color except pink. It couldn't. Not in her size. Just when the sales lady and I were too sadly beaten down to do more than whimper, she brought in a gem. "I know it's not bright and colorful, but..." The Girlie's eyes lit up. She tried it on. She loved it. They had her size. It was on sale. We were sold. It's white linen with flowers embroidered in fine black thread all over the skirt, ruffle and bodice. There's a wide black and white polk-a-dot sash. It's dignified, but still a bit of little girl.

Next up were shoes. The Girlie knows how to shop. She went right for the clearance rack, found a pair she loved and we sent the sales lady off in search. She brought back another pair, too, "Because they are also on clearance." The Girlie changed her mind and wanted the new selection. The shoes she originally picked out were $17.50. After finding three left shoes in her size of the new selection and waiting patiently for nearly an hour to locate one right shoe, I nearly coughed up a kidney when the sales lady says "Your total comes to $60.45." I thought they were on clearance, I say. "Oh they are! They're Anne Klein. They were originally $155.00, so you have a $170.00 worth of shoe after tax." She was so jubilant about it. I was not. They were simple black flats with a tiny heel and a decorative perforation in the black vinyl. They aren't even leather. But after she had searched for almost an hour to find the matching shoe, I paid out my next weeks' lunch money and we left with the shoes. I did have to put my foot down to the $48.00-on-sale necklace at the same store. It was composed of three black chains with black beads and huge ugly silver Gothic crosses. She was not pleased with me. "Mom. I thought you were going to let me pick my stuff out." So I replied that she'd hated everything I tried to put on her and that she had picked out her own dress, as well as the shoes that were over sixty bucks, and that - oh yeah - I just got fired on Thursday afternoon, so being $120.00 into this little excursion so far, I wasn't about to buy a necklace that cost nearly as much as the dress and shoes! "Fine" she mutters. The pensive pre-teen years are treacherous territory. This conversation took place while we waited for well over 15 minutes to tell a store manager about the excellent service we'd gotten from the gals in Ladies Formal Wear and shoes. She offered me a 10% discount for next time. I declined politely, saying we were not often in the mall. The truth is, their nylons are $22.50. For one pair. One.

Next up, since we were in the mall, we hit Claire's for a headband and a necklace. She chose a skinny black band with a frilly black bow on the side. Back to my little girl. I picked out a funky little necklace made of three black chains with black beads and pretty, feminine crosses and while she didn't immediately dismiss it, she didn't gush over it either. She asked "Can we hang on to that and keep it in mind?" What I said was Yes, of course honey. What I was thinking was more like You ungrateful little snot! If you'd seen it first you'd be trying to talk me into buying this for you! So I carried it around the store and when we got to the register with her headband she turned to me and asked "Can we please get the necklace too, Mom?" We purchased both for a little over seventeen bucks, but we're buying the danged nylons at Wal-mart. I'm not paying $22.50 for a pair of nylons, even if they will be her first ones.

As for getting fired, it was more like "This just isn't working out. You're not happy here and we both know you aren't. It's just not a good fit. Thank you though!" And I got a new job the very next day! So there!

Baby, Baby

Our nurse Agnes stayed with Jack last Tuesday, so Miss Katee could have a day off. She called me to ask me in her thick German accent (love her!) "Does Veal-yam say the vord beh-bee? Because I was singing to him and every time I said the vords beh-bee, beh-bee Veal-yam, or sweet beh-bee, he said back to me 'Baa-bee!' It vas very clear. He must have said it at least ten times!" I adore Agnes. She is short and white haired and older, and simply everything I'd picture a German Grandma to be. She even smells like lavender. Given that my ethnic descent is very strongly German, I have decided to keep her for my own. She is wise and nurturing, strong and tender, educated and motherly and skillful. One thing she is not is given to flights of fancy. She would not have said Veal-yam said Baa-bee unless he actually said it repeatedly. So you know, I pestered Veal-yam all evening to say Baa-bee. Played with dolls, showed him pictures, patted him while I said the word. Late in the evening I was getting him down for bed, snuggling with him. I said "Goodnight, sweet baby," and he said all whispery-like baa-bee, closed his eyes and went to sleep. Baa-bee. Oh my!

He's cruising around furniture and transferring from one piece to another on a daily basis now. I know it's no longer big news, but it still fills my heart with pride and happiness every time I see him do it!

Friday night, June 3rd he looked right at his Daddy, reached up to yank a handful of mustache out and said the word we've been waiting for "Dada!"

Tonight we celebrated our 25 year anniversary. Twenty-five years! And yes, we count every year we've been together. Our anniversary is actually June 5th, but we had a sitter for tonight! The Olders stayed home to terrorize a sitter with their bickering, and Baby Veal-yam accompanied us to a restaurant where we'd had our first date. The Backwoods Inn first opened in 1962 and I've been a patron there since I was four years old. I have tons of fond memories of the place and even get nostalgic when I'm just driving past it! The Beloved and I saw the first booth we ever sat in there, but it was already occupied. Not to worry though, we were seated in a booth we have occupied before on other occasions. We started with Baby Veal-yam propped between the table and the booth on his side, but switched to propping him in the middle between us, "So we can share him," according to The Dearest. The ambiance is a mix of Victorian elegance and antique Western, and it's appropriately dark and intimate enough that you can go casual, but also not feel out of place in your Sunday finest. We've done both. Tonight we were casual. Our meals started with clam chowder and garlic bread, just the right amount of crispy on the outside, and soft on the inside, perfect for dipping into steaming bowls of creamy clam chowder. Dinner for Him was New York Steak and Lobster, for Her, prime rib and lobster. We both enjoyed the twice baked stuffed potatoes, and I even spied him not only trying the green beans, but going back for another forkful. Ordinarily, green vegetables do not cross his lips, with the rare exception of broccoli. Then again, broccoli is not really green when it's smothered in cheese sauce, now is it? The meal was perfect, the service impeccable, and these two patrons very happy. Veal-yam behaved wonderfully and commanded many comments from leaving patrons, everything from "He's so cute!" to "What a good baby! We didn't even know he was here!" The people on either side of us certainly knew he was there when he let out a jubilant and boisterous tirade or two launched as his stuffed orange dinosaur! We switched the dinosaur out for the Woody doll and Veal-yam spent the rest of the evening chewing on alternating arms and legs of the beloved Woody. The foggy moonlit drive home through the canyon was a nice touch too! Who would have thought there would be fog in June, but there it was. And baby Veal-yam? He seems to adore darkness. He punctuated the ride home with intermittent bursts of happy giggling. We don't know what he was laughing at, but he was having a grand time. So, Happy 25 Years to us! I'm looking forward to the next 25!

New Skills and Abilities

I've suspected for a few weeks that Jack is transporting items to and from one place to another, mostly because when he's the only one awake and playing on the floor, a toy will be here with him, and the next thing I know is that the same toy is now over there, and Jack's left the room for the front room, the hallway, or better yet, hanging on the baby gates to the kids rooms and hollering at them to wake up and come play. But today, oh today in my foggy sleep deprived over stressed haze, I watched my dolly boy crawl and transport his beloved butterfly across the floor with him in a very grubby little paw. Yippee!





He also self fed himself a Nilla wafer this evening, All. By. Him. Self! Yeah! Rhetorical, I know...but so what? He fed HIMSELF!

New Pictures

I've gone back to May 1st and posted pictures. Please, do go marvel at what my son has been up to ~ don't miss Mother's Day ~ it's a crowd pleaser!

What IS this?

Every now and then, part of one or both of Jack's palms get bright red and lasts for about an hour. Today, both palms got entirely red, up and over his fingertips, and they were extremely warm and rather puffy ~ plump, if you will. There was a slightly raised edge outlining the red around his palms. It lasted for about six hours today. It didn't seem to bother him in the least ~ he's dreaming while I snapped this picture. We've done nothing new. No new soaps, detergents, cleansers, pets, carpets or anything else I can think of. Any ideas? It's very curious.

Spinach Souffle

He loved it!

See?

18 Months!

Willie is 18 months old today! What a journey it's been! I could spend hours and hours staring at the screen trying to type words to describe what he means to me...but if you're a Mom, you already know. Don'tcha? Do you ever find that your special needs children occupy a slightly...more layered area of your heart? Not better, not deeper, certainly no more loved than your other children...just more...fast? Elemental? Immediate? Inherent? Penetrating? Your feelings for that child more...intrinsic? More connate? More utter?

I've been struggling to define just what Willie means to me that is different than my other two cherished babies. It alludes me. Ever since that first day of knowing, even before the positive pregnancy test, and waaaay before the positive ~ make no mistake, I mean shout-it-from-the-rooftops POSITIVE! ~ amniocentesis, Willie has had his adumbration sidled up to my heart, buried into my soul, my very being. But do I love him more? No. I do not. I love them all equally, but very differently. The relationship is different with each child. Just as I am sure their relationships with me are all different. Should I feel badly that they might each feel a different kind of love for me? A different layer of love for me? Then why do I feel almost sacrilegious trying to define what I feel for Willie? I don't know. Like the definition itself, the feeling of guilt defies me.

But that's not what this post started out as! It's supposed to be this:

Willie has a new tooth, on the bottom right, several spaces over from the next one. I don't know which one it is yet, and I won't know until it reveals it's shape, but it's #7 for Willie!

He's been cruising along furniture for a week now! I finally got to see him do it myself, even though The Dear Daddy and The Darling Daughter have been telling me he's done it for a week now!

I've already posted a gazillion pictures of him sitting up tall!

Willie once again weighs 21.04 pounds (21 pounds 2/3rds ounce!) and he is 30" long.

He is still wearing size 6-9 and 9-12 months clothes, and wears a size 4 diaper.

He can sign "more" and "all done" and Miss Katee taught him to high five!

And lest I imply that he's all sweetness and light, I must tell you, the boy has learned to pitch a monumental fit when every little thing does not go his way. This includes dropping a toy, being put down before he's ready, being put into his crib before he's ready, having anything taken away from him, the Mommy-dog walking away from him, the ball rolling away from him, his bottle getting away from him, that it might be Tuesday, or the clock struck ten or whatever...if it displeases him, he screws up his face all squishy and squinty and lets out a howl that hurts the coyotes' ears. And turns red. Very red. Limbs all out straight and rigid. A palatial fit to be sure. It's kinda comical that he can spew such wrath, but I bet it won't be for long.

So, sorry I waxed all sappy...didn't mean to. The boy has stolen my heart. I'm just sayin'...

Post Script: Toothlette #7 is a molar!

More Sitting Up Tall

Willie is fascinated with anything that has fabric straps or handles, and in addition to my work bag that is hemorrhaging field charts, he has quite a good time with all of the totes brought in by his various therapists - never mind the toys, he wants the straps on their totes! And yes, I realize that my glider is hemorrhaging it's foam and stuffing, but that poor chair has nursed two babies, and valiantly spent endless hours pumping breast milk for Jack.

See how tall and straight his back is? I am so proud of this milestone!

Can you tell?

One toy in each hand!

And yes, Auntie Bits and Auntie Dee-Dee, that is the outfit you bought him last summer!

One day soon I will see about re-stuffing and upholstering that poor glider!

Sitting Up Tall!

Not only is he sitting up nice and tall, but he's also using both arms to play with a toy!

Love this view of his features



And right now, this is my hands-down favorite photo...such joy! I can still hear his gleeful laughter as he flings Woody around by his ankle ~ and I know Woody feels extremely loved!
Please just focus on the baby...if I'd known he was going to do something cute, I would have put some effort into his surroundings!

They're Up To No Good

Mother's Day including some new skills, thanks to The Dear Daddy









I wish I'd gotten a picture of the triumphant grin Jack was wearing when he finally scaled the steps to land safely on the couch...
...but he knew where the "big kid" toys were and made a bee-line for them!

Post Script: Sorry for the poor picture quality. On the next trip 'up the steps' Jack only needed help with the first knee up...after that he scrambled to the top lickety split to get those toys at the top!

Happy Mother's Day

My Mother's Day this year started off with this!It's everywhere!

Yes, that's poop in his hair. Green poop, no less!But the rest of the day was terrific! And seriously, just look how tall he's sitting up!

Biter Biscuits!

He's finally able to bite off chunks and chew them up - and he LIKES it!

Sitting Tall!

Crouching Dog...

...or bruised lip?Sorry...that's the only yoga term I know!

"My Happy Place" (Katee's Story)

I am the nurse, Katee, that Tracy spoke so kindly of in the post entitled, "She's A Keeper." I was flattered by Tracy's remarks and appreciative of the opportunity to discuss my previous encounters with other Down's Syndrome children and their families. It has been refreshing to be in Tracy's home, entrusted with her precious Little Stinkerie, while she is working, and see a family truly embrace the gift that Willie is. My story begins a year ago, when I was placed in a 7,000 square foot home in a ritzy gated community, in the Santa Clarita Valley. My patient was a 3 year old twin diagnosed with DS. I was excited to work with her but quickly my excitement turned into anger and resentment. The family was using me to disclude their child from family outings, because according to them a child with DS can't appreciate Disneyland or trips to the zoo, beach, etc. This family was fortunate to have money at their disposal, mom was afforded the privilege of being a stay at home mom and chose to only play mom to her two "normal" (her words, not mine) children. My heart was conflicted. I felt like this child needed me. Because unlike her family I enjoyed outings to the park or mall. I proudly introduced her to friendly passersby. Eventually, her mom got rid of me, presumably because our relationship became so intense and our views were worlds apart.

My next client was unfortunately much of the same, but with an added twist. I was instructed to keep this beautiful child in her 10 x 10 foot room. She was approved for much needed therapies that she never attended because mom wouldn't make the 10 minute drive to the clinic. I did my best to teach her fine motor skills, teach her to walk, etc but I was frequently instructed to stop and turn the TV on for her instead. I did my best to educate the parents as to her capabilities and encouraged them to set goals and assist in her journey to achieve them only to be met with resistance and then later get blamed for her delays. It is said that opportunity knocks but for me it rang...

And brought me to Willie......

Here I am now, in my happy place as Willie's nurse. I am a part of a team working to make Willie the best little person he can be. I no longer dread going to work, but embrace every new day, every sign of progression and every kind word of appreciation. More than anything I am grateful for all of my experiences, good and bad, with these amazing kids. Each and every one of my patients will always be in my heart. (And hopefully I'll be in theirs)


Posted by Katee, Nurse Extraordinaire!
Thank you, Katee, for baring your heart to us.

Happy ALL The Time...

...just ask him!

Keeping The Pearlies White!

Whoaaaaa!

He's cruising! I saw it with my own eyes tonight! Every one else has seen him do it...and now I have too! Yeah, Willie!

Stinkin' Cute!

She's A Keeper!

So when I get home tonight, Katee, our nurse, asked me if I'd gotten Will's sedated ABR appointment yet. I tell her no and remind her that the audiologist said it would take 4-6weeks before we get our appointment notice in the mail. So she asks, if tubes are recommended, would I get them put in. I said yes, that it was extremely important that he be able to hear well in order to speak well, and then I mimicked someone who cannot hear or speak well. I said If he can't even say his name clearly, who is ever going to want to promote him any higher than the grocery bagger* or the cart boy* using the jerky rapid cadence and softened consonants of our older disabled citizens who did not have the benefit of early intervention and speech therapy. And her eyes welled up and spilled over. She was stricken. She said it really hurt her that society does not realize the value of children with Down syndrome. That it angered her that so many wonderful people were denied opportunity without ever being offered the chance to try. That she would love to parent a child with Down syndrome. She's certainly a keeper.

Katee's story is not for me to tell. I will invite her to my blog to tell it in her own words if she would like. What I can tell you is that her experience in being Willie's nurse is different than with her previous two charges with Down syndrome. Different in that Willie has full run of the house and does not spend his entire day and night in his bedroom. Different in that Willie's family celebrates him and marvels at his being. Different in that Willie is given every opportunity for therapy, to learn, to grow, to be. Different in that Willie will grow up with expectations placed on him. To go to school. To attend college if he chooses. To get a job. To marry if someone steals his heart. To live as independently as he is capable of. To be a productive adult. To be happy. To make his own choices. To live. Katee is a woman half my age. Her other two charges were not in years gone by, back in the dark ages when parents hid their imperfect children away. Nope. These are very recent events. As recent as this past March. Modern day children in modern day families. Secluded in their rooms. Not provided with therapies. Fed, clothed and sheltered, but hidden. Denied. I understand her tears, and I hurt for her having seen those things, but I thank my God in Heaven every day that she's come to us.


*There is certainly nothing wrong in being a cart boy or a grocery bagger, but while the stars are ours to reach for, I will hold Willie as high as possible to reach for whatever his heart desires.

Weight...

We've been stuffing The Jax-Snack full of every high calorie, high fat item we can think of. When I say we, I mean his nurse Katee and I. He gets egg yolks and avocado for two of four spoon fed meals a day, yams loaded with full fat butter, egg yolks with hollandaise sauce, almond meal mixed with coconut milk yogurt, egg yolks with butter, flax seed oil in everything it can be disguised with, oatmeal with butter and local honey, some variety of yogurt with every meal...you name it, we've tried it. Tonight for Easter dinner he had mashed potatoes loaded with butter, just a bit of gravy, stuffing loaded with butter and at least a half cup of sweet baked beans. He really enjoyed the baked beans and I think the best part was sitting up at the table with the whole family for dinner! I toyed with the idea of grinding up some ham too, but he spit out every tiny piece that I tried to slip into another bite of food. For all of this effort, we've gotten tons and tons of dirty diapers. Last week he weighed 20.02 pounds. This week he weighed 20.04. I guess we're attacking this weight loss issue by gaining 1/3rd ounce at a time. At least he seems to be genuinely enjoying the new variety of foods in his diet! Please, do add any high fat, high calorie ideas you may have!

And I promise to post Easter pictures soon!

New Pictures

I've gone back as far as April 1st to post pictures...just scroll thru my mindless rantings until you hit pictures!

This Little Allstar...

...spent the entire night last night in his own bed, in his own room! He greeted me in the morning bopping up and down doing standing practice at the crib rail! And this afternoon, he took a nice long nap in his own bed, in his own room!

Scratching, Pinching & Biting, Oh Dear!

Clearly, we need some help. Okay...I need the help, because as both of Jack's nurses assure me, this neck pinching, hair pulling, ear scratching, jawline/chin biting and digging of his pointy little chin into the soft flashy part of one's face? Reserved for me alone. When I scoop Jack up out of bed in the morning to a lesser degree, or when I come home from work to a much a greater exponential degree, his little face lights up, his grin spreads across his face and his arms scoop around my neck while he burrows into me. And seconds later one hand is pinching my neck, trying to gain leverage to climb higher in my arms, and the other hand and often both are grabbing fistfuls of the finer hairs at the back of my head to pull himself higher, the pain of which is only matched by his forceful grinding of his chin into my cheeks. All the while he makes a breathy and excited "Ooooooh, oooooh, ooooooh!" sound. Yes, he clearly loves me to pieces. Yes, he misses me while he sleeps or when I'm gone. Yes, he very clearly is happy to see me and knows who I am. But it hurts. It hurts bad. I see stars. I used to be able to extricate myself fairly quickly. Lately though, more often than not, I need help! I can only grab one hand and keep from dropping him...or more likely, suspending him like a pendulum from my scalp and flesh! By the time I wrangle one hand free, I can hear the hairs tangled in his other hand popping from my scalp by their roots on their way to the floor. When I try to free that hand from my recently cropped mane, the first hand either grabs neck skin or another batch of hair! By this time Jack is singing out a chorus of "Eeeeeee! Eeeeee! Eeeee!" and exuberantly bouncing up and down in my now tenuous grip. This is about the time he sinks those little fang like bottom teeth into my jaw or chin. Those top teeth are real charmers, too! So please, help me out here! I've tried the disapproving scowl. He thinks it's funny. I've tried putting him down-he screams like his little heart is breaking into pieces. I've tried - yes I admit it - slapping his hand when he does this at nap time. That just ticks him off. I've done the nice, soft, gentle mantra for so long it isn't funny. By the way, he gets nice, soft and gentle for about ten seconds then his little eyes gleam and he digs into whatever flesh is handy with redoubled efforts. Help me. Please. I adore that he's so happy to me, but it's becoming a very painful and worry fraught event to come home! COMMENT, Please!

A Shiney New Wrench

Took Willie for a more advanced hearing test yesterday. The verdict? Moderate bilateral middle ear hearing loss. Dang it! I thought he might have some mild hearing loss in the left ear. I also thought it might be his tiny ear canals. Or wax. Or something. I didn't see this one coming. The very lovely audiologist (seriously, I loved her manner!) said he may hear better than he is able to indicate, but based on his behavioral responses, she's estimating his loss as moderate. Both sides. In the middle. Dang! I did not see this one spinning nor did I hear it's whir, feel it's wind...until it chunked Willie right in the head. I haven't had five minutes to even think about how I feel about it. Eventually I will cry. And then I will get over it. Because Willie will need someone to show him the way. And maybe I'll just cry now. Dang.

Brothers...

Playing With Sunshine

Jack has been so fascinated with this late afternoon ray of sunshine that appears on our kitchen floor every day. There was a rug there, which he pulled away after failed attempts to grab the light. You can see his elongated thumb and fingers as he waved his hand. Maybe he can get a better idea of how to grab it from this angle...

This seemed like the perfect plan until the slippery rug undermined his footing...

Okay...let's try this!

Jack found that even standing on his legs, that ray of sunshine just would not be picked up!

The 'Too

Here it is, almost finished, almost healed. I still have to get some work done on the faerie to bring the purple in a little further, and add pixie dust to her dandelion puff body!

Too Precious For Words

Sleeping babies have long been my weakness. Just ask Auntie Bits, because I have pictures of all of her babies sleeping, until I was blessed with my own. This cushy matt material is wall-to-wall in our home now. Well, everywhere there is tile floor and no carpet. It's meant to protect a little noggin from the terrors of learning to move his body about, as well as all the crashes that come with it.

This unexpected baby has been more blessing than anyone deserves. I love him so. There are no words to contain this love, only ineffective attempts to describe it.

A Transfer...

...such a small thing really, but oh was it celebrated! Last night Willie-Pie was engaging in one of his new favorite activities, standing at the coffee table playing with toys on it's top. And then something caught his eye in his Daddy's hand, and he transferred easily from table to couch to get to it! The Dear Daddy whooped! "Did you see that? Did you see what he just did? Did you? He went from standing here to standing over here! Did you see it?" Yes, I saw it! In all honesty, I was distracted and I may have missed the significance of this event if My Beloved hadn't called attention to it. How sad is that? But he did call my attention to it and I did see it, and so we gave each other that knowing look that says, He's getting more mobile and there's a whole new list of mischief he'll be getting into. Oh no! And we smiled to each other.

As I type, Jack is laying on his back in front of the kennels, rhythmically smacking himself in the head with the mesh metal kennel door. I think he likes the noise. He will also spend a good amount of time rocking his head into the heavy metal screen door, the glass sliding doors to the backyard, his mirrored closet doors. They all make a great rumbling noise, and he doesn't cause himself injury. I've seen him take aim at other surfaces and deliberately bang his head into them. If a satisfying noise is produced, he continues. If no noise is produced, he gives it one more whack for good measure, giving the object another chance to make an entertaining noise, and if still no noise is produced, he then goes on his merry way in pursuit of other exploits. Do any of your pre-toddlers engage in this kind of self-stim?

Oh, My Heart

Yesterday we ran some errands and on the way out of one store, one of The Girlie's favorite songs was blaring from one of the cars. We smiled knowingly to each other without saying a word. Such little moments between a Mother and Daughter. We were on our way to the next and last stop...picking up her ice cream birthday cake from Cold Stone Creamery. Her birthday was last Wednesday, a school day, so we celebrated that day with presents and again yesterday with cake!

A large red truck parked next to us. A smiling little girl had her name emblazoned on her window in flowery lettering and I noticed because it's the same name as My Girlie. Another little girl was smiling from the other seat. They were laughing together about something. My eyes automatically looked for her name on her window, and even in reverse, I could read the bold flowery letters clearly. Hannah. Two little girls. Two sweet names. Will it ever stop hurting that we lost our Hannah?

Of course not. And some days, most days really, it does not stab as deeply. But yesterday, with both of our girls' names emblazoned so boldly, so freely, so vibrantly in other parent's hearts...yesterday it hurt deeply.

Fastest ER Trip Ever

Yesterday morning The Little Jack-Snack woke up with some serious green crusties all but sealing both eyes shut. I smeared some water based super mild makeup remover over both eyes and let it sit for ten minutes, and then wiped it all away with nary a protest from The Snackster. Checked a temp. Normal. Listened to his lungs. Clear. Tried to see into his little ear-balls ~ after three days of every doctor in the state probing everything from his eyes to his parts, he was having nothing to do with me going at him with an otoscope! And yes, ear-balls is a word! Google it!

So, my week long fantasy of actually getting some sleep this weekend was shattered first by the fact that I am on call this weekend, and second by Jack waking up fussy and inconsolable at four am. After trying for 10 minutes to soothe him and getting no where, I decided we'd better get up and be more aggressive with the Mommy comfort. And that's when he put his little palm on my cheek. It was hot. I took him to the nursery to check him over and as soon as the lights were on I was treated to the vision of my baby's face smeared with dried green gunk from forehead to chin. Yuck. Green snot from both nostrils. Greenish yellow crap in the lacrimal ducts. Temp? 104.0! Had liquid diarrhea for that diaper and squishy, more full bodied diarrhea a few minutes later. Off to the ER we go...

...checked in at 4:55am after finding a near empty parking lot and a slot near the door, which is really good because the temperature outside was 26.8. Called my on-call recruiter to advise I might be out of cell-phone signal range, advised she'd call my boss for any issues. Saw the nurse, who took the time to coo over him, didn't like how he looked, put an O2 sensor on him, 97% on room air, checked him over, had a squishy diarrhea diaper, got weighed, found out he's lost another 2 ounces for an even 20 pounds with a diaper on. Played with the O2 sensor cable, seemed delighted that Mommy could not take it away from him and say "No!" Got cooed over by every one from housekeeping to engineering, tried hard to stick his head between the rails on the gurney, got mad that I wouldn't let him. Next he tried to jettison himself over the top of the rails instead, laughed at me like it was a funny thing when I wouldn't let him do that. Saw the doc, who also took the time to coo over him. Doc checked him over, said the measle-ey looking rash now spreading across his cheeks and neck is viral, got cooed over by security while we waited for our 'script. Left. Called my on-call recruiter to tell her I was back in cell phone signal range, advised that no calls came in, my boss was not disrupted from her peaceful slumber. Went to the pharmacy, avoided vomit on the pavement right where I get Jackie out of the car, got Jack back into the car while avoiding the vomit and scrambling to figure out where I'd left the 'script, found it the top of my on-call bag in the back of the van where I'd put so I could find it while I was bungee-ing down the stroller I'd wheeled Jack into the ER in. Avoided the vomit while once again getting the baby out of the car, went into the pharmacy, got cooed over there, turned in our 'script, read 'Dear God, It's Me' to Willie while we waited. He liked it. Didn't buy it, had ratty edges. Got our 'script filled, got a syringe which wasn't in the bag when we got home, went out to the car to again avoid the vomit on the pavement while I put Jack back in the van, drove home through wakening Saturday morning streets while listening to Willie coo, and pulled into our driveway at 6:44am. And guess what the doc said? Sinus infection persists, for one, severely inflamed right ear for another, mildly inflamed left ear. And guess what he gave us? Yep, you guessed it! Augmentin. Said it would have been his first choice for The Willister. Damn that Dr Asshat. If I had the energy I would begin every one of my blog posts by writing his real name and then issuing culturally sensitive insults of the most damning kind, suitably proffered in the language of his national origin. But I don't have the energy and he's really not worth it. So he will remain Dr Asshat.

Jack's playing happily on the floor now that his fever is down, telling his telephone very loudly, "but, but, but, but!" alternating with "wub, wub, wub, wub!" I'm having coffee with sugar, a scoop of chocolate and obscene amounts of coffee creamer, some Excedrin maigraine for the caffeine content, and a toasted "Everything" bagel, piled high with fluffy comforting clouds of whipped cream cheese! The entire household remains asleep. Jack feels better. Life is good.

3 Days, 3 Doctors, 300+ Miles

Yes, you read correctly. We've been to three different doctors in the last three days. I am glad to see the end of this week peeking around the corner. Here's the quick run-down:

Tuesday, opthomology: still near sighted, vision is stable, no glasses as yet because Jack's whole little world of interest is right in front of his face at this age. Come back in four months.

Wednesday, urology: Good news there. I am very happy to have at long last actually seen my son's penis. Sound weird? Of course it does! But he's almost 17 months old, and until now, his foreskin has had zero inclination to recede. Wednesday must have been the day, because a very funny MD slid it right down and off. This has only been an issue because Jack pees up! The newborn documentation also claims he has an epispadus. Until now, we've had no suggestion otherwise, because we could not see where the opening actually was. He doesn't! His little pee-pee has the opening right where it should be! Yes, I know it's a penis and a urethra...but on my baby, it's a pee-pee! Good news there. No surgery needed to correct the opening! Although, I was kinda hoping for a "medically necessary circumcision." We have some steroid cream to complete the process; come back in a month.

And today, we saw our final doctor for the week. Jack has a new primary. The final straw for Dr Asshat came this week. After the long months of waiting and getting denied at every turn, Regional Center has funded our LVN and she started Monday and we love her! After signing the plan of care and all the orders we've sent to Dr Asshat, he refused to sign the start of care for our LVN. He said it would be fraud. He said he had patients to see. He hung up on me. Bastard!

I like the new doctor. He listened to me and gave his best medical opinion. Nor Jack's LVN or I agree with his assessment that Jack's mental retardation is "moderate to severe" but Jack was sleepy with a full belly and was no where near being up to his usual antics. He's been just a little off his usual self, which I kinda suspect may be a return to of the sinus infection, now that the ten days of Amoxicillan are up, but he's had no fever and just some mild crankiness which could be getting-another-molar related. The doctor only saw us for 15 minutes tops, during which there was much animated discussion while I rocked a sleepy Jack in my arms, so I'll forgive him this one transgression. We disagreed on the nutrition of soy milk versus formula versus Pediasure, but he said he'd research further and that I might be correct. In the meantime, we're to try Jack on Pediasure and see if he tolerates it. As far as I know, it only comes in a milk based version, so we'll start that this weekend and see how it goes with Jack's tummy. Moms ~ please comment with your high calorie, non lactose, nutrition packed alternatives! This doctor sees lots of developmentally disabled children, but Jack's his only little one without a Mickey button. He said he would research lactose free alternatives too, to try the Pediasure in the interum.

And here's the rub. Jack has lost another 2 ounces. he's down to 20 pounds, 2 oounces. No more soy milk for him. The doctor whole heartedly agreed that Jack now needs skilled nursing for the hours when I or The Daddy are not with him. We've been approved for 11 hours a day, 5 days a week. We have a share of cost, but it's still cheaper than the babysitter who doesn't really know when trouble is brewing. Even if it cost twice as much as the sitter...the peaceful feeling I have driving away, knowing he is in good, loving and skilled hands is worth it! The doctor said to have the orders faxed to him, he'd be more than willing to sign them!

And there's the 300+ miles. Two of these days I drove 45 miles to pick up Jack and his nurse, only to drive back 57 miles to the doctor, then 57 miles back to take them home, then 45 miles back to work. Today I had only had to do the 45 mile trips...4 times!

Nebulizer Fun!

He makes it look fun!