More excerpts from my mommy heart...

My sweet babies (who really aren't "babies" anymore),

This is, so often, how I find the two of you in the quietest moments of our day. Whether it's the early morning hours when Lollie is still in bed (often taking in the rest of her night's sleep after being up for hours) and Bubba crawls up next to her, or in the late afternoon following Bubba's nap, you always like to be close to each other and cuddle.

This picture was taken after Preston awoke from his nap two Fridays ago... following the "all about him" day with Mommy and Daddy. You guys missed each other so much and Daddy and I delighted in how excited you were to see one another. Preston's first word upon awaking was (his version of) Gracie's name and Gracie had been signing "Preston" (the only name she regularly signs) since discovering him napping up on the couch. When she saw he was awake, she signed "up" as in, "I want up with him NOW!"

As your Mommy, I am amazed by your connection - - not surprised - - just truly amazed. Your "secret language" has continued to develop and I still have not been given the rights to the "decoder ring." And, even though I wish I knew exactly what you were "saying" to each other, it's perhaps even more magical to not know for sure. You laugh when the other laughs, you will sometimes cry if the other is crying really hard, you love to copy each other - - whether in gestures or now, much to my delight, signs. And, like siblings do, you have your moments when you are not so thrilled with each other.

Preston, you still use your sissy as a step, a trampoline and target practice - - but it's not so much in malice toward her, rather testing Daddy and me. This makes it challenging to leave you two out of arm's reach for more than a second for fear of what "brotherly love" you might exert upon your sister. You are the master at apologizing and if she's not sitting up, you kneel down way low, lean in to her left side (her sighted eye) and sign a giant "sorry" and "hurt" while saying it, too. Usually, though, when we do turn our backs for a second, we see what's captured in the photo above - - and not the naughtiness.

Preston, I love that every chance you get, you are giving Gracie a play-by-play of what you see, especially when we're driving. "Dee Dee, yuk... airpane!" (Gracie, look... airplane!) "Dee Dee, yuk... big tuck (truck)!" I am amazed by your vocabulary, your ability to put together four and five word sentences with adjectives, no less. You tell all of us (anyone who will listen!) the size and color of the things you see. Just the other day, and we STILL don't know where you learned this - - unless you remember from last summer - - "Yuk Momma, yady bug... watch yady bug! Red yady bug!" And then, when we saw another one that was dying (I think that she got stepped on by accident...), I told you that she was hurt and you said, "Orwry (sorry) yady bug, seepy (sleepy) yady bug." As much as you love telling any of us who can hear you, you love trying to tell your sister even more. You practically yell, hoping (I think) that she'll hear you and you naturally remember to sign for her, too.
"Yuk, Dee Dee, pot!" You pointed up and signed "stop" at the stop sign while being pulled in the wagon, again, blowing my mind at what you know and articulate, and warming my heart to no end that you want your sister to see and know, too.

And sweet Gracie - - you aren't all that innocent when it comes to naughtiness... it's just more gentle-natured! You constantly want to interrupt your brother's sleep! Any chance you get to steam roll over him when he's resting, you take it! It's funny, really, because it's as though you know that you can get even for the "brutality" that you take from him! He's asleep, and therefore, you have the upper hand! For you, though, steamrolling is just a way to get extra close and "examine" him. You stare at him, touch his hair, play with his hands and his feet. Watching you watch your brother sleep (and watching him actually sleep through it all) is one of my most favorite things to do. You are completely mesmerized by your sleeping brother and, I imagine (just as I am sometimes), you are a bit relieved some days when he does finally give in to a nap!

As your mommy, it is my greatest wish that you continue to love each other this much and more... that your secret language continues to develop... that you find joy in one another... that you are kind to each other...
I am your mommy... but in your sibling world, I am just the quiet observer - - awestruck, proud, sometimes exasperated :) and most of all, completely in love with the love you two share.

Happy Easter

Happy Easter!

And an Easter memory from last year...

what a difference a year has made for Miss Gracie!

Foto Friday vol. 11

Tumbling Boy
Last Friday was all about Preston. John had the day off and since Gracie's nurse worked that day, we spent about five hours alone with our boy, doting on him and giving him some well-deserved, undivided attention. Not a doctor, therapist or suction machine in sight.

I signed him up for a "TOTnastics" class at our local gymnastics club and Friday was his first day. He had a ball and really wasn't still enough to get many pics! They start with circle time, sing a couple of songs, do a "dance" activity and then complete an obstacle course. After that, the remainder of the hour is free-play... trampoline, bars, climbing castle, rings... you name it, he tried it all! He was the youngest in the class by about 6 months and did a fantastic job following directions!
So hard to say what his favorite part was... but suffice it to say that on the "spring" floor, he can give Tigger a serious run for his money when it comes to bouncing! He jumped across that floor like a maniac!

After class, we drove to Huntington Beach, had lunch, went to the farmer's market and played and played! By the time we got home, he was completely sacked out!

Unfortunately, Saturday his runny nose reared it's ugly head again and now he has a nasty cough. After a trip to the doctor Wednesday, he is now on his first round of antibiotics (at 23 months) and may not be able to attend again until next week. :-( The "ick" he caught last month just won't go away.

Friendship Bread
Our super sweet neighbor brought the starter for friendship bread over and I immediately knew that this would be a great "project" for the kids to help with... and also a little OT, too! Turns out that Preston needs a little work in the sensory area! He shuddered every time it was his turn to mush the bag!

Gracie, on the other hand, LOVED every bit of the mushing! She got so excited each time she'd sit and wait for me to hand her the bag! Tactiley defensive...? Formerly!

Day 10: Complete the recipe and create four new starters. I chose to make muffins instead of loaves of bread... they turned out scrumptious - - so scrumptious that I made John take most of them to work the next morning! Preston spent the next two days asking for "mo muttin" (more muffin). Next time, I'll save a couple extra for him and will make some muffin tops, too! (It's really not a "bread," more like a sinful dessert, especially served warm!)

Bubbles Galore

Bubbles are a BIG deal in this house and they bring a tremendous amount of joy to all of us!

Gracie won't sit up for long... and Preston won't sit down for long!

Things you can do with bubbles: Chase them, try to eat them, clap them, laugh at them, jump for them, watch them intently, try to steal them from your sister, laugh at your brother trying to steal them from you...

Foto Friday Sunday vol. 10

A bit of this and a bit of that...

Last Saturday's Impromptu Outing started with an early afternoon drive down Pacific Coast Highway. Despite being sunny and warm, it was too windy for Miss Gracie's eyes and trach, so we didn't stop at any of the beaches (much to Preston's dismay). We just meandered and eventually ended up at South Coast Plaza (a very cool, but budget unfriendly shopping mall). We walked around a bit, did some dreamy window shopping and then the rest of the afternoon and evening unfolded as follows...


The boys were first on the carousel (which instead of horses, now has bunnies to ride for Easter)

Next it was the girls' turn


Both kids (and their parents!) loved it! We were so bummed that we only had cell phones with us - - none of the action shots turned out!

Next we headed to dinner, where both kids (John and Preston) were fairly well-behaved!
Gracie, however, was Miss Fast Fingers and reached for everything on the table... including my Margarita! It's the first one I've had in ages and I had to share the salt and lime with my not yet 6 year-old daughter! She really liked it... too funny!

Next we were off to Brookstone to listen to the iPod towers they have blasting as you walk by. Preston insisted on dancing around... so we did. Nothing like dancing in public with a 22 month-old to make you feel young and alive! Miss Gracie was parked right next to the tower with her hand and foot firmly planted on the speaker. She was groovin' to the beat and lovin' it!

Then... the big event... a visit with the Easter Bunny! This was a first for both kids (this would have been terrifying for Gracie just last year) and they had so much fun! We took a family photo that was such a summary of the happiness and fun of the day, that we just had to buy it!

(Clearly this was unplanned, for with the exception of Gracie's outfit, our attire was less than "springy!")

This one of the kids is my favorite... it melts my heart for so many reasons... pride for Gracie and all she's tolerating in a busy day, new experiences, Preston's expression, his little hands on his lap... all so sweet :-).
We topped off the evening with ice cream, which is always a good way to end any day!

Gracie's IEP went very well. It was, without a doubt, the most efficiently run, well-organized IEP she's had to date. I'm excited about her team... they all have experience with DeafBlind students and they've worked together successfully for years. We officially established her placement in the "Multiply Disabled Deaf and Hard of Hearing/Total Communication Class," which allowed the district to post the job for Gracie's Health Aid. We will have another IEP 30 days after she starts school to establish goals for the next year, re-evaluate services, etc. In the meantime, Gracie will attend three days a week for three hours. (Unfortunately, she can't start until her health aid is hired and the medical orders paperwork is completed by both GI and Pulmonology. This is proving to be my next challenge as their sense of urgency is not the same as mine. Since Spring Break is next week, we are shooting for a start date the week of the 20th... FIVE months from her last day of school up north. Ugh.)

Anyway, if she adjusts well and her stamina is good, we will add in the other days and then extend her day by one more hour (the full Kindergarten day is four hours). During her time at school, she will receive:
- Group OT (30 minutes per week, plus consultation)
- Group Speech/Aural Rehabilitation (30 minutes per week, plus consultation)
- Individual Speech/Aural Rehabilitation (30 minutes per week, plus consultation)
- Audiological Services (15 minutes twice per month for testing and amplification monitoring)
- Vision Services (will have a functional vision assessment to determine service and consult recommendation; for first 30 days, the service will be twice per month for 30 minutes)
- Individual PT (30 minutes per month consultation)

- Assistive Technology Services (will be re-visited at 30-day meeting; previously Gracie had an adaptive keyboard - with larger, easier to see keys and a switch to work with at the computer, as well as software to use for various lessons/teaching strategies.)
- Adaptive Physical Education (will participate weekly with the class and the APE instructor will then provide recommendation for assessment and services at the 30-day meeting)

The entire school team will also consult with the OT and PT at the Medical Therapy Unit. Her schedule at that clinic (for now) is OT and PT for 30 minutes back-to-back once a week and combined OT/PT for 30 minutes once a week. The later will be increased to a back-to-back hour eventually.

Speaking of therapy clinic, Gracie was, as previously mentioned, a total ROCKSTAR at her first clinic therapy session last Monday! The moment we entered the PT room (a room she's not yet been in), she signed "up" and "play" and pointed to where she wanted to go! I was so excited that she was excited! She did great, tolerating the activities and following signed instructions with modeling. She was, however, her typical "sneaky" and "cheating" self (said with a smile and heart full of love... not meant as insults!) and tried at every chance to get horizontal! Give her a moment of down time sitting up and she's trying to get down. That's nothing new... and neither is working on it! She cried when I signed that it was time to go! She used to cry when we arrived at places and wanted to go!!! YAY!

We go back this Monday and Thursday.

More Foto Friday...

Faces


This sums up Gracie's Tuesday and most of her nights as of late. Even though she is so upset, there actually are things I love about this picture... her hair that rivals Einstein's :-), she's signing "up" furiously (thus the blurry hand), she had just signed "sit, up" and pointed at that very bench - - this expression of anger was what I got in return for obliging her request!



Spring Training

And last, but certainly not least, our new nephew/cousin...

In the wee hours of the morning...

My brother and his wife welcomed their baby boy,

Jackson Riley

at 1:15am. Both my sister-in-law and baby Jack are healthy and well. Jack weighed in at 7lbs, 3oz and is 20 3/4 inches.
We are so very happy for them and cannot wait to meet our new nephew/cousin!!! Pictures to follow!!

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Also in the wee hours, Miss Gracie has had her fourth night in a row without tolerating feeding or Pedialyte... we have spent today trying to get enough fluid in her to avoid the hospital, as she is verging on dehydration due to a lack of sufficient fluid intake over the last several days.
Up until today, her days have been fabulous (with the exception of feedings) and her nights have been awful. She cannot sleep unless her pump is off and wakes-up with it running at an incredibly slow drip of 10 ml/hour (which is not sufficient to hydrate her and illustrates just how sensitive her little tummy is).

Good news... More to follow on her first day at the therapy clinic on Monday (she was a total ROCKSTAR), our impromptu (and fabulously fun) outing Saturday and her (very successful) IEP on Friday...

A visit from good friends

Foto Friday vol. 9

Splish, splash they were takin' a bath!

This is the first time that the kids have taken a "real" bath together. Usually, Gracie uses a bath chair to keep her safe. She can sit up, but chooses to scoot down flat (not safe... duh) and because of her trach, a recline is necessary when rinsing her hair. Sometimes (not often due to the chaos that ensues!), Preston will sit in the tiny space not occupied by the chair and "hang out" while his sister gets a bath.
The other night John was home and took on bath time while I did dishes. Next thing I knew, I was being summonsed to the bathroom. "Mama, come here... bring your camera!" With the exception of the "too naked for the blog pics," this is what I took. Once I got Preston out, John got creative with the letters while Miss Gracie took an inch-deep "soak!" And speaking of letters and bath toys... No... they don't typically bathe with every toy and letter we own!

Playtime

Not her ears...

Unfortunately (because this is an easier solution), the culprit behind Gracie's behavior is not her ears. It's also, thankfully, not the newest changes to her pacemaker. She has, for the million and umpteenth time, active gastritis that finally showed itself (in the form of old blood in her G-tube) on Monday night.

We went to the GI clinic yesterday and saw a nurse practitioner - - she was nice in the end - - but a bit adversarial with me at first. This could be due to my own attitude toward her when she finally walked in the exam room nearly an hour and thirty minutes after our scheduled appointment time. Anyway, she wasn't too receptive when I told her we were trying to establish care with someone other than our current doctor. I think she just thought I was a moody mom, but once I thoroughly answered her questions, she began to take Gracie's situation a bit more seriously than just "needing calories" and gave me a bit more credit as a part of her "medical" team. (I'd like to think I have an honorary nursing degree in the specialties of GI, pulmonology and cardiology... perhaps I really should go back to school!)

Overall, though, we got nowhere and she feels that it's quite possible we've exhausted every avenue regarding a solution. That's not encouraging... but I will remain (fairly) hopeful that, at some point, we can alleviate this nightmare for my sweet girl. I cannot and will not give up the hope that there is relief in her future.

Tomorrow is her IEP... it will be just for placement purposes only. Since she's been out of school so long now and without any services, we don't really have an basis for making new goals (or adjusting old ones). In thirty days we will have a review and create new goals. Then, at some point in the very early fall, we will do her triennial review that's actually due in two weeks. I readily agreed to the delays. None of her team knows her at all and she's basically lost the year with the exception of Mommy OT, PT and school (which is good... but also includes a crazy little boy who wants to interfere and learn, too!). So, tomorrow we will work out the logistics - - what days she'll attend (she's only gone two hours, two days a week at the most due to health and stamina), what hours, what services she'll have and discuss the assignment of her health aid.
Once we get past this point, I have to wrap my brain around the fact that I will be leaving her with virtual strangers for the first time in her life. For the moment, though, I am focusing on tomorrow. I can only take on so much at once!

Five minutes of fame

Click here to link to the California Early Start Home Page.


On the right: John and Gracie in December of 2003. (On the left: I don't know!)



Over five years ago, our family was asked to take some pictures by our local Early Intervention office for some publication materials. I am still not sure to this day how our local office got to choose a family (out of all the offices in the state) or why they chose us out of everyone they knew and served.

When the photoshoot date was scheduled, I was out of town on business and so it was a "Daddy and Me" day for Miss Gracie! We knew then that their images would appear in a few Early Start/ Early Intervention publications. Later, we learned that they not only appeared on that poster (which hangs in offices, therapy clinics, and educational sites all across the state!), their picture was on calendars and brochures for the state as well as individual counties throughout the state! They were famous for a bit!

Turns out that the poster is still around... and the picture was "revived" for several different brochures. In the last few months, three people have mentioned seeing John and Gracie's picture! So... in case you missed their initial five minutes of fame... here is the "main" picture used five years ago... and again, today! Who said you only get your "five minutes" once?!

Words I love... and some days, words I need

Shortly after Gracie was born, a friend shared these words by Erma Bombeck. I printed them, along with a few other quotes and poems, and had a handful of copies strategically placed throughout my spaces, so that when I needed to regroup with more than just a picture of Gracie (or a picture of John and Gracie), I could. I had one in my desk drawer at work, one on a bulletin board in my home office and after she got her trach, I had one folded in an envelope at the bottom of her suction bag along with her emergency pacemaker info.

These words speak to me, not because I think I am exceptional for being a mother to a special needs child, but because they give me the strength to dig a little deeper and find the traits I know I possess and need to use in order to mother my daughter. It's not easy sometimes, okay - - a lot of times, but motherhood, to any child, isn't supposed to be easy. I don't read this too often anymore, and since we've moved, it's not up in the house anywhere. But, after a very rough couple of "obsessive compulsive" days with my girl, I pulled it out and read it today.

I will be calling Monday morning to have her ears checked, as I am quite certain that something is going on and, other than to be exceptionally rigid in routine and obsessive beyond distraction or redirection (and to the point of being a little self-injurious), she rarely gives any indication when it's her ears.

The Special Mother

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

'Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecelia. Rudledge, Carrie, twins, patron saint...give her Gerard. He's used to profanity.'

Finally he passes a name to an angel and smiles, 'Give her a handicapped child.'

The angel is curious, 'Why this one, God? She's so happy.'

'Exactly,' says God. 'Could I give a handicapped child a mother who does not know laughter? That would be cruel.'

'But has she patience?' asks the angel.

'I don't want her to have too much patience, or she will drown in a sea of self pity and despair. Once the shock and resentment wear off, she'll handle it. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world, and that's not going to be easy.'

'But, Lord, I don't think that she even believes in you.'

God smiles, 'No matter. I can fix that. This one is perfect. She has just enough selfishness.'

The angel gasps, 'Selfishness? Is that a virtue?'

God nods, 'If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says "Momma" for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.'

'I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side.'

'And what about her patron saint?' asks the angel, pen poised in midair.

God smiles, 'A mirror will suffice.'