Some thoughts from my sister...

Some of you know my younger sister, Kristine, and some of you have never met her. She's married and lives in California with her husband Matt. I don't get to see or talk to her nearly enough but we try and stay in contact the best we can. Last night she sent me some thoughts and experiences about her weekend... and they're just too good not share... in fact, I picked up my Bible first thing this morning... thanks for the reminder sista!! 

Just a note... this was a quick email sent to me last night at midnight with some thoughts from her heart. She graciously agreed to let me share because I think it'll be a blessing and reminder to somebody else like it was to me:

"Got to spend the weekend in Truckee and visit our old home church... was so blessed by Pastor Wayne's message. He spoke on humbleness... and how Jesus becoming a man, could not have chosen a lowlier rank. You see, because had he come as a tree, or flower or worm... those creations exist the way God created them to exist. They bring HIM glory because they do exactly what they were created to do. We, mankind are the ONLY creation that rebels against God. So Jesus could not have gotten further from his highest position of being GOD. Pretty cool. He literally became man... human, and there is nothing that he did not encounter... there is nothing he does not know or didn't feel. Talk about humble. The pastor then showed a picture of Jesus washing the feet of his disciples and said, "if you are not willing to wash the feet of anyone in this church, you are not in the right place." Such a good reminder, especially in ministry that we are to be of one mind... considering others better than ourselves. We are to take that mindset so that one day God will be able to exalt us High like he is...

one more thought... from my awesome friend Rebekah.

She was comparing us and how we are so like the Israelites. Many comparisons but this one in particular had to do with the Mana God gave them. Each morning he would send mana from heaven and if they did not gather it then, the sun would spoil it and it would be gone... the mana is God's word.. each morning, if we do not put God very first and desire him more than we desire food, sleep, whatever, then the busyness of the day will soon be upon us and the time will be gone. He also only provided the Israelites with one day's worth. He gave them what they needed for that day. It's the same with his Word. There is no, "I'll read God's word on Saturday and catch up from the week..." No, He gives us the Word each day and if we miss the opportunity, it's gone... we've missed that day the blessings God had for us...

I heard a sermon by Francis Chan who was just so passionately begging his church to stop everything... don't do anything tomorrow if you don't spend time with God.. he's THAT important... don't eat, don't sleep, don't go to work if it interferes with your Holy and Almighty Savior. So challenging... I had to ask myself, "do I love him that much?" that I would be willing to not do anything if it meant that I couldn't spend time with him."

Crazy huh? We live and tell others that we are Christ followers yet we forget the necessity of spending time asking God what He has planned for us today?? And asking Him to fill us with more of Him and less of our sinful nature. Blows my mind - how can this be? I'm a mom, would I dare leave the house without a diaper? Would a teacher dare leave her house without her lesson plans? Would a fire fighter dare leave his garage without his gear? Why would we even think about leaving our houses or starting our morning without God's blessing on our day!! Let's pick up our Bibles!! 

By the way, I don't claim to have it all together as a "Christian" and I KNOW I fail in many areas. But I know God has put this special boy in my life for a reason, and that I want to be the best mom and wife I can be... and it's dang hard... and I need all the help I can get. So I'm going to try and start asking God every morning for help by getting some wisdom from His word. Because He promises He will!

Bah Humbug!!!

"She's a mean one, Mr. Grinch!!"  Yes... me. Grinchy and bah humbugging here. What the heck??  I hope nobody else is feeling this way... but if you are, you are not alone! I am majorly overwhelmed this year. Maybe because Christmas and Thanksgiving are so close together? The fall decor is still not completely put away and there are Christmas boxes everywhere! And don't even get me started on Elf on the Shelf!! Yeah right... Santa's MAYBE getting store bought cookies this year. Better yet, there's Otis Spunkmeyer cookie dough in the bottom freezer... Knock yourself out Santa!! 

 HAHAHA, just kidding... sort of! But seriously, this year I would much rather spend a much needed family day together playing and watching movies then 5 hours in the yard trying to put up lights only to spend the next Saturday taking them all down again. That doesn't even sound fun and we just don't have that kind of time right now. So this year... Simplicity. I'm going to take away all "expectations". If I don't feel like doing it, if my hearts not in it... if it's more stressful then it is fun... it's getting cut. We have our tree up... still not decorated, and I'm thinking one manger scene and I'm calling it good! And then if it feels like fun or might be a good family activity... we'll put something else up.  (This is from the girl who usually changes out all her normal dishes to Christmas dishes!) All those Christmas boxes are going back in the garage. Check, check and check! And now... I can actually function and breathe and spend more time with those I love and heck, maybe even focus on the real meaning of Christmas! (Don't worry, I'll have my over the top Christmas spirit together next year I'm sure!!! Ben can NOT believe I'm boycotting Christmas decorating!)

This REALLY IS going to be a great Christmas! Benjamin is changing so much! He's noticing and into everything and I don't want to miss these new adventures because my "to do" list is soooo ginormously huge and I'm so stressed out and grumpy. I went in this morning to wake him up for school and came back to this: (video below -  it might not show up on some devices - go get on a different computer, this will put a smile on your face!) 

What?? My kid likes to color?? News to me!! :)

By the way, I'm totally doing Elf on the Shelf one of these years with Benjamin when he's into it! 

By the way again, I mostly just wanted to share this awesome video and it turned into more of a diary entry. Thanks for letting me vent. I feel much better already! 

Much Love, 
Grumpy, stressed out mom who is having an attitude and life adjustment TODAY!! :)

November update...

How is November over? I've been trying to manage my time better and figure out where it all goes... I just counted that Benjamin has had approx. 129 appointments since January (and by approx. I mean there's probably more) and this doesn't include anything related to school. And he has at least 10 more in December!! We are busy and I'm not kidding! :0) Benjamin is changing and learning so much right now. I'm so thankful for all the therapists and specialists we have helping us! Here's a little of what we've been up to:

Here's our Woody for Halloween (couldn't get him to look at us!):
I had to work that night and the boys hung out at home to give out candy so a quick trip to Costco had to suffice for a little Halloween dress up!

Isn't this just adorable? Turned out pretty good for his first school picture:

Now for some updates on Benjamin.

For the past few years, all of Benjamin's specialty doctors keep telling us that we need to revisit genetics. So, the first big test we did  this last month was some genetic testing. (btw, we go up to Doernbecher and all his tests so far have been either blood tests or urine tests) Chromosomal Microarray Analysis was the name of the test they just did. When Benjamin was first born they did a test similar to this. Basically, if Benjamin's genes were a big set of Encyclopedias (remember those!!) the first test checked to make sure Benjamin had a complete set of books A-Z and he did. Now this last genetic test was a deeper look checking to see if Benjamin has all the pages in each of the Encyclopedias. And the test came back NORMAL and he does. There is one more test that would check to see if each page has all the words in the Encyclopedias but the geneticist doesn't think that would be helpful. (Thank goodness because these tests run around $2500 a pop! I'm checking my EOB's everyday hoping insurance will cover most of it! Those stinkers wouldn't give us a definite answer on exactly what they would cover.) We're glad the test came back normal but we are at the end of the road as far as genetic testing goes. They told us to come revisit in 3 years to see if any other tests or new info has come to light. It would be nice to have some more answers about Benjamin or maybe a syndrome that would help give us some direction. For example, if Benjamin was diagnosed with X syndrome, and studies show that 95% of children with X syndrome never develop their speech, that would help us focus on signs and pictures and his communication device. Not that we would ever write anything off, but knowledge is power and the more we understand about Benjamin the better we can help him be the best he can be. But for now, Benjamin seems to be a mystery to almost everybody and so the sky is the limit!!

Next, allergy testing. So Ben and I both have pretty bad allergies. Ben is allergic to grass and I'm allergic to dust. So Benjamin's results - grass, trees, dust and dust mites. hahahah... But no allergies to dogs!! :) In a way I'm so relieved because Benjamin would get sick every time we go to Camp Attitude. Of course, we're practically living in trees and grass! Next time we go I'll be able to manage it better for him. Benjamin is not eligible for allergy shots because of his heart so we will be managing his allergies with some good ol' Zyrtec.

Thanksgiving came and went way to quickly this year. It was absolutely crazy with everyone's work and school schedules, plane flights and of course that blasted Black Friday!! So we officially had Thanksgiving with the Silvermans on Wednesday. Sarah and Raul (Ben's sister) flew in from Texas and we all just have a blast when they're in town! It was busy and short, but the time we did get to spend together was wonderful and we're grateful for that! I had to work on Thanksgiving for a few hours, but when I got off we headed to the Pences (their first Thanksgiving living in OR) and all the cousins were there! Sooo fun!
Below is Max and Benjamin. (You, know, the cool, older cousin, Max.) Benjamin crawled over and sat very close to Max to watch him play on his iPad:

Below is my buddy with his hat and glasses on! Making huge progress here!! Thanks for all the prayers and continuing to be our village!

October update...

I have to say, I was SO excited for Benjamin to start kindergarten! I would have 3 hours a day to get all my stuff done! I could start a consistent workout routine and lose some weight - well, I've gained ten pounds. All my cleaning chores for the day would get done first thing in the morning leaving the weekends free for family time - I'm actually looking at the pile up of chores around me and blogging instead because there is so much to do!! (plus if I procrastinate a little longer... the DUCK game will be on!) Turns out... kindergarten is kicking my butt!! Benjamin has to be up for school every morning by 6:15!! A little too early for this mama!! Hence... the gap in blogs, but I hope to be better because I want to journal/blog everything so I don't forget one thing!!

There have been some major news and changes going on around here!! First off, we have our official class dates to go get Benjamin's service dog!!  SEPTEMBER 15 - 26TH of 2014 is our actual class date and we'll be in Xenia, OH!!!! This is so exciting!! I don't want to wish a whole year by... but boy are we excited! 

That brings us to preparations for the SD (service dog):

- We are trying to get our 30 hours of video recorded so we can send that off to 4 Paws.
- The yard was terrible when we bought this house. Wouldn't even call it a yard... mostly spots of grass here and there in the back and the ground was really uneven and unsafe in the front. 
So this happened!!

backyard before

backyard after

backyard after

front yard before

front yard after

Still have some major yard work to do and a gate to put up so our front and back yard will be fenced in completely but that will probably all happen next spring. (btw... the dog doesn't get to go potty on the grass! We have a long side of the house where we will train it to go. We want Benjamin to be able to roll and crawl around in his yard!)

Now onto other events! 

Benjamin's 2nd day of kindergarten. First day he thew up everywhere 10 minutes before the bus came!!

Benjamin at school with Teacher Mary

Benjamin's new AFO's!! Definitely helping! He's almost standing by himself without holding onto anything!

Waiting for the school bus with his new basket on his walker - that's to hold the iPad if anybody was wondering!

Apparently my kid wears hats now! This hat's his daddy's!

 

Waiting for the dentist. He grinds his teeth all the time. His back molars were down to his gums (OUCH!) and he was starting to grind down his front teeth too. So caps on everything! (Dr. Mo said this is a very common problem with kiddos on medication) Poor boy! The dental procedure went great, however, the coming out of anesthesia was terrible! He had a really weird reaction to it and went crazy psycho on us! It was everything Ben could do to hold him down. He tore out his IV...  Needless to say, we were at the hospital for quite a bit longer than planned!

I think we might have found what we should be for Halloween! WOODY!

 

 

Benjamin is really changing!! He is learning so many new skills at school! We are still doing quite a bit of private therapy as well. Benjamin gets out of school at 10:40 (he rides the bus there and I pick him up). I get him home for quick nap (which he needs because he is exhausted!) and then we pretty much have a a therapy appointment or drs./specialist appointment every afternoon. And then we come home, Ben gets home, and I head to work. It's craziness... but it's worth it!

Finally... an update!!

Man, oh man... the Silverman Family got sick... I mean really sick, and it has taken us about this long to finally get it back together! So let's do a little blog catch up!!

First of all... ALL THE MONEY HAS BEEN RAISED FOR BENJAMIN'S SERVICE DOG!!!!!!!!!  We are waiting for a pretty large Employer Match to be sent to 4 Paws for Ability and that's suppose to happen at the beginning of September. Then we will get the "official" phone call from 4 Paws saying we have met our goal and giving us more info!!! I swear... 2 1/2 months of fundraising has to be some kind of world record! I thought it might take 2 1/2 years!! We are so loved... and we feel so grateful to everybody who has helped us on this journey. This was a big item on our bucket list with Benjamin and it's actually happening! So we're probably looking at getting Benjamin's dog sometime in September of 2014 but I'll let everyone know as soon as we get the details. For now... we have to get a yard in!! Because... well, as you can see:

Except there is no grass, just all mud in the front and back. And Ben was going to put it in the spring, but his wife had him running around doing doggie fundraisers! So come fall, it's going to be seedin' time!

Camp Attitude: The third week of July we headed out to our much anticipated week at Camp Attitude. Benjamin was a little sick but that's very par for the course before we go on vacation. We were able to spend 2 1/2 days there before Ben and Benjamin were really sick and we had to come home. Such a BUMMER!! It's my favorite week of the year but it wasn't meant to be this year... Camp Attitude has to have it's own blog. There's way too much share and some great pics! The days we did get to be there we had a blast and Benjamin had a great buddy named Lizz! (pic below)

Newest Family Member: We have another small addition to our family... A much needed sucker fish named Sluggar. I think sucker fish are totally weird so I told Ben if we have to have one, can it at least look pretty?? Ben sent me multiple pictures of these beautiful sucker fish that were options... and then he came home with this guy: (Pic below)

I about died... REALLY? This ugly thing? He is now my absolute favorite!! He is so fun and has a ton of personality!! Beauty truly is in the eye of the beholder! We love our Sluggar!!

Glasses progress - I am happy to report we are making SOME progress... and I'll take SOME over NONE!! Benjamin is actually having a good time when we "play" with them. But we haven't gotten over the 20 minute benchmark yet! There's lots of counting and games and clapping happening about glasses over here! It's really quite comical how much we do to try and get this kid to wear his... especially gobah and gammy-my dad and mom!! (I hope somebody in the government is getting a good laugh peering in on us! ;)
 (video below)

AFO's (ankle/foot orthotics) - Benjamin was fitted for a pair of these a few weeks ago. They think this might do the trick to help him be able to stand with out any support (well, except for his AFO's) They should be done here shortly and I'm hoping we can get use to them before kindergarten starts on the 9th.

First Theatre Movie: We took Benjamin to see Despicable Me 2 in the theaters. He did pretty good for the first time! (Really, really good with the minions were on!  (pic below)

Canby Fair - This past week my sis in-law Hannah came up and stayed with us for a night. We went to the Canby fair and had a blast!! Hannah got Ben up on stage in two different shows! HAHAHA!! He had to hold a stalk of celery in his hand while Crazy Alex cut it in half by throwing a playing card and then had to do an awkward chest bump! BAHAHA If you know Ben at all... you know chest bumping another sweaty guy is NOT at the top of his list!!! (video below)

And here's my little cutie boy: (p.s. the cow is not real!)

The summer has seriously flown by and I feel like we were sick for half of it. There's still a few months left of good weather so time to make the most of it!

Remembering... redemption wins!!!

Benjamin had his first set of major grand-mal seizures back on Christmas of 2010. The early morning of Christmas Day exactly. And I'll never forget the doctor sitting out in the waiting room telling us that they're trying everything they've got to get those seizures to stop but more then anything else, they were pretty worried about heart failure (remember Benjamin already has severe heart disease)... ugh... horrible times.  (and this is like 4 hours after an ambulance trip to a very tiny hospital who wasn't set up for Benjamin... and a PANDA transport-highly specialized care and transport of critically ill neonatal and pediatric patients from hospitals - to Doernbecher PICU. This was such a dark and scary time for us. But the prayers went up from all over... and my little Benjamin pulled through!

I was looking through my old emails and came across this entry on February 15, 2011, only a month and a half after his seizure episodes and some of you have already read it, but it's just too good not to share. I want to always remember how God is using my little boy's life in BIG ways:

We know all things happen for a reason... but sometimes, like with my little boy, I wonder what in the heck could that reason be? Especially this last episode over Christmas with the seizures, just awful...I try not to, but can't help but wonder...why would that experience for Benjamin be necessary?

It's going on several months now and Benjamin is pretty back to normal, with a few new scars from IV's and pokes and a darn-awful gag reflux that the feeding therapist says is from having a breathing tube stuck down his throat one too many times. But we are thankful that things are pretty back to normal...well, our "normal" anyways. :)

So my mom told me she had a story to tell me the other day that involved work... For those of you that don't know, she works at a bank. A regular customer came in and wanted to withdraw several hundred dollars. My mom said she would need to see I.D. for such a large withdraw. He didn't have it on him and went on to explain that his 3 yr. old son was in the hospital with seizures. Of course, Gammy's (my mom) heart dropped. She told him how sorry she was and that her grandson had just been through the same thing. He asked how old Benjamin was...almost three... (both his son and Benjamin are both about 3). My mom told the man since he was a regular customer they would go ahead and let him withdraw but on a regular basis they would need I.D. The man was very grateful and headed on his way.

Four hours later, the man returns, this time with his wife. They walk up to my mom's window and the wife says they need to change their account so the husband can't take money out. What???? My mom of course asks how their son is doing.  The man replies, "my son is fine...I'm going into rehab."  The man stepped away from the counter for a minute and the wife looked at my mom and said, "he is just sick that he lied to you...about his son, and that your grandson is actually going through this. He's going to get help".
 
The man had come in and much to his wife's devastation, taken out their tax return to feed whatever his addiction was. And for some reason decided to go through my mom's line and tell some story about how his son was in the hospital with seizures... how ironic??? how about more like a divine appointment :) And for him to come back to the same bank again, and tell the truth...pretty amazing.

Now we don't always get to know why God allows things to happen in our lives, and to our children, but I sure hope that some 3 yr. old little boy somewhere is going to have a clean daddy in 6 months and that their family cycle will be different... all because he went through my mom's line at the bank and told some crazy lie which happened to be our reality. If you'll take a minute and say a prayer for that man and his recovery and his wife and little boy, I bet we could get some major prayers going up for them...as Ben and I know well...we have quite the prayer army behind us! 

I just love this story! And I cling to it knowing that God always, always, always, always has a bigger plan! If you haven't heard this song yet... it's totally worth a listen. I think we've all felt this at one time or another: http://www.youtube.com/watch?v=-METBrlP3xU

"Let me see redemption win
 Let me know the struggle ends
That you can mend a heart that's frail and torn

I'm worn... so Heaven come and flood my eyes"

No matter what we're going through... depression, diseases, marriage problems, deep sorrow, bad work place, addictions, financial struggles... Redemption can and will win! I believe it!

 So God, flood our eyes with HOPE and HEAVEN. 
 And thank you, thank you, thank you for this dear boy of mine... he's forever changing my heart and he's stirring up this world... like a boss!!! :) 

 

Big yard sale!!

Benjamin's been acting a little off the last few days and it's been exactly two months since his last seizure which seems to have fallen into a little bit of an unfortunate pattern. I was just telling my mom this morning how much I hate it when Benjamin is super quiet in the morning and I can't hear him (I'm hard of hearing which doesn't help). I lay in bed for a few minutes and then muster up all the courage I can to go into his room and "make sure" everything is all right. Scares me to death that I won't hear him seizing and what a relief when I walk in and he's still soundly asleep!! All that to say... it renews my energy every day to get this ding dang service dog/guardian angel!!! So....

Multi-family yard sale: this Friday and Saturday, from 10am to 5 pm  at this address: 12050 SE Rhone st. Portland, OR 97266

Here's our craigslist ad: http://portland.craigslist.org/mlt/gms/3896821578.html


And a big, big thanks to the many family and friends who donated their awesome stuff to our garage sale! And a big, big thanks to my church, GracePointe   for letting me use some of their tables, because I have soooo many items I didn't know what I was going to do!!:)

p.s. this is a multi-family yard sale that my friend (thanks, Nikki!!) does every year at her house and she invites all the UCP mom's to join her! You want to meet some of the best mom's ever and support some incredible kiddos? This is the place!

Say Cheeeeeese!!! Fundraiser for Benjamin's Service Dog!

I've wanted to get our family pictures professionally taken since Benjamin was born. But I could never get around to scheduling it because there was just no way Benjamin would sit still for any amount of time and look at the camera and smile... Not happening!

So when my childhood friend, Amanda Marl, with "Life & Style Photography" contacted me about a fundraiser idea she had and it started with... "I'll take your family pics..." I nearly had a panic attack! The conversation had phrases coming from me like, "I don't know if this will work".... "Are you sure about this?"... "It's going to be really really hard"... "and I'm apologizing right now for the tantrums you're about to see". Amanda assured me it would be fine and that we should give it a try.

Boy am I glad I listened to her! Photography has changed so much from what I grew up knowing. There's no more sitting in super awkward positions forever... no more holding a smile for so long that you know it's going to look completely fake. Basically, Ben and I just took Benjamin to the park for an adventure and Amanda captured it beautifully! Not to say she didn't have her work cut out for her! Benjamin was not in the best of moods and I was worried she might not be getting too many "happy face" opportunities and then she started sending me the pics afterwards. Oh my goodness! Talk about having a gift for capturing the moments!

 Be still my heart! What a precious moment between my two boys!!

We wanted to incorporate Benjamin's walker in some of the pictures since essentially that's apart of who he is

 And then, I'm not kidding... as if a sign from God... this guy and his dog showed up at the park and this would be my little Benjamin watching "Bella" the dog:

Even though you can't see his face here you can tell by his hands and the way he's sitting that Benjamin's absolutely ecstatic!! If either of us had any uncertainties or doubts about this whole service dog adventure, they were definitely dissipated here! We had such a great time! Amanda and Ken were so easy-going and patient. I just can't wait to have these pictures hanging on my walls!

Here's the info about the fundraiser:
**Now through August 4th Amanda is booking Summer Mini Sessions. Here's the details:
40 Minutes
6 enhanced images
$75 (+ $10 disc fee) 

 The session is tax deductible because you will make the check out directly to 4 Paws for Ability (the non-profit organization we have volunteered to raise $13,000.00 for and who we are getting Benjamin's service dog from) and put "Benjamin Silverman" on the check. The only non-deductible fee to you is an additional $10 disc fee. So in essence, the photo session is free and if you'd like a disc, it'll cost you $10.00

If you have a facebook account, you can like her "Life & Style Photography" facebook page and contact her through there. You can also contact Amanda by phone (503) 351-8039, or by email: amanda.c.marl@gmail.com (definitely check out her website on facebook! Her work is amazing! Newborn pics, senior pics, family photos!! All so different and beautiful!)

We want to thank Amanda for her complete awesome-ness and willingness to help us fund-raise for this service dog and for all our families and friends for supporting us!!! 

And lastly... one of my favorites:

 Hang on "Bella"!! We are so coming!

Benjamin's Birthday Surprise!!!

Benjamin turned five in May!! But when your child takes three-plus years to get to the developmental age of a two year old... you have to start getting creative with birthdays and presents! Benjamin is just starting to functionally play with toys for two year olds and up. Although his skill set is really all over the place (he definitely has the attitude of a 4/5!!!) we really are in the very early stages of toddler play. That being said, we have so many toys for Benjamin to play with and many toys "waiting" to get their turn as he gets older developmentally. So this year we wanted to change things up a bit. Plus, we felt that with Benjamin's amazing progress and steady health, this five year landmark was a big, big miracle in our books and we wanted to do something extra special!  Our little guy has just come so far! Here's my little boy only days old when we were literally just praying our hearts out that God would let us keep him here:

And finally a few months being home after almost 11 weeks in the NICU: (video below)

To this cutie little boy!!:

For his birthday, we wanted to get Benjamin something that he would absolutely love and would continue to stretch him developmentally as well. Benjamin has a really hard time doing anything he doesn't want to (disability?? sounds like his mom actually!! ;) So what Benjamin's teachers and therapists have encouraged us to do is to let him engage in his most favorite activities and then integrate the therapy/communication/whatever we're trying to do into his favorite activity. Of course, his most favorite activity is watching movies and he is so zoned out when he's watching, that our whole plan doesn't really work. For Christmas, Benjamin's Grandma and Grandpa Tuter and Great Marcia-gram got us a family pass to the Portland Aquarium. That's where we found out that Benjamin absolutely LOVES fish!! LOVES THEM!! And wants to watch them for hours! We thought, "what a great way to spend time engaging and talking about something we all love and teaching Benjamin to care for them and communicate about them and NOT watching t.v.!" So Ben decided to start investigating what would work best for our family and took this entire adventure on.

Ben found a steal of a deal, 30 gallon tank on Craigslist. He cleaned it all up and then started researching fish. Boy was this a fun endeavor! These two boys of mine spent many delighted hours at different fish stores. I had no idea that fish were so high-maintenance. I'm use to the beta or goldfish in the bowl that you never clean scenario and we have to PH test our water and they have a heater and can be picky eaters and currently we're treating a sick fish!! (Ben does all of it, I don't have to... thank God... I can't do PH testing... I barely passed Chemistry!! :) About two weeks before Benjamin's birthday, Ben set the fresh-water tank up. He slowly started adding and building the aquarium so it would be ready for the big day!

We kept it covered until Benjamin's birthday party. We had a few accidental sneak peeks... once where I was out watering the plants and Benjamin was set up with a movie and all the sudden I heard this over-joyed yelling. I ran in to see what was happening... sure enough, the towel was down and Benjamin was standing at the tank shrieking with delight! Thank goodness, there were only a few small fish in there. We kept a better eye on him after that! And here's the big moment: (video below)

And here's a close up of his angel fish:

Benjamin's whole birthday party was themed after Nemo and fish (he is way into the NEMO movie right now and we can't wait til the Dori movie comes out). In fact, here is the incredible cake Grandma Anji made for him:

That whole Nemo on top is all mold-able chocolate and I just about ate the whole ding-dang thing! YUM!

Last but not least, I have to show you two little gifts Benjamin received...
My son is now officially cool with these socks:

And Benjamin received his first dog present from his best buddies:

Benjamin had such an incredible birthday party! Lots of laughs and "happy yelling" and "happy hands" and following his buddies around... We felt so blessed to be surrounded by family and good friends and see my little boy's face so excited. Of course, always in the back of my mind, thanking God from the bottom of my heart for one more year with our miracle boy - Benjamin Button!

Tough Reality...

One thing I've really noticed about social media is that people can give off the persona of a "certain life" that is so far from the reality they are living that when you get a real glimpse into their actual life, it's completely different. I've often thought, "wow, what a wonderful life they have, they're always on vacation or doing lovely things" yet in reality I'm only seeing a certain side of their life because of what they choose to post (not a bad thing... I post way more when I'm on an exciting vacation then when I'm doing laundry!) In fact, I know many people who have had to take facebook breaks because it's so easy to get involved in other people's lives and how great it must be to be so-and-so that we can get consumed with it! Just the other day, one of my facebook friends posted about how she had literally cleaned all-day-long!! Thank you! Other people have to spend time cleaning too, because I was really starting to think I'm the only one who has to do that and everybody's house is just sparkling clean all the time and all they do is lovely things! :) (Again, I'm only seeing one side of their life and assuming that's their entire life. Yet, on the flip side, we have our other friends who post every time they're going to the bathroom! TMI people!!!) We are taught from a very young age to put our best foot forward. And while I think that's perfectly fine, and it's great to have a positive outlook on life, I think it's definitely ok to show some vulnerability too. We're all human, we're all going to go through good times and some bad times, and we're all learning how to live this life the best we can. (Believe me, I use to make it a priority to be that "I-have-it-all-together-girl" but now that I pretty much can't go anywhere without Benjamin showing everyone in the whole store that I don't have this parenting thing figured out... I got over that pretty quick-HA!!)

All that to say, I don't plan on posting too many "horrible days" because nobody wants to read about bad days all the time and I definitely don't want to spend my time or energy remembering them. (Ben always says, "Nicole!!! No negative Nellie!! Can I just tell you how thankful I am for him!!) But I also don't want to give this false sense of how amazing our life is without the reality of most days. Because let's face it, most days are pretty hard and I'm not feeling like the greatest mom. And the only idea of parenting and experiences I have are the ones I had when I was little or the ones I think are "normal" and believe me, we are still learning our new normal over here everyday!!

By the way, I want to take just a minute here to say that I know we are not the only ones going through or living hard things. Each of us has our own journey, and my purpose for this blog is for a couple reasons. 

• First, I want to remember things! Mostly the good and some of the bad so I can look back and see how much we've grown and how blessed we are! Not to mention, this is a major stress reliever for me... I love writing... always have!

• Second, I think through our life stories we can learn from each other. My cousin Hayley is fighting a hard battle with cancer right now (http://lifesprom.blogspot.com/) and I can't tell you how encouraged and inspired I am by this beautiful lady! My worst days are CAKE right now compared to what she's going through and she has blessed me greatly by her faithfulness and courage and amazing testimony... not mention I know how to pray for her specifically!   

• Thirdly, I want to continue to share and educate those around me about special needs. It's different... each situation and person is different... and we still have major misconstrued ideas about people with disabilities (and I'm preaching to the choir here as I'm about to share my own experience).  This is another entire blog which we'll save for another time!

• Lastly, this is the most effective way to keep my family and friends up to date! Yes, I'm that friend that would love to call you, absolutely love to get together with you, but honestly... most days I don't have the energy to even try and fit one more thing on my plate. My hope and desire is that someday soon I'll be more organized and together. But mostly I'm just living day to day and burning my energy from all ends. (But don't give up on me! Keep inviting and calling... please!)

Wow, this is already much longer then I planned, so we'll get to the actual story now!
A couple Fridays ago I had a really bad day. Definitely towards the top of the list. We had a pretty big meeting with some specialists and they gave Benjamin an Educational Autism diagnosis.This is different then a medical diagnosis and it's actually really a good thing. (Does that mean that Benjamin would get a medical autism diagnosis? We don't know... this is all new to us and we have lots to find out) Benjamin's about to start kindergarten and the services and learning styles he will be offered because of this will help him flourish!! The whole diagnosis was actually a really lengthy in-depth process. And the specialists who evaluated Benjamin and the staff were wonderful!! Still... it's really no fun to add another thing to "the list". Although again, I do think this will help us in parenting, routines, and all areas of his life. The specialists said the hardest thing about diagnosing Benjamin with anything... is that it's hard to know where the cerebral palsy ends and the autism behavior starts. So for example, is Benjamin non-verbal because of c.p. and that part of his brain doesn't work and so he has outbursts and frustration because he can't communicate or is it more autism and the non-verbal piece is common in autism. Super hard to know.

After this two hour meeting (it went great, but emotionally and physically depletes me) we had two school tours lined up of different classroom for Benjamin in the fall. One is a LEEP style classroom - Life Enrichment Education Program (btw, if a word is lighter or a different color that means it's a link and if you click on it it will take you to another website where you can read more about it if you're interested, I just don't want to write a whole book on here about it!) and the other is called a SLC/A classroom - Structured Learning Classroom for Academics. Both are basically different style special ed. classes.

We went to the LEEP class first (smaller student/teacher ratio) and to tell you the truth I was NOT prepared. The kids there are K-5th and there were about 6 of them there at that specific time and they were all older... the younger ones had gone home for the day. And I don't want to sound rude, or horrible or degrading, I'm just being dead honest about this. It was terrible... My little Benjamin is such a stinker, and so darn cute right now... and I had this harsh reality hit me that some of his behaviors might not be so cute and darling when he's 12. :( Did I think he would just automatically start functioning at a normal age when he got older? Did I think he would just stay small and amazingly cute forever? Who knows!! I didn't think... it's so day by day. (Don't get me wrong, I'm not saying that I won't think he's cute and darling, because I'm his mom and I adore him... but I got a glimpse of other kids at an older age... and it's definitely different being 12 and having special needs and being 5) It's going to be a lot harder. And if I think it's rough explaining Benjamin now... it's going to be tougher when he's older. Talk about a little bit crushing... what I wouldn't have given at that moment to be a normal mom visiting a normal kindergarten room... (just being honest). And then fear crept in... ugh!! If I'm feeling this way and I have a special needs son... how are other people going to feel about him when he's older? (This is all happening while kids are coming up giving hugs, some with rags in their mouth, some making non-verbal noises trying to communicate.) My heart sank... really, we all just want the best for our kids and it just hurts so bad when you can't make their lives easier... special needs or not. Now, thank God for Ben. His take on this entire day would be totally different if he was writing this blog. I am so ding-dang emotional about everything and he keeps me grounded and level-headed and helps me refocus on what's important -  that is making everyday of Benjamin's life count the best we can. We're not going to be worried about if they have the best academic classes and sports program in the state. We're going to be focused on getting Benjamin into a classroom that he loves!! Where he'll learn life skills that will keep pushing him forward and enhancing his life and who knows... many of those kiddos in there were working on math and reading! That would be awesome! Anyways, both of those class visits were disheartening for me and we both felt they weren't quite the right fit for Benjamin.

Fast forward to yesterday... I had emailed the Director of the LEEP classroom (advice from Benjamin's current teacher after I had another breakdown in her room) to let her know my concerns and she called me immediately and asked me if I'd like to visit another LEEP classroom. We went to the LEEP classroom at Lewelling Elementary and I just loved it!! Loved the teacher, loved the classroom and that it's only two minutes from my house. I feel so relieved! We have Benjamin's transition meeting today where we put together his first IEP (Individualized Education Plan) and there's going to be like 25 people there because we're transitioning from the Clackamas ESD program to the North Clackamas School Districts. I'm sure it'll be a little stressful but I'm actually pretty excited about it now!

 Isn't this journey we call life just crazy?? It's all about adjusting, refocusing, changing our perspective of our reality and a lot about loving. I promise my next blog won't be such a downer... This was just a really big step for me and I feel like I already have grown leaps and bounds experiencing it. Bottom line is I'm super blessed, and very thankful that God has a big plan in all this even though sometimes I forget that... ok, sometimes I forget like everyday. :) I do want to give a huge shout out to Clackamas ESD and North Clackamas School District. They have super hard jobs not only teaching special needs children but also dealing with their crazy, sometimes erratic parents! Both programs have been fantastic and I feel blessed we have such awesome programs for our kiddos!

Yesterday was Benjamin's last day at school. Since there's only one other boy in his class, Teacher Amy invited us to come in half way through and we had a party! Balloons and ice cream and bubbles! It was a blast! Here they are swinging below:

(of course, Benjamin's hands are blurry because he was so excited and doing his "happy hands"!!

Blown Away...

Blown away hardly describes how Ben and I have felt over this last month. I didn't expect this "dog journey" to be so emotional... and really, we've only just started. Seriously, some days I don't know if my heart can even take one more ounce of kindness!! We are so touched by the generosity from all our family and friends, friend's of friends and complete strangers. I keep getting notifications of donations and going... "who's that?" and after a few texts and phone calls I find out it's somebody that somebody knows that read about Benjamin's journey and wanted to contribute... and I cry. And then, I get a face book message that a friend and her friends are gathering items for our garage sale... and I cry some more. Then a phone call from a friend wanting to help us with a fundraiser... more tears. And then another donation from family members we rarely get to see and only wish we knew better, and then I cry all over again! An old co-worker I haven't seen in years... new co-workers I'm only getting to know... And we know there are lots of stories like Benjamin's out there, great causes and organizations to fund-raise for, and yet, people are giving to my little Benjamin. We're just completely humbled and in awe of this major village we have surrounding us. We are so thankful... and so very blessed... 

As of the beginning of June, we are at $5,140.00!!!!! Only $7,860.00 to go!!! Definitely not a bad start! We are able to get updates on our donations from 4Paws for Ability on the 1st and 15th of every month.

I know many of my friends are very curious about this whole process... and how we're going to fund-raise so here's what we have planned for upcoming fundraising events so far: 

- Craigslist... I'm living and breathing it. If it isn't totally necessary in our house right now... it's being sold. And let me tell you... it is another full time job! So if you're buying anything off Craigslist in the Milwaukie area, you might just want to contact me directly because I'm pretty sure we're the one's selling it! :) It's hard work, people are totally flaky, but it's still worth it. I've found it's the fastest way to make some money. (We've had some very generous family and friends give us items to sell too. And some great items! The rule in our house right now, "You can't keep anything that anybody donates to us" and there are some items I'm drooling over...but I just keep telling myself it's all for my Benjamin!) 

- Consignment shops: I'm not super experienced with these so I'm still learning the tricks of the trade. It's quite a bit of work and I'm actually contacting them this morning to see how my stuff is selling. I'll have to see if the work is worth it though or if I need to find a different avenue. I'll keep you posted.

- Benjamin's birthday party is this Saturday. (Isn't his birthday in May??) Yes... but we couldn't get one free weekend where both Ben and I would be home and at least the grandparents could come until this Saturday. So June 8th it is. Benjamin does not need one more toy or any clothing, and is only getting one present this year (you'll have to wait til after Saturday to hear about that!) so we asked if people still wanted to do something for his birthday they could contribute to his service dog... that will be his best gift ever! 

- We also had a generous photography promotion offer from one of our friends where she would shoot mini sessions and all profits would go to 4 Paws for Ability. Details to come on this! But here's a peek at her work because she took our pictures and did an AMAZING job! I'll share more when we start off the promotion. Pretty cool story behind our "photo shoot" experience with her too!

This is our June plan which is really about as much as I can handle right now. At the end of June we will regroup and put together another plan of attack. Thank you so much for your love and generosity and prayers and your interest in our little family. It keeps us going strong!!

A new set of eyes...

For the past year Benjamin's ESD teacher kept suggesting we take Benjamin to an eye doctor because she felt like something was a little off. (He had his vision checked a couple years ago at the Casey Eye Institute, but he was pretty little and it was not a fun experience) Our eye insurance only let us go to specific places though and there was no way I was going to take Benjamin to some little place in the mall where the entire building would hear him screaming and the whole experience would be completely traumatic for everybody. Recently, one of Benjamin's therapists suggested we go see Dr. Bruce at Northwest Eye Care: http://www.doctorbruce.net/ and boy are we glad we did! (They were even able to code our appointment as a medical visit... $30.00 co-pay!!)

Now a little background information... Benjamin absolutely HATES anything on his face or head and will completely tantrum (to the point of vomiting or unsafely thrusting his body until the object is removed). So you can see why I was already completely stressed out and anxious about this appointment. It was going to be hard, and loud, and just down right awful. So my mom headed on over, we stopped for Starbucks to gear up for battle, and headed to the appointment. 

The first thing they wanted us to do was put Benjamin's chin and forehead into that strap-like machine that happened to still be out in the waiting area... My mom and I just laughed nervously. After it became quite apparent that was not happening, they checked us into our room and started testing his vision using different tools and lights. Any time Benjamin started getting frustrated or uneasy; they stopped immediately and tried a different method. Benjamin was doing great!! Dr. Bruce finally felt he had a pretty good prescription picked out and wanted to put it up against Benjamin's face. 
"Just warning you... this is not going to be pretty!" I said. Well I was wrong... dead wrong. Dr. Bruce put the prescription lenses up to his face and Benjamin's whole body just relaxed. And he kept leaning forward and putting his head against the device so he could look through the prescription. Dr. Bruce took it away and Benjamin started clapping which means, "More! More!" in his sign language. I couldn't believe it!! My mom and I were definitely crying...it was like we were seeing a small miracle!

Dr. Bruce said that Benjamin is very far-sighted, has astigmatism and could possibly be seeing double... OMG... this little boy of mine! How strong and brave is he! Here he is, can't see anything close up and double and we're trying to make him walk all over the place with his walker and wondering why he won't put puzzle pieces in their place and many other things! Poor Guy! Dr. Bruce thinks Benjamin's new prescription might really change his little life! 

We had to wait several weeks for the glasses and now we're trying to integrate them into his daily life.  Benjamin is doing pretty well. We are trying to keep them on 10-20 minutes for several times a day. He still doesn't love them being on his head (there's a band on the back to keep them on) but I think over time we will be successful! (video below)

And now this cutie pie:

Birthday Miracles...

Benjamin turned 5 on May 13th. Ben and I were pretty bummed because he had to work all day and I was working all night with a therapy appointment and meeting with some specialists so no real fun plans. However, Benjamin ended up having a great day full of first and little miracles and it was awesome!

First off, usually Benjamin waits for me in his room to get up in the morning, or he'll crawl in and then pull to stand at the bottom of my bed. But this morning... this is what I woke up to: (video below-may not play on certain devices)

I guess he knows he is five, and it's time to be a big boy!!

Next, we were headed to our speech therapy appointment where we practice feeding and communication skills. Benjamin walked into his own little table and chair... with a cupcake, balloon and some surprise bubbles! (He's waaay into bubbles right now)

We had some major fun with blowing the candle! (You can see Benjamin doing "happy hands" here. (video below)

Then, the second birthday miracle happened and this one is a big one in our books! Benjamin ATE his cupcake!!!! He's had licks of ice cream and frosting in the past but this is his first birthday eating any cake!!

The bite:

Chewing:

More Chewing:

And then my very happy birthday boy: (video below - this is sooo cute. If you can't see this with your iphone, get on a computer! it's worth it!)

What a great day! Huge milestones for my best buddy!! And Ben is working on a special surprise for his 5th birthday party! That'll come in a later blog I'm sure!!

p.s. still lots happening with upcoming fundraisers and garage sales and ideas for Benjamin's service dog. But if you'd like to make a donation online or by check, you can check out our fundraising page here: http://www.razoo.com/story/4-Paws-For-Benjamin-Button