Happy 5th Birthday!!!

Five years...

It's been five long years since my twins were born.

Kenny's Milestone shirt...complete with a schoolbus, his actual footprint and his guardian angel, Nick.

Five years of mixed feelings, emotions, strength, laughter and sadness.

Being a mom of so many...especially of a son who is always sick, who has doctor appointments every week and just needs that extra attention really made these five years seem like they went by in warp speed! Almost like I have missed out on so much...but experienced more than most.

As I say every year, Kenny and Nicks birthday is extremely bittersweet

...am I supposed to be happy? Sure I am. I mean, I became a mommy to twin boys. I was ecstatic, scared and amazed at how tiny but perfect my twin boys were!

Am I supposed to be sad? Absolutely! I only made it just barely into the halfway point of a pregnancy!

I felt them kick and move over all parts of my belly, not just from one baby...but two! I talked to them every chance I had, almost like I had a premonition that my time with being their protector was short. I already knew their personalities, even at 18-19 weeks! Believe it or not, Nick (who was on my left side kinda in my ribs) was a very active little boy. And then you had Kenny who was on my lower right, almost in my hip/back area...he was the quieter of the two. I was just amazed at how I was actually carrying two babies...just amazed.

 I've always wanted twins, I mean...being a twin myself...my husband being a twin...I just thought it would be really cool to have twins...and five years ago, I gave birth to them...just waaaay to early!

I'm not going to lie, some days/months/years are better than others...and these last few weeks have been torture for me.The guilt of having them early, the role as not only mommy but caregiver is overwhelming.

I am so extremely happy that our Kenny is here and is doing well (minus some health and development issues). He is such a great kid...a little feisty, but that is what helped him overcome the NICU and all of his health issues. A bit playful when he gets going and definitely, a handful when it comes to feeds and/or feeding, but extremely loving and his little eyes and smile just melts my heart. But on the other hand, how exhausting he can be (yeah, still no respite). How stubborn he can get. How hard it is to try to understand a nonverbal child (but actually learning his own way of saying things).

Also, how paranoid I am in many aspects of life when it comes to him. When will he have his next tantrum...or worse, seizure? What happens to him in the future? Will he ever talk? Have a normal life?  When will get sick and end up in the hospital? How long can his lungs last? The questions could go on forever...but I guess I wouldn't be a mommy if I didn't wonder these things not just for Kenny, but for all my kids.

Like I said, its a bittersweet day. I WANT to be happy...and I am, at the birth of my babies. I want to celebrate their births....but on the other hand, how can I celebrate a day that shouldn't of happened for 17 more weeks.

me at 22.6 weeks in the hospital

How can I celebrate a day that has made my living child live with disabilities and uncertainties. How can I celebrate a day that eventually took the life of the other...

I will...I must. So, today I will honor my sons. My Kenneth John and my Nicholas Edward...born at 23 weeks gestation...five years ago today at 10:29 & 10:30 AM. The best and worst day of my life (that is until...well...that post will happen in a few days).

Nick

Kenny

I thank you my twins for showing me the true meaning of life. How fragile life is. How amazing God, doctors and nurses (along with technology) really is.

I thank you for giving me 23 weeks of being a mommy to twins, for giving your brother and sisters two more reasons to love. I thank you for being my babies.

I also thank God for giving you both to Tony and I. What a crazy run we've had these last 5 years.

Today we will be taking Milestones for Micro onsies to the NICU where Kenny and Nick were at. The nurses will be able to fill in the blanks on the shirts with fabric pens for miracles that are graduating from the NICU to home! I am also making and taking tons of cupcakes to different departments of the hospital in honor of saving my son who beat the odds...and is now 5, and also for doing the best they could do in trying to save our angel, Nick.

 So heres to year of more firsts, more overcoming and more memories. Thank you my sweet little boys...yes, I say Happy Birthday to my boys...one here with us and one in Heaven. I love you both.

Confirmation time

Its been almost 5 years...five years of living a life that has its ups and downs....

5 years of thinking your alright and then it hits you...

5 years of what most people say that they would never be able to handle...and yet I/we have.

Today has been one of those days where it hasn't been so good. The stress of everything...the daily life of Michele...has hit home. Questioning everything from why to...well...you understand.

After getting a beautiful e-mail from one of my friends about my oldest sons confirmation practice last night, it really hit me hard. My son, Tony is making his confirmation on Saturday(tomorrow). He has planned and prepared for this for months. When he told me the name he wanted to take as his confirmation name, I felt sadness but extremely proud of my son for picking the name.....the name...

Nicholas

Yes, after St. Nicholas...but there is much more meaning for him choosing this name. See, when I was pregnant with the twins, my son told me that he wanted to name one of them. He wanted to name the one on the left, Nicholas (Nick for short). He loved the name and well...so did I. So my oldest son, who was so excited that he was FINALLY going to have brothers (after 4 sisters) got to pick out one of his brothers names. Unfortunately...Nick was the one who passed away. Now try explaining that to a nine year old who was so excited about his brother Nick. That's all he talked about....Nick this and Nick that.

Well, fast forward 5 years....

When my son had to choose his catholic confirmation name, the first (and only) name he thought of was Nicholas. Yes, the tears flowed and I got choked up. My son was going to have a little bit of his brother with him forever...

You'd think, after 5 years I'd be alright. NOPE. Not this year. I miss my baby with everything I have inside of me. I went to the cemetery this morning to just have some time to think about things. I ended up cutting the grass all around his stone and placing some spring/birthday decorations around it. Oh...and I ended up crying just as hard as the day he died. At that moment, I wanted to be with him. I wanted to be holding him, smelling him and staring at his beautiful tiny but perfect face with his little pointy nose and chin and his blond hair. I found myself on my knees with my head to his stone wanting, just wanting it to be a bad dream. Praying to God that there is a Heaven and that I WILL see my baby again. Will it ever get easier? I mean, I know it has too because I had a few years where I was fine with it...but not this year. Its a very hard one for me.

 Now, tomorrow, he (my oldest son) is making his confirmation...taking the name Anthony Nicholas Tomecko...what an honor to his brother...yet, I know I'm going to need a whole box of tissues because this is a hard one to take in. I am so proud of him for everything he has become and what the future holds for him...I'm just praying that life gets easier with a whole lot less heartache.

Update...
Yes, the box of tissues was very much needed. My oldest son is a great kid and has great taste in shirt color...tee hee.

 The bishop had a special bond with Kenny...it was almost eerie how he saw something in Kenny that he just took to him!

 My sons Tony and Kenny, my nephew Dominic and Tonys good friend, Shawn and his cousin

My girls and our friends girls

 Tony, Tony and I

 We went out to dinner with Tony's parents, my sister and nephew and our friends whos son also got confirmed.
What a blessed day!

What it's like...

What is it like to have a big family?
You know...more than the typical 2-4 kids?
It's having a noisy house every day, but not realizing its noisy because its our way of life.
It's hectic morning, busy schedules that fill the calendar completely,

long days and sometimes longer nights.
It's birthday parties pretty much monthly.
It's loud, whole family sit down dinners at the dining room table

...even if it is only hot dogs.
It's loads of laundry, tons of dishes and nonstop cleaning.
It's more clothes and toys than there is room in the house.
It's crazy shopping trips, and endless rolls of toilet paper...
It's giving up the wants in life but being satisfied with just the needs.
It's teenage fights for the bathroom, scheduled shower/bath times

...did I mention it being loud?!
It's funny looks from young couples as to why, and old people that bless us constantly

...not to mention a great relationship with my OB!
It's bags of hand me downs, gallons of milk, hours of helping with homework

and barely any time for yourself or a quiet area of the house.
It's wishing you'd have 3 minutes to yourself

and knowing that hiding in the bathroom doesn't work anymore.
It's but mostly tons of love, a bunch of inside jokes, rarely eating out, and a whole lot of creativity!

What is it like to have a special needs/chronically ill child?

It's the hardest job I've ever had.
It's every day what seems longer than 24 hours.
It's understanding and caring when you don't understand, but you care so much more.
It's hoping and praying daily...that you have patience, knowledge and a big pot of coffee

(and some help every so often would be nice).
It's lonely.
It's days filled with doctor appointments, therapies, medications,

but also extra hugs and a deep compassionate love for life.
It's wanting to take your child's place, for they don't deserve such a hard life.
It's wanting to run away at times...but having no where to go

(a big 12 passenger van takes a lot of gas, hence...expensive).
It's being so excited over the easiest, newest, simplest accomplishments

...that we would normally take for granted.
It's being able to understanding the wants of a child that can not speak

...and being proud of it.
It's fighting for rights, fighting for better...fighting for a life that deserves only the best.
It's getting "those" looks...the kind with smiles,

but all the while their eyes are saying "how sad" or "better you than me".
It's trying not to think about tomorrow...but having to think about tomorrow.
It's crying in the bathroom...when you get a moment to breathe,

then coming out feeling better (yes, even with the kids banging on the door...see above).

It's big bear hugs, cuddles on the rocking chair and always looking for that hearing aid that gets thrown.

Its being so proud of all my children for their love and patience

they learned with having a special needs brother.

It's a whole different life. One that I never asked to have.

One that at times is extremely trying and stressful, but it is also a privilege!

A compassionate, life changing privilege that is scary and tiring but with many rewards.

What is it like to have lost a child?

It hurts. It hurts to the point of wanting to throw up.

It's a life altering, soul changing experience.

It's an emptiness that never goes away.

It's a knowing you felt their soul leave their body...and oh what an experience it was.

It's a lot of crying. Crying until you cant cry anymore.

It's having really good days of happiness and having a moments of sadness.

It's knowing that life is still going on for those all around you, but you feel like your world, your life...at that moment and for quite some time after, has stopped.

It's praying to God that there really is a Heaven...even questioning it at times....many times.

It's visits to the cemetery

Little reminders....and some big ones.

It's wanting to have that one dream...just one dream of seeing/holding your baby again.

It's people saying they understand...but unless you've buried a child, you don't.

It's having someone to talk to....when

no one is around.

It's understand that life is too short.

It's one day being able to smile...just a little more than the day before.

It's always remembering, never forgetting and wishing it wasn't forever.

It's that time of year again...

...the time of year when I try to beg people raise money for the March of Dimes. I have been tossing the idea around of not doing it this year. Not because I am mad, ungrateful or indignant about the organization, its just out of pure exhaustion. This year I didn't want to do the whole "will you please help out cause" to all my friends and family. I'm getting tired of doing that. I wanted to do something special to raise money...and somehow, somewhere between donating my time baking for our fish Fry's, taking care of 7 kids and making Milestone shirts I have lost momentum. I figured that this year, yes, we will be walking as a family....in honor of all our kids, especially Nick and Kenny...but I wont be raising money this year.

Yeah...I know...shame on me...but honestly, I just wanted to do something WITHOUT having to ask, beg or raise. I have nothing against March of Dimes, I am a very avid supporter in their cause. I just feel worn down, and I just need a break in the fundraising department...and next year, I will be back to trying to raise money...maybe with a fundraiser or a giveaway trying to beat a goal of $500 or so, but not this year. I am actually in awe of some of my friends who throw these huge fundraisers and get many donations from everywhere...sadly, I just dont have it in me this year.

We'll give our walking donation, but don't expect this person/family to be asking for donations from anyone (no disrespect to the March of Dimes). This year on April 29th we will join in the March of Dimes as Team Tomecko but we are just going to walk, walk as a family...for a reason of hope, love and to prove that their research does save lives.

A Monday full of signs

As if coming up on Kenny and Nicks (way too early) birthday and especially Nicks angelversary isn't bad enough, Monday there were reminders...over and over again.

It started with taking Kenny to his therapies (speech and OT) at the hospital. As we were waiting, a nurse walks by. She stopped in front of us, got the biggest smile on her face and said, "Oh my goodness!!! Kenny? Is that you? You are getting so big!" Turns out, shes a nurse on the pediatric floor that Kenny goes to whenever he's hospitalized. It was so nice seeing her again...and even nicer that it wasn't because of an admit of Kenny ;)

The second incident happened not too much after seeing his nurse. A woman with an infant sat down right next to me...very cute baby girl in her carrier. I told her that her baby was just so pretty , made mommy small talk and then mentioned something about how chubby and kissable those little cheeks were. She then tells me that they are completely different from her other baby's cheeks...the baby girls twin brother...yeah, shoot me now please. Did I really have to be having this conversation...now? "OK...not gonna let it get me down...I'm good like that. I'm a tough cookie", I'm telling myself! So I ask the next question..."were they early?" wanna know what the answer was? Here goes...nope! Actually she was 39 and a half weeks when she had them....the topper...the kicker to it all? Her previous set of twins were 36 weeks! Inside I'm face palming and wanting to just cry and walk away, but on the outside, I put on my happy face for her! I congratulated her for having such a strong uterus and that not many mommies carrying twins goes that far into the pregnancy. I really was happy for her. She then asked if I had any other kids. Do I dare go into the full "I have 8 living but one passed away" which then leads into Kenny and nicks story? Nope. I just couldn't. I just told her that I had 8 children...period.

Thank god for therapists being prompt to the appointments!

And finally we get to my last twist of fate. As Kenny and I were waiting for Tony to pick us up, after great speech and OT sessions, these two older women were sitting in the same waiting area that we were. I heard them talking between one another saying how cute that little boy was...how he had such an angelic and kind look to him..talking about Kenny.

The one woman asked me if she could give him (meaning Kenny) a pretzel or a piece of gum. I thanked her but told her that he doesn't really take much of anything by mouth. She asked why was that? I said that he has feeding issues which require a feeding tube. The older of the two ladies made mention that she thought he looked tiny for his age and I said yes, but he is huge compared to what he weighed at birth...and then the conversation really got going! I told them about how he and his twin were born 17 weeks early. They asked tons of questions about what their issues are now...yep, they didn't hear the part that I told them that Kenny's twin passed away.

Ugh... So anyhow, the younger of the two asked me if his twin was bigger than him...as in now a days...not at birth. I looked at her and had to tell her that his twin, my third son, passed away. OK, now telling someone that a child of your died is not what many people ever want to encounter. To some, it is a very hard and awkward topic...so I try to tread this topic lightly in face to face conversations. I do have to admit that they were very compassionate to Kenny and I, It was such a blessing in disguise. The conversation didn't end after that! They just were as sweet as could be, talking to Kenny even though they had no idea what he was saying...which he was trying to tell them that a school bus went by. By the time Tony was there to pick us up, these older women knew all about Kenny (and Nick). I told Kenny to say bye to them...an without even thinking twice, he went over to each one of them and gave them each a huge hug! Cutest.thing.ever!!!! I thought he'd just wave bye-bye to them...but noooo...he really liked these ladies.

As we were walking away, I overheard them talking about knowing that he was a special little angel the minute they saw him.

It made me so proud.

I do believe that Nick was totally giving me signs and nudges!

The Autism Factor....

I was surfing the web and I came across a beautiful site with lots of helpful information for us mommies (and daddies) who are new to this whole Autism diagnosis and what to expect...this was one of the blog posts which I found a great read:

8 Things You Need to Know about Autism

Autism touches many lives, whether you are on the spectrum, or your child is on the spectrum, a family member or friend is on the spectrum…
The fact is that the prevalence of autism is on the rise. With more children being diagnose each year there is still such a lack of knowledge as to what autism really means.

1. It’s a “Spectrum” Disorder for a Reason
You will not find 2 people with a diagnosis of Autism the same. “If you have seen one child with autism…you have seen one child with autism”. Some children are very affectionate and others shy away from affection and touch. Some talk a lot, where others may not talk at all. Of course there are similarities across the spectrum but this by no way means that each person can fit the perfect therapy/intervention mould. Each child needs a customized programme to address their differences specific needs.

2. Empathise don’t Sympathise

You need to live autism to really understand the complexities this disorder brings with it. Yes there are some Autism Savants that can do remarkable things and are looked upon as genius; however everyday autism is not glamorous. Parents need as much support as they can get.

3. People do the Best They Can with What They Have.
Parents fight many personal and emotional demons when raising a child on the spectrum. Simply saying “Well, just do this and just do that” is easier said than done. It’s good to understand that each person always does their very best with what they know and what resources are available to them. Offer help before you offer judgement.

4. Autism has Strengths as well as Weaknesses
Far too many people focus on the negative aspects of autism and what that person/child cannot do. However there are many strengths of that person/child on the spectrum as well; and these must not be forgotten but instead celebrated and embraced. Whilst understanding their weaknesses can help guide us to know where to help their learning and development, there is always great value in using their strengths to improve on their weakness.

5. The World can be Scary
The world we live in is a very dynamic place. Situations change momentarily; there is unpredictability and we constantly have to adapt to these. Autism struggles with these adaptations, the unpredictable and being flexible. These skills can be learnt through specified programmes, however without dynamic intelligence the world is overwhelming and scary.

6. Co-occurring conditions is not Autism
Along with autism often come many other conditions that people have to struggle through. These co-occurring conditions can be: ADHD, seizures, developmental delays, sensory processing disorder, dyslexia, dyspraxia, apraxia etc.

7. Words still have Meaning
Just because someone has autism doesn’t mean they can’t hear, so be sensitive to what you say as you would with any other child. Also be sensitive to their interpretation of words. Often words are interpreted literally and these kids don’t have the ‘sarcasm meter’ we take for granted

8. Autism is not Contagious
You cannot catch autism, so allowing your child a play date with a child on the spectrum will not put your child at risk of developing autism. Learning to accept and include children on the spectrum will not only benefit that child, but will also open hearts of the other children to those who see the world a little different.

This is taken from http://theautismfactor.com/ There is a lot of great information for those whose children are on the Autism spectrum.

Baking, baking and more baking!

This has been one heck of a lent season. In these last 6 weeks, Ive learned that I LOVE baking! Its time consuming but for that Thursday, after dropping the kids off at school, and I start baking...it make me feel more like a human being...a person who doesn't have to worry about breaking up fights between the kids, washing clothes...whatever. For that time, I am in my own little happy baking world (along with my little helper Gina and then when Kenny comes home...him too).

So here is some of what I do...what I've been doing every Thursday-Friday since Lent began for the last 2 years...

These are trays that we place on the bake sale table. Notice the tins on the right...those were filled with even more cupcakes that I made...

This tray had Carrot cupcakes with cream cheese frosting, more chocolate ones, chocolate chip cookie dough ones (they're the ones with the little chocolate chip cookies on top), I also made chocolate chip cupcakes

I made lemon squares with a rich topping consisting of Cool Whip, cream cheese, powdered sugar and a touch of vanilla. Topped with graham cracker crumbs.

Here are the chocolate chip cookie dough cupcakes...The princess cupcakes One of the versions of Chocolate cheesecake with chocolate whipped topping, drizzled melted chocolate and a fresh raspberry...

Here are some with the chocolate whipped cream, chocolate drizzle and raspberry...

Triple chocolate brownies with a ganache drizzle topped with mini chocolate chips. A chocolate lovers delight...

Chocolate with a surprise of chocolate, white or mocha frosting hidden in the center...

Here are some of the past weeks bake sale cupcakes and bakery that I have made...

Pizzelles with powdered sugar...

These are some of the crumb cakes I've made...cherry, apple and there is a cinnamon one...I also have made chocolate whoopee pies!

And with any leftovers, we have given them to the local police and fire departments!

What a day

Have you just had one of those days where you think your going to get so much accomplished and then...BAM...it all goes to sh**? Well, yeah...that's the day I've had. Its Thursday during Lent, which means I start baking from the time I get home from dropping the kids off at school till late at night. I do this baking for our school/church fish fry. It is my stewardship towards our church. I am giving back rather than giving something up for lent. Well, anyhow...I do pretty much all the bakery for the bake sale and I love it! I love baking. It is my release...my time away from thinking about my daily struggles. I really enjoy doing this on a weekly basis...trying new recipes, new decorating ideas...I'm kinda using my creative skills for all of this.

So, why am I having such a hard time today? Why had it been one thing after another? Oh yeah...I have a special needs...er...uh...high maintenance child who is extremely demanding of me. He takes up 95 percent of my time...the other kids take up the rest. Today was the breaking point of knowing that my life is no longer for me. It is no longer my dreams to follow, my hopes or wishes..or even my time to just be me. I have given it up for what I have. A hard pill to swallow, especially since I have so much I WANT to do. I Love my kids dearly and love taking care of Kenny...but sometimes, I just want to me me.

With my baking today...I was forgetting this and not putting enough of that in the recipes...Its very disheartening! I had to pitch a whole huge bowl of red velvet cake mix because I forgot how much of the oil and water I put in...and tonight, I made lemon squares...they SO didn't look right! UGH. I HATE when things don't turn out the way I wanted them too.

It doesn't help that hubby is extremely busy and that Kenny and Gina were non stop screaming and crying...Kenny being very clingy and just not a very happy camper today. So, yeah..I got nothing accomplished. So I sit here at 11 at night...still having to make 6 dozen cheesecake cupcakes and I honestly don't want to. I feel like I'm gonna screw those up too. Should I wait to morning? I dunno. I just hate the fact that I cant seem to do what I want to do without other responsibilities as opposed to others in the house who has one thing and one thing only to worry about.

I'm tired...I'm ranting and raving like a mad woman..and I just want to go to sleep and let this day pass. I just wish we had more of a support system to help me with Kenny. He is so much to handle at times and I am tired....I'm so very tired. Grateful to God to think that I can do this..but questioning this greatly.

On another note. I did learn how to make chocolate cheesecake cupcakes...the taste test will be tomorrow morning :)

My sisters (very cute and unique) baby shower invitations...yes, I somehow found time to make them...

I did it! I finished my sisters baby shower invitations.

They turned out better than I ever imagined! They are invites in a diaper!

Here is a step by step to make these:

1) Find card stock that you love at your local craft store. They come in books that have a theme or single sheets...I went with the book of papers that had the same theme. Remember that this will offset the whole feel for the event, so make sure the papers you pick are exactly what you want.

cut two different sizes of different patterns... one will be 5x6 while the top piece will be 4.5 x 5.

Next, find the style of decorative edging scissor you want and cut 3 of the 4 sides on the smaller piece of paper that will be the top layer...leaving the bottom straight.

This is a side view of placing the paper on....the straight edge will be on the bottom. and glue it down.

Next, print out 1.5" square baby pics of the couple who is expecting...I wanted them to stick out from the colorful and busy background so in my computer, I made the picture sepia...

You are also going to cut out 2" squares of yet another pattern (yet still all within the color scheme of the papers)...and take another style scissor to the edge. Glue the picture to the patterned/cut paper square.

Make sure for the baby picture of the dad to be is on a completely different pattern and color of that of the mom to be...another pattern...the more patterns, the better! When you get both baby pictures done glue them to the main invite that you started.
Now for the wording and actual invite. Use your computer program to come up with a saying...print it out on vellum paper...make sure you cut the vellum to fit the entire invitation face. There are many different sayings, invite styles and fonts out there in cyber space.

Line up the vellum to the invite and edge the corners to a nice style.

Take the small hole punch and punch in holes on each corner.

Place little brads (there are so many styles and colors to chose from) into the holes. I chose 2 different colors...just because I was going for the all out busy/colorful/country french baby look.

You are then going to make your bows for the top center of the invite. I guess you could buy them, but I wanted the extra punishment of making my own...haha... make them little.

Attach them with glue dots...they will flatten and hold the material perfectly without a mess.

When you are done with the invite, get a package of size one diapers and place the invite into the diaper. Tie two 2' pieces of ribbon around the diaper and into a bow...

Add a little tag with something on it or where they're registered at.

Place it in an envelope and mail!

And that's how I made them ;)

Any questions...

or

if you need some done for YOUR event and you want someone else to take on the task,

I could do it for you!

Just contact me at:

mtomecko@gmail.com

Kenny playing with his cars...

And explaining in his own way what he did. If you listen closely, at the end you can hear him say school bus!

God has really blessed us with this little miracle! He is perfection made perfect!

Words that adds salt to the wound...

It was one of those days. It started out decent...you know, the usual Monday morning for me. I get the kids up and take them to school, come home to clean up the morning mess...all the while taking care of Kenny and Gina's highly demanding (and slightly amusing) requests for one thing or another. We then get ready and go to Kenny's therapies. This week it was Speech and Physical.

I had Kenny's feeding tube backpack on him along with his hearing aids. Now keep in mind that Kenny gets sensory overloaded very quickly. This backpack, which holds his pump has some weight to it and he loves it! It kinda calms him down like a weighted vest would...so anyhow, we get called in to his speech therapy and he walked in like he was going to take on the world today! Head up with a little bounce to his step. He remembered to sanitize his hands and turn the light on in the room. I sit against the wall while his speech therapist sits at a table with him and does small games and letter/word sounds...today was the OO sound (like moo, look, book). He was really trying to form the sounds with his mouth and was working as hard as he could.

I was so proud of him, my little man who will soon be five...trying so very hard to learn to say words and do signs....and yet deep down inside, my heart was heavy.

Having to watch my son, who has had to fight for everything...including living, struggle to do what should come naturally.

Then I snapped myself out of it and thought to myself...yeah...he's gonna show everyone. He knows everything he wants and he'll be alright...he'll be alright.

He is already trying to say iPad, school bus, bowl, ball, and more...and the signs he's learning...melt my heart.

At the end of his speech therapy, she couldn't get over how wonderful he did and how much more connected he was with her. She felt that he was finally just starting to realize that when you put a word with a sound AND a sign, it all fits together. She was so happy with him and that he was a joy to work with...which made this momma very proud.

Now off to wait 15 minutes for our next therapy session...PT (the main reason for this post)

With the backpack still on giving Kenny his feed, and the hearing aids in, we waited for his physical therapist. She came out and again, Kenny knew the drill...walk over to the handicap button to open the door, press it and see mom 45 minutes later. But before he walked in, the therapist asked if the backpack could come off (her thinking it was a school backpack). I quickly reminded her that Kenny was getting a feeding through his g-tube and that, no, I couldn't take it off...but that he'd be more that fine to do PT with it on.

To make a long story short, we both thought that the backpack would act as a weighted vest and that he's be more focused (kinda like he was during his speech therapy earlier). My last words to her was that he did great in speech...very focused and tried very hard...and hers back to me? Well, it was more of a sarcastic...well...ok, we'll see.

End of the appt came...door opened and out comes Kenny, running like usual towards me followed by the therapist. Man, I thought to myself....she looked like HE worked HER rather that the opposite. She told me that he was just not paying attention...yada, yada, yada....but the backpack DID settle him down a little...yada, yada, yada....

We made some small talk about scheduling and then the hook, line and sinker...the biggest zinger ever....

...as Kenny and I were just walking away I hear, "you know...he's got the attention span of a flea."

WHAT?

Did I just hear an adult woman, whom I trust with my son, just say this to me?

So with the minuscule of time it took to take what she said to me, decipher it, and then comprehend it....oh, did I mention, I thought to myself..OK, there is some PMS going on...maybe on my behalf, maybe on hers. Maybe I'm being too judgemental (don't go off on her)...maybe she didn't mean it such a way where she totally made my son out to be...like that of a flea...(don't go off on her)...maybe she just meant he was preoccupied or something...(for the good of God, don't go off on her Michele). Then I thought back to a couple of sessions ago when I sat in on them...and how she was short tempered with him because he didn't understand what she wanted him to do. She held his face with her hands and got close and told him that he NEEDS to start PAYING ATTENTION...to LOOK AT HER.

All this thinking (within seconds of the comment) made me turn around and smile....I just smiled and told her that if she couldn't handle his flea sized attention in just 45 minutes, she definitely wouldn't be able to handle being his mom...God gave him to the right person!

I walked away holding my son who's heart is bigger than hers will ever be...and filed a complaint. I told the supervisor what had happened...that I didn't want her to get in any kind of trouble because maybe she didn't mean it in a bad and inappropriate way. Maybe she just felt THAT comfortable with me that she could be sarcastic and compare my son who has severe hearing loss, developmentally challenged, muscle issues, who's non-verbal, has microcephaly and a whole slew of other health issues to that of a tiny bug that has no meaning except to irritate. I just don't know. The supervisors jaw just about hit the floor. He didn't know what to say except that he was sorry. He was going to talk with her. That's all I wanted. Maybe she really doesnt know all that is going on with him...maybe she only feels like he is a normal child with some muscle tone issues...if thats the case, shouldnt a therapist (who works in the same hospital where ALL of Kenny's doctors, appointments and records are kept) read through and actually SEE what they are dealing with? There is so much yet, I don't want her to get into trouble of any kind...I just want her to know that this mom of a special needs child has had a pretty rough last couple of years...these weeks leading up to Kenny and Nick's birthday/Nicks Angelversary are rough on me. Its mostly about flashbacks and tears, with still some whys and what-if and guilt (yes, even after 5 years). So please don't say stupid stuff...its almost like calling my son retarded...it really is hard to handle.

I know this isn't the last time I'm going to have to deal with this. I just pray that Kenny's feelings wont get as hurt as mine did today.

What would you have done?

Facebook and misunderstandings

I decided to write this post in lieu of the whole Facebook era. I have been an avid FB loyalist since I tested it as a beta...years ago. Back then, it was really only games...I do believe the one that stuck out in my mind was some sort of vampire game. The status of people were short and to the point' for instance..."<--- is tired", or..."loving life". The friend list was mostly gamers...until we were allowed to start inviting people and then the word got out to EVERYONE and their mother! I now belong to many closed and secret groups...of which are my playgroups, moms boards and preemie boards that I belonged to while pregnant with many of my kids. My preemie groups are more from word of mouth from other preemie moms. I love and respect all of these ladies (and some guys) on all my groups.

I've reconnected with people that I've went to school with...uh...many years ago and love being a kind of voyer into the lives of people that at one point in my life, were there every day...through all my school years. It's been a blessing to actually reconnect with so many of those that I have missed and always wondered what happened to them. The miles and years don't seem so far away anymore. I have "been there" for my long lost friends and acquaintances for births, sicknesses, vacations, proms of their kids, and even deaths...of a family member and even a few deaths of my friends whom I still go to their wall and just remember their lives...

FB has been a blessing and a curse at times. Yes, I've gotten into some written heated arguments...and afterwords I laugh because...they're just written words. You can't really get into an argument when there is no expression to the words written...sure...YOU CAN USE CAPS to show that you are yelling, but honestly, it's still typed out words with no expression. One can easily take offense to pretty much anything typed or posted.
Yes, I've even lost family to this curse as well. You can try messaging them, but again, they are just typed words...not really any meaning to them.

I've come up with a list of things that will definitely get you defriended, blocked, or get banished to the "acquaintance" group (for those of you who don't know what this is, it is the politest way a "friend" can ignore you without actually hurting your feelings and delete your a$$. They won't see what you post unless they actually go to that list.)
And stuff that you SHOULD do as common sense as a friend or family member on FB.
It comes down to FB/Internet code of ethics...you just dont delete family once you are "friends". You can hit the "hide all posts" button so you don't see any of the posts.

1) I've learned first hand that to express a belief that you are passionate about is a definite no-no. Do NOT post anything about politics, your views on abortion, or anything that is on the news....this includes entertainment news...you know, stuff like Angelina Jolie and her husband live in partner, hottie Brad Pitt.

2) Games...sure they are fun to play but to some online...it really ticks people off to no end! Getting a game request or seeing that you played a game in their news feeds really pi$$es some off...even though it doesn't bother me but heres an idea that is directed to those that are about to do the deleting or banishing because of this...there is a little hidden "x" in the upper right hand of the post that is bugging you like nails on a chalkboard...HIT IT...it will tell you to hide all said game updates. There is also a "hide game app" area in the privacy section...or is it the acct. section? Presto...problem solved! No need to delete a friend who enjoys a game or two in their spare time.

3) Here's a biggie for me. Because I tend to tell my whole life story online...if you couldn't tell...I have found that friends and even (believe it or not) family don't care about your bad luck, your PMS moments or anything negative.
Since I am guilty for all of these types of posts, I know that these are one of the main reasons why most of my 700+ friends don't comment very often. In defense to myself, I have FB to connect with people especially those close to me. To keep them updated on my crazy life of tons of kids and my beautiful special needs/chronically ill son. This is MY life. The day in and day out, continuous worrying about one thing or another. It's about weekly hospital visits, being up all night (and I don't even have a newborn), feeding issues, medicines, etc. I don't have the easiest life so If those friends and family can't handle the updated posts on any of these things, they are living in a fantasy world where everything in life is perfect. God forbid you ruin their day/life by posting your unfortunates.

4). Not posting anything at all...ever. Like you don't even exist. This one is pretty much self-explanatory. Not ever posting will get you deleted...if you aren't on FB, your taking up space.

5). Guilty by association. Again...this one is another self-explanatory. If you are friends with someone with whom another friend got into a written war with on FB or someone dissed someone in real life...a divorce, a family squabble, or anything else...you WILL get deleted...eventually. Sometimes you will only be friends for a short time just to get information from...but believe me, deletion is on it's way.

I'm sure there is much more...but I wanted to cover some of the things that I've experienced. Now here are some ideas for the deleters...yes, you mean people that are making those you have deleted wonder and contemplate their own self worth and life...

1). you don't delete family...it's the biggest no-no ever! It will only bring things out in real life...at a party, a holiday or whatever. To be deleted as a friend while others in the family are still friends only will cause must sadness and misunderstanding. It's like deleting a friendship that you share in real life. Please rethink this. This one is very critical for everyone involved...especially if it was just some miscommunication...which is more likely what caused this in the first place.

2). If you don't like a post or feel strongly against the issue at hand...DONT respond...just keep scrolling past it. This way no one will get their feelings and emotions in a twist.

3). If you are drunk, depressed, arguing with a spouse, or suffering from PMS, it's better to stay off Facebook for a while...period! These moments in life tend to bring out the worst in one and you are apt to comment or post just to start with someone. It's almost like cyber road rage.

And to those who take a Facebook break by deactivating you account....good for you. I've done it and it is a sort of refreshing and needed break every-so-often. When you feel that life is getting out of hand. When you are at a low in your life and all you are seeing is good fortune in other posters...which makes you want to jump off a bridge, do yourself a favor and deactivate for a couple of days. no need for deletion of people. You will be hidden from everyone while you are off...no one will be able to see you even exist until you return with a better outlook.

I just want to close by saying that Facebook has been a huge blessing in my life. I've been able to share my life with so many people. I have a great support system for my life as a mom of a chronically ill/special needs son. My life is not perfect...by far and it is one of the ways I find comfort, support and inspiration from friends and family. It has picked me up when I was down. It has helped me share many triumphs and celebrations, and it has allowed me to enjoy a laugh or two, many memories and events. On my friends list, I have conservatives, liberals, straight, gay, ex-boyfriends, whites, blacks, and every color in between. I have many that don't live in the states, some rich, some poor, Catholics, Christians, Baptists, Jews, Atheists...and many more differences.
So before you decide to delete a friend, please remember we all are human and behind those words, ideas, opinions and deletions...we all have feelings!

Happy Parents Of Preemie Day!

Today, I am recognizing the courage and commitment it takes to stay strong and resilient when premature birth turns a family's world upside down. Not just at birth...but for years following!

I am a mom to 8 preemies. I am proud to say I made it through short and long nicu stays, monitors, oxygen, scary moments and monumental moments. I made it through bringing my babies home after having to leave them at the hospital for one thing or another, and I Also made it through leaving the hospital without my beautiful angel.

The road has been rough and I would of much rather of taken the easy road but that was not chosen for me...for us. Our first child (who is now 14 by the way), we went through my water breaking at 29 weeks and spending 5 weeks on bed rest...with me not really knowing or being scared about it...and I delivered a healthy but small 4.8 pounder. Our second was born at 35 weeks but spent a month in the nicu for apnea episodes. Our third was a 34 weeker but pretty big, weighing in at 6 lbs. She only had to stay for feeding issues. Sydnie and Kayleigh were both 34 weekers and even though they are 2.5 years apart they both had true knots in each of their cords...so for that, I am grateful that they both decided to come early because they could have had a cord accident in which they could have been stillborn.

Then you get to my twins...the two that changed our lives in very different ways...born at 23 weeks...a whole 17 weeks early! They taught us how to face challenges of chronic illnesses and special needs. How to deal with a death of a child and the grief that follows it...all the while still "swimming" for the sake of the surviving twin the even years later is struggling daily, the other beautiful kids at home that had to deal with losing a brother and having the other sick constantly dealing with the special needs that he has...and finally for our marriage...because no one talks about the stress that loss and sickness can wreck havoc on a marriage. We are stronger, grew closer because of it!
I used to think that my oldest son was small...but to see two 1.7 pound babies being taken from my safe and protective womb is just...scary and heartbreaking.
Finally we have our Gina. Our longest term baby at 36 weeks...just a true blessing to us all. No hospital stays or issues...and loves to be "best buddies" (as she says) to her brother, Kenny.

There were/are times when I want to wake up from the nightmare of having preemies (mostly micro preemies), but know that it is our reality...our life. A different life than what most would want. A life that has taught me that money isn't everything...family and friends are...the people that you meet in your lifetime are. Decorating your child's cemetery plot and praying that the extra plot next to him won't ever have to be used is. The experiences, good and bad are important. Watching your child who was so small play a sport, sing a song or try to tell you what he wants when he can't talk is. Doing things for others are. Understanding and forgiving is and so are A hug, a deep stare and an I love you!

Happy Parents of Preemies Day to all those parents who have ever had a preemie. May God bless you all!

a Lenten sacrifice and Kenny update..

So I made it through week 4 of my Lenten sacrifice of giving rather than giving up...I've been making cupcakes and bakery for our church/ptu fish fry that we have every Friday! Tony, the kids and I make it our mission to help and have fun doing it!
I find it very relaxing and it's a time where I can be me rather than a mom, caregiver to a very demanding Child, where I can escape in my own little world that I call...the kitchen! Sure, the laundry has paid for it as it sits piling up until I can get to putting it away...but theres a time for everything! heck, the older kids are old enough to be doing laundry as a chore...Iay just go on strike ;)
last week was a week of doctor appts that were supposed to be routine.they ended up doing an EKG on Kenny and getting several vials of blood from him. From what his doctor said to me, she felt that he just didn't look right and all of the glands in his neck all he way down to his collarbone were swollen. I know it's not that much if a deal in normal healthy kids, but it's always something more with Kenny. We wont find out the blood test results until Monday or Tuesday. His EKG came back as showing an arrhythmia of some sort. his doctor has been so great in going with her gut instinct on issues with Kenny. She is consulting a cartiologist at the finding. OK...at this point my mind is racing and I just don't know what to think! I got home and called his genetics specialist who, way back when, made comment that the long arm of chomosome 17p13 was slightly longer. Stupid me goes and googles this...most of anything that deals with chromosome 17 involves cancer! I metioned this to his doc and really got no anwers other than the fact that this abnormality could not be nothing at all...it could be just his makeup. so basically I am running around like a chicken without a head not knowing what is going on with my son. His neurologist, 6 months ago told me that everything he's dealing with is due to extreme prematurity and not many 23 weekers survive, so they don't really know the full effects on them as they get older. So yeah, Kenny is now a test guinea pig for the medical field. Just last week, I was told by the same doctor that my son definitely has some sort of syndrome. WHAT???!
how dare they lable a child by his looks and actions when they don't even know of the reprocussions of being born at 23 weeks?!
So now, on top of his developmental delay (mild mental retardation), hearing loss, eye issues, chronic lung disease, epilepsy, feeding issues/tube, being non verbal, having low muscle tone and having some autistic issues...I now have to worry about heart issues and possibly cancer down the line. How much more can a mommy take? I look at his beautiful smile, his love of life and his ability to make friends even without having to say anything to them, and I wonder why! He has a perfect little soul who doesn't deserve to have anything bad happen to him!
If there is anything that this whole "being a mommy to a special needs child" brings to me is...well a major amount of stress...but more importantly, never take a moment in time for granted. I can't change what will be, but I will be there fighting and loving Kenny and the rest of my beautiful kids and hubby!