Friday, April 27, 2012

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 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...

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 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.

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 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!

Thursday, April 12, 2012

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 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 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.

Wednesday, April 4, 2012

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 "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 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 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 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 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!