May God bless and keep you safe...

I used to think that I was so lucky that I never knew, experienced or witnessed a child that has died. I actually remember a conversation with my mom when I was a teenager. It went something along the lines of me asking my mom if we ever had any child die in our family. My mom told me that the only one she remembers hearing about was that of my grandpa Kowalczyk. His little sister was burned from a fire and died from her injuries...but that was about it (now I know why I have such a fear of campfires, grills, bonfires, etc...with kids)

That our family was extremely lucky that we never had to experience the loss of a child. Then...my brother passed away unexpectedly at age 24...I saw how devastated my parents were. I remember the long drive home from Bowling Green, we were visiting the college to see if we (my twin and I) wanted to go there. There is where they they were told he had died...yeah...way back then we didn't have cell phones. A police officer had to stop us and bring us back to the station where my sister was calling and told my parents. The look on their faces...the look of raw sadness...they just lost their only son. It was the worst day of every ones life. That day, our family was changed forever.

Fast forward to today. I never thought that I would be feeling the same exact feeling that my parents felt years back. The dispair, the sick, empty and lost feeling of losing your child.

Since losing Nick (along with several miscarriages) I have witnessed more and more sickness and death of children then I care for. I had to take a leave of absence from my roll as volunteer at the Hospice because of Kenny and his needs, but other than that...it seems like there are so many families that have lost a child in one way or another. I am so sad for the ones that are just starting on the journey of a life without their child and grateful to those who have been through it for quite some time and have helped me through tough times.

Yesterday a woman I met through another friend who lost her son, has started her journey. She and her husband lost their beautiful six year old (same age as my Kayleigh) daughter, Ainsley. She went in for surgery and all I know is that she passed away after her surgery. She had MITO, the same thing that claimed the life of my other dear friends son. This was very unexpected and such a shock to me. Here you have this beautiful little girl fighting for her life every day. Showing courage and just living life....you have her mom who is such a strong woman who does so much for the MITO community and for her daughter and for her friends....and now she is gone. Sometimes I just don't understand how life can be so cruel. I mean, we are NOT supposed to have to be a caregiver for a sick child let alone have to bury that child. It just is so...final. I know that life has no rules. You are to live it to the fullest because you never know...but as I get older, I am finding that I am not really liking this whole "getting old" thing. There is too much sadness and uncertainty...not to mention, the superficial aspect of it...the lines in the face, the grey hair starting, the weight that you have to work just a little harder to get rid of...

I find myself looking at everything with a little hesitation. I worry about the little things and big things. I guess my anxiety is getting the best of me...but after seeing so much sadness, sickness and death, who wouldn't.

I also find myself with much more compassion for those who are facing such as what I said above. I can relate...I may not have the right words to say to them at times, but I do understand the stress from taking care of a sick child, the not knowing what is to come, and the feelings you have when you lose a child. I don't care if it has been from a miscarriage, stillbirth, newborn or child....it hurts and digs down deep no matter what.

So today I am dedicating to all my friends who have a chronically ill child and to those who have lost their precious child. May we find strength to carry on and make it through the tough days. Love in our hearts for ourselves and for others that we know we did/are doing all we can for our babies...that we don't get into such a dark place where we cant function...because that is NOT what our little ones (who are here and who are angels) would want or need. And faith, that there is a reason that only God knows, why our babies are sick and fighting a tough life and for those who have lost their little ones, that our angels are in a safe, beautiful place and that we WILL see them again (yeah...sometimes I need reassurance of this).

God bless.

Give a kid a camera...

I was in the kitchen washing dishes...yeah...long story short...the dishwasher broke, I thought I fixed it but it is still not washing...so washing by hand is better than by machine.

Anyhow...so as I am washing the dishes, I hear Kenny and Gina laughing like crazy in the living room. I thought that they were just playing with their toys. I walked in there, and I find Gina taking pictures of Kenny. Telling him that he was posing good and that one was a good picture!

I thought I'd find pictures like these...

 and then I came across these on the camera...

I think I have a photographer in the making...and a little male model

(notice the tie Gina put on him) haha!

A celebration worth remembering

Over the weekend, I figured out what makes Kenny open up and finally be a normal child...DOGS!

My sister brought her dogs to the Communion/Birthday party we had for my great nephew and Kenny...he was a very happy little boy! I saw something that I never saw before, he didn't care about his shoes not being on, he wasn't in his own little world...he was communicating with the animals. He smiled, talked and walked the animals...he was having so much fun!

Kenny walked the dog everywhere...and was so proud!

  We sang Happy Birthday...

 

 The way he looks at me...

 Melts my heart!

He's come such a long way...

From the NICU

 ...and when it was time for him to blow out the candle...

I just knew Nick was with us...

The wind blew out the candle, but I felt that it was Nick who blew it out!

Nicks angelversary

Notice the chapter and verse...todays date...Nicks Angelversary

It seems like five years was a lifetime ago...but the pain is as strong as yesterday.

Seeing him in the NICU and telling the nurses to keep an eye on him because I didn't like the way he looked. Walking back to my room and then the nurse came in and told me that there was a problem with him. She already called Tony to come down to the hospital. I cried so hard. Rushing back into the NICU seeing the doctors and nurses working on him. Ordering blood transfusion after blood transfusion. Sitting in chairs 20 ft away, unable to do anything but watch and pray. I wanted to throw up, cry, run out of there...anything to not face what was happening. the nurses handing me tissues and water. Just sitting there with Tony. It was three hours...three hours, maybe even longer. I knew in my heart that God wanted him to come home. I just knew it. But I just couldn't believe that my worst nightmare was happening. HOW could it be happening? When the doctors told us that there was nothing more they could do, we cried and cried. He was still alive, do something...anything...dont let my baby die!!!!

They handed him to me to hold for the first time. I held him. I was finally holding my baby. He was so little, so light, like holding a doll. But he was real. He was alive right now. He was our baby. Our baby that was leaving us. I looked and studied his face so I wouldn't forget any detail about our little Nick. The way he smelled, the cute little chin that looked just like Kennys, the perfect blond hair...I kissed him and kissed him. He was still alive....cant someone do something...anything. Don't let him die. I held his face against my face telling him it was alright. Uncle John was waiting for you with open arms. He needed a nephew, a baby up there to hold since he's missed out on all his kids growing up and all his nieces and nephews...and his own grandchildren. Nick was going to finally meet Uncle John. I told him that it was alright...mommy and daddy would be alright. Watch over us, your brothers and sisters, your twin. How could this be happening. It wasn't supposed to turn out like this. I wanted your brother and sisters to meet you, they were so excited. They never got the chance to see you.

I didn't even get the chance to hold my twins together, to get a picture of my twins together...the nurses then asked if I wanted pictures of my twins together...yes...God yes...but not like this. I wanted to be holding both babies, pink and fat, bundled up with little hats on their heads...crying and wanting to eat. I wanted pictures of them together playing, sleeping, the first day of school together...all the firsts...together. Not like this. It wasn't fair. My cheeks were red, from so much tears and wiping...I just wanted this day to have not happened...but it did. I miss you Nick with all my heart and soul. When you died, a part of me went with you. I wanted you to be part of our big, crazy family. You made me realize that life is a very special gift. I just wish that we had more time to spend together...but isn't that always the case. I at least got to tell you that I loved you very very much and I know you put up a fight to live...but now you are watching over your twin and helping him get through each day. Its hard, its very, very hard. A parent should never have to bury a child.

I miss you my angel...I miss you.

A few poems that I wrote on how I'm feeling today...

When You Lose A Child

http://mtomecko.blogspot.com/2011/04/when-you-lose-child.html

I Visited You Today

http://mtomecko.blogspot.com/2010/09/i-visited-you-today.html

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!