Tuesday, October 28, 2014

Reflections of life

Have you ever wondered how someone would explain your life to someone else? Did you do all you could? Was it good? Could you have changed circumstances? Would it come out boring or much to much to be true?
I could only hope that I give as much help, hope and information to those that are facing issues that I have dealt with these last 8 years.

So how would it start?
A person who grew up in a very traditional household. Her dad was a mailman and her mom worked in an office. she grew up with 5 sisters (one being an identical twin) and one brother.
In elementary school, she was not popular...at all...actually, she and her twin were picked on continuously. It was through sheer...well, not giving a crud about what others thought and the fact that they had each other...they both made it through.
Teenage years were rough...at age 17, she lost her only brother. There were many issues happening in the house at that time...so it was rough for the whole family. She made it through along with everyone else in the family...and she pretty much had many nieces and nephews whom she didn't want to admit, but were more like little sisters and brothers to her. She really loved them...but being a teen...well...the moodiness got the best of her!
There were boyfriends whom she really cared about, even years later...but one just stole her heart...
A twin himself, an artist who came from a big family with very similar values.
She was very hesitant about starting a family, never wanting kids, this 20-something had a selfish, artsy way about her. She loved to dance at clubs...but rarely needed to drink. Was an animal lover to the extent. She'd take in anything (in which some were a little crazy...Leo the squirrel, a baby raccoon, and many birds...not to mention dogs and cats...but that's further down the road).
 A head on car accident put a lot of her dreams on hold...and it caused severe pain for years. Not sure what direction her life would take her, she teetered on a degree in art with that of assistant, managing a small but exciting bridal store downtown. Making headpieces, ordering gowns and loving life....after a crazy 7 years, the two married and soon after, came their first son. It was a crazy pregnancy which included getting 3rd degree burns from her dog accidently spilling hot tea on her...then a month later, her water breaking at 29 weeks....only to be on bed rest in the hospital for 5 weeks. Unsure of what was really happening, she did everything to keep the child that she was in love with, inside of her until it was safe for him to be born...and that is when her whole idea of life changed. She knew at that point that she would welcome as many children as God would bless her with.
She had baby after baby...every 2-3 years apart, all at 34-35 weeks gestation. Each one, was a blessing and happy time. There were NICU stays for feeding issues, hospital stays for lung issues and monitors for apnea.
She had a passion for holidays and family get-togethers. The first time she made a Thanksgiving turkey, she almost threw up from trying to clean it out, but it turned out to be a tradition and funny thing to look back on. Birthday parties for the kids were always planned with family in mind. She wanted to be the house where family would gather, grow and make memories for generations! She loved her parents and admired the way they worked together and made their marriage work...even through many rough patches.
When the third child came, she and her husband decided it was time that she stay home and raise the kids while her husbands sign business, he started a few years prior, could take off.
She put her everything into her family. Making family dinners every night, doing the laundry, cleaning, landscaping...she was having fun with the kids. Their house was getting smaller as their family was getting bigger but that didn't matter too much.
They rarely went on vacations but they did do fun things. Hiking in the creeks, pools, and an occasional trip to Alabama to visit her twin whom moved away after her first child was born. She had such a hard time with her other half moving away that she felt a little abandoned. She soon realized that it was ok and actually a fun place to visit!
After her fourth child, she and her husband suffered a miscarriage which she was so distraught over. A few months later, she got pregnant with another child, a daughter. Everything went perfect except she needed her first C-section. about 4 months later, she suffered another miscarriage...
Needless to say, these miscarriages broke her...but she seemed to bounce back, she had to. For herself, her husband and her kids sake...she did. A few months later...while putting up the Christmas tree before Thanksgiving, her daughter told asked her...If you had twin boys, what would you name them? She laughed and said, well, there would be no way I could have twins because of the heart shaped uterus...so the docs said I couldn't and wouldn't have twins...and she fluffed it off.
Then, on Thanksgiving she was very moody and decided to take a pregnancy test. It was positive! The rollercoaster just went nuts from that point on! Due to bleeding early on in the pregnancy, they found out she was indeed pregnant with twins! Having a rough time keeping this pregnancy, she was an emotional wreck. She so badly wanted those babies and did everything to keep them safe. Sadly, she couldn't do enough and she had them at 23 weeks. Thinking nothing bad could happen, she let her guard down...and so...her one son passed away in her arms.
From wanting to die with her son, to wanting to give everything to help her surviving twin, she was in survival mode. The days turned into weeks into months and finally this blog was born. It was a way for her to cope with being torn from taking care of her surviving son to trying to care for the five other kids. While still in the NICU, she was pregnant for yet another time...this time, a perfect pregnancy...36 weeks and another little girl! Still feeling a loss in her heart, but finally a happy event to override a tragedy.
She poured her heart into taking care of their special needs/medically fragile surviving twin. Learning how to work oxygen tanks, heart monitors, change g-tubes, and then...having to deal with seizures, many hospital stays, therapies and diagnosis's and the "what ifs" that were becoming a very real part of their lives.
Since her last child, she experienced at least 10 more miscarriages and finally came to terms with her own fertility and age. She and her husband worked feverishly in getting a bigger home that they so desperately needed...now that they had 7 living children...of which a few were all ready in teen mode.
All the hard work paid off. but now the harder work takes over. Dealing with the throws of teens, not wanting to let go of her kids childhoods, yet excited to see what THEIR lives will be like...all the while still caring for a sick little boy. Her life was crazy at this point. Losing a few good friends, she had a hard time with life.  Questioning many things...Where was she going? Who was she beyond a mom/wife? Did she ruin her kids for having so many? Was she doing enough for them...or...too much? Could she have been a better mom/wife? All questions she asked daily. She had a hard time letting her kids grow and become young adults because of having to "let go" of her brother and her own son. How could she protect them from all the sadness and struggles she had to go through. She loved them so very much! She was afraid to look even a day into the future because of what she was afraid might be there. So very afraid to lose another child or person in her life, she was scared but very determined to shine through all the dark. She didn't want to be defined as just a mom, a caregiver or grieving mom. She wanted to shine bright with all her talents God has graces her with and to keep family together.
So goes the short version of my life. I can only hope that my kids love me as much as I love them, that they become amazing adults with amazing life tales to pass onto their kids!
 I guess in my life, I could actually write a novel...shoot, maybe a trilogy! I have Maybe I should rename this blog The Tomecko Trilogy!

Monday, October 27, 2014

More of Halloween 2014

On top of decorating the house for Halloween....the younger kids were able to "test drive" their costumes a few days early. I found that Kenny wont wear pretty much his entire vampire costume...including makeup, Gina needs a bigger shirt to be a Ninja Turtle, and that the face makeup used on Kayleigh causes her eyes to burn horribly!
  Our church had a very nice little afternoon get-together of families to celebrate the holiday...TRICK OR TRUNK...or is it Trunk or Treat? Whichever one it is, I have to say...I had more fun decorating our van than an elf working in Santas shop!
 I just love how all the cars were decorated!
 Even though the school was closed this year, I am very thankful that they have kept up with fun activities for those of us families that chose to stay and want to keep the Church and congregation fun, young and exciting!
Happy Fall!

Friday, October 24, 2014

2014 school pictures!

We finally got all the school pictures back for this year:
They grow up so fast. No more babies!

Tuesday, October 21, 2014

The effects of extreme prematurity continue

To start this post off, I have to say that every day we struggle with one thing or another with Kenny but he is and always will be my little superhero. As I've said in previous posts, when the pediatricians look and tell you what COULD happen with your micro preemie...they don't know themselves...for the most part, they are giving you either an extremely horrible outlook (example: vegetative state, never walk, or even death) or they could give it to you sugar coated (oh, he'll catch up by his actual birthdate, he's developmentally DELAYED...but...doesn't that mean...a delay in development...so, he...should catch up. right? In our case, we have a little of both.
But no one told us it would honestly be THIS hard. I mean, I thought we hit that peak of  "preemie issues" that were given in that initial list of things that are told to you. I guess people forgot to mention what happens to a micro preemie when they are no longer babies, toddles, preschoolers...but when they are actually in kindergarten or first grade!
I'm not going to sugar coat this post...its very difficult. There, I said it. Sometimes I wish we weren't in this whole "special needs/medically fragile" nightmare. I love Kenny deeply and we have this extremely close bond, him and I, but sometimes I wish I could go back in time and erase my life. From when I noticed Nick not looking the right color in the NICU (the day he passed) to today. My whole mommy hood was consumed by mourning, worrying, caring for a sick little guy, worrying, hospital stays, mourning, and medical stuff. Where was the time for me to enjoy the other 6 kids (I'm including Gina)? Now that some of our kids are full blown teenagers, I am feeling really guilty that I wasn't their for them more. What these kids had to experience in losing a brother and seeing how sick and close to death Kenny has come numerous times...and even having a brother that is not typical...It robbed them of their childhood innocents, and I'm sad for them. I am sad for the fact that we cant just go to a store or restaurant as a family, because Kenny has meltdowns. I am sad that we cant just pick up and go hiking in the Metroparks because of Kenny. I am sad that we cant have the life we used to have...and even more so, I am sad that Kenny cant experience what the older kids did when they were younger. I hate that when I still look at pregnant women who "just want their baby out anytime after 34 weeks" that I want to shake the stupidity out of them! I hate that I can never look at twins without thinking that I AM STILL A MOMMY OF TWIN BOYS. I carried them, I know what it was like to have a twin pregnancy (even if it was for only 23 weeks).
Every cold, I pray he doesn't end up in the hospital. Every doctor appointment or weird thing that he does and I choose to google it, could send anyone into a post traumatic stress moment. Every time I have to give him a tube feed, medication, change his poopy diaper or have to experience one of his OCD moments...I am thankful he's here, but I also feel so sad, stressed, angry and exhausted by our daily grind and what we have to deal with...
I hope this makes sense...
Anyhow, back to why I am writing this...
We took Kenny to his eye specialist because of his ROP that he developed when in the NICU. Last year, he was given a prescription for bifocals...this year, the bifocals are coming off. Not because they've helped, but because they haven't. His left eye has been going inwards more and more...and well, nothing is working. We are now going back on wearing a patch over his straight eye (the right one) to try to get his left eye to get stronger. He is still to wear his glasses because his eyesight is so poor though. The doctor believes that he will need surgery again, but not just yet. And it wont help his vision, it will specifically be for cosmetic appearances...you know...so the mean kids don't call him the slow kid with stupid crossed eyes. He is still monitoring his nerve damage to see if it is progressing or staying the same, but with this, I am now holding my breath on how his brain and the cerebellar hypoplasia are doing. I'm waiting for the second shoe to drop...so to speak. Is the arachnoid cyst growing? how much will he be able to learn? Why oh why couldn't those stupid neurologists at Metro and the Cleveland Clinic be wrong?! I so badly want them to be wrong with their prognosis...or their lack thereof! Years ago, they told me that he'd only be 1/2 of his age...developmentally. I hate this because, they are pretty close to being right. So, what else will they be right about? I don't want to know...or never want to experience...EVER but chances are, because of extreme prematurity, we will...plus much more...for instance, I also get to be the receiver of the best hugs, mushiest kisses and have my little boy for just that much longer.

Monday, October 20, 2014

teamwork...tag teaming...or just crafty buddies....

This is just an example of how cute Kenny and Gina work together.
Gina LOVES the "Nurdle Turtles" as she calls them. She wants to be one for Halloween along with decorating the pumpkins in the same theme. So, she took it upon herself and at 6, she drew and colored her very own Teenage Mutant Ninja Turtle Jack O Lantern! I must say...she is rather talented in the drawing dept....hmmmm...I wonder where she gets that from? tee hee.
Anyhow, Kenny LOVES stickers, so...He was very proud of himself when he helped decorate Ginas pumpkin!
He even wanted to take it to school to show his teacher his great accomplishment!
I love these kids!!!

A Living Social deal for the holidays

If you are anything like me, you start planning your Holidays...well...now. All these years that have come and gone, I've always used my Pampers Points to get free photo cards from Shutterfly. Well, that is until this year when I finally used up just about all of the needed points to gobble up my yearly tradition of picking out my reward for having a kid, or two...or three in diapers. Nowadays, I just use the wipes considering Kenny gets his diapers through Medicaid.
I'm going through my email and low and behold, I come across one from living social. Hmmm...photo cards. So I went on the website and to my surprise...they have really beautiful cards! So I decided to give it a shot.
Here is the link. If you're looking for a really great deal (I bought 70 cards for $28), order!!! You only have a few days left!

Sunday, October 19, 2014

Hello Fall!

So after a few weeks of kids not being home, prior commitments and colds, we finally got a chance to go to our family fall tradition of Red Wagon Farms for pumpkin picking. The weather was perfect...not to hot, but just enough chill in the air to keep the bees away! We were minus one Tony), because now that he is seventeen, he doesn't want to do things with the family...just wait until one day he misses these family outing. I was really sad that Tony didn't want to go, but I wasn't going to let that ruin it for the younger kids.

 We had a blast! Kenny loved the hay ride into the "haunted" forest.

 Beautiful surroundings to take in on this beautiful day!

 and there I am. A rare pic of me. (thanks Taylor ;) )
 Now THAT'S a spider problem that Terminex probably couldn't even take care of!

 So happy!
 Goofy cousins!
The kids hay bale area is always fun...new this year was the corn kernel pit. yeah....a child with sensory issues went crazy in it...poor Kenny. He stood there in a panic, not sure what to do next. I then had to carry him out f the pit and clean out his shoes while he was making the face for "ew gross, this is disgusting"!
 Anyone for pumpkin checkers?!

Hey, I found Gina! Hi Gina!!!

Time for some family pictures...I'm thinking of drawing in my oldest...haahaa

 We then, of course, picked out our pumpkins! I think I had more of a hard time figuring out which one I wanted than the kids! Do I go for a taller, oval shaped or maybe a shorter but round pumpkin? I just couldn't decide...so I got two!

Another traditional fall day that I absolutely loved! I am very blessed to have been able to experience another beautiful fall in my life!