Monday, April 25, 2011

Busy start to spring

Easter came up so quickly that I barely had time to prepare for it! For the past 7 weeks (Lent), I have made cupcakes (250+ each week) to sell at the bake sale at the school (that the kids go to) fish fry. Every Wednesday, I'd go and get all the stuff I needed to make the many different kinds of cupcakes/muffins. Thursdays were my baking days and Fridays were my frosting and decorating mornings...then delivered them when we (or my husband...depending on if Kenny was sick) went to work at the fish fry.

(These are double chocolate with a chocolate mousse filling) yellow funfetti type cupcakes with buttercream and strawberry frosting...

This was one weeks velvet, cheesecake, apple/banana, funfetti type and chocolate brownie with truffle topping... Mini cheesecakes (from scratch)...
Apple/banana with crumb & buttercream topping (yes...all from scratch)

So this weeks was the first week that I didn't have to make them. It felt like something was missing from my daily routine...but instead, I worked on t-shirts for the March of Dimes walk that was this past Sunday! Here is the t-shirt design which I transferred onto t-shirts...The back was this...

And here is the invitation that I made for Kenny's (and Nicks r.i.p.) 4th birthday party (notice the angel ;)...

Kenny's birthday party is also on the same day as Sydnie's (my 7 yr. old) Communion. I figured lets kill 2 birds with one stone (so to speak)!

We are getting ready for Sydnie's First Holy Communion (and party) Saturday. She has been so excited about this big day, that she is even telling everyone that instead of money, she would like a bible, books on saints and stuff along those lines. Yes, leave it to my Sydnie, the one who got all of the smarts in the math department. She loves to just sit and figure out math problems for the fun of it...along with reading. She will be an amazing adult with intelligence and compassion...along with a great religious belief! She will be reading a petition (in the catholic church...petitions are read to pray for different people and situations.) so she has been practicing her readings...well...heehee...religiously.

So needless to say, I've been cleaning like mad (this type of cleaning is more deep involves scrubbing walls, fixing up the house...that kind of stuff). With a house full of kids who loves to just throw their stuff wherever and whenever they want...its been a task. One that I am losing the battle on. So most of this "cleaning" will have to be done either on Thursday evening or Friday...along with the cooking and baking! Yes...I am attempting to bake cupcakes.

Not only are we celebrating Syd's Communion...we are also celebrating Kenny's 4th birthday! So this should be a very nice family get-together!

Here is the headpiece I made for her...

Sunday, April 17, 2011

M.O.D. local Kmart ambassador...

What a busy yet very fun, morning we had yesterday morning! We went to our first of 3 Kmart stores (store #3278 in Garfield Heights) to meet and greet the employees and thank them for their work in helping with the March of Dimes. Kmart is, as some of you might know, one of the biggest national sponsors for the March Of Dimes and has been partners with them for 28 years!

Kenny is the local ambassador to 3 Kmart stores. We went to one on Saturday, went to one today...and tomorrow we will be going to the third one.

I have to say that the people that we have met are wonderful. They let us tell our story of Kenny and Nick, took pictures and just had a really nice time.

Of course I made cupcakes...lots and lots of cupcakes...between Saturday and today (Sunday) over a hundred...all decorated in honor of the March of Dimes...Here is Kenny and the poster that we made for Sundays store (Seven Hills #3013). We added a written thing to it along with many pictures of Kenny...including his hand and foot print copied at actual birth size. I am glad that we wrote out his/their story because their store was pretty busy and we didn't get the opportunity to talk to the employees...but that's alright, they were really sweet about everything!Tomorrow is the Bainbridge store (#8792)...I'll be posting more pics tomorrow. Anyways...we are honored that Kenny was chosen and we greatly appreciate all the employees of all the Kmart stores for their dedication in helping the March of Dimes. Without the March of Dimes, Kenny would not be here today!

And finally...after a long day, Kenny and Gina needed a nice relaxing bath and came down stairs to surprise me looking like this....* awwwwe moment*!

Tuesday, April 12, 2011

Monday, April 11, 2011

When you lose a child....

When you lose a child, it's like an out of body experience... your whole life changes. You pray, pray, pray that it's not happening. You beg, plead, cry, scream and go numb...then when you think you're done, you start all over again. Its everyone's worst nightmare...but it's happens. I've always wondered why us? Why did this "nightmare" happen to us? Were we just randomly picked by God...kind of like the lottery of heaven? Were we chosen because God wanted us...needed know something? I honestly couldn't say. When you lose a child, no one wants to talk about it after it happens. It's almost like, if others mention the dreaded D-word that it will bring up sadness and reminders...when in fact people don't understand that everyday is a reminder after losing a child. Everyday! Even 4 years later...there is sadness and reminders. Sure, you think you are doing just fine. You are finally feeling again, and then BAM...out of the blue, you get sucker punched....and the hurting hits hard. When you lose a child to prematurity...let me start over on this...When you have a pregnancy that, from the start, is threatened, those months of doing everything in a mothers power to protect that baby...those babies in my case...becomes first and foremost in life. They(doctors) call it "a threatened miscarriage...or abortion". But wait, I WANT this/these babies, it can't be an abortion! But nonetheless, that's what the medical term is. So you plan on weeks...even months of bed rest...anything to ensure the health of this/these babies. Then the dreaded day, months too early. You beg, you plead, you make deals with God to let them be alright...and then you go numb. Then the "out of body" thing I was talking about above kicks in....and then...then your looking at a whole new life, a new you.

In the NICU you see your baby/babies and you wonder how could something so small survive. You don't get to hold your baby like a mom is supposed to be doing...instead, you are looking at them through an incubator. An incubator with tubes and wires. There is machines for everything...including a machine breathing for your child. How can this be? Why did this have to happen. You prepare for everything...yet nothing seems to prepare you for this. There are going to be hurdles and obstacles to overcome...words you've never heard of, phrases that are like a different language. Infections, operations...this and much to take in, yet you have are now on the roller coaster that they call the NICU.

Then for us, the worst happened. The doctors tell you that they cant do anymore. Then you beg, plead, scream, cry and then go numb...we lost our child.

We heard it all after that..."well, at least you still have one." Or, "God has a plan for happened for a reason." Even after four years it is still being said. Sure...I have made this nightmare that we have faced into something positive because I dont/didnt want my son to have passed away without any meaning. I have turned Nicks death, our loss, Kenny's disabilities and chronic illness into helping others. I have put up a brave front and forged on...for my sake and for the beautiful lives of Kenny and Nick...but I just sometimes get sucker punched...out of the blue.

This time of year hits me hard, and to have wanted twin pregnancy, my twins to live so much...even after a chance of a miscarriage at 7 weeks...even after bleeding at 15 weeks and even after bed rest at 21 weeks...I tried my best...and it just wasnt good enough. Still feeling mommy guilt after 4 years. Then to be around people (family)pregnant with or who have twins...and to top it it off like I was never pregnant with twins...hits hard. DARN IT....I am a mommy to twins...just now, I have one on earth and one in heaven! I know what it felt like to feel 2 babies inside kicking and moving. I know the feeling of looking at not one baby I gave birth to, but two babies. I HAD TWINS. Its not fair, its not what I wanted....this nightmare...these feelings are not what I want, yet I have to live with for the rest of my life.

And to top it off, not only do I have to deal with that, but the fact that my son is not like other kids his age. I get to experience a whole other "bigger experience" of having my son looked at by other kids and asked whats wrong with him. I get to see how far behind developmentally he is to others. How he cant talk. How he gets frustrated with things. How he acts differently than other kids. I get to go into panic attacks every time he gets sick. I get to go on "house arrest" with him for fear of him being around people and getting sick. I get to get that sick feeling of begging, pleading, screaming, crying and going numb with him when there is a new problem or just thinking about the future. Sometimes I think that it would have been easier if I would have lost the pregnancy early on (like I thought I did) to miscarriage....but God never promised an easy life. I will never stop missing my Nick. He was alive. He was real. But as the days and years go on...the memory of the way he smelled and looked are slightly fading...which makes me sad. I remember holding him and smelling him and telling him that I'd never forget him...

Every day there is something that reminds me of him...and that something is Kenny. At the same time, my heart breaks for him too. I don't want him to grow up different from others...yet I know he will. I don't want him to die early...yet I know that is a real possibility...and I am scared and sad (there, I said it).

When you lose a child, it hurts.

Tuesday, April 5, 2011

The last couple of weeks....

Talk about things happening all at once. There has been way too many deaths of friends and acquaintances. Its kind of bringing us down a notch and facing our own mortality.

Saturday we were getting ready to go to a memorial for a wonderful teacher of mine...yes, some 20+ years ago...but that is how much of an impact he made in my life. He was the choral director of the Girls Glee Club and Men's Chorus...and together...we were...The Heights Singers. When I was in it, I had the honor of being Art Chairperson. Basically it was my very first job...and he was my boss. He taught tough love....oh boy did he...if you talked during rehearsal, you'd either get a glare or he'd stop everything...embarrassed the s*** out of you and make you go out in the hallway. But he was also very dedicated to all of us. He was like a second dad while in the throws of high school...with all the problems that come from age 15-18. We'd have 2 concerts a year...maybe a musical...and tour (we went to Ottawa Canada, Boston, and...oh, old age showed up. I cant think of the third place we went during the 3 years I was in it)during Spring break. It wasn't even a thought that we wouldn't be in "The Heights Singers", because all of my older siblings were in it while they were in was only natural that my twin sister and I would follow in their footsteps. It was something that we grew up knowing and wanting. Going to their concerts and can one man direct 150-200+ people to sing perfectly together...and also do some dance was much more than a regular high school choral was magic that they created! See, The Heights Singers were so important in my life, that my entire high school years were all about Singers...all my friends were in with today's technology, I reconnected with most of them...LOVE IT! So after hearing of his passing on Facebook, I just knew that I was going to be there to let him and his family know how important he was in my life. I knew I wanted to bring my kids to see how important...even after all these years...a teacher could be. So with that...we all went...and it was beautiful. There were so many people there. Many of which were his students...he directed for 30 years...that's 30 years of 200+ kids! Those that could make it were there...and what we did was perfect for Mr. Thomas. At the end of each spring concert, we'd all sing Let It Be running out into the audience and he'd ask all of the alumni to please stand with the Singers and sing with there you'd have an entire auditorium circled with singers, old and new, singing this song that grew on each and every one of us. It had meaning to all of us...and after all these still has meaning. Thank you Mr. Thomas for everything you have taught me. For the most wonderful (and some not so) memories of my high school years. I strongly feel that without Mr. Thomas and the Heights Singers, I wouldn't be who I am today. He/they were high school for me. I can only hope that Mr. Thomas was watching and that he understood what an impact he had on thousands of kids that he taught. The memorial was such an uplifting that honored and celebrated the life of a man...not his death.

Here is Mr. Thomas and the Heights Singers...singing this song in 1974 (I think) , with a whole scrapbook type look back at 30 years of his devotion to all of us students!

So, as we were getting ready for that, my husband got a call from a friend/coworker that his friend/mentor passed away. WHAT?! Can this really be happening?! This man was the nicest, most sincere person we know. He helped us out when we needed help (the dryer), he and his wife would come over around Christmas and give the kids presents. And he was just such a great friend and mentor to my husband. My husband feels so bad because he was going to call him and ask him to lunch...and never had the chance. He was very special to us and will be deeply missed.

So this week, we will be saying goodbye to him as well.

And the week before that, my husbands other friend died from pancreatic age 46. Last month, another friend passed...he was older gentleman who lived a long and fulfilling life...but still...he too was a good friend and one that would be there for you if you needed something.

My heart is heavy with all of these passings, illnesses and bad news. I know in my heart that they are watching over all of us and one day, we'll see each other again but in the meantime...they had all better be looking after our Nick up there, in Heaven, and keeping an eye on everyone that misses them. We need to celebrate the lives of those we lost. We need to live each life to the fullest....helping those we can help, talking and listening to those that need a friend...go beyond and out of your way to make others happy...because you just never know when your last breath on this earth will be...when the Lord will call you Home.

I feel that all of these trials are really making me closer to God...with just that much more understanding towards what really matters in life. Family, friends, love, laughter, helping others, following your passions and showing compassion and understanding....

We will forever miss you all that have passed away...thank you for the great memories and friendships!

God is amazing and will never leave us.

Sunday, April 3, 2011

Released from the hospital...5 loooong days

Finally getting a chance to catch up on what all has been going on with our Kenny. On Wednesday, he finally got discharged from the hospital. It was a long 5 days in there. My motherly instinct was right...get him in there...We found out that he had RSV.

(these pictures were after his fever broke)Friday and Saturday nights were bad. His oxygen sats were in the mid 80's. We tried putting a nasal cannula on him (for oxygen), but he wanted no part of that. He ripped it off of him quicker than we could get it on him! So...what did we end up doing? Well, while he slept, we made sure he had a blow by blowing in his face. It helped him so much...but it also kept me up all night with him. The minute I heard his alarm go off, there I was, putting the oxygen by his face. Then we got the usual crazy stuff happen while there...bloody nose from too much suction (cleaning snots), the usual...pulling out the tubing from the IV. Oh...and let me tell you...they got a great vein, those nurses. The one night, he pulled out his IV, so we (the nurses) had to put a new one in...then, on Sunday, he decided to pull the tubing out...blood everywhere...and lots of it! And there you have me holding and applying pressure to the IV site so the blood would stop pouring out...the needle was still in...he just pulled the tube out! And then, finally, you have the puke and the occasional G-tube leak. All in was a pretty uneventful stay...hahaha! His temperature broke the second night (thank goodness), and the cough and boogers are still going strong.

A huge shout out to my niece and sisters. Thank you for helping us out so I could be at the hospital with him. He really hates being left alone there I HATE leaving him there..alone. breaks my heart! The nurses and child life were wonderful...with letting him play with toys and keeping him company. By day 4, he was feeling much better (minus the continuous snot supply in his nose) and was back to lining up his cars and blocks.

He also found a new use for those tubs that they use for sponge baths...a hat!We also found out a little bit more of what we are dealing with with him. I honestly thought it was just going to be a "oh, he's just a micro preemie." comment...and really wish it was that...but instead, we ended up getting so much more. I will update when I talk to his neurologist and Comp. Care doctor next week. I want to make sure I understand everything that they have found. There was mention of Microcephaly (which we already knew), a cyst and a small cerebellum, along with him needing hemoglobin transfusions (his body isn't absorbing vaccines and his red blood cell count is low)...but like I said, I'll post more when I know all the details.

I am just very grateful that he's home and back to his old self...minus some coughing. His smile brightens up my world!