In May of 2012 Kenny and I welcomed our baby girl, Lucy Grace. Lucy was diagnosed with Spina Bifida when I was 20 weeks pregnant. Like many other families our experience was difficult and painful to talk about in the beginning. I have attempted to document our journey with SB so our family and friends can stay informed. Although we had some serious medical challenges in the first few months, Spina Bifida does not define our daughter or our family. Kenny and I are so lucky to have two kids we adore. This is our life with a 7 yr old and an infant....with an SB twist!

Sunday, January 29, 2012

It's a girl, do you want to keep her?

Friday morning finally came after an agonizing week of waiting. Kenny and I headed over to the specialist for our level 2 ultrasound. After waiting for more than half an hour we were finally escorted into the room. The ultrasound tech was very friendly pointing out femurs, kidneys and hands as she went. Then as nonchalantly as she pointed out the organs she said "I see girl". I actually almost missed it. I said "you think it's a girl?". It's a girl! We are having a girl! I looked over at Kenny to see the biggest smile on his face. The tech continued her scan as the news settled in. She said she had a few more images to capture and then the doctor would be in. I was certain that at any moment she would be telling us our baby girl was fine and we could go home to celebrate. 

As the doctor walked in the ultrasound tech asked him if he had reviewed our images. He said no. She said "I'm thinking "mening" not "myelo". Instantly I realized we were about to receive bad news. A couple minutes later the doctor looked at me and said very matter of factly "this is a classic meningocele". Our daughter has Spina Bifida. Instantly I was overwhelmed. I reached out for Kenny's hand and tried to understand everything they were saying. I heard words like "defect", "spinal cord", "amniocentesis", and "surgery". The doctor pointed out our daughter's defect on the ultrasound. He told us we would need more tests to understand the severity of her condition. He told us there would be other things to consider like having fetal surgery and whether we wanted to continue the pregnancy. We were told the genetic counselor would come speak to us about our options. A few minutes later the doctor and ultrasound tech left the room to give us a few minutes alone.

As the door closed behind them I unraveled. I wrapped my arms around Kenny and cried from deep in my soul. We felt such joy finding out our baby was a girl. Then just minutes later they were telling us she might not ever come home. There really aren't words to describe how devastating that is. By the time the counselor knocked on the door we were in a state of shock. The tears turned to questions but it was difficult to find words to articulate them. We were told the amniocentesis was optional, and not without risk, but we decided to move forward with it to get more answers. The counselor left the room to set up the procedure. At this point we had been in the office for more than three hours. Kenny was so strong. He looked at me and said "please don't cry, we have to be positive". So through glassy, tear filled eyes I said "I'll try".

After about 15 minutes the ultrasound tech led us back to her room. The doctor came in right after us and quickly began prepping for the amnio. I'm glad it was done so quickly because I would have been really nervous if we had to wait for another day. It really wasn't that bad. Certainly not something I'd like to do again, but not nearly as bad as you think it's going to be when you see the size of that needle. At this point we have to wait for the results of the amnio to decide what to do next. So again we wait...

Friday, January 20, 2012

It could be nothing, but...

Yesterday Kenny and I had our much anticipated 20 week ultrasound. We had been counting down the days for weeks hoping to finally know if we were having a boy or a girl.

After a while I began to notice the ultrasound tech acting flustered. She told us we would have to have another scan because the baby's position was preventing her from getting the necessary images. She also was unable to tell us the sex...which seemed like a big deal at the time. After the ultrasound we went across the hall to wait for our checkup. A few minutes later the doctor told us she saw something on the ultrasound. She told us it could be "nothing" but if it's something this is what it is. She then handed me a post-it with the word "Myelomeningocele" on it. She asked if we had any questions. I was blank. It had never really occurred to me that something would be wrong. It wasn't until we got home that I googled the word and realized our baby could have Spina Bifida. In one minute I went from thinking that not knowing the baby's sex was our biggest problem, to wondering if s/he would ever walk. Devastated is not a big enough word for the pain I was feeling.

Our doctor told us to wait for a phone call from the specialist. She told us we would go in for a level two ultrasound ASAP. In my mind I thought they would call any minute and we'd be out the door. No such luck. It was more than 24 hours before the office called. Your appt is Jan. 27th she said. Jan 27th?! It might as well have been Oct. 27th. How can I wait another seven days not knowing if our baby is OK?! Unfortunately we don't get to decide, so we wait...

Wednesday, February 24, 2010

My first paycheck!

I got my first paycheck today! I was so excited I actually took this picture of myself in my little cubicle at work. It feels great! One of the scariest parts of getting divorced was the fact that I had been a stay at home Mom for four years. Trying to find a job that would support a home for Noah and I was incredibly nerve-wracking. Today I feel an incredible sense of accomplishment! 

Monday, January 11, 2010

Me? Oh I work for the State.

I got a job! With the State of New York. That's crazy. Well that part isn't crazy, it's more about what it represents. A full time job has been the last step to moving forward with the divorce and moving forward as a single Mama. The single part I'm OK with. The not seeing my son everyday, not so much. Not only am I not OK with it, it actually takes quite a bit of effort not to become paralyzed by the mere thought of it. After being home with my Goose everyday for almost four years just sending him to preschool in September was a monumental task. Fortunately he LOVES school. I know he is ready, and I know he loves being with all the other kids. I just miss him. I am so lucky I was able to find a 9-5 job that will work with his schedule!

Friday, January 1, 2010

So long 2009, Hello 2010!

"Change is the essence of life. Be willing to surrender what you are for what you could become." ~Unknown

It was a little harder to let go of 2009 then I thought it would be. The new year brings a clean slate that is fresh and exciting, but it is also completely unknown and a bit scary. It is difficult to say goodbye to what was normal, even the things that weren't working. That's why I love this quote. I think all too often we hold onto what is comfortable even when it's not the best thing for us. Daring to let go, to surrender, creates the possibility for so much more.

In 2010 I resolve to surrender to change, surrender to hope, and surrender to possibility.

Friday, August 28, 2009

We all scream for ice cream!

Throughout the entire summer we have heard the distinct sound of the ice cream truck jingling by. Noah routinely runs to the window or down the driveway to watch it drive by. In all that time however I do not think he ever wondered what the purpose of the ice cream truck actually was. Last night when we heard the truck Mike suggested we go over and get something. So we all took off down the driveway and as we got closer Noah just stood there looking stoically at the man in the side window.
He was completely speechless. I asked him what he wanted and he just stood there as if I was speaking a foreign language. It was actually hilarious because we could tell he was trying so hard to figure out what this all meant. You mean the truck brings ice cream to your house? And then you can eat it right there? His mind was boggled.

I picked out a SpongeBob pop because I knew he would recognize the character. I thought Noah was finally adjusting to the whole ice cream truck thing until the driver piped in. "You better hurry up and eat that before he (SpongeBob) eats you." Wow. I don't suppose there's any sort of formal training for his position is there?
As it turns out SpongeBob was made from fruit punch and cotton candy sherbet. It actually tasted worse than you can imagine so Noah ended up eating most of my Chipwich instead. Now those are good!

Monday, August 10, 2009

What's in a name?

It occured to me this morning that perhaps I have too many nicknames for Noah. As we were getting into the car I said "I love you my little peanut!". Noah quickly corrected me proclaiming "Mama I'm not a peanut, I'm a muffin!". Poor boy.

So I better get them all down on "paper" so that when he's 16 and won't let me call him Goose I'll remember the good 'ole days!

Goose, Goose da Boose, Butter Bean, Beany Beans, Beans, Love Muffin, Peanut, Gooby Goo, Honey Bunny, Biscuit, Bisky Bisque...I am sure there are more but that's all I can think of!

Saturday, July 25, 2009

What's in a name?

When I got married I happily took on my husband's last name. I loved being a "Mrs." and proudly placed it before my name whenever I had the option. Now I realize that soon I will no longer be Mrs. Solt. I am not quite sure how I feel about that. I am sure there is a deeper issue here associated with the fact that I gave up my maiden name in the first place; but it feels unfair that I have to give up my name and my husband doesn't. I think I feel more strongly about this because of Noah. Resuming my maiden name will mean that we will no longer carry that bond. I will be a Massaro and he will be a Solt. I know that speaks nothing of our actual bond but it still feels important nonetheless. We will no longer be The Solt Family. I just think that is sad.

Wednesday, July 8, 2009

Update

Update to the Update....
After posting this announcement it was quickly realized that it was a mistake. We did get married for a reason but I am not sure if we will ever know if it was a good reason. Love is blind; it's also blinding sometimes. Mike and I love eachother. But we don't make eachother happy. I don't think we ever did. That is not a fun thing to admit but it's the truth. If it seems like I don't have all the answers well I actually don't have any of the answers! I just keep plugging away hoping I will get things right eventually. So the journey to a new normal continues....
---------------------------------------------
After a lot of talking and a couple of extremely stressful weeks, Mike and I have decided to cancel our seperation. We did get married quickly. It probably was too quick. But that will never change the fact that we did get married for a reason.
We would like to be healthier physically, emotionally, & financially. We have a lot of work to do but we are now one step closer to reaching those goals together.
Hopefully one day this will just have a bump in the road along our journey. For now we are going to take it one day at a time. And just for the record this is one decision that was not made for love of the boy. This one was made "all because two people fell in love".

There just may be a happy ending to our love story after all...

Monday, June 29, 2009

Moving on...well sort of.

Today was a tough day.

We got the keys to the new house and started the arduous task of moving in. The place we have lived for the last two years is a 2nd floor duplex. We actually really liked the space itself but hated parking on the street and not having a yard for Noah to play in. The new house has a big backyard and a beautiful deck for our bbq. Our bbq. Can I even call it that anymore?

I'm so mad.

I'm mad at Mike for not wanting the same things as me. I'm mad at myself for not taking more time to get to know him before we got married. What if this was it? What if this was my one shot to get it right and I blew it? What if Noah hates me for not trying harder to keep his parents together?

I'm so scared.

Thursday, June 25, 2009

For Love of His Boy

That is really what all of this is about. The Love of The Boy.

Seven plus years is a long time to spend not knowing what you want in life. Not knowing how to deal with life. It is a long time to love someone, knowing that you are not what they need you to be.

There is no doubt in my mind that I love Marianne, she is everything anyone could ever want in a friend, wife and mother. It is of no fault of her's that this situation has come to be. She gave me a beautiful little boy, someone who I cannot think about without wondering how I got so lucky. He is me. My little man, my buddy.

I can't look back at my past and want it to be any different. I can't say I would not want to take the path that I did, because that would be a life without Noah. I don't ever want that life.

Marianne and I will be fine, and we want to ensure that Noah will have the greatest life possible. We want him to know that he has a loving family, despite any issues or complication that are a part of that. We need him to know that he is loved. That everything is OK. That his parents will always be there for him.

This is a new page in both of our lives. We still love one another and that will never change.

Tuesday, June 23, 2009

Clarity

Over the last few days I have been doing a lot of thinking. Saturday all I could think of was how sad I was and how much I was about to lose. The more time that passes though I realize that this is what we both wanted. I just wasn't willing to admit it. We got married too fast. That is a fact. After dating for just 10 weeks we did not know each other. Over the last eight years I have convinced myself that I was happily married and madly in love. When in reality I was madly in love with the idea of being happily married. I didn't want to be a failure. I kept thinking that if Mike could only do x,y,z... we would be so happy.

I get it now.

I am so sorry for all of the "why can't you just...", and "why don't you...". It was never your job to be x,y,z if it didn't make you happy.

Sunday, June 21, 2009

An Absence of Antagonism

In 9 days we are moving. The 3 of us. Together. Is that weird? It was decided weeks ago. Now everything has changed. We are going to live together for atleast a few more months, primarily because we are not financially ready to seperate. It will give me time to find a job and for us to start changing bills and opening new bank accounts and all the little things no one ever wants to have to deal with.

Will it be difficult? Definitely. Will it help Noah adjust to Mommy and Daddy in two different bedrooms. I think so. Is it just delaying the inevitable day when he moves out. Unfortunately.

Websters defines amicable as exhibiting goodwill and an absence of antagonism. I can do this. I will be fine....repeat after me....I can do this. I will be fine....I can do this. I will be fine....

Does divorce have to be ugly?

I don't think so. Neither does my husband.

Let's be clear. I am not happy about this. I love my husband. I am in-love with my husband. But my husband is not in-love with me. That sucks. That really sucks. It's not my fault. But it's not really his fault either. He tried to tell me 100 times. I wouldn't couldn't listen.


Yesterday was a terrible day. TERRIBLE. By the time I laid my head down last night my eyes were practically swollen shut. I kept thinking about all the memories. All the never-wills and mighta-beens. I thought about the questions the boy would ask and if I would ever have all the right answers. I thought about living alone. Finding a full time job after being a stay at home Mom for almost four years. I quickly went from heartbroken to terrified. How would I ever be able to get through this? I didn't have a clue.

This morning I woke up with a peace in my heart. I realize I now have a choice to make. I went out to the living room to find Mike asleep on the couch for the second night now. As he opened his eyes I told him I thought I would be ok. That I was ready to try and move forward and do whatever we need to do.

I'm ready to be friends*.

*By friends I mean I am ready to resist the urge to throw my arms around you everytime you walk into the room.

Saturday, June 20, 2009

The "D" word.

Today my husband and I decided to get a divorce. The big "D". Man that is such an ugly word. I am not proud of it. But it is reality. Now I am here for love of the boy. Our boy. At just 3½ years old he has so many years ahead of him. I want him to know that everything we do is for him. Everything is going to change for his Dad and I. Our job is to make sure nothing as little as possible changes in his life.

Can a couple make the switch from married to just friends? This is the first day of our journey...

Sunday, June 14, 2009

Uncle Mikey, he's our man...

Noah: Mama, why is the car shaking?
Me: I think there is something wrong with it, we need to get it fixed. It's ok though.
Noah: Oh ok. Uncle Mikey will fix it with a screwdriver.

2 minutes later....

Noah: Look! Animals! I never saw animals before.
Me: (laughing) Yes you have seen animals before.
Noah: Oh. You're right! I'm so silly Mama.

Thursday, April 30, 2009

Updates

So I know I have lost all credibility when it comes to saying i'll be updating soon....but I really will!

Fortunately my pictures are all neatly organized in my folders so when I actually have a moment to spare it will be easy. So Easter should be up by Memorial Day, that's good right?!

Saturday, April 4, 2009

Mommy's Little Helper...err not so much.

Me: Noah are you ready to start cleaning up your room?
Noah: No I can't Mama, I'm busy. Can you clean it please?

Shame on me. What a silly question to ask a 3 year old.

Friday, March 6, 2009

Potty Training 101

Today our baby boy officially started potty training!! The day has been rapidly approaching when diapers would simply no longer fit the boy. And to be honest after almost 3.5 years we are completely sick of changing his diaper! Up until today I think Noah has sat on the potty maybe twice and never actually did anything. He has long since outgrown the baby potty that we bought him last year so had it not doubled as a step stool it would have been a complete waste of $30.

Mike declared earlier in the week that since he had Fri & Sat off this was going to be THE week. The original plan was to take his diaper off and let him figure it out. That plan clearly did not come from Mama. So when bathtime rolled around we said "Noah why don't you try to go potty!". I do not remember exactly what was said but somehow the bargaining chip became a bubble bath*. With the promise of those sweet decadent bubbles he hopped on the toilet (he don't need no stinkin' baby seat!) and went, woohoo!!

*Noah LOVES bubble baths. He would take six a day if you let him. I think he enjoys getting sick because I let him soak half the day to help his runny little nose.

Sunday, February 8, 2009

So it's been a while since my last post. I have been neglecting my poor blog but I always come back sooner or later! Occasionally i'll find the time to go back and post several things at once. I am able to change the dates of the posts so 10 years from now it will look like I was really on top of things. I'm sneaky like that. :o)

I feel a big update coming. I just need to get all my Valentine's Day orders finished up first! So check back soon! In the meantime...here is one of Noah's little gems from Inauguration Day...