Thursday, July 28, 2011

Due date

Today is our due date! I can't believe it's officially here. I'm not sure how to express my feelings today. I'm just a big ball of emotions. I'm not sure if I should be angry, sad, at peace, etc. But I can tell you, I feel so many emotions all at once right now. This journey so far has been full of tears, pain, sorrow, grief, smiles, some laughs, and triumph. Me, no I do not feel triumphant. That part belongs to Sophia. She has been triumphant in the sense that she is no longer laying in that cold, dark grave. She is laying in the arms of Jesus. She gets to live an eternal life with Him. How great is that!? It's something we all dream of, living in a perfect world without hurt, without pain, without illness. And she has that! Her and all her angel friends...

Aiyana & Bobbi Lynn
And those are just to name a few! She is one lucky girl to have so many beautiful friends. She also has one very special friend here on Earth... Katie Santasieri. I like to think that all these babies are watching over Katie. She has been such a blessing to her family & all their friends. She is one beautiful little girl!

I trust that Sophia will be at God's side on Monday morning, watching over her 2 1/2 year old cousin, Isaiah. My handsome little nephew will be undergoing brain surgery. I wish I could be there with our family... but I have so much going on and no transportation. He's such a strong little man. He may not be strong on the outside right now, but he has one of the strongest hearts I have ever seen. I know that God & Sophia will not let anything bad happen to him. Speaking of Isaiah, I have started a blog for him, to follow his journey with Chiari Malformation. Feel free to follow him Through The Eyes Of Isaiah.

Saturday is the big day! Sophia's Carwash For A Cause! I'm so excited. I really hope this will tie up all the loose ends and we'll be able to order Sophia's headstone by Mid-August. If not sooner. I'm excited to see who will all be there. I haven't seen very many of my friends since losing Sophia. I've basically secluded myself and only spend time with a select few people. I'm thinking that if it's a big hit, we may very well end up doing this every year & then donating the money to Anencephaly research. I think that would be another great way to keep Sophia alive.

I know that some of you are aware that I haven't been able to make it out to visit Sophia at the cemetery in about a month. I have been finding it unbelieveably hard to function to a full 100%. And I have been feeling very guilty for not being able to visit with her. After her funeral, I was going to visit with her every other day. Then it became every other 2 days. Then once a week. Then nothing at all. That kills me! It bothered me so much and had made me feel so guilty, that 2 friends of mine had agreed to take a walk with me one night to go visit with her. It's much cooler at night. No one is supposed to enter the cemetery after dark... but I just couldn't help it. I was hurting. I had to make sure her marker was still there. I had to make sure her flowers weren't knocked over. And I had to check and see if her grass was growing yet. I figured that if we got caught, I would just explain to whoever it was that I'm a grieving mother who has been overcome with guilt that I just had to visit her to put myself at ease. Needless to say, we weren't caught. We were very quiet and respectful, as always. We didn't stay long (we all had a weird eerie feeling while we were there). I'm happy to report that Sophia's grass is growing nicely in some spots. Other spots are still dried out and dead, but not like it was the last time I was there. Her marker is still there along with all of her flowers.

We wanted to go visit her today... what better day to do it then on her due date... as a family! Unfortunately, the weather kept us at home. I'm sure she understands. It's not much fun tracking all the kids to the cemetery on foot. We have quite a bit of flat land, but to reach Sophia, we have to walk up several steep hills. Mercedes & Javier are known to poke around when it comes to walking. I would much rather walk at a decent pace so I can get there faster. Hopefully we'll all be able to make a trip to the cemetery after the carwash. Not just as a family, but as a group of people who love & care about Sophia. Our helpers do not know about that plan just yet. But they aren't expected to drop everything and come along, but I figured an invitation would be nice. Maybe then more people would understand why we are working so hard on raising the money needed for Sophia's headstone. She deserves it!

Wednesday, July 13, 2011

6 weeks (and a day)

I can't believe it, 6 weeks have gone by since Sophia's birthday... Happy 6 week Birthday, baby girl! Honestly, I'm still trying to figure out how I have made it this far and this long without her. I guess you could say that I'm not really "without" her. She lives on in my heart, and in my mind. Not 1 day goes by that I don't think of her or wonder what she would be doing now if she were still with us.

We have finally been able to set up a date and place for Sophia's Carwash For a Cause.  I can't wait... I'm so excited for more people to get to know my precious little girl and to spread more awareness on Anencephaly. Hopefully by the time I'm done, everyone in the world will know what it is. It's not as uncommon as doctors try to make it seem. It happens every day! As for the carwash, anyone who is interested in coming to have their car washed or to help out, we will be at AutoZone on Rt. 61 on July 30th from 12-? It will be $6 a car. Not bad, right? Not to mention, any money made during this event will be put towards the cost of Sophia's headstone. We are getting sooo close! I'm hoping that the carwash is a big hit and we'll be tying up all the loose ends and ordering Sophia's headstone in no time.

Now, I need to ask everyone who is reading this to please say a prayer for my nephew, Isaiah. He has Chiari Malformation and is expected to go in for surgery possibly this week. My sister has been told that things may change for him after surgery. He may not be able to walk, or talk, or see. It is a very risky surgery. Isaiah is only 2 years old and needs a lot of prayers.

One more prayer request for a very special friend of mine, Dawn and her baby, Katie. Katie will be born sometime later today. She was diagnosed with anencephaly on Feb. 22. I'm hoping that Dawn and her family get to spend lots of time with Katie. This, I'm sure, will be a very bittersweet time for their family. I'm sure Sophia will be right there waiting for her at Heaven's Gate. Dawn & family, you are all in my prayers tonight and always!

On another note, I have finally been able to meet my twin niece and nephew. They're gorgeous!! I thought for sure that I would have a hard time holding Shayna, seeing as how she is a baby girl. So I held Braedyn first. He's such an adorable lil guy. When the time came to hold Shayna, I was a little iffy about it. But once I got her in my arms, I didn't want to let her go. It was almost as if I could see some of Sophia in her. Thanks to these 2 little babies, my empty arms felt better for a few hours. It was very hard for me to fall asleep that night. I could still smell their baby smell on my clothes. Changing didn't help... I could smell it on my own skin. This made me miss Sophia so much more. On a scale from 1-10, it was at 1,000. I ended up asking God about a million questions that night:

"Why me?"
"What have I ever done to deserve this?"
"Why did you have to take MY baby?" 
"Why can't I hold my baby one last time?"
"When my time here is over, will Sophia even recognize me?"
"Does Sophia miss me as much as I miss her?"

And so many more. Life has been very hard the last 6 weeks, not to mention the last 5 months! Sometimes I feel as if I am making progress through my grief. Like I take 2 steps forward but then I get pushed back a step. But like Jenny says, it's still progress!

I feel this constant urge to plan things. Not things for myself, but things for Sophia. Things that I can do to raise awareness on this condition. Things that I can do so that more people will get to know who my daughter was and what she has done for us. I started making awareness ribbons... that went well for awhile. I started making keychains with her name on them... they still sell sometimes. I've planned a carwash... that's coming up. I wanted to put together a walk with the March of Dimes... the lady never called me back to meet us at the end of May. I would like to still get it together, but I don't know where to start. After that, I'm not sure what else I can do. And I feel as if once I stop planning things, I'm just going to fall apart all over again and I'm not going to have the strength to put myself together again. As long as I'm planning and following through with those plans, I'm okay... my mind stays plenty busy. Even nights are hard. Once I've got all the kids tucked away in their beds... my mind starts to wander. It starts to race in a million different directions. Like I explained to a good friend of mine yesterday, it's like being one person... and wanting to go in every which direction at once. And almost like your body is trying to separate from itself just to make it in all those directions. My mind is consumed with thoughts of Sophia and how this loss of such a beautiful person will affect me in the long run. Yes, I am still hurting now... but I'm still in the beginning. Hopefully soon I'll have a grief counselor to help me make sense out of this so called new life.

Special thanks to:

Sheila S
Melinda Woods
Ross & Allison Johnson
Lesley & Allen McCoy
Melissa M
Rachel J
Ramsey Gregory
Sherri & Tom F.
Danyelle S.

A very deep & heartfelt thank you to all of you for donating towards Sophia's headstone. And an extra special thank you to those of you who have been here for us through it all. THANK YOU!!!

(To make your donation towards Sophia's headstone, click the tab above that says "Donate towards her headstone")

Monday, July 4, 2011


I'm happy to say that we have finally received 30 of our hospital pictures from our NILMDTS photographer. I was having a pretty down & out day, like I've been having the last 34 days. Yesterday was no different. Until I decided to check my e-mail and I seen that I had a message from our photographer saying she was finally able to upload 30 pictures. I was beyond excited. I couldn't wait to see them. Which reminds me, I still need to reply to her. These pictures made my day so much better. 1 good day out of 34! All it took was to see that our love for Sophia was caught in the pictures. They're truly amazing! Now I'm sure you're all wondering when I'm going to shut up and share them with you. So I won't make you wait any longer!

To view Sophia's hospital pictures, go to Collages and click on Guests on the left. Next, it'll ask for a username and password. The username is Sophia Grace's Birth and the password is 23376. On the next screen, just enter your information. Then it'll bring you to the album. I think the site is experiencing some problems so in order to view them, you have to click on "Webshow" to the left or else you'll only see 3 pictures. Hopefully they'll get it situated soon. There is also a guestbook located on the site. It too sits off to the left. We'd love to hear from you!

There are many more pictures left. I'm really hoping she got a picture of all 7 of us together. Honestly, I can't remember much about that day, so I'm not sure what she got pictures of. All I know is, I can't wait to see the rest! She has done such a wonderful job. The wait was totally worth it! Kathy Diggan, if you are reading this, thank you from the bottom of our hearts!! Thank you just doesn't seem like enough. I'm so glad that you were able to meet our precious little angel!

I haven't been able to update lately because yet again, I've fallen sick. I'm starting to notice a pattern here. I guess I'm supposed to be sick on every holiday now. Last night was very hard for me. I hated to be out and enjoying the fireworks with the family. I wanted so badly to be sitting there holding Sophia and including her on everything we did. But, she made her presence known! Angel snagged his sisters cell phone and we sat there watching the fireworks and listening to "I Will Carry You". Before long, they shot off a firework that looked like a butterfly!! I'm not sure why, but butterflies remind me of Sophia. Everytime I see one, I know she is with us. So seeing this beautiful butterfly lighting up the night sky, was the sign I needed!

Just a little while ago, I looked in our newspaper to find this picture

It's a little hard to see, but that is our family all sitting on the curb watching the fireworks. I'd be the one sitting there in black pants :) Angel is right beside me, holding Javier. Jordan is sitting in front of me. Mercedes is sitting behind Angel, all wrapped up in a blanket. And Junior is sitting over by his Grandma.

I like to think that Sophia & her angel friends all had the best seat in the house! But I can only imagine how their poor ears feel! Either way, I'm sure they enjoyed our "Coal Cracker" fireworks!

Today is yet another Monday... God how I hate Monday's! 4 weeks ago today, we buried our daughter. How has it been 4 weeks already? I wish someone could explain to me how all this time just seems to have flown right on by while it still feels like yesterday. My life still feels as if it's on pause. I feel as if I'm a robot. Like someone else is controlling me... keeping me moving forward through all these days. It's so hard to explain and even harder to understand.

Tomorrow will make yet another Tuesday... I hate these days even more. Tomorrow will make 5 weeks since we lost her. I know this month is going to be one of the hardest yet. Technically, I should still be pregnant right now! I should still be feeling Sophia kicking and moving around. I had wanted to plan a prayer ceremony rather then a baby shower for the early part of July. I never had a chance to do that. Instead, I'm planning a car wash to raise funds for Sophia's headstone. This all seems so unfair. Sophia's crib and changing table still sits in its box. Her blankets and clothes sitting in a storage tote. Playtex nurser bottles still sit inside of its box, unopened. Bibs, hats, onesies, etc. still not touched! Ask me if I will part with any of those things and I will tell you... NO! Even though Sophia is no longer with us in body, these things are still hers. I will never part with them. They are reminders that Sophia was very real. She wasn't something I had made up. I have many many pictures of her. Precious and bittersweet memories frozen in time.

With that in mind, I will end this here so you all can go on ahead to view our beautiful girl!

***Sophia Grace,  we miss you so very much... and we love you even more! I wish I could put into words just how much, but there are no words to describe it. You have done so much good in your short time with us and have touched many lives in the process. I am so proud of you! And I'm so proud to be able to call myself the mother of such a strong little girl. You're my world!***

Friday, July 1, 2011

1 month...

ago I had to say "see you later" to my precious little girl. One month ago, I was the happiest, yet saddest mother in the whole world. One month ago, we had pictures taken of our family of 7. One month ago, several people shed many tears in my hospital room. One month ago, I was able to hold my baby girl in my arms for the first time. One month ago, Angel proved to me just how strong he was by tending to Sophia's needs (cleaning up after birth, cutting her umbilical cord, putting a dressing and hat on Sophia's little head, swaddling her in a blanket, and bringing her to me so I could meet this beautiful little girl.) One month ago, I felt part of my heart break and leave right along with my girl. One month ago, I thought for sure I was going to die, right along with Sophia.

But, I'm still here! I must be doing something right. Honestly, I believe it has a lot to do with the prayers that everyone has been sending. I believe that if it weren't for the prayers from all of you, I may not be where I am today. I think your prayers are what has pulled me away from going off the deep end.

These last 31 days have not be easy ones. Just recently, I decided to try to put myself in Sophia's shoes. If my mother would have lost me, would I want her to sit around the rest of her life with a pile of grief & sadness on her shoulders and in her heart? No, I would not. I would want her to try her best to enjoy what life she has left. And I'm sure that is exactly what Sophia has been thinking. I can almost hear her saying, "Mommy, please! Pick yourself back up. I haven't gone far, for I am still in your heart. I will be waiting in God's mighty Kingdom for you." So, I have decided that I'm going to start picking up the pieces of our lives. Our lives have been changed forever, but we still have a puzzle of a life to put back together... just with 1 big missing piece.

Right now, I want to thank all of you for your support, prayers, & donations! We would like to thank each & every one of you from the bottom of our hearts. Hopefully you're all reading this. Without you, we'd be stuck! I also want to thank Maryann and her husband from Buried With Dignity. You are both truly amazing and I'm so thankful that God has brought you into our lives! Thank you all <3

As of right now, we are at a total of $1,320 in donations towards Sophia's headstone. We're almost there! I can't believe it... this is truly a blessing. We still have a ways to go yet to reach our goal of $3,000 but we're getting there and that is all that matters. In time, Sophia will have the stone that she deserves thanks to many of you. I'm hoping to get out this weekend to snap a few pictures of the headstone we want for her so I can post it here to share with you all and to send to Maryann so her hubby can add it to the site.

On another note, I should be getting our hospital pictures back sometime within the next day or so (I hope). There seems to be a problem with the website that our photographer has been uploading them to. I cannot wait to see them! Once we get them, we'll be able to pick our favorite picture of Sophia and send it along to BWD so they can add her picture as well.

Life has many ups and downs, twists and turns, and bumpy roads... but it is times like these that show me there are still some good people left in this world. Many of them, I like to call friends. You are all just so wonderful. I don't know what I would do without you.

I also want to thank those of you who have commented on my last post. I'm glad to know that everything I am feeling is all normal. I question myself all the time. There is this burning deep down inside me that wants answers as to why everything happened the way it did. Questions that I will probably never know the answers to. And for now, I think I am okay with that simply because I know that time will reveal all.

Seeing as how today is Sophia's 1 month Angelversary... we went outside today to release a few balloons for her. This time, it was different. Angel picked up the balloons that you tie the big rubber band on and then kiddos can kinda bop it around with their fists... I'm not sure what they are called but I'm sure you know what I'm talking about. He had them blown up with helium and brought them home for all of us to add our own special messages. Like the kids say, I wrote a book haha! Thank God for these big balloons. It was nice to see them floating up to the Heavens. As I sat on my porch steps and watched the balloons float away, it looked like they were all being pulled in a certain direction. So I sat there and told myself, "See, Sophia isn't far at all. She's just a few blocks away... look straight up and there she is." Call it strange but it seemed to comfort me in a way.

As I've said, life has been rather difficult since losing Sophia. But Mercedes, Junior, Jordan, and Javier show me every day that life is worth living. They never forget about their baby sister. Several times we have sat down to talk with Javier, seeing as how he is only 4 years old and doesn't seem to understand much of what has happened. We asked him if he knows where "Sissy Sophia" is. And he'll say, "Yea, her in Heaven with God." So that right there goes to show just how much he does understand. I can also tell that he misses her, just by the little things he does. While I was still pregnant with Sophia, he used to hug and kiss my belly several times a day and say, "I love you Sophia!" And now, one month later, he's still doing it. But he catches himself when he goes to say I love you. He has asked if I will have another baby. At this time, the idea of that is up in the air. We're not too sure. I have A LOT to talk to the doctors about and they just seem to keep rescheduling my appointment with no real reason. My primary OB has made me feel more like a disease then a patient. I'd much rather go back to Geisinger and see those doctors rather then the doctors at the Geisinger clinics. They just make my skin crawl and make me wanna scream til I lose my voice.

Ugh, I wish I had a camera to take pictures of the balloon release today. It wasn't very many, but to me, it was amazing. The kiddos loved the idea of writing their own messages to her this time. I'm sure it made them feel all warm inside, as it did for me.

I'm hoping to be able to go visit with Sophia again soon. I never realized how hard it is to walk 2 miles with 4 kids. And going uphill in the heat, not easy! But if I have to do it that way again, so be it. I just miss her so much. Everytime we go to visit her, I swear, I have a smile that goes from ear to ear. When we visit with her, I feel happy. We're all sitting together, as a family, and just engaging in conversation and including Sophia in those conversations. It's when it comes time to leave, I have a hard time. I'm finally able to control my tears for the most part (even though a few still escape here and there). But leaving her feels like I've just been punched right in the gut. There are times when I just want to run away and disappear. Disappear to Sophia's resting place.