"Do not look back and grieve over the past, for it is gone; and do not be troubled about the future, for it has not yet come. Live in the present, and make it so beautiful that it will be worth remembering."
it's no surprise... 2009 has been a trying year. it started out pretty awful to be honest, but in the end, it's been one of the greatest years of this decade.. one of the greatest years of my life. in january, we learned of justin's diagnosis. not sure what to expect. not sure where we were headed. for the next few months, all we could do is really just sit and wait. it's so hard on a pregnant woman to learn of a diagnosis for your child that has such a large spectrum. spina bifida is a challenge for anyone, a mother, a father, a child, a grandparent, but the hardest part is truly playing the waiting game. we had learned things here and there.. we had googled things. we used wikipedia.. and that is not something i recommend to anyone expecting a child with SB. it's scary what's out there on the internet and even some of the books i had looked into were pretty outdated and didn't offer much hope. but i can truly say the birth of my son was a life changing experience.
my whole life i had wanted to become a mother. my whole life, i had wanted a baby boy, and i was finally lucky enough to have a beautiful daughter and a precious baby boy on the way. the day we learned of justin's diagnosis was not the hardest day of my life. it was tough and it was scary.. the options we were given weren't promising. they didn't offer much hope either.. right away, the word "terminate" was brought up and by no means was that an option for us. but it was the scariest thing to hear coming from a doctor.. especially for a baby that is almost 5 months gestation. it makes you think things are really serious. for the next few months, we were at an appointment what seemed like every week. we were making trips to CHOP, the UPenn, and to my dr here at home. it kept us busy. i tried hard not to stress myself out. i knew we were dealing with somethings serious, but i didn't want to worry about how serious it was because i was afraid it would cause more stress and i didn't want that for justin.. honestly, the scariest part of my whole pregnancy was the night before i was induced.. i was at my parents house and before i left, i had finally broken down. this was it. justin was no longer protected by my belly. he would be out into the real world within a day and i was scared he wasn't going to be "safe." i was scared of what we were really going to have to face. and i was scared of the toll it would take on my family.
on may 28, 2009, we were blessed with the most amazing little boy. i had justin at 9:45 that night and he was taken pretty much right away over to the CHOP nicu. we were able to see him and get a few pictures before he left UPenn, but it certainly wasn't enough time that a "new" mom or dad would really wanna be able to spend. zac and i decided that night that we'd go back to our room, rest up and go see justin in the morning. by 6 am the next day, we were over at the nicu and justin was by far, the biggest baby the nicu nurses had ever claimed to see. before we made it over to the nicu, the neurosurgery department had called and told us that justin would be having his closure surgery that day around noon. he ended up getting moved up to about 10 am, but before he went into surgery, they had him in the sedation unit and he was on his belly, but he was strong enough to lift his little head up and move it to the other side.. i felt like that was such determination. and i should have known, it was only a sign of good things to come.
the nicu nurses called us rockstars. they were amazed at the way zac and i were able to handle things. i only cried twice during our nicu stay.. the first day i could hold justin and the day that we left. pretty awesome, if you ask me. before we were released, a dr had come down to talk to us about life after the hospital and i will never forget the words he said to me.. he told us that we were the people who would shape justin.. we'd be the ones to shape him and teach him and keep him positive. he said we were the most important people in his life. and i honestly believe that little discussion is where i've found all of my strength since coming home. i don't know how many nights i would sit up with justin and just cry because we were so lucky. because we were so blessed. because we were home. i NEVER expected the nicu to be a distant memory. you don't anticipate forgetting things like that.. and to be honest, it almost seems like it never happened. i will never forget the nurses and their help. they were such a great support. but it was so awesome to get outta there!
this little boy has changed my life. i never knew what fear was until we learned of his diagnosis, but i never knew what bravery was til he was born. he is such a fighter and he amazes us every day. justin is now 7 months old, he has PT weekly and OT biweekly. and he's right where he should be for the most part. he is able to sit up on his own for about 30-40 seconds.. he's starting to roll over, and he's starting to bear weight on his legs. i know the next few months/years will be trying, but i know this kid's ready for it. the way he sees madi move is only motivation for him.
i am so proud of the big sister madi has become. she has moments where she's jealous, but she is infatuated with him. she will do anything to put a smile on his face. and it is the cutest thing in the world to hear her talk about her baby brother and the love they share. it's been a tough year on her too, even though she has no idea what has really gone on. it's tough for a 3 yr old to have to stay with family for two weeks while her parents are away. but she's accomplished a lot this year. she has not only become an amazing big sister, she has been potty trained since the beginning of last year. she has finally rid herself of the bink (TWICE!), and she's been in a "big girl bed" for a little more than a year now. my little girl is growing up. we wanted to put her into preschool this year, but opted against it because of justin's diagnosis and the swine flu.. we were too afraid of what she could bring home.. but we're hoping that this year she'll be able to attend. i am sure she would absolutely love it.
this year has been a tough one too, in the event of my cousin stevie's death (and michael jackson's, i won't lie!).. i think of him daily and it's getting easier, i guess, but i miss him so much. i know he struggled with a lot of things, but i know he would've never given up on his boys. it breaks my heart that he and i grew apart as we got older, and i know.. it happens, but there is a real feeling of guilt on my part. i always feel like i have to save the world and i wish i could've saved stevie. stevie and i have had some great memories, and a few bad, but i will hold onto all of them because now that's all i've got. i miss that kid so much. i miss playing with him and mandi in the attic. i miss going to ben franklin's to get icees together. i miss watching him playing midget football. and i miss seeing him shave his eyebrows at mommom & poppop's house.. the last time i saw stevie, he was in such a good mood. he was so happy and it was a side of him i hadn't seen since we were kids. he might have even been happier than when he was a kid.. i just know the smile on his face was genuine. and i am so happy i got to witness that.. even if it was only for a short time. i miss my cousin so much.
this decade has had its ups and downs. i had the last of my highschool years, which were pretty bittersweet.. i had my weis quality years. i met simon gagne. i learned who my 'real friends' are. i fell in love and got my heart broken. i wasted time with boys and friends who meant nothing to me in the end, and just caused drama. i met zac and fell in love (the real kind of love, not the love i had for him when i was 10). i became a mother to two beautiful, awesome babies. i lost my grandparents and a cousin. i've been tried with life a million times but i always seem to learn from it, no matter how nasty the lesson might've been.
happy new year!