The MRI results that we have been waiting for are in. They are not good. He has calcifications in his brain as well as abnormal parts of the white and grey matter that make up a brain. White matter makes up motor skills and grey matter is cognitive. We also learned that he currently has a heart defect. A very minor defect but its there. Benzen will never be a "typical" boy. What I mean to say and what they tell me is "only time will tell." I'll tell you he will have the best opportunities in life living with Amy, Beyla, and I. Its a challenge we were chosen for and we except.
I have gotten a lot of bad news in my short life so far. Getting the news today that my first born son and my families last name legacy will most likely have mental retardation was another sucker punch to the stomach. Especially when you look at baby Benzen, he is perfect. In 3 days, I have learned more from him and love him more than one should in that short span. My dad always told me "you only get 24 hours to feel bad for yourself." I am sure this is an exception but I don't want the exception. I'll take my 24 hours. Then its back to being the best dad and husband I can be. There is a lot of negativity in this world that I don't want to be apart of.
I once asked my grandpa Bob how he was feeling. He said "I am 100%, but at this age, I have a new 100%." That holds true for me. I am 100% but it is a new 100%. I am ready for my new 100%.
Benzen will be in the NICU for 6 weeks. As I sit here looking into his little crib where he is currently under photo therapy and just past him Amy asleep on the little couch, I want to be able to take them both home now. Where we can be with Beyla and start our new life together. Every parent says it about their kids I know but I think Beyla is slightly advanced to not only communicate with Benzen but help him through life. We all may have to learn sign language to communicate with Benzen, and I know Beyla can learn that. She is going to be great with him.
Anyway, when Remi was in the hospital I tried to give a song that I draw inspiration from. The first one for Benzen is a love song that I obviously was able to relate to my life. It was sung by Jamar Roger on the show The Voice. Its called "I want to know what love it." This song was originally done by Foreigner. The only way I know to get the Jamar Rogers version is Itunes. I assure you its worth it. These are the words I sit and say to myself looking into Benzen's crib.
Lyrics:
I gotta take a little time
A little time to think things over
I better read between the lines
In case I need it when I'm older
Now this mountain I must climb
Feels like a world upon my shoulders
I through the clouds I see love shine
It keeps me warm as life grows colder
In my life there's been heartache and pain
I don't know if I can face it again
Can't stop now, I've traveled so far
To change this lonely life
I wanna know what love is
I want you to show me
I wanna feel what love is
I know you can show me
I'm gonna take a little time
A little time to look around me
I've got nowhere left to hide
It looks like love has finally found me
In my life there's been heartache and pain
I don't know if I can face it again
I can't stop now, I've traveled so far
To change this lonely life
I wanna know what love is
I want you to show me
I wanna feel what love is
I know you can show me
I wanna know what love is
I want you to show me
And I wanna feel, I want to feel what love is
And I know, I know you can show me
I'm sitting here lying in bed with mom and dad in their bed and they are doing a good job babysitting me while Ross is out of town. We read this and we also have felt that sucker punch in the stomach perhaps not quite the same as yours but very similar. I can't believe we (you) have to go through this again but you told me today be positive. You were right in saying that you and Amy are the best chosen parents for benzy!
ReplyDeleteYou asked me a question today that I couldn't answer right away. "Well ash, does this make you want to have kids?" The answer is, if you have taught me anything it is to always take what life hands you and run with it with the love and positive thoughts because things will get better! That and to never give up. You also have taught me how to burp really loud so now I don't know what advice to actually take! Just kidding. Stay strong and I know you know "what love is!"
Your loving sister,
Ashley
Ben- you have such a way with words. As sad as all of this is with your little man, your blog is something I both look forward to reading, and dread allll at the same time. I too have learned since graduating that we dont get our fair share of horrible things, it's never ending. My heart aches so for you and any, as I know what hospital life is like all too well, and it's a life I wish on no one. I have only learned your struggles with remi through the grapevine, but I have learned through that little bit that you and amy are two of the most kind hearted people, and so strong, and destined to be great parents no matter what challenges are thrown your way.
ReplyDeleteI personally am not a huge believer in prayer, but more in positive thought, so I am sending all of the positive thought I can possibly muster little baby benzens way. I know not everyone believes that way, and I know you guys are going to need allll the strength you can get, so I hope I didnt overstep my bounds by calling around & nd adding youre family to to every church prayer list I possibly could, both through the phone book as well as churches attended by family and friends. I know what it's like to be a helpless patient much like him through my coma last year and the out pouring of support was overwhelming and such a help in regaining my strength and staying positive.
I know in my heart that Benzen could not have been blessed with better, more living parents, or a better support system.
Hang in there. Itll bet a long journey, and not being a parent myself I can't imagine what youre feeling, but life sure does have a funny way of working itself out. Know you are in my thoughts everyday, and I can't wait to check this blog and see good news. the best news yet, that you are taking him home to be with Beyla, and bfe the family you deserve to be.
Much love to you all.
Jen Bastian
Ben and Amy,
ReplyDeleteWe are so looking forward to seeing you guys when I can get rid of this respiratory infection....anyway we are trying to stay updated as much as we can. I just wanted to share a couple of things with you. I am sure we told you that the drs told us we should put Olivia in a "home" after she was born because of her mental retardation ( I can barely type the word) Well - I often think of looking those drs up and shoving ALL of her accomplishments, lives she has changed, and continues to change, amazing abilities and amazing intelligence down their throats! Benzen will thrive under the loving care of his family and friends - he even has the best cheerleader in heaven cheering him on. Set the bar high. He will amaze you. You will laugh and cry along the way, but every singe milestone will set you on fire to strive for the next. I wish you could hear Olivia sing "Keep Your Head Up" by Andy Grammer right about now. It would make you smile:)
Will talk to you soon.
God's healing and peace to all of you.
Love you lots!
Jodi
Ben and Amy, this post brought tears to my eyes... Not of sadness for Benzens condition, the tears are de to being absolutely overwhelmed by Ben's strength, love, dedication to family, and fearlessness. Your family amazed me once under the worst circumstances, now you show Those NICU nurses what you are made of! Also, all three of your children are gorgeous and have and will touch others lives in amazing ways. Just as you two have touched mine...there is a longer story here, I'll message you that sometime.
ReplyDeleteBen and Amy - Ben, I'll ask you this again "when did you grow up?" what an amazing man you have turned into. Meg told me a bout the blog, and what a experience reading it. I'm sitting here with my tow healthy grand daughters and look at them with new eyes, I am blessed. I feel a special connection with you and Amy because of our shared experiences and want you to know that I have been praying for you ever since meg called and said "you have to pray and you have to pray NOW" I totally understand your new 100%, and your 24 hours. My father's loss has hit me harder than I thought it would. Your words are an inspiration. Funny where help comes from. Thanks.
ReplyDeleteLove
Josie
Ok, so what happened to spell check? Needed a little comic relief
ReplyDeleteBenzen,
ReplyDeleteI'm so sorry that you have had such a rough start into this world. I hope you find comfort in knowing that God has chosen the best parents in the world for you. Your Daddy and Mommy are two of the strongest and most caring people I have ever met. I have no doubt in my mind that they will do everything in their power to help you thrive and reach your full potential. You have family and an entire community that will help you along the way. You have only been here a few days and you have already inspired so many people just like your big sister Remi. Sending lots of love and prayers your way!