Anticipation

Have you ever received bad news that you wanted to blog about yet putting the words in writing for some reason made it seem more real than you would like? I know it may seem silly but for a little over a week now I have been really struggling with this. Many of you, especially my followers are twitter, knew Gab went in for her big test on the 11th of December and have been waiting for me to post the results. I have briefly posted tweets about what happened and even took the time to upload the video from that day and put together a vlog… just not post it. I have such a hard time putting myself out there, so to say. Writing my feelings on such a sensitive subject makes me feel somewhat vulnerable and I DON’T champix v zyban like to feel vulnerable ;) To better explain myself, I guess I am one of those people who would rather hold it in than feel as if I am throwing a self pity party, no matter what the circumstance is. I am sure this is all my own perspective on the situation and probably the real truth behind my subconscious is that I just don’t want to type out the results or talk about it with many people b/c DANG IT, I DON’T WANT TO BELIEVE IT! Putting it all out there is allowing myself to admit it is real. I remember last year when Gab went into the hospital to have brain surgery I created an awesome site for her. I sent it out to everyone who was in contact with us including family, friends, co-workers and they each sent it on to someone else. There were so many people commenting and reading her story it was great. We received plenty of comments sending along prayers and people saying they were touched by reading Gab’s progress and seeing all the photos I would post. Shortly after she started having problems in the hospital I quit updating. I was going through so much that writing about it at that time was not something I could do. It was depressing enough to watch my daughter go through all of it but to put it into words was even more difficult. I look back now and wish I would have continued with her site. Many people throughout the past year have asked how things went and what happened. Family and friends miss seeing all the photos… So now even though it has been over a week, I am determined to pull my head out of the sand, try to fight the depression, have a little faith and publish this post!

I also won an awesome FLIP video camera from Katja , in one of her blog giveaways, to whom I owe a vlog post. So here you go with my very first vlog!


{Without further adieu}
Gabby’s video update. celexa alcohol warning

For those of you with a million questions… I know the video was vague for someone who hasn’t known us for a year or doesn’t know the whole story behind Gab’s surgery. I will do my best to sum it up. Gab had a stroke during utero and therefore was born with Cerebral Palsy. At nine months old she started having seizures. With the help of steroid shots, seizure medication and lots of therapy we had been able to keep her healthy and active until she was about 4. Her seizures at this point became monthly, weekly and then daily. Since she had brain damage caused by the stroke her epilepsy was only going to get worse. The Neurosurgeon informed me we had to do surgery to remove the abnormal brain tissue in order to stop the seizures, the convulsions were lasting 20 minutes each time and she could no longer even go to school. The surgeon believed if we did not remove the left side of the brain (which was the damaged part) then eventually her right side (good side) would suffer stress and start having seizures as well. Once he approached me about surgery it was scheduled within two weeks. Since we did not know if she would walk or talk after surgery the Make-a-Wish foundation sent us to Disney World for the first week before surgery. She was a little over 5 1/2 years old when she had the first brain surgery. The whole process did not go as the doctor wished and she developed infections in the blood stream which kept us in the hospital for over four months straight. The end result was the removal of the left side of her brain. We were not able to have an EEG to see the results of surgery until December 11th of this year, one year after her final surgery. They had to allow the brain a year to heal to show an accurate EEG test without the stress in the brain waves from surgery. She has continued seizure medication everyday since surgery. During this recent test we hoped for the best results, a completely clear EEG so we could stop meds. Unfortunately what the doctor was trying to avoid from happening, happened. The seizure activity has now moved to the right side of the brain. There is nothing left for the doctors to do except continue her on medication. Since she is now only 6 years old and already tried many medications we can only hope for the best. She only has half a brain left and really can’t afford for the seizures to cause much more damage. Within the past month I have seen at least two episodes of seizure activity which really scares me. This test meant a lot to us and the end results were supposed to make us feel like everything we have been through was worth it. It was supposed to be a sign that things were getting better and hopefully one day soon I could work outside of the home again and stop all the crazy appointments that we have weekly. Apparently that is not in the cards for me at this time. I am trying to keep up my spirits and hope that my working from home will perk up to become more successful soon. Did you hear about Tom Cruise’s daughter Suri and her Ladybug Shoes on Oprah? Well reading the post on Katja’s blog has really given me hope that something BIG can happen to a work from home mother who blogs.

Happy Holidays!

Comments

  1. Erin says

    I’m at a loss of words for what to write. I dont even have words for how I feel after reading your story, let alone words to leave for you. and I know nothing I do say can do anything to help the situation. But I want you to know, Your strength is truly remarkable. My deepest sympathys are with you and your family. I know you probably have tons of supportive people and I know what youre going through and feeling is something I couldn’t even possibly begin to understand but if you ever need to just talk to someone, I would be honored. My family will continue to keep your family in our prayers. Merry Christmas.

    ~Erin
    Twitter: @erinjeany
    ejsmomej[at]gmail[dot]com
    http://ejsmomej.blogspot.com/

  2. Claire says

    Oh honey, I had no clue! I am praying so hard for you and for your children. I can not IMAGINE having a sick child and being a single mom… even though I am disabled and a single mom. Please email me, call me, anything you need to do to help yourself get through this. I am here to lend and ear to cry to to vent to… what ever you need.. I am here.
    I pray that she gets better somehow.. a miracle is what we need and I so hope she gets one this Christmas!
    -Claire

  3. Sonja says

    My heart goes out to you, and it amazes me what the human spirit can endure. I don’t feel you should think you were slow to post your news. We go at our own way and pace.

    Best wishes to you and your family.

  4. Katja says

    I am so sorry. There are no words to describe what I feel right now, and I can not even imagine what you are going through.

    A huge hug to you and I will keep your family in my prayers. If there is anything EVER that I can do to help, don’t ever hesitate to contact me.

  5. Petra a.k.a The Wise (*Young*) Mommy says

    I am so sorry that you and your little angle have to go through this. It just doesn’t seem fair that children should ever have to be sick or suffer.

    My thoughts and prayers are with you guys and if you ever need ANYTHING, please let me know. **HUGS**

  6. Connie says

    Hugs to you and your beautiful family. I’ll keep you all in my thoughts and hope for the best for all of you.

    Call on me, any time, if there’s anything I can do to help.

    ((((HUGS)))

    Connie

  7. Rebecca L. Buscemi says

    What a great little girl with a wonderful spirit! I pray for you and your family. I’m sorry that your family has to go through this; especially during the holidays. As you may remember, my little girl’s name is Gabby also and everytime you said her name; my heart broke a little more. I can only imagine your pain. Take care and stay in touch.

    Rebecca (@rbuscemi)

  8. Heinous says

    My most heartfelt wishes for health and happiness. She’s a beautiful girl. It’s so hard to see any child to have to go through any form of illness. You and you family are in my thoughts.

  9. showingoffmyassets says

    Both you and your little girl are courageous. You have taken a difficult situation and you are making the best of it. Prayer is something that everyone can do and reaching out can always put even more people in your corner praying for you. Christmas is the time of year for miracles and you can always wish for one.

  10. Busy Mama says

    I don’t know what to say in response to this post, I can not imagine, but keep hope and know that my thoughts are with you and your beautiful family! Your children look so much like you and are so beautiful (and handsome) I am a friend always!! Big hugs to you and yours!!

  11. Mama 4 Kids says

    You are so strong, and no one can blame you for not wanting to put the results into concrete words. I can never imagine what you and your family are having to go through, but I am thankful that you are willing to share (even if not in that moment). It is helpful to others to know what struggles you are having, and only you can tell it like it is. Merry Christmas to you and yours! And a Happy New Year!

  12. The Johnson Family says

    Dwan I am so sorry you guys didn’t get the results you have hoped for. You and Miss Gaby are so strong, courageous, and I admire both of you girls. Seeing your child like that has to be heartbreaking. Gabby’s wonderful spirit is so inspirational. Through everything she always has a smile on her face, and acts silly. I will keep your family in my thoughts and prayers!! Just know, even though it’s hard, that the Lord will never give you more than you can handle. All of this has a purpose, even though we don’t know his purpose yet! **BIG HUGS**

  13. Sarcastic Mom (aka Lotus) says

    I’m so sorry – just read this post. You guys have one through so much!
    You’re in my prayers.

  14. daddybookins says

    After reading your NYR post and then this as a follow up….not to sure what to say. It is hard to express your thoughts and especially those of this nature so close and personal! I couldn’t come close to understanding the stresses you, Gab or your other lil one’s are going through. My thoughts, sympathy’s, heart goes out to you and your children!! Keep your spirits high in ’09!

  15. Kristin says

    I’m with everyone else I’m at a loss fpr words. She’s so amazing and beautiful!

    Please do let me know if you EVER, EVER EVER EVER okay a million evers need anything!

    Anything is possible for a work at home mom who blogs! Esp. one as bvrave and as strong as you!

  16. DJane says

    Wow! What wonderful words from all of you. I feel so blessed to be a part of such a great network of people online. I really appreciate all the kind words and prayers sent our way. I know Gabby can use them all. Thank you to everyone!

  17. Cindy says

    What a wonderful post. I am amazed at your strength. I am an ER doc and I see mom’s come in with their sick little ones and I cannot imagine what you have been going through. God bless you and please keep up the posts. We are all pulling for your, your entire family and your beautiful little princess!

  18. This Military Mama says

    Wow. You are so strong to be able to share this with us.

    I’m at a loss for words. I want to say something that will help lift you up but I’m not sure what that would be.

    Please know that if you ever need anything, don’t hesitate to ask. I am praying for you and your family.

    *hug*

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