A Month Ago Today

It seems too unreal to me that only one month has passed since we heard the worst words ever.."she tested positive". The mind is a beautiful thing because although I know there was tremendous pain and my memory is clear as to what occurred that day, I can't actually feel the severity of it..that particular pain has dulled. So much has happened in four weeks.. I feel 10 years older and whole lot weary. Yet my daughter gives me the strength to get out of bed everyday. Bella has been on her anti-seizure medication a little over a month and I have to believe that all the progress we have seen is attributed to it working. Her little victories give us so much hope. Without hope I don't know what we would do.

In the past 4 weeks I, along with my family and friends, have cried, prayed, laughed, loved, feared, yelled and screamed. So many emotions, so many days of "what's next?". I find that to be the hardest thing right now.. living day in and day out with the "unknown". Sometimes I think it may be a blessing since I can stay in the moment without projecting and dwelling on the bad stuff. Not to say I am really good at that... there are moments when I let that speed train take me to places I really don't want to be. But I am reminded by my husband to stop, get off the train and enjoy each day with Bella in the place we are at right now.

If I am being honest there are days when I am just tired of being positive and I want to just cry with self pity. There are days and moments when I am just plain angry. Why my daughter?? Why my beautiful, sweet, innocent daughter? I want so much for her, I want her to have all the joys that life offers to everyone else's daughter. I don't want her to struggle and feel pain and have to fight overwhelming fights. I dream sometimes that I find her standing up in her crib smiling at me. I dream sometimes of her saying "Hi Mommy!". Faith is such a hard thing. I always felt I had faith and I have always believed things happen for a reason. But I am at a loss with this.. what reason could there be for this? What reason would make sense that my daughter may never walk or talk?

I often feel a tremendous pressure to remain "up" and "Positive" for those around me. It hurts too much to see my family and friends worry and hurt over this. We all have so much to carry that I don't want to be an extra burden to them. So instead, I write these words to release some of it.

I was also reminded yesterday by two very very special women in my life that I can turn to them and say exactly what it is I am feeling. Often hard for me because I don't like asking for help, never my strong suit..most often to my detriment. So I promised them I would reach out on those black days and I am going to work at doing just that.

Ahhh.. ok, enough about me... let's re-cap on my Angel's progress:
Bella has made tremendous progress with physical therapy as we have seen her really making strides with pulling up to her knees, pushing forward with her feet on a little bike, and a new development... she was standing leaning against the couch and she reached down with her hands to the floor and used them to help her sit. She would just kind of plop down and let gravity do its job in the past. My thought is that if she can figure that out, the next step will be the reverse... using her hands to help her UP!

Bella has gained 2lbs since her last doctor visit and that is wonderful news. The more weight she can gain, the stronger she will be. She has this insane appetite lately and I am hoping that it continues. We need a good 6-7 more pounds to get her where she should be. So bring on the meatballs!

Bella's speech still seems to be the slowest progress... but I have read that when children develop they usually work on one thing at a time, like gross motor skills versus speech. So we have seen so much progress with her physically perhaps we just need to be patient with the speech part.

We are making our list of questions for the team in Boston and I invite anyone who has questions after observing Bella to post them to me, or email me etc. I value everyone's opinion and truly believe "It takes a Village".

I know some of you have had trouble posting a comment. What this "free" blog doesn't tell you is that when you get to this site, in order to post a comment, you need to sign in. There is a sign in option up at the top and it requires you to sign in with a "gmail" account. Gmail is free so if you want to post you can simply create a gmail account you can use just for this. Or if you already have a gmail account you can sign in using that email address and your password for gmail. If you simply start typing without signing in, it won't let you post.

Looking back over this month I will tell you one thing... we have some amazing people in our lives. It amazes me the outpouring of love and support we have received. It has become so clear to us how special all of you are that have taken time out of your busy lives to offer your friendship, love and prayers. Your kindness has eased our pain and dried our tears and the gratitude we feel can never be expressed. It is my hope that you will somehow know what it means to us. Bella has given me a special gift.. she has reminded me of something I had started to forget, this world is full of caring and beautiful people.

So I look back at this surreal month and put it behind me, and I look forward to bright, hopeful days. I will take whatever comes, look it in the eye and say "you have no idea who you are messing with.. have you seen the people behind Bella? You haven't got a chance"