I may have mentioned a time or two before that music plays a big role in my life and how I cope with things. This week I bought George Strait's CD....with the song The Breath You Take.
Music plays such a huge part in how I cope. I know, I just said that, right?!?!? I spend countless hours in the car. Usually back and forth to Children's Hospital Boston, or to football, cheer or baseball. My car is my house. Or as Bryan so often refers to it "the rolling dumpster." LOL!!! It's so true though. You try having four kids in a car all the time.....add to it, one who pukes constantly. It's not a pretty sight!! Anyway, I digress. Sorry.
This song has hit home for me in so many ways. I know we have slowed our pace tremendously after the birth of Brigitte. Tremendously. I can honestly say, that we are a family that really does enjoy so much of the little stuff. Having said that....the last few weeks have taught me that I haven't slowed down enough.
September 8th will be a day I won't soon forget. Although in many instances, I wish I could erase it from my mind all together. It was 12 days after my son had major brain surgery. We were faced with our scariest night yet. We were losing her. Mine and Bryan's biggest fear. It was on our doorstep. We said our goodbyes. I kissed her goodbye. I took pictures. I made videos of her whispering "I love you, momma," because she was to weak to yell it in that loud boisterous voice we have all come to love and hate at the same time!!! I had to let her go from my arms and let Bryan hold her because I knew if something happened, he needed to hold her and love on her for the last time too. No parent should have to do this....especially not multiple times like we have.
I don't know what her future holds. I really don't. My gut tells me it isn't a life like my other kids are likely to live. My heart tells me, I can't ever let her go. I told her before they took her away from me that she needed to fight. That we had so much left to do. My heart told me that she has fought so hard for so long and that I couldn't blame her if she was done. I am so thankful that she decided that life is still worth fighting for. It blows my mind that despite all that she has gone through, that she believes that too. I don't think that I would. I think she is stronger than anyone I will ever meet. She knows that life on the other side will be so much easier. So much more beautiful. Instead she chose to come back and struggle because her mommy, daddy, brothers and big sister need her so much more than she needs us. For that, I will be FOREVER grateful.
Brigitte is home now. We go to Boston a few times a week. She even bought herself a ride back to CHB by ambulance the day after we got home. Maybe she's changing her mind. I don't know. All I know is that she is still here. Still fighting.
We run TPN (total parental nutrition) through her central line 7 days a week for 12 hours a day. It's keeping her alive. Her bowel sounds are faint. We don't know what this bowel is going to decide to do. I have my theory. Let's just hope I'm wrong.
We are managing as best we can at home. The kids all know that life isn't the way it is supposed to be. We are just making the most of each moment the best we know how. We are also blessed to have so many people coming into our lives because of our struggles. There is still so much good out there. Londonderry is proof positive, just ask the Londonderry Wildcats.....and so many more of my friends who are determined to make this as easy as they can on us. We will never be able to show our gratitude the way it truly deserves to be shown. All I can say is that we count you in our blessings each and every night.
I should also let you know that Sean's follow-up wasn't what we had expected it to be. He is still continuing to have headaches and numbness in his hands and feet. He is going to have another MRI on October 12th and follow up with Neuro-Surg right after. Dr. Warf thinks he may need to have a second brain surgery. We have talked to Sean at length about this and he just wants his headaches to go away. Who can blame him. We are gearing up for this as we wait for those bowels of Brigge's to wake up!!!!
We'll get through. We always do.
“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.”