Christmas, Crohns and a lot of parenthesises

Christmas was great, I couldn't sleep for a week I was so excited.  Being a parent creating the magic is amazing!  After the magic was set up Joel and I cuddled in bed wagering if Lydia would remember that it was Christmas when she woke.  I went for yes, Joel for no.  By far the longest night of the week, I kept listening for sounds in her room, if she was not up by 7 I would have to intervene.  6:30, I hear stirrings, quietly I go into her room to make sure she is warm and was greeted by wide open eyes.  Lydi, are you awake?  DID SANTA CLAUS COME?!  I think so, lets go wake up dad and we can go check.  We both run into the room and jump on the bed.  Joel said it's too early, I say- 3:00 would have been too early, this is perfect.  I get the camera ready and wait downstairs to see the sweetest look of surprise and wonder on her face.  I love this!  We had a wonderful Christmas morning, Orange rolls for brunch.  And an elegant Christmas dinner with sparkling grape juice in goblets for all.

Tonight I took the 2nd dose of my new medication- Humira.  Actually maybe my fifth and sixth dose.  The first series two weeks ago was 4 injections, today I took 2 more and for the next year or more, I will take one injection every 2 weeks.  Back in April when I wasn't doing well my doctor had suggested I start another medicine in the same class of TNF blockers called Remicade.
(HUMIRA is part of a class of medications called TNF (tumor necrosis factor) blockers. These medications block TNF, a protein in your body that can cause inflammation. HUMIRA blocks excess TNF-α in your body which helps reduce the inflammation that too much TNF-α can cause.)
Every time I thought and prayed about taking Remicade (an infusion done in a physician's office that takes several hours, with chemo-like reactions after wards) I had an extremely panicky feeling and knew, with out a doubt, that if I took that drug I would die.  So obviously I didn't take it, but my disease has progressed to the point that no other medications are working for me any more.  Surgery is an extremely last resort, like very last resort so we revisited the TNF blockers.  This time I felt peace, not about Remicade, but about Humira. 
I finally feel like I might have come upon the miracle drug for my Crohn's Disease.  The medicine took 2 weeks to come into the pharmacy, a very LONG 2 weeks that meant I was getting more and more ill.  I was really concerned that I was in such a flare that I wouldn't come off of it right away.  But the day after my 4 injections, I felt a difference.  And the last two weeks have been an improvement, so much so that I was counting down the days until I could inject again even knowing how painful it was going to be.  The injection is the most painful injection I have ever had, think of a dull blade slicing you very slowly. 

I am so excited for this new stage that I feel our family is stepping into.  I feel the real Bonnie emerging.  I feel like I have been hiding within myself trying to deal with the daily pain, fatigue and other battles that Crohn's survivors have to deal with on a regular basis.  Only rarely did I feel myself come out, on the days that I felt good could I feel the joy in my soul pushing out the walls of our home.  Our home is so much happier when I am able to just be me.  Joel reassures me constantly that I am a good mom, and that my excitement over everything that I do adds so much to our home.  But, knowing who I really am inside and how much of that is hidden by the cloak of my disease often causes me guilt of how much more I could give to my family, but what I am unable to do.
I get accused by everyone who knows me that I hide my pain to much, that I need to let them know what is going on, but that is not who I am.  I am grateful to be healthy enough to not be bedridden, and not be on the cursed TPN anymore.  If there is anything that has been hiding, it is the real me who LOVES life, loves to have fun, loves to be outside, or anywhere really for hours at a time. Someone who has energy for more that 2 hours at a time.  Someone who loves to be spontaneous and not have to plan and prepare for everything. 
So this is the "Christmas Eve" for me,  I am the child, and Heavenly Father is the loving parent that knows what is in store for his daughter.  He constantly gives me everything.  There is no word to describe the gratitude I feel for that.