"How do you do it Jenni?" my friend asks. "how do you get up day after day and be such a great mom?" My answer, "What keeps me going, is my love for my son; when Bryce is gone someday, I can look back and say I did everything I could to make him the happiest and most loved child ever."
that being said, being alone at the hospital with the nurses learning to use bipap is very hard
Today is 9 months exactly since we got his diagnosis - it is true - I am much more
at terms with this disease- yet moments like learning bipap is not easy
Last night watching Bryce cry and scream as they introduced us to the bipap was really hard. We took a break after awhile and the super great team coached me through the steps. In theory, this machine helps the child breath better especially when used at night; bipap will aid breathing when he initiates, but if he doesn't it acts like a cpap and forces air into lungs - He tolerated it pretty well, but its a huge life-style change. Our pediatrician has been discussing this with us since the end of April - so its the most logical next step in the care plan.
I am not angry, though I have reasons to be - I was angry at this disease from Sept, till about January. Now, that I have my mom's group, a church that is super supportive, and great friends, coping is easier. My friends tell me my greatest strength in life is being positive, and forgiveness. There really is no other way to live life! Bryce is my joy! My life!
The past couple of weeks its been great to have so much love and support from friends; have Kara on occasion come and stay with us. Love to you all. Thanks St. Mathews and thanks Trish. Thanks neighbors, thanks Teresa, Claire, Martha!! I am grateful my smiling child with good happy energy. I am grateful for Laurel and Cher - their new mom energy keeps me so motivated. Surprisingly, Steve came last night from 7 to 8 to play and be with Bryce- short visit, but I am always delighted to see Bryce have daddy time.