I couldn’t stay in denial for very long. It’s hard to deny this disease because within only a couple months from diagnosis, the deterioration was very evident. The anger came at the same time as the denial, and it still lingers. I don’t understand why this is happening to him. Why a baby with a pure, and innocent soul has to endure this horrible disease makes no sense - this should be reserved for all the wicked people in this world, not babies! See, I get so angry just writing about it!
Then there’s bargaining, I would absolutely sell my soul if it meant Kaleb could live a healthy, normal life. As any mother would for her child, I’ve asked God to take me and not him….obviously there is depression. There is nothing in the world that will take this feeling away, my baby is going to die, and that is the most depressing thing a person can go through. I think that the anger and the depression are here to stay!
The last stage is acceptance. I sit here, day in and day out and watch him slip away right before my eyes and I’m powerless to do anything about it. Every time he gets sick, I beg him to fight, to stay strong, to get better, and I beg him not to leave me. This past week though, it occurred to me that I have to do so much for him every day just to keep him alive. All the medications, the breathing treatments, the VEST, cough assist, and sometimes oxygen. I watch him suffer through every illness, and even on days where is not “sick” he struggles to breath through all the gunk that is constantly in his throat. He survives daily with several rounds of deep suctioning on top of everything else…he is suffering, which is something I didn’t want to consider. So last week, I held him close to me and as the tears shamelessly rolled off of my cheeks and onto his head, I told him how much I love him and that I will never be ready for him to go but I cannot stand to watch him suffer. I told him, he didn’t have to fight anymore for me, that I understand there is a better “life” waiting for him. Does that make this any easier, absolutely not, as a matter of fact, even though I know it is the truth, it was the hardest thing I have ever said in my life.
I am still having trouble imagining what my life will be without him. There is a big hole in my heart now that is only going to grow bigger once he is gone. I feel empty just thinking about it. I ran across a quote the other day that I hadn’t heard in a long time and I think it’s very fitting, “You can’t have a rainbow without any rain.”