Depending on who you talk too, there are anywhere from 3-7 stages of grief. Denial, anger, bargaining, depression and then acceptance. I think I’ve finally reached acceptance - although I'm still angry and depressed.
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.”
Monday morning, Kaleb started the morning throwing up. What does it mean? Is he sick, or is he having trouble tolerating his feeds? I don't know the answer, so I guess, I have slown down the rate at which he receives his food and yesterday there was no throwing up. Is it because I slowed it down, or did he have a bug that has passed through his system? Every time he gets sick, I wonder if this is it, if these are the last days I get to hold him, snuggle him, kiss him so I whisper in his ear and beg him to stay with me. Then as I watch him struggle to cough up the junk that is stuck in his throat, I feel guilty for making that request. As I roll the suction tubing down the back of his throat to vacuum up the mucus plug that is causing him to work so hard to breath, I again feel a wave of guilt. I listen to his little moans that tell me he's just not feeling well, I hold him in my arms and feel so terrible for wishing him to stay because I know he'd be better off to let go, and go home to Heaven. I know these things but I'm so selfish that I can't tell him it's ok to stop being so strong, and to stop fighting.
I don't sleep well these days, actually I haven't slept well since pregnancy. When Kaleb was born I was working as a detective in child abuse and had been involved in numerous SIDS deaths - so I was even more paranoid than I was when I had Christopher, I didn't know the things then that I do now. But, since diagnosis day, Kaleb has been sleeping with us, he has too, and I wake up several times during the night to roll him over. Then I lay there for what feels like an eternity trying to get back to sleep and my mind just plays over and over what I know is yet to come. Instead of thinking about summer vacation, I'm thinking about what songs, and pictures we'll play at his funeral. When we went to the cemetary to pick the perfect spot for his final resting place, I just kept thinking about how wrong all of this is, he's supposed to bury us. Living out each day in fear, knowing what's going to happen and not knowing when is exhausting. I feel like a little girl again, afraid of the dark and the monster in the closet, I know it's there, I can see it's eyes every now and then taunting me and reminding me that it's there, waiting, waiting to take whats left of my heart.
When I get up in the mornring, I don't put on make-up and do my hair, I put on my "strong" face, put up this facade so that people will not see what a mess I really am. I try to ready myself for whatever the day may bring me. People think I'm strong and I get a lot of "I don't know how you do it", and the answer is simple, I do it because I have too, because I love Kaleb and he needs me. What I don't know is, how am I going to "do it", when he's gone. When I no longer have a reason to be strong and to fight, what happens then? Christopher doesn't need his mom anymore, so then what? Will I continue to appear strong, or will I fall apart? I know that no matter how hard I try, my life will never be the same. I will never feel the way I did prior to diagnosis day - I am a different person and only time will tell what that really means. People always talk about the light at the end of the tunnel, and that's supposed to be a good thing - but I fear that the light at the end of my tunnel is the freight train that is going to flatten me.