Thursday, November 3, 2011

Burden of Life

Wow. I don't even know where to start. It's been a rough week for me.
The weight of responsibility of raising a kiddo like eli has hit me hard this week. I'm exhausted. Every moment of every day I have to be ready to give every drop of his medical history in order with ALL of the correct info, all of his surgeries and procedures, every name and phone number of every doctor(35)/nurse(2 in home and over 40 in office)and/therapist(8), every medication with concentration, dosage and time, and every single drop of info about blood sugar, swelling, seizures, sleep, vital and EVERYTHING else. If I miss ONE single fact it can be my childs life. To some this may sound like overkill but it's not. This is life with a complex kiddo like Eli. I have to maintain PERFECTION. So far I've not missed a single detail. I've always remembered every single thing at the exact moment that I needed it. I've always been able to have it all right there.
That being said though I'm TIRED. Beyond tired. Exhausted. My brain and body are nearing the end of what they can handle. I have maintained perfection for 23 months and I'm soooo scared I can't continue to do it much longer.
I have lost every drop of me and I have become an extension of Eli. I am Eli. Every doctors appt, every therapy appt, every progress or setback...the doctors and nurses praise me for how good I'm doing, they remind me that I'm the reason that Eli is still alive. I wholeheartedly believe that BUT it's such a huge burden to carry. It's lonely and exhausting and painful. oh so fucking painful.
For some of you I know this post won't make much sense, for some of you I'm sure you'll be nodding your head with tears in your eyes. I totally get that. I would have never understood until I'm living this life.
I sit here and look at Eli and tears automatically come to my eyes, my breath catches, my heart skips a beat. This happens virtually every time I look at him. The bond I have with him is amazing and I'm sooo very thankful for that. The problem is at the same time I almost find it hard to breath because the weight of it all comes crashing down upon me in waves. Sometimes my heart hurts so bad I can hardly stand to look at him and I briefly have to look away.

No family should have to live like this. It's not just rough on me. It's hard on Bob and the oldest 4 as well, just in a different way. Eli is my primary responsibility, leaving Bob primary caregiver for the oldest 4. That's not to say that I'm not involved in their care as well, because I am. But primary doesn't fall on me. It can't.

The top of my blog says "We've got what it takes, but it will take everything we've got." This is so true. I know deep down in my heart that we will make it thru this, but I'm so scared to know what will be left of me. I don't know who I am anymore outside of Eli. I don't know what to do with real "non-medical" life anymore. Life IS medical, beeps, medications, abbreviations, diagnosis, schedules, vitals, and dme's.

Life is keeping my baby alive.


Terri said...

Heather, I am not going to pretend to fully know or understand every bit of what you live being Eli's momma because my Ben has not been as sick as Eli is. But I understand to the core of me what it is like to feel like you alone own and are responsible for ALL of it. I could recite that very story, and I have. Ben is 14 now, and while he is stable now I still fight the fear. I still don't fully trust everyone else with his care, with knowing what is best for him (even his dad who is my husband). It is even harder as he gets older and HE ignores what is best for him and I have to learn to let him (and others) make mistakes.

You DO have what it takes, of that I am sure. But do you have what it takes to let go just a little and let others take just a little of the responsibility off of your shoulders? I promise you that not only do you need the break, but others need to share the responsibility for the tough stuff. For many years I felt like the filter for everyone else's pain (I still feel that way), that it was my job alone to make everything ok and keep everyone healthy and happy...AND THEY LET ME because I could...except for me.

I'm not sure if this makes sense or not. Please take care of you - Eli needs you, your husband and other children need you, to be the strongest you you can be. Biggest hugs.

Stacy said...

Heather, I can not even fathom what life is like for you with Eli. I truly do not know how you do things and keep going. But I do want to tell you that you are a total inspiration to me. I read your blog every day for new info on how the family is going and I can tell you every time I read in awe at what you are doing. I think to myself, man this mom has it and can get all of this done with having 5 kids! I need to be more like her. Don't give up. You have to continue what you are doing for Tiny man. You have given him so much and I know that you will continue to give him even more! You guys are always in my prayers.