A day in my life

[alizesmom]

After yelling at you guys I thought it would be interesting to share a typical day with you and then you might share one with me. I am going to aim for a fairly normal day. I admit up front that if I didn't have nursing help, I would never survive.

midnight: check on kids and go to bed, Ciara is up playing, Alize is asleep. I have a video monitor in Ciara's room so I can see her at all times. I also have emergency buzzers in each room for the nurses to call me.

4am: Ciara's nurse knocks on door (means non emergency). She can't stop Ciara from punching herself. I give tylenol and rock for a little while then go back to bed.

8am: I'm up, check on kids (Ciara is still awake, Alize woke up an hour ago), pump Alize's shunt and do typical housework.

morning in general: I call to make appointments (usually 6 a month, not counting PT,OT,ST,VT) or check on test results. I also reorder prescriptions as needed and feeding/breathing supplies once per month. On hold with medical assistance to get approval for equipment. I am currently trying to get Alize's IEP straightened out.

1pm: Ciara is punching herself again then her oxygen saturation drops to 70s and she turns blue. I am unable to suction so I change her trach which is partially plugged. She improves immediately. I clean and sterilize trach for next time.

2pm: Ciara finally asleep. Nurses and/or I have bathed, medicated, tube fed, done PT etc, suctioned as needed.

3pm to 11pm: no nursing, DH and I do all of care, meds, treatments, play with kids and get them ready for bed. I notice Alize hasn't had a poop in 5 days and give him an enema. Ciara wakes up.

11pm to midnight: My time

Things I worry about the most: the kids will die of their problems. Ciara will get another trach infection, Alize will have another prolonged seizure or his shunt will fail and we may not be able to find a place to put the next one. We will never figure out what is wrong with Ciara and it will turn out to be degenerative. That we will never find a way to communicate with Ciara.

My biggest frustrations: when I talk about Ciara's sleep problems, people think it would be solved if I just made her sleep when I wanted her to, my family who won't acknowledge either child, living with a suitcase always packed in preparation for the next emergency, knowing the only people who halfway understand what we are coping with are online and we will never meet.

My biggest joys: Alize's smile, Ciara's face lighting up when I enter her room, seeing Alize hold his head up for 30sec, seeing Ciara concentrate as she tries to walk with her walker, sitting on the double recliner with DH and both kids, hearing the rare time that Ciara says Mama.

My biggest supports: my faith in God, my DH, my grown children and my online friends.

Now, tell me about you. Karen

 

[ireland_nicole]

Karen;
Thanks for helping me keep it in perspective. Although my kids medical needs are not so significant as to require private nursing care, I can relate to the 24/7 stress of raising kids where you never know minute to minute what's going to happen. I can't even write down a full 24 hrs., I'd get depressed- although I can tell you in just one hour today, my DD had a full meltdown as we were opening worship at church (which was especially awesome, since I'm the worship leader) and then my DS refused to leave and hummed and rocked through the sermon- although he was listening, b/c every time the pastor asked a rhetorical question, my DS answered in full voice. Pastor joked that he was going to muzzle him (at least, I think he was joking). Then when we got home, DD tried and almost succeded to push DS down the stairs while I was using the bathroom. So all in all, a good time was had by all. I am grateful for all my kids can do, but I empathize with the frustration and powerlessness that I imagine you feel. I think all of our days would look different, but they would all share a lot of similarities, too.

From my own experience and that of friends w/ kids who have ALL kinds of special needs, I 've found (for us at least)
1. We all feel like we're somehow failing.
2. We all sometimes question GOD (seriously, what was he thinking?)
3. We all get frustrated
4. We all love our children
5. We all have moments when we love our children because we choose to, not because it's easy.
6. We all sometimes wonder what our children's lives would have been like without their disabilities.
7. We all cry
8. We all hurt when our children hurt- and when we think about the hurt they will have someday.
9. We all have to grieve the milestones that they will not reach, the expectations they will not meet- and then move past that to rejoice in the milestones they will reach, and the expectations they will exceed
10. We're all scared of the future
11. We all take time to remember that we're not alone.

I don't know if this resonates with your experience, but I mention all this b/c I hope it helps. It has made a huge difference to me to remember on the hard days that I'm really not alone.

 

[mechurchlady]

They say that a person should walk a mile in another person's shoes but most people could not walk a mile in my shoes or the shoes of many moms on this board.

That list is like me and mom. Just like my list with mom but for #9. Big hugs.

 

[SueM in MN]

I haven't had enough time to write on this part of disABILITIES recently, but I do read and do thank you for writing this.

 

[mistymouse5001]

Karen;
Thanks for helping me keep it in perspective. Although my kids medical needs are not so significant as to require private nursing care, I can relate to the 24/7 stress of raising kids where you never know minute to minute what's going to happen. I can't even write down a full 24 hrs., I'd get depressed- although I can tell you in just one hour today, my DD had a full meltdown as we were opening worship at church (which was especially awesome, since I'm the worship leader) and then my DS refused to leave and hummed and rocked through the sermon- although he was listening, b/c every time the pastor asked a rhetorical question, my DS answered in full voice. Pastor joked that he was going to muzzle him (at least, I think he was joking). Then when we got home, DD tried and almost succeded to push DS down the stairs while I was using the bathroom. So all in all, a good time was had by all. I am grateful for all my kids can do, but I empathize with the frustration and powerlessness that I imagine you feel. I think all of our days would look different, but they would all share a lot of similarities, too.

From my own experience and that of friends w/ kids who have ALL kinds of special needs, I 've found (for us at least)
1. We all feel like we're somehow failing.
2. We all sometimes question GOD (seriously, what was he thinking?)
3. We all get frustrated
4. We all love our children
5. We all have moments when we love our children because we choose to, not because it's easy.
6. We all sometimes wonder what our children's lives would have been like without their disabilities.
7. We all cry
8. We all hurt when our children hurt- and when we think about the hurt they will have someday.
9. We all have to grieve the milestones that they will not reach, the expectations they will not meet- and then move past that to rejoice in the milestones they will reach, and the expectations they will exceed
10. We're all scared of the future
11. We all take time to remember that we're not alone.

I don't know if this resonates with your experience, but I mention all this b/c I hope it helps. It has made a huge difference to me to remember on the hard days that I'm really not alone.

You said it