50 Reasons Why

There have been a number of instances over the past 6 years when I've tried to explain to a friend, neighbor, family member or medical professional what is different about my life and felt like the person I was talking to really didn't understand what is so different, stressful or demanding about it. I'm tired of saying it so I'm putting it in writing. This list is for all those people including my husband since he recently asked me the unbelievable question "How is our life any different from anybody elses?" I guess he's so used to it he can't even see it anymore even though he is in the thick of it with me and does some of this stuff regularly.

Let's see....on top of the normal things everyone has: cooking, cleaning, laundry, normal child cares and parenting issues, homework,  shuttling kids to activities and sports, making sure the kids have clothes (if only they would stop growing), preparing for holidays and birthdays, bill paying, maintaining the yard and house and extreme work schedules (he does work far more hours than the average person not to mention his sound job hobby over the years ) and normal life stresses that everybody has (yes we have those things too) there are these 50 things:

1. Suctioning and wiping up trach snot (in addition to nose snot) all.day.long. I'm tired of being a human Kleenex.
2. Carrying an "emergency bag" everywhere we go outside the home AND from room to room when we are at home. (ie. suction machine with spare trachs and supplies) It's like a ball and chain that's noisy and stinks.
3. Having to help her on and off the toilet many times a day and wipe. Plus diapering. This takes time and is unpleasant. Duh! That's why parents hate diapers and potty training and look forward to the day their child can do it themselves. Just in case it isn't obvious it gets harder the bigger the child is. (Normally by age 4).
4. Lifting - Her and the wheelchair in and out of a car. In and out of bed. On and off the toilet. My back hurts all.day.every.day.
5. Lack of freedom. Not being able to go anywhere (with her) easily or quickly because a) she cannot walk or even stand without support b) trach/g-tube/diapering stuff that has to be brought along.
6. Having to explain to people that a disabled child DOES qualify for handicap parking.
7. Hours and hours of spoon feeding and other oral motor work (past age 1 year).
8. Tube feeding 5 times a day (2 are water boluses).
9. Preparing special foods.
10. Washing feeding equipment (syringe, extension set, blender, spoons, oral motor tools etc).
11. Dressing and undressing in the morning and for bed (past age 2).
12. Put on orthotics and shoes (past age 3).
13. Years of doing leg stretches to alleviate tightness from cast and irritation from scar tissue.
14. Working with her on balance, standing and walking.
15. Bathing (past age 4) being mindful not to get water into lungs.
16. Brushing/fixing hair (past age 4).
17. Brushing your child's teeth (past age 3.)
18. Time spent programming electronic communication device (or other communication tools).
19. Learn, teach and use sign language.
20. Constantly monitoring valve/cap use to ensure child has a "voice" plus encouraging use of "voice" (because she can remove it).Working daily on use of communication tools (oral, sign & device). Not being able to communicate with your child is difficult, sad, and causes a lot of lost learning opportunities.
21. Wiping post-surgical crust out of eyes daily (still) & cleaning her face.
22. Always being stared at when you are out in public and having to answer strangers' questions.
23. The pain of knowing your child can't blend in and that some people will never see her value as a person.
24. Worrying about your child's future (who will provide care if you can't, what will her life be like etc.) and all kinds of other things. There are a LOT of reasons for emotional stress.
25. Monthly order of medical supplies and diapers + putting it all away and figuring out where to put all the "extra stuff" without it taking over her room and the house. Dealing with mix ups with supply orders.
26. Managing a nursing staff. It is a bit like having part time employees.
27. Sterilizing medical suction equipment, speaking valves and caps.
28. Replace equipment parts (tubing, chambers, water bags etc.)
29. Financial stress - even with Ainsley being on a waiver there have been many times we're worried about reaching an insurance limit, nursing not being paid, claims not being paid and there is often therapy and/or equipment I would like to buy that we can't afford.
30. Researching better equipment (supplies, walkers, wheelchairs, special beds, suction machines, oximeters, humidifiers, CPAP etc). Plus getting pre-authorization and payment.
31. Waking up in the middle of the night to alarms or suctioning (on top of normal child wakings for 3 kids).
32. Constantly monitoring breathing sounds day and night (yes I can hear her in my sleep).
33. Filing/organizing medical reports and records.
34. Scheduling and following up with doctors/surgeons/therapist/nurses.
35. Obtaining preauthorization for expensive treatments & following up on insurance payment (seriously, right now we have an outstanding $20K claim from May.)
36. Negotiating with schools to form a solid IEP. Attend meetings. Review and sign, it's a legal contract.
37. Constant educational challenges. TONS of time spent trying to teach things kids normally pick up on quickly. (the names of things, animals, alphabet, numbers, colors, shapes etc.) The frustration of it not helping, the knowledge that if you don't try you'll never know if it would have helped.
38. Putting your child to bed using hospital like medical equipment (it does take longer.) and monitoring her when she's asleep (even after the kids are in bed we are tied to the "baby monitor".)
39. Spending a total of months of your life in the hospital, post-surgery.
40. Countless tears shed over the horrible surgeries my child must endure or their result.
41. Research alternative therapies (when conventional ones don't work.)
42. Clean crust off trach and stoma (hole in neck.) Clean G-tube & stoma.
43. Schedule and attend many doctors appointments & tests (on top of all the normal pediatrician appointments.)
44. Attend weekly therapies (Ainsley started therapy when she was 4 months old.)
45. Perform at home daily therapy "homework" (a never ending source of guilt when you don't do it).
46. Educating myself about her various medical conditions and looking for information that may help change the outcome.
47. Knowing that I will likely be in a caregiver role for the rest of my life and that none of this stuff is going to end.
48. Juggling providing all this special care. It is difficult to do all these "little things" while at the same time attempting to raise 2 other children. My attention is constantly divided. Something always suffers.
49. Time spent supporting other parents in similar situations, we are each other's life lines.
50. Explaining why yes, actually my life is a bit different from the average moms, just to have people "not get it" or reply that "everybody is busy".

P.S. And don't you dare tell me "some of those things are things that everybody does with their kids" because diapering, dressing, bathing, grooming, feeding and teaching a child during a normal temporary phase of development is NOT THE SAME emotionally or physically.  It's more like caring for an aging parent...And think about it...People look forward to their children growing older because the early years (1-4) are hard. They don't get easier just because you've been doing it longer. It's been nearly 12 years for me, of having "young children", and I'm tired. I love Ainsley and my older kids more than life itself. But it's still tough. Imagine your busy life. Now imagine on top of that caring for Ainsley and this list. Still think it would be "easy enough"?  If so I challenge you to come do it for a week or two so I can go on a real vacation and then we'll talk when I get back.  Any takers? Step on up.