Okay, I’m not in Seatel, But, it’s been several weeks since I’ve had a full nights sleep - if not a couple of months now. I feel like I’m back in basic training because of the physical, mental and spiritual challenges associated with lack of sleep. I’ve been struggling to hide my exhaustion at home, church and work, but lack of sleep is adversely affecting everything now. But it’s been several weeks since we’ve had a good night’s sleep. This has been a recurring problem since DD’s birth.
DD was born with Cutis Marmorata Telangiectatica Congenita (CMTC). CMTC is problematic enough by itself. But she has a few different types of vascular malformations that cover her entire right leg and private areas. Problems include abscessing tissue, ultimately leading to bleeding. The main problem is the location of the abscessing tissue. It’s particularly uncomfortable if not painful when it begins to peel leading to infections. The doctor told us not to clean diapers really well because it makes it worse, but rather just clean lightly and put globs of Zinc Oxide cream over the entire area. It requires continuous care and easily flares up unexpectedly for many reasons. She’s terrified of bowl movements. Other symptoms include cysts on her ovaries and kidneys requiring annual monitoring. Bluntly, it encompasses all of her private areas. Top this off with eczema and you have a child with a lot of tissue issues. The doctor’s says that they can do something about it later on when she’s older. I have a feeling the fix will be skin graphs.
Well all of this causes a great deal of discomfort and pain so she wakes up throughout the night crying for help. So we seem incoherent and snappy from lack of sleep. Sleep deprivation doesn’t work well with me. DW is also as exhausted– if not worse. DW takes care of her mostly because she works from home and can fake sanity better than me at work where I have to face people. The tempers flare when we’re so tired and stressed. But we’re much more civil than those couples that just don’t get along. She’s my sweetheart. Leaving DD in a nursery always gets lots of negative attention from people suspecting neglect. Some think it’s a bad diaper rash in need of care. Talk about judgmental eyes from well intentioned people. We always leave extensive information with people about her condition first so they do not panic and second so they know it is normal for DD.