My apologies for not blogging for a while. I've had so much I've wanted to write about. I wanted to write Faith a letter about how Brian and I recently celebrated our wedding anniversary (has it only been 4 years?)....I wanted to write about how Faith got a nasty GI bug and we had to take her to the hospital to get pumped with fluids..this all happening the day after I had surgery on my leg and Brian was sick....I wanted to write about how we took Faith to the Zoo and it was disastrous. I wanted to write about how excited I was when there was a front page article on Amendment 51 in the newspaper this past weekend (we know the family featured) and how outraged I was when I read this article. I wanted to write how our Medicaid has been suspended and we are receiving bills totalling in the thousands and how this has made us so much more passionate about 51. I've had so much I've wanted to say and no time or energy to do it all.
About a month ago I saw a story on the Today show about a man who abandoned his 9 children at a local hospital under the protection of the Safe Haven Law. The TV segment was full of people critisizing him and the local government for not bringing charges against him. My reaction was quite different. This man had lost his wife a year prior as she gave birth to their ninth child. My heart just went out to him. How overwhelmed he must of felt. How helpless. I can never imagine abandoning my children but then again I could never imagine taking care of nine all by myself.
This week we reached our breaking point. We would never abandon Faith in a million years but we have reached the point of total exhaustion and helplessness. I have not been blogging because it takes three hours to get her to go to bed. After that we have one hour (if we are lucky) to catch some Zzzz's. After that it's hours and hours of Faith crying uncontrollably, shaking the rails of her crib, pulling her trach and banging her head. The more she cries the more she produces secretions and needs to be suctioned. Her sats also drop and her pulse ox alarms. During this time we just sit there in tears. She will do this for hours upon hours. She cannot cry herself to sleep like most babies because her sensory system is so out of whack. We cannot let her "work it out" because she endangers herself. We've gotten to the point where we drug her every night but noting seems to help anymore.
This reaches far beyond toddler tantrums, this is a medical issue. For the past year we've discussed this with doctor upon doctor who usually brush this off as a phase she will grow out of. Faith has never been a good sleeper and is getting progessively worse. Fortunately she has a really great occupational therapist who DOES believe us and thinks this has a lot to do with her sensory problems. When she was born her nervous system was not fully developed. You can imagine being in the hospital for the first 14 month of life and being poked and prodded and hooked to tubes and monitors does not help this.
We are far from perfect parents but I do not think this is a parenting issue (although most of the people I talk to this about seem to think otherwise...) I welcome these people to spend a night with our daughter and then they can further criticize our parenting skills.
We can handle all of the medical stuff, we cannot handle it without sleep. The last thing I wanted to do was write another post complaining...but at this point I cannot write about anything else. We cannot do this anymore. I guess we are just asking for prayers, good vibes, whatever your thing is- we need all of the help we can get. It's getting to the point where the lack of sleep isn't safe for anyone.
Please bare with us during this insane time as posts might be a little sparse!
Jen & Brian