Tuesday, May 8, 2012

Never A Break from SSI....

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SSI sent us yet another letter in the mail yesterday - this time telling us starting June 1st Noah is once again not eligible for SSI which means his Medicaid will also be terminated June 1st. I have no idea how this is even possible considering they sent confirmation of Chris' pay stub figures in a letter dated April 20, 2012, we then get three days later a letter dated April 23, 2012 saying based on those pay stub figures for February and March 2012 that Noah was due $599.98 monthly. Now without any additional pay stubs sent yet for April, they have magically calculated that Noah is due nothing in correspondence dated May 5, 2012. This was the exact same problem we had in March, due to someone's mistakes in calculations. Once again I have 3 weeks to get them to fix the problem, the same amount of time it took me in February to get someone's attention to reinstate SSI and then another 9 days in March Noah went without Medicaid benefits until someone at Medicaid recognized he was still SSI eligible and reinstated his insurance benefits. I called again this morning to try to fix it all, just spoke to whoever answered the phone and was thankful it was a person with perfect English that could understand me. I could tell right away that she detected something was wrong when she put me on hold to investigate what was happening with a supervisor. After returning to the line the representative said the supervisor, Debbie, was aware of the problem and assigning it out of another claims representative to work on and I'll just have to wait for further notices in the mail. Keep in mind this is the same supervisor who won't take my calls or return them so I'm not holding my breath that there will be quick, easy or accurate resolution to this. Having the two agencies tied together is really terrible. Chris and I are so exhausted - mentally and physically with everything in our daily lives.

Noah has had some rough nights where he isn't sleeping. We can't figure out why or what is bothering him. We offer him countless bottles, change his clothes thinking maybe he's having sensory issues to feet pajamas, turn the heat back on in the middle of May because we think maybe his hands are cold and maybe he needs heat, we try cuddling with him, we tried it all and he just continues to do his cackle-cry which usually means he's uncomfortable or wants something. My mind wanders - is he in pain, is he sick, does he have a stomach ache, is he afraid of the dark... anything as to what it could be. Three hours later he finally goes back to sleep. He is completely happy, well and full of giggles this morning like nothing in the night was ever wrong. Chris and I are so exhausted. In the last few days we've probably gotten a total of 3 hours of sleep each night. I lay in bed with tears welling in my eyes just praying until my hands go numb asking God if he can just help me. Just grant him the gift of communication so I know what to do.

 I've followed all of God's and society's rules. I am a good, loving, kind person and sometimes I just sit and wonder what did I ever do to deserve all this pain all the worry, all the problems in each day. Did I cross a black cat on a dark night? Did I break a mirror I didn't know about and am suffering a bought of plain bad luck? What is it so I can undo it?

Chris accidentally crashed Noah's baby bottles into the spice rack shattering them last night, leaving us with only a couple left to use. Noah will only drink from these bottles. The bad thing is we found that Medela's 8 ounce glass bottles have been discontinued, so after lots of hunting we decided to purchase Evenflo glass bottles and we are praying that they work for Noah as he won't drink from just any kind of bottle. The online reviews say they are compatible with Medela breast pumps leaving us hoping they will also be compatible with Medela bottle nipples. Noah still likes his bottles warmed so we aren't able to use plastic ones as we don't want to heat plastic in the microwave. In a regular world breaking of bottles wouldn't be a big deal for a typical child - but in the land of special needs it feels like a mini crisis knowing Noah can't and won't drink from just any kind of bottle. If someone shadowed me for 24 hours and realized what this life was like they'd probably run for the hills and never look back. But this is the reality of our lives.

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.