My fellow MOMs i come before you with an odd question/ problem. My 11mo daughter has some very rare diseases. Im not feeling strong enough tonight go into them but one of them is life threatening. She is restarting TPNs tomorrow. And is having some unexplained fevers currently. But my question isnt medical its emotional.i have been singing and humming her you are my sunshine since i was pregnant with her. She is a miracle from conception. She has always loved this lullabye. She sings it to me sometimes only now with health so fragile we have been inpatient since may 28. I cry at the last verse "please dont take my sunshine away" its getting harder and harder to sing to her. I look at her and draw strength knowing she is fighting with more than any fighter has ever fought. But i grow weaker everyday not knowing if we will ever go home or for how long. She is an amazing miracle the perfect baby and soon to be toddler. I know we will continue to fight. I make everyday special a different bow finger painting toys walks to the garden when shes allowed. I plan her bday party but when I dont know whether she will be in or out patient. My body is starting to fall apart from the stress weight loss hairloss. I eat and tryy to sleep. How do you do it. I talk to palliative care daily. But there are so many obstacles to getting her home it seems imossible. Well be coming home with a broviac and tpns as well as her gtube. I dont need nursing for that but the other yes. And we have been told we are wait listed. Just more hurdles. How do you do it? What am i doing wrong. I am filled with hope but sadness. I cant fix this. I cant even sing to her without crying please god dont take my miracle away... https://facebook/lisa.sweetlittle?hc_location=timeline
Posted on: Wed, 17 Jul 2013 15:20:07 +0000
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