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KKGmom

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    KKGmom reacted to Surfmom in New Parents: Advice From the Trenches   
    Following up...
     
    While she is infinitely better, we still have a long way to go! Thanks for all the remarks.
     
    Lauren'sMom, relationships were a tough one for me too. Like many females, I was a "pleaser", an obedient daughter and not very confrontational. This disease made me take a stand with my parents and grown siblings. I know they all want the best for my daughter and want to support me but I had to draw the line in the sand on a few things. When I chose not to come home for Christmas when my daughter had major tics and chorea (large limb and total body type tic-movements) and irritability - more than one person in the family became upset. I sucked in a deep breath and explained that my first and only reason for existence at this point in life is to be the best mom that I can, and make decisions for my daughter in a manner that I think she would want them made. There are times I have had to repeat this, and I know I have faced criticism behind the scenes but when they really thought about it, everyone has gone along or at the very least, respected my intentions. This disease will change you. It will change your relationships too. I have let friendships slide, and in time, other friends got support fatigue and faded away. That is ok. (After all how many cards out there read, "I hope your daughter eats today, or I hope your daughter doesn't break anything major in the living room today!") In some ways, some of my relationships have become closer. Overall, my family and friends have closed the ranks and been great.
     
    And while I have at times thought I couldn't make it through another day, another step, another meltdown, another problem..., I just press on. As a result, while I have felt completely beaten at times, I also feel almost invincible too. If I can get through this...well..... LOL....I will stop here before I tempt fate too much.
     
    To keep it in the proper perspective, we are still going for infusions once a month for IVIG and every other month we add a round of Cytoxan. While the physical symptoms are mostly gone, we do have some psychiatric symptoms to manage...like mood swings and too much sleep. She is still on a homebound school program, but it looks like she will be returning to school in the fall....and that may be the hardest part yet since she is 17 .
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