All mothers, especially mothers who stay at home and homeschool, have "those" days. The days where you find yourself thinking, "I love you but I sure do not like you right now." or "why are my kids being jerks?" Guilt sets in right away for even thinking those things. The children I prayed for through all those years of infertility. The children I fight for daily to have a better childhood then I had and two loving parents who are present in their lives. These precious gifts from God.
Then Emma steals her baby sister's cracker and hides it in her shirt lying to my face. Do not tell me there is no such thing as original sin!
Life with three little girls is hard. Add in PTSD from chemo trauma / surgeries, NF related behavioral issues, and the fact that there are TWO of them and you have yourself a really good party. Lately this party gets started between 2 and 4am. Emma wakes up and begins to wake the entire home by turning on lights, yelling "good morning", and demanding pancakes. Try explaining to a four year old with trauma that 2am is not the time to party and you will feel like you are hitting your head against a brick wall.
Brad and I have noticed that these hard days are happening more and more. The home dynamic is becoming nonfunctional. The girl's have an NF specialist at Stanford that says these issues will only get worse and not better so we are getting the girls into behavioral intervention.
Why am I sharing this? These past few weeks I have felt so alone. An island of suffering with no one who understands. I think there may be more of you out there with NF kids facing similar issues but embarrassment prevents you from speaking out. To be honest, I am embarrassed too. I have one very well behaved child, I can take her anywhere and she will sit and play and be sweet. My twins on the other hand, you need the patience of a saint! I am sharing because I hope to connect with some other NF parents or adults and pick your brain for ideas to help the girls and our family. Please break the silence.
The story of Emma's journey of neurofibromatosis brain tumors and blindness.
My son is 3 and has NF. He has a speech delay and he gets frustrated with the littlest of things. Especialy changes in schdule. He also wakes up very early morning hours 2am 4am. I just bring him to bed with me only way to avoid a big melt down. Or I go into his room and lay with him. He was recently released from daycare bc they couldn't control or know how to deal with the tantrums he would have when it came time to transition from one activity to another. Good luck mama
ReplyDeleteMy son 3yr old has NF. He also wakes in the middle of the night 2am to 4am. I usually have to go into his room and lay with him or just let him come into my room to avoid a huge meltdown. He has the worst time falling asleep as Well. The tantrums can get pretty bad too. He has a speech delay also so he becomes frustrated with that easily speech therapy seems to be helping though. And he soon starts seeing behavioral therapists . he was released from his daycare bc his tantrums were so bad when transitioning from one activity to another he would hit, claw , throw things. They said they weren't equipped or knew how to deal with that. Which bothered me bc he isn't a bad kid. He just has trouble with change. He recently had his first MRI and we're waiting on results from that .
ReplyDelete