Special Needs

I feel so isolated

I take Christopher to all of his appoitments.  I take Matthew to all of his appoitments.  Right now Chris and I are in the hospital on what they said would just be overnight and now they want to keep him until he has a seizure.  He's not had one since August.  It might be awhile. 

I asked DH to take him so I could spend time with our oldest son and he told him he didn't like hospitals.  Chris didn't sleep last night and is now screaming.  I would like to shower.  I would like to put deoderant on.  It's not like I created this baby all alone.  Anyone else's husband not take an active role in the parenting of their SN's child?  I'm getting burnt out really quick.

Re: I feel so isolated

  • He had surgeries on his eyes when he was a kid and he said that it brings up memories.  I can understand to a degree.  I was in the hospital for the majority of my pregnancy with my twins and with Chris.  I don't like hospitals either but sometimes you just have to suck it up.
  • I've been following your story as my DS has had seizures as well.  His last one was in November, and his are also far apart between 5-6 months.  He  had an MRI today.  Why do they want to wait till he has a seizure? 

    Your DH needs to take turns with you because you are also a mother to the other 3 boys, and they need you too...

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  • I will throw this out there because I like you am a mommy of two other boys (bless your heart for a 3rd - more of a blessing!) but dad dowesn't spend anytime at the hospitals either and complains with what needs to be done at home. I too have to TELL him what needs to be done.

    You need to ask the nurse to care for DS and take a short break. An hour away as guily as it may seem will recharge you. I know how frustrating and exhausting it can be to feel alone in the boat. You are strong, but this is different than being strong, it's survival. You can do this, if he's not going to step up, don't spend time dwelling, discussing or begging him too. Sometimes they just don't get it and that's not an excuse it's the truth....

    And to top it off read this, enjoy the poem and have a better 2009!!!

    A Women's Poem

    He didn't like the casserole

    And he didn't like my cake.

    He said my biscuits were too hard...

    Not like his mother used to make.

    I didn't perk the coffee right

    He didn't like the stew,

    I didn't mend his socks

    The way his mother used to do.

    I pondered for an answer

    I was looking for a clue.

    Then I turned around and smacked the shit out of him...

    Like his mother used to do.

  • Okay now that I am done LMAO, I may seem bitter, but the truth is my mom sent me that poem and I read it frequently. I value that my friends/family look at me with admiration, but common on having a SN child is HARD. I call it survial and we are surviving, I am surviving and I feel at many times that I have done it on my own.

    You can do this and your sons already think they have the strongest, most beautiful and loving mommy in the world. You rock and if you are like me you are so look forward to 2009! Cheers!!

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  • Just throwing this out there...

    What if you come from your DS point of view and tell dad that you empathise with his uncomfortability being in the hospital - but your son needs his daddy some too. ?How does the little one feel being there all the time? It might help him not have this view of hospitals as well - if dad can come in for a while. I mean, I know he's just 15 months - but kids feel things too.

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  • My husband doesn't help out a whole lot either, but he does a lot for the older two which I usually don't give him credit for - vent as you need to...
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