WARNING-emotional venting

Bad bad day today- and I hesitated even beginning to blog- just when I think I am coping well with being a "different" mommy - something hits me- I hate even complaining about our "different" life and how tired I am of hospitals, surgeries, procedures before surgeries, medications and everything else that comes with being Lukes mom- I can't help but think of Conner's mom Sarah and Hannah's mom Marcey on how I bet they would give anything to have one more day to complain! It feels selfish to complain- but a day spent at the lake with my family today makes me sad- I know its silly but I see moms and dads sitting on the beach and they are so cute talking and enjoying their children while they play in the sand alone - then there is us! Luke is climbing up the hill waiting for us to chase him, Lily is off in another direction and Alex wants to do something like the big kids but daddy and Mommy are too busy to supervise- and Steve and I are never together- we seem worlds apart- we rarely talk- people probably think we are not even together and it probably looks like we don't even like one another- and somedays I swear we don't- we spend our days trying to keep Luke busy and feeding him and telling him "No" to just about everything he touches- I am so physically exhausted most days I just want to go to sleep and not wake for days- I feel too tired to even enjoy these moments- we fight over who will chase him this time and who will feed him- then of course bath him after ever meal- then who will struggle to give him his meds- who will make him stop crying- lately he is so crabby- who will put him to bed- yes zip him in doesn't seem hard but we do this over and over cause he keeps crying - most of the time we argue over what we think he wants but that just seems so stupid- cause most of the time I don't think he even knows- I try hard to give Alex the attention he needs and like tonight I allowed him to spend the night at Kims camper with Daddy while I stayed home with Lily and Luke- I figured once they were in bed I could do some laundry and dishes- but where I really want to be is at the camper with Daddy and Alex enjoying things as a family and we constantly have to take turns so Alex can enjoy his childhood, normal family gathering are no fun either - trying to supervise him somewhere things aren't Luke proof is a nightmare- most family members get tired just watching him and don't offer to help, I think we would be better off taking turns going to family birthdays and parties while someone stays back with Luke cause we can't have him in the heat and he can't stay up too late or he will have a seizure- I guess I am venting on here cause I have lost most friends who I could talk with- no one cares to hear about my situation anymore- friends have a hard time knowing what to say and never want to talk about their troubles cause they don't seem that bad when next to ours, I am so tired being his mom with appointments and such that I don't even have time to work on my friendships, some friends are better at understanding some not so well- it's funny the ones that I thought would stick around didn't and the ones I thought would never last through this try very hard, Its just not the same as a mom a young adult you are suppose to have that one person who goes through life with you through everything but that will never happen - cause I realize I am alone - OK see I warned you emotional venting thats all- need to go switch some laundry and put some clothes away