Holidays, schedule changes and disabilities

My life, as much as I’d like to deny it… Is not normal.
I am married to an amazing man. Together we have 7 amazing children. Where I am about to go in this blog is difficult.. I tend to be too real. Or I can tend to keep important realities from being shared.

I do not want to share too much and turn people away. But at the same time. I simply have felt the urgency to share, with respect to those that I love, what daily life is like.

Sleepless nights occur for several in my home. sometimes Isaac sleeps great. other nights it is late to bed, then early to rise and he needs constant supervision. and that means that if Mark had a rough night that I am up early with him ( Isaac).

Mark is not lazy. seeing him struggle with nightmares and the effects of them is difficult for me as well. sometimes when he has woken from nightmares, I will wake up as well. other times he does all he can to allow me to sleep for the time that I can. so how do those nightmares  touch us during the day? sometimes after a sleepless night for Mark, I still need him to get up and help with various things. he pushes as much as he is able. he goes with me to appointments when he can. he has his own appointments to get to. we have the house to care for, kids to get on and off the bus. and then the kids behaviors tend to stop life in its tracks and we just do all we can to help that person return to their baseline and we also have other children to try and protect from the behaviors of the others.

there are days that Mark and I trade off dealing with the troubled child while the other juggles the rest and does what ever else needs done. But Mark will be the first to admit that some of his struggle is in the moment. in that chaos of the meltdown. especially when it involves our daughter. she is extremely verbal in her outbursts. there are times that to avoid yelling at her, Mark will leave the situation. so in that time I have to deal with Madi, deal with the others and still try to carry on with life. (fixing a meal or playing a game, or whatever it may be)

there are times that I have to get up throughout the night and deal with various kiddos. some nights Mark is there to help. other nights the meds have helped and he sleeps. or he is struggling with nightmares. then morning comes and I have to get kids up and off to school. routinely during this time Mark is unable to wake up and struggles to be up and able to help. so while most of the kids are able to get up and dressed on their own , I still have several I have to take to the bus…

IF Isaac cooperates I can get him on the bus and then return to support the younger 3 getting ready and off to the bus and to school. that is all on a ” normal” school day. Isaac still struggles to be getting up on time and making the bus some days so then I have him to juggle with the younger 3, get them to the bus and then drive Isaac to school. if I have an appointment that puts things into a time crunch.

and when did I have time to shower? eat? take care of my own personal needs??

the day goes on, most days we have appointments – many through CMH and others are regular medical, or other types of appointments. we juggle through that and typical home housework. ( laundry for 9 is never ending.. neither are the dishes…. or the meal prep)  if I have even 20 minutes I try to rest, to catch my breath before some start returning home at 3 pm.  I have little time to process the appointments, and in the evenings… from 3 -?? the behaviors are rarely stopping. we have one child who is incorrectly diagnosed as ” only” having ADHD and a mood disorder. there is more to their story. but out of respect for that individual I will try to not share too much. we have others who struggle with transitions. so the change from school to home is TOUGH or the change from weekend to school day evening… all that kind of “fun” stuff. and in my opinion, we do have several typically developing kids who have needs and too often than I would like they are pushed to the side and they struggle to feel wanted among mom caring for all those with special needs. and those who need that extra support.

as we look at the things daily life includes… things like the grocery store, or things like driving and tackling a large to do list, making phone calls….

these things are on me. Mark really has a hard time making phone calls. remembering things like when bills are due is not something he can handle now. he had managed to work full time and he took over the banking for me because I was doing so much. but the robbery and the PTSD have changed him. people do not see that. he helps out with the kids if needed so I can work on those things. but pretty much I can not do anything outside of the house in the evening. that is mainly because we have in home help 3 nights a week, it was more but they just cut William from all therapies. he is too old for their current program and does not qualify for the old DD programming. so he is falling through the cracks…

and the more people we have extra in the house the more Mark’s anxiety spikes. so he has to leave the area. I am left to deal with the kids and the worker and general daily life ( meals…)

the store.. so I used to have Mark swing by the store for odds and ends or a full shopping trip as needed. he can help occasionally with these things, but if there are too many people in the isle, he cannot do it. so sometimes he is unable to get what  I needed and I have to on the fly readjust the menu for the day.

other times he will have me run and do that. but if it is close to bus time that is complicated as well. some days I stand waitign for kids to come home for 20-30 minutes in all kinds of weather. some days Mark is able to help with that. other days he can’t.

when I say he can’t. this isn’t about a choice for him. it is a choice between managing life and a full blown anxiety attack.

my daily life is filled with being screamed at, hit, kicked, trying to remain calm through all that… and then when one child calms and expects me to go on like life is fine.. .another child is in the throws of a meltdown… there isn’t time for me to calm myself down. or decompress!!!

I miss my morning time with God. I miss being able to plan anything and try to follow through on that and have it work out.

my mindless ramblings are because of sleepless nights. some times I am up comforting Isaac, or redirecting some back to bed. other times, Mark just needs to know that I am there for him.

so I face each day physically exhausted. did I mention that I have fibromyalgia? I am also dealing with type 2 diabetes. the daily stress is not healthy for me.

I rarely do things with FRIENDS I do get coffee with a CMH worker now and then… but are they really truly my friends? no. so who is there for me in the middle of the night when everyone needs me and I have nothing more to give?  Jesus is my strength.

I did not ask for special needs kids. I did not ask to have my husband struggling like he is… but this is where God has me. He is growing me for HIS purpose.

I did not share for pity. trying to raise awareness. do I need support? yes! I have listed ways in the past and some step up. others seem unable to grasp that I need daily support….

I have had friends come and help me with laundry, dishes, cooking…. it isn’t regularly but it is a blessing to have that help when I can get it!!

the thing is that when I ask for help.. I really truly need it and it isn’t just for fluff. many many many times I ask for help and i do not get it. life does go on… i think the thing that gets me is that I miss friends. I don’t have the ease of going out with friends. I have ” friends” but most are acquantances. people who say hi and all that but people who you couldn’t call in a time of crisis… people whom you can’t really call on for help in any situation…..

there are people who one would think would be there… and if there was a medical emergancy I might be able to call for help. but there isn’t anyone to call on when Mark and I need a date. we need help to focus on our marriage and to take care of each other,

doing things for ourselves is difficult as well. self care.

if you ever feel led to reach out to help my family. or another special needs family… please do so. you will walk away feeling blessed.

I have been able to reach out to several moms recently. I was the one a mom called when she got her child’s diagnoses of autism. she felt that I could listen and not judge her. another mom felt that I would be a source of insight.

I am thankful that I am able to share a meager amount of hope to these amazing moms!!!

the point today was to say this… possibly consider the whole picture. or consider that you do not know the whole story…. our family is hurting but our family is NOT giving up either!!

~kv

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