Hurry up and wait!

Hurry get this paper filled out , hurry and get it signed , be sure all the i's are dotted and filled in every line , Don't delay you will miss the deadline. hurry or it wont apply , you won't be eligible and services will be denied.Your floors are dirty and the dishes aren't washed.Child one has a program and child two is having a melt down.

 At some point the screams in the background have turned into a mental chant of hurry up , I just cant , not one more thing , just not today , hurry up hurry up ! why won;t it all go away?hurry hurry and don't forget the teacher who thinks your a lazy mom because you haven't signed the reading log. Hurry up hurry up its just not fair , WHY do I have so many
shares ? so much to do every day , there just isn't any way! The phone is ringing and people are calling , boo is screaming yet again. Some days you just cant win. wait is
it dinner time? But it can't be I have all these deadlines, feed the kids  and put them to bed .Finally they are sleeping now time to rest ,Hahaha that's funny ,Hurry ,hurry up and sign the papers, make the lunches and clean the table , get your forms filled and make a list because now its 1 am and I cant go on.Did it all get done? nope not today , nope , not on any day.

I can remember many many times filling out forms  and surveys and questionnaires for doctors, services  resources and community aid  that had to be done yesterday , or the day
before , the fifth of may or may the fifth now or never the world might stop spinning, You bad bad parent you !What ever the date they had to be done now! Many of them were
incomprehensible to me . I didn't understand them  or really know the gist of the the answers they were seeking , Some I filled out at home and some at meetings and appointments but they all had one thing in common, They were all of vast importance and they all had deadlines if they weren't done correctly no services or diagnoses  aid or funding would be forth coming As soon they were filed and properly dated so as to not be excluded  or disqualified. There would be no word for weeks and months  some times years.

 Then I would be the one calling is there news ? Can you help ? Can we get services ? Test results help with hotels and gas money? The silence that I thought would be a blessed relief before the paperwork was filed turned into and ominous disheartening vast wasteland of loneliness and uncertainty. Surely some one would call today , there would be news , or progress. some word , surely if we didn't qualify some one would have sent a letter or called , surely we cant be denied for every program available in our state . Surely someone will help. The endless waiting would go on and on, while my brain played endless soundtrack of please God please , I need some help . I cant do it alone . I don't know if I can do it another day.

strangely those same people who were in such a rush for my paperwork had a different tune when I would call to see if there was news, you must be patient, these things take time, There is a process. we will call you when there is word. They rarely ever did . There would eventually be a letter in the mail saying that we didn't qualify , they ran out of funds , others were more in need than we were and that we should try and find community resources. Our one resource that we did have wasn't able to help us most of the times, State run family support groups have strict government guidelines for what can be covered and what cant. Funds are often limited Programs are overwhelmed by the amount of families requesting aid.In the early years we struggled to fund the many therapies and learned Shriner hospital is a great resource if you need surgery or cancer treatment , they couldn't help us with therapy and adaptive equipment or gas and hotels, I am sure they are a great program but for us they weren't able to help at all

Friends and relatives were encouraging, oh your a great mom , I just couldn't do what you do . Its great you take such good care of boo.You have to take care of boo that's whats important boo is important !Fragments of my shattered soul would be silently screaming, but what about me  I just cant anymore  what about me ? You just have to do the hard things and when this is over then there will be time for you .Yup they were encouraging but not helpful.

 But "THIS" never got over , it went on 18 years to date. On and on from one medical crisis and emergency and goal and problem to another just as taxing all consuming life event or diagnosis or therapy or surgery  or new symptoms  or new behaviors . On and on , never ending and it took its toll on me. Mentally , physically and emotionally.I gave it my all everyday , all day long.

I went from being the 30 something energetic mom pushing herself past the point of exhaustion every day to do all that was required of me.to a mid thirties mom struggling and isolated, emotionally drained . to  late 30;s mom pushing herself through the depression and exhaustion daily , struggling to do  everything that was required of me .To a mom in her forties
dealing with teenage girls and hormones on top of boos medical and mental heath issues that never ended.To the mom I am today almost 50, tired , worn down and dealing with multiple health issues I am not sure if my body can recover from.Raw from years and years of verbal abuse , exhaustion and pushing long past the point when medical health and emotional health required me to stop.I pushed on . I don't know how I  made it to this point to be honest. I really didn't think my mental health or physical health would make it .


At some  point I knew i WAS A FAILURE. My daughter screamed  that she hated me wanted to die and it was my fault for allowing her to be born, my husband hated home and came
there as rarely as possible and also thought I mismanaged the finances and that was why we were always broke,The stress in our home was no way conductive to any kind of marital relationships. My son stopped coming by to help out because boo made him miserable and he couldn't tolerate her for very long. the college plans I had for a degree and a career were fading into the background of other long forgotten dreams, the personal goals I had died long ago , I was in survival mode , day to day . some times hour to hour.

Extended family relationships grew weaker due to lack of time spent fostering them. I no longer had friends , there were one or two but mostly they were all gone , busy with their own lives and unable to understand we kept making such a big deal out of things .A few seemed to understand the the hell we lived in but they faded away as well . Its hard to grow a relationship when you  can't spend no time with some one, We lived in a world few of our friends and neighbors understood. We became more and more isolated as boos mental health issues became worse.We tried drugs that cause horrid side effects and drugs that caused great depression and drugs that made her too tired and drugs
that made her even more rapid cycling manic. As she grew older her rages increased. its one thing to deal with a raging 3 year old trying to kill you than 100 pound 5 foot middle schooler, boo could no longer wrapped in a blanket and held until the rage subsided or she fell asleep.

 Yes it was sad we had so many appointments but people said often that maybe we should settle down and stay home and put boo in some  activities. There is no way to explain to some one that a child who is born in a body that doesn't work with a mind that fully understands how life screwed her ; has emotional mood swings she cant control and who doesn't have the ability to cope with day to day life  probably couldn't handle the stress of an "activity" even if she were physically able to participate . Which of coarse she was not . people just don't understand a world where seems on jeans physically hurt , and dust touching  fingers can send some one spiraling out of control unable to calm themselves or be calmed for hours.a child that cant handle the emotions and sensations being thrown at them from ordinary every day experiences certainly cant cope with activities or live a  "NORMAL" life. People also don't seem to grasp that therapy's and appointments to see specialists aren't optional or choices that we made.If she had been on oxygen they wouldn't want us to take her off it. That would be silly , she needs it . But they couldn't understand she needed the counseling and therapy and the dr appointments and the meds. Stopping it wouldn't make her life "NORMAL" . Boo didn't have a so called normal life to start with and if we stopped getting her the help she needed she was not even going to have a functioning life,

We reduced our church attendance due to religiosity and dealt with these issues in therapy sessions, I struggled with well meaning people in the congregation encouraging her religiosity , They didn't understand that some thing wasn't right . They adored and loved how spiritual she was and how much faith she had .no one wanted to hear some thing wasn't right and I learned quickly there was little help from friends at church. I needed to have faith and be strong, God wouldn't give me more than I could handle. If I had faith we would receive healing and Jesus paid the price for out healing . If your prayers aren't answered God isn't the problem. All these things are true. And I believe the bible and what it says. God is a good God.He answers prayers and he performs miracles. I don't doubt it.

The people at church meant well . I truly feel that. But they weren't helpful at all. They would ask how she was doing and rebuke me for speaking words of doubt . They would pat me on the shoulder and tell me to have faith and go back to their lives until the next service They meant well but their admonishments and biblical encouragement didn't help us to deal with real issues on a daily basis and seriously if you don't want to know don;t ask , the bible says to call those things that be not as though they were not to call the things are as they aren't , I interpret that to mean God wants us to speak positively  and to speak the end result of the changes we are believing for not to deny the reality of the problem and walk around speaking in wise sounding scriptures every-time some one acknowledges that they have a real problem or issue. that;s just my take on it . And they did adk !

 I had stopped with the helps ministry when I was pregnant with boo and didn't make it back after the surprise arrival of baby girl  . I often got asked when I was coming back. I tried to explain I was tired , exhausted , heart sick , struggling ,and over whelmed .I was on the edge and felt like I was drowning all that was on my plate. No one really wanted to hear this and encouraged me with things like oh we all get tired , and you need to get more personal time with God he will strengthen you. As the girls got older I stopped going to church. I was just too tired. I couldn't drag myself out of bed Sunday morning I felt horrible and a failure as a christian at this point. well meaning members would admonish me that I needed to get back to church and that I had to make the effort to get up and get there . frankly I was depressed and didn't want to face having to hear how if I had enough faith God could provide a miracle and boo could be healed. All the answers lay with my faith and I needed to be strong according to well meaning members of the congregation. I guess they thought that I didn't have any faith , that I didn't pray or believe god for healing , That I didn't ask him daily for strength and wisdom and didn't bother to thank him for all the miracles hes done in our lives . I did lose faith at one point significantly but that is another story.

We would see news reports communities helping out people with disabilities and coming together , churches rallying around a mom with sextuplets and listen to the parents tell
all the wonderful things people did for them 'The media was full of stories of communities banding together , medical bills being paid , fund raisers be held and many many other great human acts of kindness,and still we struggled on alone. That is when I learned to lie. At first it just seemed easier to force a smile and tell people at church boo was doing well and we were making great progress. praise God , this satisfied people and they didn't say those nice encouraging things to me . It made my life so much less miserable. so I kept it up. I learned that most people who asked were asking out of politeness and if you just said fine and didn't tell them their faces would sag with relief.It wasn't like they understood the hell we lived in anyway . It wasn't like them knowing how bad our life was helped them, they just felt bad for us . Then we would get the pitying glances. So as the years went on I lied more and more. I became really good at it . I have one friend who can always tell and will flat out tell me bullshit , or your freaking lying to me woman! But only one. I am a good liar . I can attend an entire event , listen attentively , make small talk and never mention anything about my
family  or whats going on with us , I can do it for hours , talk about the weather to current events  Not that we live a life in current events but we do have internet and all
the Dr offices have tvs. I can smile and make polite conversation, ask about your family and never tell you anything personal. I gloss over treatments and change the subjects
back to you and your with ease . this seems to satisfy people.

People in my opinion don't really have time to bother or want to know and if you dump this information on them they often feel bad , guilty they have normal lives and healthy children. sometimes they are sure such things cant happen in today's society with all its medical wonders and
cures. They are often sure that no one in America goes without treatment for lack of money and that all "Handicapped" kids get everything they need from the government . After all their sisters neighbors cousin is in a wheel chair they don't have to pay for anything. the mom just stays home and cares for her , she is such a great little inspiration and sits smiling in her chair all day. She cant talk but you can tell shes happy . I just smile . I am glad shes happy and feeling loved. Its very unfair that
life threw her who ever she is into a body that cant function with a brain that will never be able to process algebra or in some cases even ever talk . But I am truly glad shes happy . I would have given my ability to walk for boo if I could , I would have given anything if she could be a happy child. Its hell to watch your child suffer  and not to be able to do anything about it .

I have ruined my health over the last 18 years . If I had it to do over again I would do the same thing . No I am not happy that I ruined my health . I don't enjoy the health issues or the fact I have maxed out credit cards trying to pay for meds. But in the end there was no one else to do the things I did . There was no one else to drive boo to appointments , to take care of her after surgeries , to fill out those damn papers.to be screamed at in frustration and rage from every thing from school issues to the sky being blue and and anything that doesn't fall between. If I had it to do all over again. I don't know what I could have done differently . maybe we should have refused the out of town promotion and got a town job , applied for food stamps and got on government aid . Its easy enough to make so little money in poverty stricken rural podunk that you cant afford to take care of your family. Maybe we should have done that but it didn't seem right . We wanted to make a better life for our kids , pay our bills and take care of all the medical issues we were saddled with . We wanted to be responsible parents. I don't know in retrospect if it was the right decision , it doesn't matter its too late now.

I don't think If I had known the hell we would go through as a parent , as a family , trying to get boo help,if I had known it would cost me church relationships, family relationships, friends, possibly my marriage and my health I probably would have done it again anyway. How can I look at my daughter put any kind of price tag on her ?

 Shes not fixed , she still has physical therapy and will be going back into counseling.There are still new health issues to be dealt with and she still has medication management appointments , she still has rages and cant cope with changes and life is slamming her right now. shes still not happy and still screams t me but at least she doesn't want to die and doesn't hate me for not aborting her , so progress!!!

 Life is still hard for all of us and we are all still sitting around waiting for results of paperwork,
funding, programs, insurance decisions, medical equipment and the list goes on. we still struggle to get out paperwork done. we still wait and wait and wait for results .

The amount of time people with disabilities wait for funding and aid and programs and medical assistance is ridiculous.we have scraped up money for wheel chairs at thrift stores because we were denied . We have put together money to buy crutches off the internet because boo cant walk without them and it can take 3 to 6 months for replacements to arrive. we have pushed all 200 pounds of her for miles up and down hills hunched over ruining our backs because it took 4 months to get parts for her scooter, then insurance didn't approve and we had to wait longer for the key lock which the scooter wont run without.People with disabilities often do without much needed equipment.we try and donate all equipment to agencies locally that can store it in case some one needs it. Medical equipment is ridiculously expensive and insurance takes a long time to approve equipment..

Its sad really that those who have disabilities have to spend so much of their lives on hold as they "wait" to be approved and wait to hear results and fight to get the adaptive equipment that can make their lives productive. And many times disabled people do without so much of the technology available today because the government insurance will not pay for things the state doesn't deem necessary . Yes a balanced weighted spoon that would allow you to eat without spilling half the food all over you and  and enable you to feed your self with poor motor skills by  getting the food into your mouth is not deemed necessary by the state but a luxury .The fact that you could have independence to feed yourself isn't a concern nor is your dignity or pride . You can live without one and some  one can feed you, in the eyes of the state your fed so your needs are met.

and so we hurry! hurry up and wait! And wait, and file an appeal, and re word our request and get another specialist to send yet another letter stating we need this or that and then weeeeeeee wait and wait and.........