I know many of my posts lately have dealt with my husband and his lack of a diagnosis. That is hard y’all we are nearly a year into this struggle but that has put some of our other family struggles on a back burner so to speak. I have high lighted what we have gone through with the doctors and hospitals without really mentioning what the kids are dealing with on a daily. This week has been a doozy!!
Maybe you have read previous posts and you know that the dwellers in my household consist of 4 children and 2 adults – because oldest boy has gone to college and boomeranged back to live with my parents and my ‘nother daughter is off at college now. I home-school the remaining 4: 15 girl, 14 girl, 11 girl and 5 boy. Oh yes, you read that right I have 3 hormonal females in my house, besides me!! On top of that little bit of delightful oldest girl 15 – Squirrel,is dyslexic, asthmatic, and hates to write but loves to talk, my 14 year old Bug, has an alphabet of diagnoses that include autism and bi-polar disorder, 11 year old girl, Lala, has migraines, lots of allergies, and some serious issues with her jaw that we are working to correct, and then we have Bear and his energetic, charismatic, all boy, 5 year old self. That is about it in a nutshell. However we have had some serious head-butting going on this week!
I don’t know if it is the stars aligning or the cycle of the moon or the hormonal cycle but my precious precious Bug is having a really difficult time coping with every single thing. I am not saying she has not been taught tools, coping skills, time outs, etc, I am saying none of it seems to be enough!! So we have had numerous angry and emotional outbursts this week and they end in lots of tears and BIG BIG hugs!! I love her so much and it kills me to see her get like this, but it is to be expected. It is part and parcel of who she is and we love her through it, we let her know that her diagnosis is not an excuse to treat people badly. We let her know that we aren’t perfect either and we get through apologies. We let siblings know to be patient with her and love her and try to be tolerant of her sometimes annoying behaviors, like wanting to listen to the same song over and over and over again. The older girl gets it even though she sometimes forgets, younger girl gets it but sometimes it is scary, and Bear well he mostly goes with the flow right now. We foster love here, we want kids that will love an support one another no matter what and I think we are getting there.
If I learn anything from my Bug it is that she feels everything very deeply and she doesn’t regret it but I hope she learns from it all. I hope she learns from watching me. Sadness is ok to feel but you don’t have to stay there and dwell on what makes you sad. Anger is ok to feel too, feel it, and let it go because it will eat you alive. Love, oh LOVE!! Loving on people is so great at times, but then they disappoint because that is human, and then love hurts. Hurt is ok too, but not a place to stay, lick your wounds and move on. Happy is a good place to be, counting your blessings even in the face of adversity. Happy to have the chance to Live, Love, and Laugh another day. Happy to see others succeed in life, not to be envious of them but happy for them to be living their dream. I hope not only my sweet and precious Bug sees all of this in me but ALL of my children see the example I am trying to be.
I don’t give up because I realize who is watching. Love and Light readers!
Tag: family
Personally yours – Personal Development goals/obstacles
When one is trying to grow personally and develop a plan for a business there are some obstacles that will inevitably come up and perhaps slow the progress. I have taken my hubs disability as a sign that maybe we all needed to slow down and work on things as a couple, a family, and rethink where our priorities are. We seem to constantly be re-evaluating what is most urgent to deal with because we are in a lengthy “crisis” mode and I am trying my best to keep the kids away from that mode and absorb most of that onto myself and a little on my husband because feeling like you are “on the verge” all of the time is exhausting.
We have run into financial obstacles. I have unfortunately had to sell things, ask for help from local churches, cash in life insurance, pretty much take everything down to the bare bones of living so that we can continue to afford to live in our home and not be forced to surrender another home and move in with family. SO far we are managing alright but most recently the federal TANF program had me so dad gum irritated. I have medical documentation that my husband cannot work, he doesn’t even travel well. I have a document that the doctor signed that says my husband cannot be left alone because he is a fall risk, meaning I do not get to “get out” much of anywhere without arranging care for him. Finding appropriate and hopefully free care for him has proved challenging. Imagine my surprise when hubs actual physical presence is REQUIRED for an “orientation” despite the documentation provided by a medical professional saying that he cannot!! SO my TANF application has been denied, no opportunity for appeal and I will need to re-apply because re-applying takes less than 30 days and appeals can take up to 90 days….and this folks is our federal government at work. I am not really complaining because at least the help is there; I am just shaking my head at how bogged down the whole thing is for applicants and recipients.
Emotional obstacles and here I can only speak for myself but this journey has days that leave me so depleted I honestly cannot comprehend how I am awake and even remotely functional. I deal with ANGER, the whole “why us?” sort of thing and I don’t get it and I lash out and wonder what I did to be getting beat down like this…And then I realize that I am NEVER going to understand the reasons WHY. And I reconnect to a calmer place and shake off the anger and put on my smile and get back to the work of whatever the day has left to bring us. It sometimes happens as fast as it took you to read that, but certain days, days that have been just way too much, it may be 15 minutes or a couple of hours of just being in a mood. It isn’t really angry, or sad, or upset its just a dreadful place that I prefer not to be so I try not to stay there. I am not a pity party sort of person but that is usually how I refer to these lapses in my normal upbeat self. I also try to stay away from people when I feel like this. I tried the whole “keeping it in” and TRUST ME, It doesn’t work, at all, EVER! Instead of keeping it in I usually have 15 minutes a day that I sort of “let it all hang out” and it may be in the shower crying or outside away from everyone but the cat while I have a little alone time talking to God. Either way it heals me just a little bit and I can breathe a little easier and continue on my journey.
Scheduling obstacles are the most frustrating. It would not matter if I wrote out a minute by minute plan of every single day we would still end up with something not getting done because someone would want to take the schedule literally and someone else would be so free with it …well I guess you get the picture. Between my autistic/bipolar/adhd daughter and her other terrific siblings we have pretty hectic days with homeschool lessons, co-op days, chores (kids just love those), meals and meal plans. It is still a journey y’all and this household is a never-ending work in progress.
Love people even when you think they don’t deserve it, and be the light you want to see in the world!! = Love and light readers! always Jules
The Road goes on Forever…meet the crew
Sept 2
Today I head into the local workforce center for some sort of orientation. It is mandatory because we have had to apply for federal assistance. I do not know if anyone knows or understands that being on federal assistance, when you come from a long line of blue collar joes, is a pride swallowing, soul sucking endeavor. Most people will “get” that you are asking for help, but when you are tasked with being THE person to do the asking and sometimes it feels as if you are pleading for help, it drains you. When your days are filled with phone calls concerning the health of at least one of your family members and fighting with insurance to cover things that so many take for granted. I am grateful that the assistance is there; however, I am not thrilled that I have to arrange for someone to come and stay with my family while I attend this orientation and then patch my husband through via phone because he doesn’t travel well and sitting in an office chair for 60-90 minutes will hurt him too badly. So today we will do orientation at the local workforce center. I have so much to be grateful for but right now I want to explain part of our current journey. A little “meet the crew” if you will.
My youngest girl, well she has horrible headaches and jaw problems. The simplest fix is for her to get orthodontic intervention that will re-align her jaw hopefully cutting down on the teeth grinding and most likely will put an end to most of her headaches. That is a simple solution and definitely less expensive, however Medicaid has stopped covering braces or orthodontic intervention unless it is deemed “medically necessary” so we had to be referred to a neurologist, then back to the primary care provider as a follow up and then a consultation with the orthodontist ALL so these 3 medical professionals can decide that braces and orthodontic treatment are medically necessary. Now mind you this is not a simple “straightening of the teeth” this is jaw re-alignment and straightening of the teeth which should reduce her TMJ symptoms, teeth grinding, and straighten her teeth. Someone explain to me why this loop of ridiculousness is necessary?? Why is her PCP and orthodontist word that fixing her jaw is “medically necessary” not good enough?? Oh and now the neurologist has referred us to 2 more specialists opthamologist and cardiologist, just to be on the safe side and ordered a slew of blood tests. ALL to get a jaw and teeth fixed. This is the logic I am dealing with on a daily basis. Trying to find some way to help my child who is in pain at least 4 days out of the week and often wakes herself from sleep because she is grinding her teeth!!
My husband is a different story entirely. Enrollment papers were not mailed out to us so we defaulted into a healthcare plan that we did not choose. We find out this error when his neurologist calls to confirm his appointment and get his insurance information. So guess what?? Yeah, that neurologist doesn’t accept this insurance!! So what looked like HOPE…that we got into a neurologist rather quickly has turned into NOPE…BTW I made that appointment for hubs at the same time in June that I made my daughter’s (her appointment was August 27). Primary care doctor wants to have cervical and head MRI done, to get a better picture. He tries 3 times and insurance denies. So he refers to neurologist hoping that as a specialist the neuro will have more luck getting tests ran. We may wind up going to a hospital and asking to be admitted for observation and testing. Honestly I feel desperate at times. Sleep deprived sitting up answering surveys, working my Younique business, blogging, researching figuring out some way to hustle up money to pay the bills.
My middle gal, I love her to pieces as she has such a terrific heart and she can be an incredible person. BUT, yeah you knew it was coming, she has an alphabet of diagnoses. NO really, PDD-NOS (aka autism spectrum disorder), BPD rapid cycling, ADHD, ODD and a couple of others but I try not to focus on the diagnoses because she is so much more than all of those letters. Oh and let us not forget she is also 14 and hormonal and teen girls WITHOUT any neurological and gastric issues are in and of themselves a handful. And my middle gal is more than a handful. She has good days that can be incredibly awesome where she sleeps well, wakes up refreshed and accomplishes all of her tasks for school work and even may do some chores. But those bad days man they are doozies here lately. We had taken her off medication because she was homeschooled and we wanted her to learn coping mechanisms versus using pharmaceuticals as a crutch. Don’t get me wrong, modern medicine is AMAZING, but she is still developing all of the things that will make her who she is and I (we) are not fans of what some medications can do to a developing young person.
Then we have the oldest of our girls (the ones I gave birth to) and she has dyslexia and asthma along with an old shoulder injury that acts up from time to time. She is a real doll and my biggest helper and cheer leader. She is so dang smart, until you put her on the spot to read something and then she sort of shuts down. She learns by doing and seeing things done. She loves a good story but reading is problematic and she has lovely handwriting because her stubborn little butt sat down and hand copied the library books she brought home and PRACTICED her pretty handwriting!! I let her use my kindle a lot because it has text to speech and she can make pretty much any book an audio book and I try to help her understand literature by having her follow along the text to audio or watch a movie or play versus reading them. She has pretty darn good instincts too and is sensitive to energies around her and that may come in handy with the horses she plans on training.
We also have Babyboy in the house, he is almost 6 and he was our unexpected surprise baby!! Like for real the doctor congratulated us and apologized in the same breath!! He is an awesome little dude. SO articulate and he loves Farming Simulator and Minecraft and videos of people doing things and building things. Think planes, trains, and automobiles and that pretty much cover it and LEGOS, cannot forget about legos!! He is a boy alright and also loves to be outside and get dirty but hates to take a bath and wash his hair. He is a real snuggle bug too and is so very generous with smiles and hugs and will absolutely out of nowhere tell you that he loves you.
You may have already noticed that Big boy and Big girl have left the nest to pursue other things and for that I am humbled, grateful, proud, and just a little sad. I will when necessary update on their young adult lives but my focus on this blog is the journey of life and those we encounter so be prepared to meet some characters along the way. And while it seems like time has hit fast forward in some places and in others its as if someone has hit pause. How can that be?? My kids are all growing up and getting older and yet we still seem stuck in the same situation. Faith is the hope in things not seen. Giving up is not an option when someone is calling you mommy. Love and light readers. God Bless ya for reading!
Oh Ya’ll – Depleted didn’t even begin to cover it!! But it’s ok
I used the word depleted in a previous post ya’ll…I had NO IDEA how STRONG and RESOURCEFUL I actually can be!! When you are down you are in the best position to pray, and I have!! I have had people praying for me and honestly I can FEEL it!! I can also FEEL so many people counting on me to make this work. Whew!! We are in July 2015 at the tail end of it! The 6-15 year old kids have started back to their lessons everyday, we are still eeking out enough help here and there and odd jobs to pay the bills…most of them. I’ll tell ya what though I LOVE the strength of my friends and family for carrying me through!!! Without the people around me I probably would have gone batshit crazy by now. My oldest has 2 tattoos now,*sigh* and has decided he wants to work instead of go to school. My parents are aging so much each week I am truly scared that our time with them is limited. Have one more leaving the nest next month to head off into college. My youngest daughter is grinding her teeth pretty regularly in her sleep and may be the cause of her headaches but we still get 
to consult with a neurologist! YAY (no not really) Hubby’s medical issues are managed, we do know that degenerative disc disease plays a part of the pain but it is not the whole issue. Doc has said he may never drive a truck again. Right now he canot bathe alone and has fallen several times trying to get to the bathroom. Ladies and gents this is my row to hoe and its tough but there is a wise sounding 18 year old that once told me: “Every Little Thing Is Gonna Be Alright” aka ELTIGBA…and I love her for it more than she will ever know!! When I am depleted I look to those around me, I count my tiny little blessings and Thank God he gave me a new day to wear all my many hats that I wear each day!! Love and light folks!! Make today count!!
Spinning
I feel like things are spinning out of control. And as a mother at least some semblance of control is necessary to function in the day to day. My oldest is off to his trade school to work on an associate’s in diesel mechanics, seldom home. I was not prepared for that because he was such a momma’s boy for so long. I am grateful that he has come out of his shell and just cover him in prayer daily that he makes good choices. We have added a 17 year old to the mix last year (2013) and she is a fabulous kid who just needed a safe place to land for awhile until she has time to spread her wings as well. (*sigh* its so hard) And then the oldest daughter is finding her way in high school and flip flopping between “Mom fix this” and “Mom I’ve got this” all of that is enough to make some skiddish but not this faith driven, battle scarred mom. It does make me a tad dizzy as we walk a fine line with teens anyway, but these three, I just know they will manage to make a mark on the world, they have the heart for giving, and I love them for it. I certainly hope that they learn much sooner than I did to set boundaries before getting hurt too badly.
Flip down on the other end of my children and you have a 13 year old with all of her alphabet of difficulties who is doing marvelously well in a homeschool setting. This is her 8th grade year and she is doing a little bit of “feeling her oats” as the hormones have kicked in a tad and we are operating this year with NO MEDS, focusing our energies on coping strategies, breathing, manners, exercise and good nutrition (with some supplements). I finally managed to set her up for co-op classes. Its gotten off to a rough start but it is one day a week that she for sure gets to see friends and her classes are mainly science which she loves so she is doing well. Then we have the babygirl who declares herself the “normal one” just because she is my mini-me and that is so her personality!! She loves showing her FFA goats and is becoming quite opinionated but alas I know that inside that sweet little 10 year old girl there is a hormonal monster waiting to jump at me and be all emotional and I am just not ready yet. Finally we have the baby of all of my babies who has just turned 5, he is a little devil at times but mostly he is momma’s little sweetheart. He holds my hand, gives hugs freely, and lots of cuddles and kisses. And sadly those days will be gone much too quickly for my taste.
My world is spinning because I have 6 kids in my home and on bad days 7 because I sometimes include my husband as a kid too! (winky face – he knows) I love them all so much and fight so hard for them to have everything they need in the world and maybe spoil them just a tad too. And the holding pattern we may have been in for awhile, well it got smashed to pieces and now we are FULL SPEED AHEAD and really my babies are not babies anymore (BUT THEY WILL ALWAYS BE MY BABIES)..DISCLIAMER…I don’t have baby fever at all. I do not miss pregnancy or the middle of the night feedings, but dad gum I just wish that I had them for longer, its going by way too fast and soon I will be the grandma or grams or nana….I try not to think of that just yet because I just need to focus on NOW.Oh and the macaroni noodles I was boiling for lunch. Love and Light people – be good to YOU!!
Mothersense and Miscellaneous 