Special Needs Mom's 2014 Goals and dreams, bumping the track of stress

Yeah, so here it is. HAPPY NEW YEAR. 2014

Time to "start the resolutions"

When is minus 2 degrees outside the air hurts to breathe. I don't dare bring Daniel out because he doesn't regulate well.  So its winter and I get it.  We live in a place that is horrendously expensive and has weather that gets too cold to function in.  I wonder how many days out of the year I keep Daniel in the house to protect him from the elements. Probably alot.

The Holidays are over.  They were remarkably uneventful and relatively normal.  It goes without saying that the out going nature in me misses going to Christmas parties, out for dinners, and just doing fun things.  The big event was a trip with the kids to see Frozen.  Daniel really deserved to get out of the house and it was New Years Day.  That trip cost me $47 plus another $20. for food and that was WITH a free coupon for popcorn.   It is incredible to me to that many people go to the movies all the time.  Now, I LOVE movies, but have to watch them when they come to cable.  It's cool.  I almost never can get away anyhow.

Keys are falling off.

Crashes all the time

The holidays are usually a struggle and half ($$$).  This year we managed to get the kids a couple of things that they really wanted, but not everything.  It seemed like they were happy and satisfied and grateful.  Then there was the mysterious IPAD that was shipped anonymously by one of Santa's Elves to Daniel right before Christmas. The person sent it anonymously.   He loves it, and uses it for hours and hours.  The pay it forward, "acts of Kindness" runs rampant in this area.  I am so grateful for that gift for him, because there is no way we could afford one.  In fact, my laptop is an 9 year old Dell Inspiron that is slowly dying.  My dream lap top is a MAC book, because I would really like write more, and publish more videos.  My new years resolution is to become better at video blogging and making interesting videos.  However, it is virtually impossible on this old clunker.  My laptop is missing the R key.  What I type, I have to press ten times hard where the R used to be and it works.

Live to dream

I'm dreaming of a MacBook

Live to Dream

I don't know what to say about my goals and dreams.  I have them. Such as the big one, enroll in an RN accelerated program, start working out at a gym again, write down more information and ideas about how to take better care of Daniel, become a better wife and mother, get healthy,  and get myself a new lap top, and a new sophisticated video camera.   And I have already started the number one goal, which is to get my butt to church more often and make Christmas bigger than just the holiday.

So it sounds like its feasible yes?  It would all be perfect and I could be happier and healthier.  My kids especially Daniel would have a better life because I could provide more. I would have self satisfaction and self esteem improvement.  I would develop a new career that I love which would be flexible, that I could take with me to Florida someday. (SOMEDAY I DREAM)   I would look better.  I would sleep better.  I would have technology at my fingertips and it would allow me to do so much more for my family and for others.   So one of the biggest prayers I have, is asking God how can I get to this place when I don't have a

penny to my name.  The financial pressure and stress sucks my cash, and my energy. I have an insurance license for property and casualty but I completely dislike selling insurance.  I'm sick most of the time.  I am at least 70 pounds overweight.  The gym cost too much money.  Walking is ridiculously out of the question on a consistent basis. (um minus 2???)    I have zero credit because we are still dealing with serious issues from past debt and medical bills.  My cars are falling to pieces, well, mostly the Windstar.

This, my friends, is just an example.  Have a goal, hit a wall.  Have a dream? Feel it die. Want to progress? It all cost money.  But the real hard part is Daniel.  Daniel could be enrolled in swimming programs and be stronger. If I could afford it.  Daniel would have better therapy, and would go to external programs that would help him stand better, get stronger, move more.  Daniel would have more technology and more time for learning.  Daniel would be 100 times more advanced than he is, if I just had the time and money and health.   I look at him sometimes and I feel sick to my stomach because he has so much potential to do SO MUCH more and I just can't get to that point.

I DONT KNOW HOW TO CARRY DANIEL ACROSS THE GAP!!!!

People let me tell you something, it is not a cliche or a robotic repetitive whine when I tell you that I want so much for my family, my children, my life, my marriage, my community, my world.  But raising a human being who is 100% reliant on you for their complete life and needs, is a BIG DEAL.

All of the things I dream for.  Wish for. Try to plan for. Fall tragically by the wayside because the resources are so lacking.  Just paying the basic life expenses is rough.  You want to stay in your house? Well, yes, I do because the schools are outstanding for Thomas, and Daniel is still a part of the schools, and we couldn't sell it if we wanted to anyhow.  Plus it is modified for accessibility, partly.

Hear me. Please.  I have goals that to many would simply be the swipe of a credit card, done.  The writing of a check, there you go.  But I am stuck in a perpetual rythym of stress that prevents any of the next steps from progressing.  It's about money.  It's about health.  It's about exhaustion from trying.

My blood pressure is high now, and I am on a pile of medications for "stuff".  It's ridiculous because our medical costs are rising for Daniel, and for Julie.  It could be the other way around.  Yes.  A laptop, the mortgage, a reliable car, a new education, a commitment to health, and I will say, etc.   Yes my world would flip upside down if I could break the cycle.

But how do I do that?  How?  SuperMom only has so many waking hours.  Every penny is needed just to feed us and keep us warm.   How do I grab those dreams and push forward for my son.  FOR MY SON, when I can't even get credit enough, or a loan, or a job.   I rattle and shake myself trying to figure it out.  They say "you are doing such a great job taking care of Daniel Julie."  Thank you, I say.  But in my head I think NO.  NO I'M NOT. His hamstrings are tight, he needs to be in water, he needs to do more, see more, learn more.  There are thousands of things I could be doing for him.

And all I can do, is take a nap, and pray that my debit card works because I need to pick up prescriptions.  Perhaps there is a helping force out there that could bump me onto the track of my dreams and goals.  I was there once in my life.  Bump me into a place where things are possible, and my enthusiasm and hope returns. Perhaps in a Dr. Suess kind of world I would find someone to lift my dust spec up and save me.

It's minus 2.  My laptop just crashed twice.  My pointer finger hurts from hitting that R key.  I have stress because of the above mentioned things and I am going to spend the next hour trying to destress and get my blood pressure down.   Sigh.  Where is my bump to my dreams?

Daniels Finger Print Tree

Responsibility or Fear, Memories or mishaps, thoughts about the journey, September 2013........

The BEST antidepressant

Henry, 4 months old

September 24, 2013

I walked Henry this morning missing my daughter who is at college, and had myself good cry.  I wonder at times what is going to happen to our family structure because the stress is managed differently by each person.  Things are perceived as having different impacts, or levels of importance.  I manage the daily business of Daniel quietly in my office, by myself.  And I manage it with him, in the house and in the Van on the road to where ever.   The business of what to do, who to write to, who to call, what procedures are need, researching therapies, scheduling scheduling scheduling.  Then of course there is the "getting to places" such as hospitals, labs, clinics, doctors office.   And of course there is also education management.  And equipment needs of course. You know, its all been said before.
  

I have been doing this for a long long long time.   But I still feel unsettled every single day.   And I think its because my family structure wobbles and implodes under pressure.   Research shows, that parents have a greater liklihood of separating in situations like these.  I think inherently the fact that we look at our situation completely from polar opposite ends is a big issue.  

And I have to maintain and manage, for the sake of Daniel. For the sake of the children.  It is I, Julie, who decides which doctor Daniel goes to.  I decide what to do, when to do. I attend the school PPT meetings about his education goals. I take him to appointments, and bring him for blood work.   I feel his pain, and I understand his "language".  And now I am training a special little dog to provide comfort and friendship.

The sun shines.  The moon and stars come out. Another day.  And almost always I feel such an overwhelming responsibility.   

I can do everything.  I can manage it all.  I feel so empowered and so strong.  Until the money part hits.  This is where the polar opposite thing hits.  Do I put Daniel's entire life at chance and go to a full time job?  Or do I stay in my God given role as his care giver, his Mom, his confidence, his love, his support, his world.  

Yeah, I know the answer to that one.  And in prayer Lord I ask that you lift me up.   

And in my walk this morning, I wondered where things are going.  And how some people really just don't have the ability to release perceptions of perfection and what SHOULD BE, and release consuming anger and frustration, and release disappointment and negative expressions...   And I guess we are, who we are.

I met with two amazing young ladies yesterday, Hayley and Romy...  They are embarking on a project called "Fight for Daniel, Forever"  to raise money for him, and also show the community how much they love and care for this non verbal disabled boy, who sits in a small classroom separated from most.  But who meets 5th and 6th graders who come in to volunteer.  

And those girls, as we talked...  amazed me with their mature enthusiasm and compassion.  It wasn't about a "project" that was needed to be done.  It was completely about Daniel and how much he had changed their lives.  And how they want to do something to help him.

Do we need the money, oh my GOD yes...  But it is so much more than that.  Watching them talk about their compassion for the disabled....made me realize the greater good at work here.  These lessons they learn will forever impact their future.  

I am open to help from others, because without it, I would be in a very sad and very dark little place of stress.  

So that's kind of where I'm at today.  What do I do??   

How do I manage the discourse in my personal relationships and still do the best I can for Daniel.

Well, based on Sarah and Thomas...  I think I'm doing pretty well.   If I were able to financially remove some of the pressure, I would be better.  But I have honestly come to accept that it will be with me for the rest of my life, on this physical earth anyhow.

And we are not alone.  A severely disabled child, being cared for in your home... has profound, big time, effects on EVERYTHING and EVERYBODY.  

But the sun goes up, the day is pretty and cool and the moon and stars come out, and we are a day older.   As each day departs, I should ponder, "what did I do today that made a difference?  Am I living a purpose driven life? Do I have memories to look back on that make me laugh and fill my heart with joy? Does the love and behavior in my marriage outweigh the anger and discourse?  Is Daniel happy?  When will I start taking better care of myself?  Have I remembered to keep my faith strong that God will provide what we need?  Am I fearful, or trusting?  What is the best thing that happened today?  

And now.... now it is 10:21am on a September morning.  Very chilly.  The phone just rang and it was one of THOSE calls, the kind I never answer.

And Henry needs a walk.  I need to clean and bake a batch of cookies to mail to my college who I miss with my entire heart.  

The day will end.  I don't know where my mind will be.  But I'm going to try hard to keep my faith in perspective.  Almost 16 years now of raising Daniel.  Amazing stuff.

Julie A. Hasselberger, 

Mom to Daniel, age 15, bilateral diffuse perisylvian polymicrogyria and microcephaly, caused by the CMV virus. Non verbal, wheelchair, seizures, feeding dysfunction, developmental delay, global disabilities, multiple surgeries for hip dysplasia, muscle release, severe gastrointestinal issues, fragile respiratory system, history of aspiration and pneumonia, etc.   That.  Is.  Me. Julie Ann Hasselberger

The words that don't lie.....Living with a disabled child can have profound effects on the entire family–parents, siblings, and extended family members. It is a unique shared experience for families and can affect all aspects of family functioning. On the positive side, it can broaden horizons, increase family members' awareness of their inner strength, enhance family cohesion, and encourage connections to community groups or religious institutions. On the negative side, the time and financial costs, physical and emotional demands, and logistical complexities associated with raising a disabled child can have far-reaching effects as we describe below. The impacts will likely depend on the type of condition and severity, as well as the physical, emotional, and financial wherewithal of the family and the resources that are available.For parents, having a disabled child may increase stress, take a toll on mental and physical health, make it difficult to find appropriate and affordable child care, and affect decisions about work, education/training, having additional children, and relying on public support. It may be associated with guilt, blame, or reduced self-esteem. It may divert attention from other aspects of family functioning. The out-of-pocket costs of medical care and other services may be enormous. All of these potential effects could have repercussions for the quality of the relationship between the parents, their living arrangements, and future relationships and family structure. Having a disabled child may also affect parents' allocation of time and financial resources to their healthy and unhealthy children, their parenting practices, their expectations of healthy siblings in terms of achievement, responsibility, and short- and long-term contributions to the household, and the siblings' health and development. Finally, having a disabled child in the family may affect the contributions of time and financial resources on the part of the child's grandparents or other extended family members, the relationships of those individuals to the core family, and the financial, physical, and emotional well-being of those family members. All of these potential effects on families have implications for the health and well-being of disabled children.
Today’s parents face a world of challenges with everything from keeping themselves healthy and happy to providing their children a safe environment that fosters the physical, emotional and social growth of their children in today’s society. Sometimes the everyday demands of life seem too great to overcome and families will experience stress and/or crisis as they try to survive. Often families will fall apart or choose to split up the family unit in response to money struggles, addictions, abuse, health, or just plain unhappiness. It is no surprise then to learn that having a child with a disability can also drive families apart or into a state of chronic stress or crisis. This does not have to be the case. This article addresses not only how having a child with a disability can impact the family system, but also how families can use their circumstances to become a more resilient and healthy family.
Impact on Family Life 
• Caregivers play a central role in the lives of children and their own wellbeing is inextricably 
linked to that of their children. 
• Compared to families of typical children, caregivers of children with disabilities experience: 
• increased time demands (everyday care, medical appointments) 
• higher medical costs (2.5 – 20x typical amounts) 
• greater childcare challenges (respite care, special accommodation in regular programs) 
• more employment constraints (work schedule, choice of occupation) 
• lower income 
• greater stress, anxiety about the future, lack of sleep 
• Caring for a child with a disability may result in an increase in a wide variety of both physical 
and psychological health concerns for caregivers. 

“…it is not the child’s disability that handicaps and disintegrates families; it is the way they react to it and to each other” (Dickman & Gordon, 1985, p. 109).