Hey,I am a Mom, too.

I AM A MOM. 

October 7, 2013

I am a Mom.  I have three kids.  They are 17, 15, and 12.  Lot's of people are Moms.  There are thousands of kids just in my town alone.  And of course, they all have a Mom.  Typically.  Not always.  But they have someone.




Being a Mom to a disabled child in a wheelchair is just another way of being a Mom.  But instead of enjoying PTA (who has time for that?) meetings, going to Yoga class, meeting friends for coffee, and preparing meals for the family I have a long list of responsibilities.  I don't feel like I am always very good at organizing myself, and that is because I feel like I'm stuck in quick sand, gasping and grasping to get back onto the solid stuff.

If you asked me at this moment, What does taking care of Daniel entail, I will spill out whatever is in my head...  here goes! Spilling off the top of my head.  This is not a complete list.

• Gastroenterology for nutrition and stomach related disorders.
• Pulmonology for breathing, asthma, aspiration risks, making sure Daniel doesn't get congestion.  Pnuemonia prevention.  Need to get that Flu shot!!
• Neurology. Seizures. PMG causes seizures.  They are the silent demon.  Need to go for EEG's and blood work, because seizure medications are tricky.  Must monitor blood levels in association with growth.  Neurology is my right hand with Daniel.  
• Endocrinology. The bone doctor, as we call him.  Crap, need to get the blood work there too.  Daniel's bones are demineralized and endocrine helps us monitor calcium and phosphorus in the bones.
• Orthopedic surgeon. We have two.  One is for the hips and general ortho needs.  Two hip surgeries, and the liklihood that eventually the hips will go dysplasic again.  Every 6 months the x ray tells the story.  
• Spinal orthopedic surgeon.  Now that Daniel has a back full of metal straightening up his spine, there are concerns and continual monitoring of the bone fusing, and any possible issues of infection in the site.  Scoliosis would have probably killed him eventually.  But this surgery was risky.  
• Physiatrist.  What they call "Pediatric Rehabilitation Medicine" helps us with muscles and spasticity, recommending and prescribing surgery, writing scripts for equipment needs, and inspecting braces, botox injections.
• Therapy.  Monitoring what is going on with Physical therapy, Occupational therapy, and speech therapy both at home and at school.  Researching additional therapy, music, aqua therapy, etc.
• Social Services and Katie Beckett waiver program.  Daniel's insurance is acquired via social services and the waiver is his title 19 waiver.  I have to make sure appropriate forms and paperwork are completed on a timely basis.  When things are not approved, appeal.  Call for help.  Request nursing hours.  It's pretty confusing because I do not have a case manager per se.   We have two different agencies providing home services.  

• Equipment needs. 
• Supplies ordered. Medications renewed and picked up. 
• Issues resolved with broken equipment from the equipment repair department. 
• Special needs BED breaks, must contact New Hampshire.  Same for the lift system. Prism Medical
• Mri's, x rays, EEGs, blood work, barrium studies, endoscopies,   
• ATG Rehab. 
• Professional Home  Care.
• Byrum Health care.  Order diapers. 
• Buy wipes.  Buy diapering products.
• Lift van.  6 month maintenance.  Repairs. Ride-A-Way in East Hartford is one hour away.  
• School Education program.  IEP's and PPT's.  
• Drooling. 
• Hand biting. 
• G tube changes. 
• Appropriate toys, and activities.  
• Home standing.  
• Apps.  
• Laundry, pads, bedding and keeping his room sanitary.   
• Monitoring him while sleeping. 
• Financial concerns for his future.

WHEW!!!

And hey what about this too.  I am also the regular Mom. Taking him to the dentist (needs antibiotics first).  Hey we have a "regular" pediatrician too for "regular" things like immunizations, physicals, and general illnesses. Daniel needs new clothes for the seasons, and he also needs to have hair cuts and a little bit of shaving.

Watching Thomas play football

And now, we have Henry the "service pup" in training.  A wonderful thing, but to me, like a newly acquired child.  Not just a dog as a pet, but a very special companion trained to be with Daniel and bring him support, friendship, comfort and more.  Woof.

Motherhood is about unconditionally loving your beautiful children, and providing them with everything they need to grow into adults.   Special needs Motherhood, is unconditionally loving and caring for a completely dependent individual for the REST OF YOUR LIFE, or the CHILD's LIFE, whichever comes first.

Daniel, Henry and me always right there...

I am a Mom.  I am a wife.  Since I don't work full time, or much time, or any time sometimes I am expected to manage all of the finances, manage the home repairs, manage the auto repairs, grocery shop, cook, clean, dog duties, go to the dump, and everything else you can think of  regarding a home. I am a Mom.  Just like so many other Mom's.  I don't sleep much.  I have health that is deteriorated. I dream about not worrying about money.   I wish I would stop signing into the bank app to make sure checks didn't bounce. I rarely have "enough".  I always have to juggle.  I hate the anxiety on top of everything else.

I try to make ends meet. (help)  Daniel's expenses completely tip the scale. (help) The "normal" things like lessons, football, school lunches, and new sneakers I could handle.  Look at my list above, it's not even everything. Daniel is an expensive child.  Many things are compromised.

Some days I cry.  Some days I rally like a freaking soldier out to save the world. No going out to dinner, no second honeymoon by the sea, without a nurse I can hardly take a shower.  I love my kids.  One is successfully off to college, she's beautiful and smart.   The youngest is 12.  I'm still going to be doing all of the above listed things, year after year, while most Moms can find new hobbies, new jobs, buy new cars, and shop for clothes I will be sitting here trying to find ways to keep Daniel healthy and safe.  Special Needs Mom's are like that.  Our kids, don't leave.

This Pup is my best friend

Fundraising has helped so much. I need to pay for so much.  As I sit here today, writing this, I am worrying.  Costs here monthly are thousands above a normal home. People who realize the dark hole that this life can be,  reach in try to provide relief.  Sometimes it's money to Daniel's account.  Sometimes its a sunny yellow plant on my doorstep.  Sometimes its a bill from the plumber that says, amount due ZERO.  Sometimes it's just another Mom treating me like a regular Mom, but that doesn't happen much.  Because I'm special.  Inspirational. Strong. A role model. Incredible. Super Mom.  And then SuperMom asks for help.  Do you know that it's really hard to ask for help?  Now I've realized that God sends miracles in the form of connections.   People want to help.  And in turn they develop a relationship with a very special boy and his very not "normal" Mom.  I think Sandy Hook, CT is a nice place to raise my kids, I want to stay.

My children.

Well.  I am a Mom.  All Mom's have challenges. This is my challenge. "Providing Daniel with the best quality of life possible, while also keeping a roof over our heads and a safe car to drive, and food on our table."  

I am a Mom.  I am not super human.  I am lonely. I am depressed. I am hurt. I am stressed. I am happy. I am sad. I am exhausted. I am mad.   I am whatever God gives me as my daily dues.   I love my kids.  My kids love me.  This is not the Me I signed up to be.  It's all just fine, it's got to be.  Please, just remember "me".