Let's Get Real - A Very Raw Inside Look at Life At This Moment

This week, my body told me I needed to stop.  In fact, I'm using most of my energy to write this today because I feel that it is so important.  The Holy Spirit has laid it heavy on my heart, and I urge you with all that I have, to take the time to read it.  Forgive me if my words don't make sense or do not flow - I've spent time in the ER this week and we've dealt with some very big blows.  Now, on to the point . . .

I want to give you a mere glimpse of our daily lives.  Most importantly, this type of schedule, or set of similar events, is not limited to just our family.  It's what families face daily, in and out, day after day after day; year after year.   Also, please know that this is NOT me having a "pity party".  It's real and raw.  It's the life a bereaved family.  The life of a special needs family x3.  The life of a woman with chronic illness.

Imagine with me, if you would . . .

1. Dealing with the chronic illness of a child for a good part of ten years:  

• Hospitals.  Tests.  ER visits.  
• Weekly therapy visits.  
• Calling nurses and doctors on a weekly basis.  
• Dealing with insurance and the heaviness of "how in the world will we pay for this thing that is not covered by insurance?".  
• Home medical equipment and diapers larger than those they sell in stores.  
• How do we safely transport our child from one place to another?
• School, IEP's, fighting for what your child deserves there, like services and therapies
• Loving and endearing yourself with other families affected by the same illness, mourning with many (all too frequently) whose babies die because of an illness that we cannot cure. 
• DEATH, all around you. 

      2.  The heaviness of the loss of a beloved child.  Having watched that sweet child take their last breath.  Having watched as the funeral home carried your baby away, out of your bed, away from your home (this is a reality for more than you know). 

• Thoughts of how it will affect your other children
• Counseling for other children
• Counseling for yourself
• The worry of how this will affect your other children throughout their life
• This of course, means more appointments, more therapies, more phone calls, more bills
• Visiting your baby's grave, hoping to find peace, decorating it in their honor.

Think about the realities of having another child with the same issues, knowing you will go through the SAME thing.  One day, you will bury them too.  One day, you will face that brokenness again, and so will your children.  

      3. Add another precious child dealing with a health issue that you can't see on the outside, but inside he is roaring and out of control, of no fault of his own (Autism, Aspergers, PANDAS, Tics, OCD, other behavioral issues)

• Fighting for what your child needs everywhere you go
• Therapies
• Doctors of different kinds
• Tests and bloodwork
• Special classes
• Calls from school many times a week because of a frightened child
• Fighting for awareness for this disease
• Researching the disease and connecting with other families
• How will THIS affect your other children?

      4.  Basic Questions:

•  How does this affect you spiritually?  
• When do you find time alone with the Father?
• What about your marriage?  When do you find alone time together?  How do you afford alone time?
• What about dinner?  When do you find time to plan and actually make dinner?  
• Exercise
• "Me Time"
• What about your JOB?  How do you dedicate yourself to that?  
• When/how do you go to church?  
• How do you mix in your OWN chronic illness - tests, doctor appointments, therapies, etc? 

SO many families around you, facing similar things.  They may be silent.  They may be tired of asking for help.  They may be tired of accepting help for years on end.  They may be tired of sharing their hurts and brokenness. No matter what, they are there and they are just as important as your healthy family.  

This week, in the midst of school starting, and my own responsibilities, Lucy required medical attention at the hospital.  It wasn't too much out of the ordinary, but it was rough to see her like that after she's been so stable.  At one point, I literally left a meeting with two of Henry's specialists (and Mike), continuing MY part of the meeting on speaker phone, as I headed down to pick Lucy up to take her to Children's Hospital.  This week was rough, not only with Lucy, but also with Henry, as we are making major changes to his treatment.  

All of a sudden, at the end of this week, I found myself overcome with heart issues.  I spent a day in the ER, running every sort of test (I've also had two minor surgeries this month, but although this visit had nothing to do with that - they just had to make sure). The conclusion:  no one knows.  The doctor was strong in his decision that my symptoms were very real (thus the many tests), and this, in NO WAY, was a panic attack, or anything like that whatsoever.  

Personally, I don't know what's going on other than although I don't feel tired, I guess my emotions are however, and my body stopped to show me just that.  

The Point of this is NOT to whine or overshare, or gripe at what God has given us to bear.  

  THIS MESSAGE IS ACTUALLY FOR YOU, THE BELIEVER . . . 

YOU, My Friend, are called to serve, to love, to give - over and over and over and over, infinity, JUST LIKE JESUS!  YOU are His hands and feet. 

If you have the down time in your life for extra lunch with a friend, or maybe things that aren't necessarily "needs", then YOU can serve your sister, your brother - here, now, no excuses.  If you aren't dealing with chronic illness, death, or other more serious issues, YOU can step out and physically love and serve hurting families.  It isn't only overseas where you should give, or to the downtown homeless project, that is also oh-so-worthy.  Your calling is to those Believers who are SUFFERING HERE, on earth, within your community.  It doesn't matter if you've done it before.  Do it again.  And again.  And again.  

Here are some important insights as you choose to love on families like ours:

1. Don't expect "thank you" notes, emails or even texts.  Sometimes families and individuals are merely surviving.  Please, don't take this personally and don't let this prevent you from serving in the future.  

2.  Don't often ask, "What can I do to help?" or "Is there anything I can do?".  While these gestures are mostly sincere and come across with true love, they just add one more thing for a caregiver to think about. 

Here are some examples of what to do instead of asking those pesking, well-meaning questions:

• TELL the family or individual you are bringing or doing
• ASK them what item or evening would be best for you to help or donate your time
• ASK what type of gift cards are best
•  

Even if you cannot financially afford to give gift cards, groceries or treats, you can give of your time and energy with things like laundry and cleaning.  Trust me, ANY sincere offers are most welcome and remind the family that they 1.  Have friends who are standing by their side  2.  People haven't grown too tired of their 

3.  Going along with #2 - DO say/do/ask the following . . . 

• PRAY!  Have your family pray along with you, as these are people within your community
• Gift Cards - leave gifts on the porch or in the mailbox
• Messages/Cards - Send encouraging messages - your words can bring life!  
• Meals! (I don't know when we had a home-cooked meal just bc of time and exhaustion and I know this is true for parents of multiple children with special-needs). "Hey, I'm going to bring you dinner this week.  What night is best for you and do you have any requests or food allergies I need to keep in mind?"; 
• Men/Daddies, who are SO often forgotten - take them to lunch, send texts, pray for and with them, asking, "I want to take you to lunch and catch up with you, Friend!  What day is best?".
• Fun gifts/Dollar Store toys for the kids - especially the siblings! 
• Gas Cards - Surprise the family with gas cards (I drove close to 100 miles last Thursday just between appointments and this is common among special-needs and medically-fragile families)
• House-cleaning -"I would love to clean your house for you bc I am sure that's the last thing on your mind right now!  It would be a blessing for ME to serve YOU in that way.  How do you feel about that and could you give me a day within the next two weeks that would work for you?"
• Date Night - "We want ya'll to have a night out as a couple!  What do we need to do to make that happen and please plan on us watching your children so you don't have to use your family". 
• FRIENDS (this one is big!!) - Remember the parents need an outlet and friends too!  "Let's do a 'Girls' Night'!  Does Friday or Saturday work best for you?".  Just like our kids don't get invited to many birthday parties or special events, WE often don't get invited to outings with friends ('We', as in those within the special-needs community).  I think it's because friends think we must be busy/overwhelmed, or that getting out would be too hard for us; maybe they are understandably tired of hearing of all of our drama and sickness.  All of this could be true AND understandable, but please let US decide whether or not we need to say, "no".  PLEASE, invite us.  PLEASE, include us.  You don't know what it's like to feel forgotten; it's incredibly isolating and you can make a HUGE difference just by sending an invitation! 
• Lawn work - Go over and mow the lawn and do yard work,, without asking - make is a surprise! 
• Financial Support - Give a check or cash to the family, marked for medical expenses OR even for a "family night out", acknowledging those are few and far between.  
• Gift Cards - Surprise them with gift cards, letting them know you would love to help provide for groceries this week! 
• Siblings - If you know the family is home, drop in and take the typical siblings out for ice cream, making them feel special and treasured.

Friends, please don't forget Us.  Please don't forget our Family, but more importantly our Special Needs families who are in every community, in every school, and everywhere you go.  Don't assume that someone else is taking care of them.  Just Don't.  YOU do it.  YOU step up, even if you've done it before, do it again.  And again, And Again.  

Thank you for suffering through this long message.  I hope and pray the true point comes through, and I'm trusting the Holy Spirit to do just that.  Thank you too, for all of the many people who have stood by us, who have given to us, who have served US - it has NOT gone unnoticed and we are forever grateful.  Our hope is for every special-needs family to experience this same Reckless Love.  Don't forget this Precious Minority.