On the first day of Christmas….

1st-day-of-christmas

Every year a few weeks before Christmas friends and family would begin to call and ask, “What can I get David for Christmas?”  Each year David would lose more of his sight, physical ability, and cognitive skills.  While his love and passion for the holiday never waivered, his ability to express what he wanted and our ability to find meaningful gifts grew more and more difficult.  People were creative.  My brother Wayne would always find the loudest and most obnoxious noise making toy possible.  Thank you Wayne!!  There was a never ending supply of Adventures in Odyssey CDs, soft and cuddly animals, NY Yankee paraphernalia, microphones, tape recorders, and country music.  David was always happy to open a gift, no matter what it was, and then give the giver one of his famous hugs.

But not only was it hard for our friends to find something to give to David, it was also a challenge to  know what they could give us, how they could support us.  I’m sure there were some of our friends who simply were afraid to ask us what we needed.  Others felt guilty that they hadn’t been in touch so never reached out.  I’m sure we seemed distant at times, overwhelmed, and when asked what we needed our knee jerk reaction was, “Oh nothing, we are doing just fine.”

So the next time someone asks you “What can we do for you?” give them the following 12 ideas.  There are people right now who want to love you, serve you, help you but they don’t know how.

12-days-of-christmas

  1.  Help with my other children:   Sometimes all I need is an extra set of hands.  You could read them a book, help them with homework, or pick them up from an after school activity.  You might become someone they can feel safe to talk with about their brother or sister.
  2.  Babysit so we can go out on a date:  It goes without saying that having a child with special needs can be devastating to a marriage or any relationship.   I can’t even explain to you how a break improves our mood and energy level.  I know you are afraid you can’t do it, but we would never leave you unprepared.
  3. Cook us a meal:  At the end of the day I am often so exhausted that cooking a meal overwhelms me.  This then makes me feel guilty that I am not caring for my family.  If you really want to knock it out of the park, ask us what we like to eat. 
  4. Do my laundry:  I simply need help staying on top of the daily barrage of dirty clothes, diapers, and towels.  Yes, you will know if one of us wears boxers or tighty whities, but that is OK with me.  
  5. Clean my house:  My house is filled with wheel chairs, adaptive equipment, boxes of diapers, medical supplies, toys, bikes, and lifts.  I want and need order but at the same time know my first priority is to love and care for my children.  My pride has stopped me the past in asking for this type of help.
  6. Be my friend: I am lonely and often afraid.  While I am the parent of a child with special needs, I am very much like you.  I simply need someone who will listen to me.  I know I can be a “Debbie Downer” at times, but please don’t turn away from me.  I need and want to talk about something other than my child’s needs or my hurt.
  7. Pray for me: I long to believe that God loves me and that He is good and all powerful.  Honestly, I struggle believing this.  It is a real battle for me and I don’t want to lose my faith.  Ask me specifically what you can pray for.  If I don’t have anything specific, that is OK too.  Remind me that you are praying with a quick email.
  8. Be my Uber:  While I wished I could be in two places at one time, I have discovered it is impossible.  There are many days I simply can’t get to school to pick up my daughter, pick up the prescription at Rite Aid, send the package at the post office, and go shopping for lunch supplies.  While I know Uber is not legal in NY, this is different!
  9. Remind me that it is OK to care for myself:  I battle daily with guilt that I am not doing enough to care for my child.  Often I sacrifice my own wellbeing for their wellbeing.  Tell me to put the oxygen mask on me first and then onto my child.  Encourage me to sign up for a weekend at David’s Refuge or some other type of respite program.
  10. Include my family and child in your life:  My child rarely gets invited to a friend’s birthday party.  I try to convince myself he doesn’t realize it, but I know he does.  We are loud, we have lots of stuff, it is hard to communicate with my child, and often there are tantrums.  If you are willing to try, I can help you understand my child’s and our families special needs.  We would love to visit.
  11. Be my cheerleader:   Everyday I battle to make the best life for my children.  Insurance companies don’t want to pay for certain meds and treatments.  Neighbors complain that my child is too loud or disruptive.  Every IEP is a struggle.  I need you to encourage me to keep battling.  You might even want to write us a note and tell us you love us and are praying for us.
  12. Give me the gift of your grace: I can promise you there are going to be days I am going to snap at you, forget to call you back, cancel a meeting, and be grumpy.  Sometimes I don’t even know why I act the way I do.  Please give me the benefit of the doubt and extend to me some grace.

I hope you get a chance to share this list with all your friends and family.  Be brave and give them the opportunity to give you something you need.  Merry Christmas!

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