Restore the sparkle to my eyes, or I will die.
Don’t let my enemies gloat, saying, “We have defeated him!”
Don’t let them rejoice at my downfall.
My husband and I were “late bloomers” when it comes to parenthood. Many of our friends had school-aged or even graduating children by the time I began having babies. If you have had friends with older kids, you know how they love to tease and warn those who are new to parenting.
When your child is first diagnosed with a special need or serious chronic illness
When your child is first diagnosed with a special need or serious chronic illness, you experience perhaps the greatest amount of support and kindness you will ever be afforded on the journey. People show up with offers of meals or willingly give you a break without having to ask. They mean it when they say, “I’m here if you need anything.” They open up their wallets to donate to causes that assist your child. And they remember to ask how you and your child are doing when they see you.
But what about later on?
Unfortunately, as time goes on, people begin to experience what I call “compassion fatigue“. It may sound harsh, but they begin to zone out when you share information about your child. They don’t want to hear about it any more. It’s too heavy for them. They expect you to get on with life, and adjust to your circumstances with a sense of “normalcy”, pasting a smile on your face.
Nevertheless, your need as a parent doesn’t go away. That desire for TLC, reassurance, and love from others doesn’t dry up just because you have adapted. The need to talk things out in order to make sense of complex issues doesn’t go away. In fact, with every phase of our children’s lives comes a new adjusting to how life will be faced with the added factor of special needs. Bad school years come. Medical challenges occur. New tests, procedures or surgeries are scheduled.
It is in this long stretch of life as they reach the phase where they are no longer little or cute that we can find ourselves crying out like David did in Psalm 13. “How long?” The heavy judgment of others weighs upon us year after year. The isolation grows. We fight resentment towards those whose lives are seemingly without trouble. All we want is what we perceive everyone else as having.
If I could leave people with just 1 message from today’s devotion, it would be this:
Yes, the desperate fear of initial diagnosis has waned. We have overcome many hurdles with the Lord’s help. Still, that doesn’t mean that new obstacles, new frightening unknowns don’t suddenly appear. Our hearts need the strengthening that comes through the love and caring of others.
I’m not trying to throw a pity party. I am so very grateful that my kids are growing into remarkable people, each in their own right, but parenting kids like this is an endurance race. Too many days I don’t have the needed endurance. I am weary and battle worn. I still have deep needs. And so do too many parents like me who have no opportunity to tell you.
PRAY: El Roi, thank You for being the God who sees when no one else does. Thank You for also being my Jehovah Jireh, provider of all. Open the eyes of people around us today, Lord. Make them aware that we parents still need a break, still need love and support, no matter what our children’s ages.
Barbara Dittrich
Latest posts by Barbara Dittrich (see all)
- No, He Won’t Get Better - June 13, 2018
- 6 Ways Sharing Empowers Parents - April 6, 2018
- Five Phrases Special-Needs Parents May Never Hear - August 23, 2017
I’m experiencing this in the place I least expected it! And my girl is only 13, and still a sweetheart, but most of this “no longer cute” stuff is directed at people her age, as a general “you no longer matter” issue. I can’t detail more but it’s breaking our hearts. But God heals all wounds and I’m more proud of her today than ever.
Hi all I just thought this is about when our children are no longer little or cute, I would just like to say dont worry about the future,I wasted so much time worrying .My worst worry was my daughter used to scream at the sight of blood ,wouldn’t let you put a plaster on, I thought she will never cope as a teenager when her periods start,I prayed so much to God about it .When it happened at 13 it was a miracle she was fine,(she will be 20 this year) Also as you grow with your child you never really notice them growing into a adult it just seems to happen, So lets all trust God for the future and lets live for today, As God says we have got enough for today to worry about ,Let the future take care of itself,ps she is still just as cute and a little darling,,
I am all of these comments and some comments not mentioned.
Isolation is the worst however.
Lord God, in Jesus name, send all of us special needs parents and people more than we can handle when it comes to support from our churches, families, friends and para-support systems. Your word promises us that You will answer our prayer where two or more are gathered together all we need do is ask and believe. For those of us with broken believers, help our unbelief. Send more love, more power, more of Your Spirit into our lives. Give us favor with men and with angels. With tiny mustard seed faith show us mountains that have been and will be moved, because we’re exhausted.
We are your children and we love You albeit in a tired sort of way. Amen and amen.
Jeanie Amen to that. Come Lord Jesus come and Bless all special needs parents ,Show us the way Lord when our hearts feel heavy, Send you holy spirt to cover us with your peace and mercy, And bless all our children too Amen
Reading this and every ones comments make feel like I am mkt that bad of a person. I was always bullied when I was in middle school and it sucked. But when I got to high school the kids I went to middle school muchered. I was found in third grade I need to be in special ed. I do thinking slower then others and I prossese slower. Sometimes life is heard. At least I have a loving and supportive family and friends and boyfriend. They love and care about me so much.
I hope you guys understand what I ment even though I forgot some words and forgot to read it before I posted it.
Amanda, no matter what, every person is loved by God and bears His fingerprints. You just keep shining on, girl!
Bless you Amanda .I dont have special needs but my daughter and Grandchildren do,I used to worry about what people thought of me(I to was bullied at school) ,But God said to me, I have made you perfect,and I was not to worry what the world thought,, I was Gods child and its his path I am on not the worlds, Its the same with you,when you look deeper you have been blessed with a boyfriend and a wonderful family,Who cares what the world thinks of us we dont have to answer to the world,We are not lost as we know where we are going.Yes we get down now and again,But we just brush our selves down and start all over again,And its by Gods grace that he keeps us going,Praise the Lord
Glad I am not alone.
You are certainly not, Denie! My son turned 16 this week. The silence, even from family, was deafening.
hi so glad i found these comments ,my faith was dwindling,After all these years im being attacked,,thought in my head what a failure my life has been,who else has more than one disability in the family,And here they are on here,I have a daughter with downs,a grandson with aspergers and my biggest heart breaker is my granddaughter with severe cp,and she cant do any thing it breaks my heart ,I wish i could find a proper answer in the bible as to why but i know i will have to wait till i get to heaven, It can get hard when i really think of the reality of it all,But by Gods grace we keep going, I may have chose a different path to this one ,but when i gave my life to Jesus he chose this one for me ,so i try to do the best i can,If Gods happy with it for me then i must be to ,
Jaycee, every human has issues… Some we see and some we don’t. And although I tell many parents, “I would never believe all that I’m dealing with in my life if I weren’t the one living it,” it’s good to know we’re not the only ones.
you are so right there are a lot of us around,
We are exhausted! Just sayin’
AMEN, Sheila!
It’s nice to know I’m not the only one who has experienced this. I have twins who have special needs. They don’t have a “big” diagnosis like autism or down’s, but several little ones. They are non-verbal and function like 3rd or 4th graders. I just realized in reading this, they have never been invited to a birthday party, they have no friends; unless it is a group event they are excluded. I know it is hard to make that transition from acquaintance to friend but I wish someone would try. And forget getting any kind of support as a parent; no diagnosis not support group. I guess “they” figure I’ve got it all together by now. Guess what I don’t. And I hate feeling so isolated as a parent.
Wish I didn’t know how you feel, but I do. One-by-one we can transform the way people think, often by having them see us serve one another.
Thank you for this encouragement. I feel quite alone these days. My daughter is 12 now with special needs and it seems the friends and support I once had have all vanished. Her Autism is very prevalent now that she is older and most people I find avoid her and NEVER ask how she is doing. Our days are more difficult now as we struggle with issues of getting older than they were of her earlier days. Every day I wake up feeling lost and alone.
Just remember the title of the blog, Kim… You are NOT ALONE! Limping to the finish line with you and praying all the way.
SPECIAL NEEDS
“OUR” FATHER, YOU MADE US JUST AS WE ARE, ALL WITH A SPECIAL NEEDS TO KNOW YOU. WITH REVERSED ROLES NOW AGED WITH ADULT SPECIAL NEEDS CHILDREN WHO CARE FOR AGED PARENTS LIVING INDEPENDENTLY GROWING OLD TOGETHER CARING FOR ONE ANOTHER, “LOOK HOW THEY LOVE ONE ANOTHER.” ADULT SPECIAL NEEDS CHILDREN CARING FOR AGED PARENTS DOING WHAT YOU WILL FOR US IN THIS PLACE PREPARED FOR US TO “BE” MADE SPECIAL NAMED AS JUST ONE OF YOUR CHILDREN, A SACRED, HOLY PLACE NAMED HERE AMONG US WHERE YOU RULE WITH ALL THE RIGHT RULES IN ORDER TO LIVE AS YOU TAUGHT US TO “BE” FORGIVEN AND CLEANSED FROM ALL UN-RIGHT-IN-US DOING FOR ONE ANOTHER AS YOU HAVE DONE FOR US. WE OWE A HUGE DEBT OF LOVE OFFERED THROUGH YOUR SON, “OUR” SURVIVOR, YOU HAVE LED US SAFELY THUS FAR TO LEAVE US NOW, DELIVER US FROM THE EVIL ONE WHO STOLE “LUNCH” THE BREAD BASKET FEEDING “OUR” VERY SOULS IS ENOUGH TO LAST AN ETERNITY. THANK YOU VERY MUCH!
Thank YOU!
This article totally describe my situation .I always thought as my son grows older it would get easier . He is 24 has c.p ,tracheostomy,d.d .having a support system when he was young helped me get through the hardest time . But I do feel friends gave felt the “compassion fatigue” and I cant fault them . It does feel as though my son &I are alone in our own world . Thank you for posting thid article.
Jeannette, how ’bout we be alone together? Of course, with a God Who Sees, we can find comfort in knowing that we’re never alone or unseen. <3
I have found the core set of people you included from the beginning still stay very compassionate and supportive whilst the others who are kept at an arms length tend to ‘give up’ being supportive. This is great to build awareness that whatever stage we are at with our special needs kids, we never want to be alone and will always need. Thanks for sharing.
Shannon, I am so glad that you have a core group that has hung with you through thick and thin. That’s fabulous!
I’m glad it’s not just us! I appreciate you sharing as my husband and I have been discussing this lately. Our son is still cute and little but is entering his third year of life, and we’ve been noticing some space and indifference from those who once were more involved and would provide assistance. It’s become increasingly apparent that they don’t want to hear about the complications and often won’t watch him for us now because we think perhaps it requires them to be aware of his issues.
Hang in there, Ellie. Take heart in knowing that you aren’t the only ones going through this. Thank God sees all and ascribes such value to our children, no matter what phase of life they are in!
Thanks for sharing, Gillian. Glad it resonated with you.