The Days Are Long, but the Years Are Short
When our son turned four I told my mother, “The years since he was born feel like a lifetime. Maybe it’s because we haven’t gotten a complete night of sleep since he was born.”
Written by Jolene Philo
“The days are long, but the years are short.”
I repeat this phrase while I sit on the couch listening to my 7-year-old grandson read for a half hour every evening.
Each time he turns a page, he says something like, “Wow, Grammy! What do you think that is?” or “I wonder what will happen next?” He ignores the words on the page and launches into several winding, imaginative explanations.
My grandson really, really likes to talk. And use his imagination. As for the reading part? Not so much.
Which is why I eventually have to suggest, “Read the page and find out.”
He follows my suggestion––he can read more fluently than he believes––and finds out. Then he turns the page and begins the same process all over again.
To contain my impatience, I whisper to myself, “The days are long, but the years are short.”
One evening as we read, my mind wandered back to when our son was young and medically fragile. When complications arose––maybe he had a fever, refused to eat because of an oral aversion, or vomited his food because of an esophageal blockage––our days were very, very long.
Should we wait to see if he got better? Or worse?
Could we wait until morning to go to the doctor? Or call him right now?
Should we race to the emergency room in our car? Or should we call the ambulance?
Not only were the days long, but also the nights.
When our son turned four I told my mother, “The years since he was born feel like a lifetime. Maybe it’s because we haven’t gotten a complete night of sleep since he was born.”
Mom smiled and said, “The days are long, but the years are short.”
My grandson turns a page and explains, “Look at that shark! What’s it’s name?”
His words draw me into the present. I smooth down his honey-colored rooster tail and inhale his little boy smell. He leans into me, and together we sound out a challenging word. He looks up at me and smiles in triumph.
“I’m getting the hang of this, Grammy!”
He is getting the hang of reading, and I am getting the hang of the fickleness of time.
I think of my son, whose early years required several corrective esophageal surgeries before he got the hang of eating and swallowing. He’s a middle-aged man now, healthy and independent.
Where did those years go?
I look down at my grandson and smile,
grateful for this precious half-hour together,
grateful for this reluctant reader’s victory over a pesky word,
grateful his dyslexia that brings us together each night,
grateful for the joy of being part of his life,
grateful for the wisdom gained through the special needs of my son and my grandson.
The days are long and the years are short, and in the eyes of God, both have eternal value.
Written by Jolene Philo
Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. She's also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon. See Jane Sing!, the second book in the West River cozy mystery series, which features characters affected by disability, was released in November of 2022.
Determining Where To Start as Your Child with Special Needs Nears Adulthood
Determining where to start as your child with special needs nears adulthood is no easy task. So today I’m sharing three–count ‘em–just three ideas. Whether your child is five or fifteen or somewhere in between, completing these three steps can help you jumpstart the process…
Written by Jolene Philo
Determining where to start as your child with special needs nears adulthood is no easy task. There are legal matters to address such as special needs trusts and guardianship, advocacy strategies to pass on to kids, and much more. The list is full of important things to address. Because your child’s eighteenth birthday is not yet imminent, they may be ignored.
You know what I’m talking about, right?
I’d like to give you a hand in determining where to start as your child with special needs nears adulthood. So today I’m sharing three–count ‘em–just three ideas. Whether your child is five or fifteen or somewhere in between, completing these three steps can help you jumpstart the process.
#1: Obtain Hard Copies of Your Child’s Medical Records
Electronic medical records are a great invention. They can also be very hard to access when hospitals and clinics update their computer systems. Who knows what will be in place when your child reaches adulthood? Therefore, it’s wise to obtain paper copies by contacting the practices of the doctors and therapists who treat your child. They can tell you how their process works and what costs may be involved. Most likely, you will be sent an electronic file to download and print out. If your child’s medical history is complex and ongoing, you may want to request records every year or two to update your paper files.
#2: Write Down Your Memories of Your Child’s Medical History
Write down your child's medical history. You probably remember what treatments (for physical, mental, and emotional ailments) your child received, but your child might not. Our son has no explicit memories of the tests, treatments, and 7 surgeries he went through before he was 5. So when he was a young adult, I wrote a narrative that included the hospitals where the surgeries took place, the doctors and surgeons who treated him, and anything else I could remember. Your memories can fill in the gaps in your child’s medical records and shows that your child is a person, not a patient.
#3: Share Your Child’s Medical History with a Trusted Person
Make two copies of your child’s medical records and history when you print them out. Slip one set in a manilla folder, label it clearly, and file it with your important papers. Package up the other set and give it to a trusted family member or friend. Choose someone who cares deeply about your child (include your child in the selection if at all possible) and will remain involved in your child’s life should something happen to you. Invite that person over for coffee and review the records and history with that person. Meet every few years for to update the paperwork and go over everything again.
Completing these three steps will ease your anxiety as your child nears adulthood. They may also help you build momentum to address other issues related to that important life change, so the transition is as joyful and smooth as possible.
Written by Jolene Philo
Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She recently co-authored Sharing Love Abundantly in Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities with Dr. Gary Chapman. Her blog for parents raising children with special needs and disabilities can be found at www.DifferentDream.com.
Thriving When First World Problems & Caregiving Problems Dominate Our Daily Lives
First world problems and caregiving problems are dominating my life right now. They’ve made re-entry after a month-long trip to celebrate my husband's retirement rather rocky…
Written by Jolene Philo
First world problems and caregiving problems are dominating my life right now. They’ve made re-entry after a month-long trip to celebrate my husband's retirement rather rocky. Here are a few examples of what’s been happening.
The installation of our new heating and cooling system required punching numerous holes in our walls…including my office. The work was supposed to be completed while we were gone, but won’t be done for weeks or possibly months.
That’s a first world problem.
Hospice re-evaluated my mother after she had bouts of major confusion and agitation while we were gone, but she still doesn’t qualify for their services.
That’s a caregiving problem.
The morning after a heavy rain, we discovered a leak in the new addition just as a workman came to deal with a backed up basement drain.
First world problem followed by first world problem.
My mother keeps asking when she gets to move in with us. I keep telling her that as long as work delays continue and our walls are pocked with holes, it’s not safe for her to move in.
That’s a caregiving problem solved by a first world problem.
That final confluence of first world problems and caregiving problems got me thinking about how they’ve impacted my life in the past.
Our newborn son’s condition at birth was an age old problem. His diagnosis and surgery at birth caused a host of complications and subsequent surgeries. Those complications were first world problems.
Had our son been born in a different country, not to mention in a different day and age, he wouldn’t be alive today. In other words, first world solutions for his condition caused first world problems and caregiving problems that our family dealt with for years.
During those years, all my thoughts, all life revolved around my son.
Was he getting sick again?
Did he need another surgery? Another test? Another procedure?
Could I pump enough milk to nourish his body?
Would he ever sleep through the night so we could sleep through the night?
Only rarely did my focus move from the immediate, the urgent, and the life-threatening to a broader perspective.
Only rarely–very rarely–could I move beyond myself and our son and see the blessings God had bestowed through our first world problems.
Our son was alive.
Many surgeons had the training to correct his birth anomaly.
His prognosis was good.
We had a supportive network of friends and family.
We had excellent insurance.
We had good jobs and understanding employers.
On the few occasions when I found the wherewithal to reflect upon the goodness of our first world problems in combination with the caregiving problems they caused, my heart beat faster. My breath caught. Tears flowed.
I saw the goodness and wisdom of the One who will wipe away every tear from our eyes in a world where there will be no more death, mourning, crying or pain (Revelation 21:4).
I saw, not the first world and the problems it creates,
nor my caregiving world and its problems,
but the world to come.
The promise of that world is where you and I can find the hope, compassion, strength, and endurance needed to thrive when first world problems and caregiving problems dominate our daily lives.
Written by Jolene Philo
Jolene Philo is the mother of a son born with life-threatening special needs and the daughter of a father severely affected by multiple sclerosis. In her 25 years as an educator, she integrated children with special needs into her classroom. She’s written 5 books about caregiving, special needs parenting, and childhood PTSD. She recently co-authored a book with Dr. Gary Chapman about how parents of kids with special needs can use the 5 love languages in their families. Jolene speaks at conferences around the country and internationally, facilitates classes about childhood trauma for educators, and trains special needs ministry leaders and volunteers. She blogs at www.DifferentDream.com. She and her husband live in Iowa.
Just Get Over It
Do you know what words have never helped anyone get over their hurt, their pain and their grief? This phrase right here…“Just get over it.” Yet this is a phrase I have repeatedly heard others say to parents who are grieving the loss of a dream of a typical childhood and the challenges their child will face growing up.
Written by Jonathan McGuire
Do you know what words have never helped anyone get over their hurt, their pain and their grief? This phrase right here…“Just get over it.” Yet this is a phrase I have repeatedly heard others say to parents who are grieving the loss of a dream of a typical childhood and the challenges their child will face growing up.
Wouldn’t it be nice if in the midst of your grief, you could flip a switch and say, “I’m over it.” I will never grieve this again. Life is good and I have completely healed.
However, that is not the case for many parents who have a child impacted by special needs. Sure, there will be periods where the grief subsides and the parent is able to dream a new dream and appreciate the incredible person that their child is but then there will be other moments when grief rears its head again and floors us. The grief is chronic.
Just get over it? How do I just get over it?
My son cut his leg this week while on a bike ride. What if I told him to just get over it and go on with his day? There would have been stones, dirt and grease from the bike chain left in the cut. What would have happened next? If left the way it was, the cut would have attracted flies and eventually become infected.
The reality is if I choose to just get over it, I am choosing to ignore it and just bury the pain. If I bury the pain, it will become “infected” and it will come back. It will come back as anger, resentment, health issues, sin issues and the list goes on.
When my son cut his leg, instead of telling him to “just get over it”, I listened to him. I let him share from his perspective what happened and then he washed off his leg.
Some of you may find yourself at this point of grieving. If you do, be assured that it does not mean that you love your child any less.
Healing takes time and we all heal at different rates. That is why a husband and wife can experience the same event but be in different places emotionally.
If you find yourself in this place of grief, I would encourage you to take a look at the Psalms and laments. It may even be helpful for you to write your own lament. If you find yourself stuck in this place of grieving, it may be time to meet with a counselor so you can get that listening ear.
But whatever you do….don’t “just get over it” because you won’t.
Written by Jonathan McGuire
