Today’s blog will take a different direction than it normally would. Typically, I would write about a special needs topic “du jour”, but I wish to shift the focus to 3 of my favorite things that are relevant, whether you have a special needs child or not. I like to call them My Inspirations or The Gifts that I need in order to live this often very complicated life. I wouldn’t leave home without them, and because, like you, I am often stuck at home right now, I need to find a way to embrace them wholeheartedly. They are: Family, Friends, and Faith- now more than ever, we need these “three amigos”, as each one of us attempts to navigate our difficult daily circumstances. It isn’t easy and many days it’s just plain overwhelming to go one step further. I know that I have felt that way a number of times over this past year.
I think one of the lessons the Covid virus has taught us is just how many things we were not dealing with or facing prior to the pandemic. Back in the good old days, most of us were going about our daily routines, too busy to deal with relationship challenges , certain child issues, or issues within ourselves. Distractions are a powerful thing and give us the false impression that we’ll get to that “outstanding problem” tomorrow because we have too much going on today. Or maybe our problems will resolve themselves. We have all done this; it’s so easy to focus on other things rather than important issues that really need our attention. Let’s face it, it will take work, in some cases emotional work or maybe even physical pain that we don’t want to face. I am guilty as charged in this regard. In our defense, as parents of disabled children, there are certain days when exhaustion prevents us from getting even the very basics done. I have definitely been there too, especially right now, while Brian is mostly home. I have often wondered at the end of the day: how exactly am I going to get out of bed tomorrow morning and do this all over again? I will say some mornings are definitely harder than others and I pray that I can take things, one hour at a time… That has to be enough, at least for now.
Our relationships with our spouses/partners have also been challenged. My husband and I have never spent as much time in the 18+ years we have been together, as we have in the past 11 months. Jim had always worked long hours as long as I have known him, often leaving early in the morning and returning home shortly before Brian’s bedtime to read him stories and put him to bed. That was our normal routine for almost 18 years until March 2020. What an adjustment this has been for the 3 of us! Of course, there have been numerous positives, like more family time, no more long commutes to work, etc, but you can be sure that there has also been more conflict, getting on each other nerves, and the desperate desire for things to return as they were. Regardless of how much you love your spouse and children, each one of us still needs our own personal space, which has been at an absolute premium these past several months. A few blogs back I had mentioned how I had opened my kitchen window to let out a primal scream one day last Spring, when I was really feeling the stress of home demands. I confess this has occurred other times as well, and yes, it felt great! It’s still my “go to therapy when things get really dicey at home.
So, my husband and I now try to resolve issues that should have been addressed pre-covid, but we still get distracted sometimes and place our problems at the bottom of the inbox for “some day”. Right now is that “ some day” and it has not been easy, believe me, but we are trying. By the way, I am convinced more than ever, that men are from Mars and women are from Venus. It’s a wonder how men and women can even communicate and actually be understood by one another sometimes… We are a slow work in progress, even after 18 years. I sure do miss those old carefree days of distraction and denial, when challenges could just be postponed or not acknowledged at all . There is something about being constantly together that changes that, for better and for worse.. Yet, ultimately family ties are the ones that bind the strongest and deserve our undivided attention. Family is everything, especially during a pandemic, but in all seasons of life, regardless of what is happening. Family is our “go to”, our end all, and our home, regardless of where that is,or literally how close together we live.
Absence of connection over this past year has also made the heart grow fonder for our friends, many who we have not seen in the past several months. I’m grateful for the phone and social media, but there is no substitute for being together with those who we are privileged to call our friends or perhaps we may call some special friends our sisters or brothers, because we have forged such close relationships with them. I miss seeing my friends, giving them a big hug upon arrival and departure from our meeting place. I miss the laughter that we share, the listening ear, the latest news, encouraging words, and sage advice. I miss the ritual of sharing a meal with friends in a place of ambiance and warmth. I know that we will be able to create wonderful memories with friends once again in the future and look forward to that very much!
In the meantime, the waiting can be so hard, especially this Winter, when the cold weather, virtual learning, and constant confinement at home exacerbates loneliness. I know many of our kids feel this way too, and they especially, need their friends more this year than ever. Brian with his profound disabilities also understands the value of relationships with others, despite his inability to speak. Brian loves his bus friends, school staff, school friends, home therapists, and volunteers. Brian values the social connection that he has with each individual; they bring him great joy. Each one of us were born to be in relationship with others. Our lives derive more meaning and joy from our friends and it’s this gift of friendship that is often the glue that holds us together when the times are most difficult. I pray it won’t be too long until we are finally reunited with those dear ones who enrich our lives so much. I do believe this WILL happen, we just have to hang in there a little longer..Spring is on the way, and with it, warmer weather, outdoor activities, and times ahead with friends. Keep the faith and keep busy in the meantime, a wise friend once told me. I honestly couldn’t agree more! It is my faith that ultimately keeps me afloat in life’s high tide: when I am broken, I am made whole, when everything is hopeless, I am renewed with hope, and when I am weak, I am given strength to endure.
Speaking of faith- it is a big part of who I am now, but that wasn’t always the case. I was raised as a Catholic, and went through the rituals of Mass and grace before meals, but it wasn’t until Brian was born did I realize just how much I needed God . It’s funny how certain life circumstances can bring you to your knees: I would say that having a disabled child would qualify as one of those instances. My husband’s 3+ year odyssey with unemployment was another, as well as Brian’s additional diagnosis of autism and my colon cancer. It was truly the “trials of Job” for Jim and I during the first 11 years of our marriage where I spent many days asking God “why”? Wasn’t having a disabled child with Down syndrome and autism more than enough? How are we going to keep our home with Jim out of work? Colon cancer- are you kidding me?! Boy, was I angry!
Inevitably, and eventually, I got to the end of myself because there was no where else to go. I finally relinquished control and acknowledged to God that He would have to do something with our broken and what appeared to be hopeless circumstances. It was that very day back in September 2009 that God began to show his faithfulness and love for us. His love and support was ALWAYS there, but God has a way of doing things according to His timetable, not ours, and it’s for our best. Waiting on God’s perfect timing continues to be a challenge for me, though, so I have to often remind myself of His proven track record in my life. True to His nature, God was faithful in His provision of people, resources, love, and support from both our extended family and friends that got us through a heartbreaking, tumultuous time in our lives. We still wear the battle scars from these transformative life experiences, but we are stronger, more compassionate towards others, and have had our Christian faith renewed, none of which would have happened, if we had not gone through the fiery furnace. God already knew we would come out of these harrowing experiences refined like precious gold because of His grace. There is nothing quite like amazing grace, and my life has been forever changed for the good because of it.
One of my favorite Bible verses comes from Jeremiah 29:11: “ For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future”. Now more than ever, we, our families, our friends, and our nation, need hope for the future, as we continue to muddle our way through a difficult pandemic that has taken hope away from so many. I may not know what the future holds, but I know who holds the future, even during the darkest hours…
May God richly bless you and yours! May your days be filled to the brim with beloved family, close friends, and an unshakable faith in both good and bad times.
Until next time, thanks for reading. 😊