Family Network TV

Hi Friends! This blog is a little different than the other’s I’ve written.

I’ve written a poem for all the moms out there raising children with special needs. I wrote it also with other women and moms in mind who don’t understand what it’s like to be one of “those” moms. I mean that light-heartedly because I’ve found that we have much to learn from each other.

We’re women, we’re moms and we all need the same things, and we need each other. Girl friends mean the world to us.  I know I need friends that “get it” and friends who don’t. Both have something special to offer in unique ways. You’ll find the poem on Family Network TV’s website at . My poem can be found here:

Family Network TV has been a great resourse and support to me and I recommend checking them out.

With love, Pam

What if…?

I hear my friends either joyfully or sadly announce, “I’m officially an empty-nester.” They question, “What will I do now? How will I handle it? Should I get a new hobby, begin travelling, go back to school?” Perhaps they start taking those cooking or art classes they’ve always dreamed of or begin a new fitness workout, take up dancing or meditation. Some turn one of the extra rooms in their home into the room they’ve always envisioned with white furniture and glass items that they always worried before would get broken. I see my friends free to go away for a weekend (or a month) without worrying about who will watch the children or whether they’ll be alright on their own. They begin buying “toys” such as boats and motorcycles and recreational vehicles or pick up old hobbies put aside long ago while raising a family. Some struggle a little or have a desire to nurture or help others, and I see them get new puppies to care for, or begin volunteering at a local shelter, food bank or hospital. Some have changed careers or retired and are now pursuing various other dreams.

The Empty Nest; I’d like to try it on for a couple days. I can’t quite picture how it would fit or feel. I don’t see that vision in my future. I shamefully fantasize about it, picture various ways I might imitate or pretend it exists for short periods of time. I even try to feel what it’s like for those who struggle with the empty nest, not quite able to step into their new role, and I feel for them. I dream about care-free vacations, sleeping late on the weekend, leaving my house without a plan or time I have to be home.

I’ve seen my friends who have children born with special needs or who have acquired physical, intellectual, and emotional disabilities or health challenges go through various stages. I don’t know if there are actually stages someone has clearly defined, but as I’ve seen myself and my friends go through life I’ve noticed these stages evolve. I would identify them as birth (or time of acquired disability or challenge), school and transition years, adulthood, and then aging of parent and child. Each of these stages carries its own unique set of rewards and challenges as we work through the doctor visits, IEP’s, therapies, parenting our other children, socializing, friendships, family time, finances, and so much more. Every person has their own way of dealing with these challenges and finding a way to work through them until they finally come to acceptance. We deal with a full range of emotions from joy and excitement to fear, grief, anger, disbelief, happiness, overwhelm, exhaustion, love and appreciation. Some find themselves questioning why me or why my child? Most of us learn we have gifts we never knew existed such as incredible strength, the ability to advocate, patience and more love than we ever thought possible.

As I find myself in this new stage of the aging parent actively parenting adult children with multiple challenges I know I will find the acceptance I found in each of the other stages and that brings me comfort. The burning question at this point though is a little different, not one that can be answered simply, yet one we are all asking when we dare. What happens when we are no longer able to care for our child who is unable to fully care for themselves? We have taught them as much independence as we can and we continue to guide them to reach their highest potential. We know if we don’t have a plan someone will decide this for us, or rather for our children.

The question turns into more questions as we watch others face the challenges of caring for their children while trying to care for themselves as well. What if that time comes suddenly and there is no plan? What if we have not yet been able to set up a trust (or don’t financially have the means to do so), haven’t got a will in place, a plan laid out, or answered that ultimate question of where they will live, with whom and how much time do we have to figure all of this out? Will someone care for, love and advocate for your child’s best interest? Will they fully accept, honor and value the person they are? Will they see the abilities rather than the disabilities, the possibilities and potential rather than the unachievable? What if…?

I moved across the country over ten years ago and saw one of my good friends the night before we left. She has a son who has Down syndrome and is a fun-loving, active young man who has a curiosity and love for life but certainly needed loving guidance in all areas. We joked about growing old and keeping up and she laughed and said to me, “I just have to live forever.” Unfortunately that did not happen, but she had built a support system and as soon as she was diagnosed she invited those special people to be in her life for the time she had remaining on earth. Together they made plans for her son’s future and that plan is being supported. I admire her courage, strength and openness to invite others in to her life, and be with her during her final days to support her and her husband and son. She remains one of my role models and reminds me that we have to be open,  and build a support system of people we trust. What if you have unanswered questions but have a support system, will all work out as it should? What if being surrounded by people you trust is the answer to all your questions? What if…?

Love is a Priceless Gift

Mom loved her rocking chair. It was where you would find her sitting most often (when she found time to sit). She would be there in the morning with her cup of coffee, reading the morning paper or chatting with someone on the phone. She sat in her rocker to read, knit, clip coupons, and listen to music or my sister playing the piano while she sang along. In the evening hours she may be found there enjoying a glass of wine and conversation. What I remember most though, is the pockets she had sewn that attached to the side of that rocking chair. These pockets held many very important belongings; among them a pair of scissors (specifically for cutting paper and not her good sewing scissors), but most important of all was a simple manila folder. This folder was top secret and off limits to anyone but her. It remained there at all times throughout the year.

We all knew what that folder held in the vague sense of the word. What we didn’t know was specifically what it contained. The clues could be found by picking up a magazine in our home. It didn’t matter which magazine (except National Geographic), where you would find, flipping through the pages, missing words, pictures, phrases, and even entire pages. Sometimes I would try to figure out what word or picture and which side of the page she had chosen to cut out and what it might possibly be a picture of, or what word was missing. It was fun guessing, wondering, and waiting, for that one day each year, when the contents of that simple folder would be revealed. That day was Valentine’s Day.

Ever since I was a little girl I can remember Valentine’s Day being very special. My mother took the entire year, for as long as I can remember, to collect words, pictures, letters and phrases which she would then form into cards for my dad, each of her five children and our spouses, and her grandchildren as our individual families grew. Near the end of January she would set up a work area where she began to put all the pieces together to complete the cards. She decorated the cards with other craft items and fun objects she had purchased or collected. They were bound or folded and a little different each year. We were not allowed in this area while she was working on them. She would make each one specific to who we were at the time, what our interests had been that year, and she would capture our essence and present them to us as a gift on Valentine’s Day. Sometimes they were funny; sometimes sweet and sincere, but they were always thoughtful, light-hearted and memorable. At one time she was making more than thirty cards a year for all her children, their spouses and her grandchildren. I’ve saved every one of those cards, and although some have gotten misplaced along the way, I cherish everyone which still remains.

I don’t think I ever fully realized what a huge undertaking this was until I tried to mimic this same tradition for my children. I did not go through near the extravagant work she did, but I still tried to make them special cards. I soon realized it really wasn’t my thing and that this tradition was best left as a gift to my children from their grandmother.

One year my mom decided she had done this long enough and was growing tired of the time and effort it took to continue to produce these wonderful gifts from her heart to ours. We all were so disappointed when she told us, so she asked if anyone would like to pick up where she left off and carry on the tradition as she had for the entire family. My sister Debbie was brave enough to volunteer. She made beautiful cards for all of us that year, and I still remember how touching the one was she made for Melissa. It had a big, bright, beautiful sunflower on the front and said something sweet, the exact words I can’t recall. Debbie found out firsthand what a huge undertaking this was and we all grew more appreciate and grateful for that gift my mom had given us each year.

Later that February my mom was diagnosed with cancer, and soon we would find out she was already at stage four. She died eight months later. We decided as a family her Valentine tradition would be buried with her, as that was a gift from her heart to ours, and no one could fulfill that very special role. Valentine’s Day will never be a Hallmark holiday for me. Instead I will always remember it as the day that took a year to make, year after year, with love from Mom’s heart to mine and back again. I do not recall this story with sadness in my heart, but rather with love and gratitude for the way my mother chose to express her love. She taught me that a gift should come from your heart and does not have to be anything of great monetary value. Mom and Dad painted a saying on the wall in our family kitchen which read, “Wealth Has Nothing To Do With Money”, and they lived by their words, expressing their love in ways that were priceless.

Remember to give love and kindness from your heart. Wear a smile on your face, in your eyes and in your heart. Offer a smile today to a friend, a lover or a stranger. Love does not come in chocolate or roses; it comes from deep within. As Mother Teresa said, “The most terrible poverty is loneliness, and the feeling of being unloved.”

With smiles and love from my heart to yours, Pam

Groundhog Day–Again

It’s Groundhog Day which is a day that has significance to me. In the classic movie, Groundhog Day, the main character wakes up to report if the groundhog sees his shadow, however for him every new day turns out to be Groundhog Day over again. He becomes stuck in a seemingly endless loop.  As the character in the movie becomes increasingly aware of his ability to change how this same day turns out his life finally begins to change for the better. As I’ve written many times I often refer to my life as Groundhog Day, in reference to the movie. When Ron and I spoke to prospective adoptive parent groups we often used this reference to help them understand what they would be undertaking if they chose to adopt a child with special needs. Admittedly, it drove some folks away, but the instructors never discouraged us from speaking the truth. Better to recognize now that you weren’t able to take on the challenge than later when a child was in your full-time care. We also learned how to make each day a new day, embrace and enjoy it even though it may appear the  same as the day before.

The wake-up scenes from the movie:

The significance of Groundhog Day in the traditional sense is whether or not the groundhog sees his shadow as he crawls out of his hole in the early morning hours. If he sees his shadow winter, it is assumed, will continue for six more weeks. We tend to think of winter as cold, dark and an imprisonment of sorts. It keeps us locked inside, unable to enjoy all the light, warm, bright sunny days that surely lie ahead in spring and summer. I’d like to offer an analogy of winter and its cold darkness to that of our own shadow; that deep, dark secret place we try to conceal and hope no one sees. It is the part of us we deny, pretend doesn’t exist,  hide, and know we can soon put behind us as the light is sure to shine again and bury the shadows within. When you woke up today did you see your shadow? Did you recognize it, acknowledge it and embrace it as part of your “whole” self? There is a common thought in our world today that we must only embrace the light, not give attention to the dark side that exists within us or it will grow. I believe in order to heal and fully live in the light we must first embrace and fully experience the darkness.

Debbie Ford, one of the authors of The Shadow Effect, states, “Our shadows hold the essence of who we are. They hold our most treasured gifts. By facing these aspects of ourselves, we become free to experience our glorious totality: the good and the bad, the dark and the light. It is by embracing all of who we are that we earn the freedom to choose what we do in this world. As long as we keep hiding, masquerading, and projecting [the negative messages we hide] inside us, we have no freedom to be and no freedom to choose.”

The movie, Groundhog Day shows us that we have the power to change our outlook and if you are feeling trapped, stuck and drained making a few changes can help us witness the change that is possible within each of us. But it also shows us the main character’s shadow, his dark side, the side we hope he soon identifies. It is only after he recognizes it himself, embraces it, sees how it’s effected his day after (same) day experiences that he is able to see the light, make conscious choices to change and experience life to its fullest. Today, I challenge you to look for your own shadow along with the groundhog. Will it be six more weeks of dark days ahead for you? Are you willing to embrace your shadows as part of your whole being, experience them fully and stop hiding in a dark hole, but come out to show the world your true self? You have the power to choose, to change, to shine your light, and the right to love every part of yourself.

Shine on! (Just Trying to Express)