My Favorite Gift

While rushing out the door to attend Brian’s holiday party at his school today, the contents of my purse fell all over the kitchen floor. Tis the season to be grumpy- especially when you’re running late, so I threw everything back in the purse and continued on my way. It’s been one of those unusually fast-paced weeks, starting with a medical visit for Brian in Baltimore, plus the regular shopping, cooking, cleaning, never-ending laundry, and holiday preparations. Like so many others during this time of year, I’m already tired, feeling some stress, and it’s not even Christmas yet! Not to mention the 12 day break that Brian will have after tomorrow…

Holiday breaks are both a blessing and a curse for many special needs families: it’s great to be together with loved ones, but so many of our kids struggle without a set routine, so that means the parents struggle too. Yet, the school staff of course need a break and deservedly so. I’ve decided this year to really take one day at a time and try to plan “an activity of the day” for Brian, while simultaneously pacing myself. This is no easy feat, as I’m inclined to be on the go more often than not. However, I’m starting to really feel the physical toll of caretaking this year for the first time. I’m actually surprised that I’ve been able to maintain a good pace with Brian for 16 years without issue, but things have changed and I need to follow the cues of what my body is telling me. It won’t be easy, for most mothers suffer from guilt from time to time for not doing enough for their kids- I certainly feel that way! But a reminder from my wallet while reorganizing my purse early this evening, put my priorities back in their proper perspective..

It is exactly 10 years ago this week, that I was halfway through my chemo infusions for colon cancer. I remember my oncologist wanted to make sure I had treatment the week before Christmas so that I could enjoy the holiday and actually eat all of the delectables. My medical card from Memorial Sloan Kettering Cancer Center that fell out of my wallet today, was my “ticket ” to colon surgery, chemo, bloodwork, and MRIs. This special card entitled me to everything that was necessary for my cancer survivorship, and for that, I am eternally grateful. Colon cancer taught me many lessons, especially those regarding self-care, for my life literally depended on it a decade ago. I continue to enjoy the privilege of cancer survivorship 10 years later, but, there is still a huge responsibility that goes along with that gift. It is critical for me not to squander time, waste energy, or guilt, when it does my mind, and especially my body that went through so much, absolutely no good. I still wear my “Purple Heart” through the neuropathies in my toes and finger tips, permanent nerve damage caused by one of the chemo drugs and activated by very cold temperatures.

All cancer survivors have special momentos that they will forever carry on their bodies, minds, and hearts from their treatment experience, forever changing them in ways they never expected.. That was certainly the case for me: scars from surgery, effects from chemo, and certain food aversions were just some of the physical effects. Mentally, I was broken for a while, but with treatment, time, and love from family and friends, I was able to rise like a phoenix from the roaring fire. My body became stronger and so did my faith in God, whose grace ultimately got me through the ordeal.

You really know when life has returned to normal when you start complaining about the ordinary things that used to annoy you before cancer. That certainly happened to me and continues to on a regular basis, case in point, dropping my purse today, and just this week in general. It’s a blessing to have ordinary aggravations again, not life or death concerns, such as wondering in December 2009 whether the chemo would work and if I was going to make it.. I realize how lucky I am to have the gift of life, over a decade after cancer diagnosis -it is my favorite gift! I have been able to be with my husband, raise our son, and watch him grow up to be a sweet soul- for this, I am most grateful. During treatment, I was so afraid that I would not be here for Brian; he was only 6 years old at the time. I’m so relieved that it is all behind me now.

I don’t know what the future holds, but I do know that while living my life in the here and now, it is meant to be lived in all of its ordinary, messy, frustrating, and wonderful ways. Ordinary has taken on a whole new meaning in a good way for me. I am grateful for today’s reminder of my membership once upon a time in a club that no one ever wants to be a part of. I was given my life and the opportunity to live it with more appreciation and meaning. I continue to try to do just that and this gift will always be my favorite, especially at Christmas.

Until next time, thanks for reading! 😊

Brian’s Daily Christmas

It happens every holiday season: the annual hustle and bustle of cleaning, cooking, and shopping. The “don’t make so much food”, “let’s not buy so many gifts”, or my personal favorite: “I’m not mailing any Christmas cards”. My husband was teasing me just the other day when I said that this year I would not be sending any cards. “Yes, you will- you always do, who are you kidding?”. He was right- the very next day I placed an order that should arrive very shortly. I really do love giving Christmas cards as much as receiving them, but always find at the beginning of the holiday season that I need a “jump start” to get in the mood. At the end of the day, Christmas is all about faith, family, and friends, sharing delectable food and gifts. We look forward to being with those close to us, but gift giving for Brian is another story altogether.

In our home, Christmas presents, or any present for that matter, mean absolutely nothing to Brian. It’s hard to believe that this is still true, even today. I thought that Brian just needed some extra time, opportunity, exposure, etc. Over the years, Santa bought a variety of toys that we thought Brian would like, but he ultimately had no interest in any of them. This was very painful to watch, for every parent takes delight in giving gifts to their children, hearing squeals of delight, and seeing their joy. Brian, on the other hand, would get upset, scream, and throw his presents on the floor, It was hard for Jim and I to understand at first and Brian’s reaction was certainly the antithesis of how both of us felt about Christmas presents. This is one of the many ways in which autism is cruel and an unwanted guest- especially at Christmas. So, we had to learn over time to accept and to discover what Brian was really trying to tell us. ..

I admit, I am sometimes a slow, but always hopeful, student of my son when it comes to many things. But I’m happy to report that in this particular instance, I finally understand…It was just last week when my husband said “Every day is like Christmas for Brian” when we were discussing his recreational activities, camps, vacation, etc. I hadn’t really looked at it quite that way before, but Jim was right. These “Christmas gifts” are made possible by the collective efforts of an entire village. They are what make Brian really happy, as giving a toy on Christmas Day would be for another child. Despite, the initial adjustment to new people, places, and things, Brian learns that “new gifts” are not so scary and can actually be quite fun! There is the joy that follows, at least for the most part. Not every experience has been a positive one, of course, but fortunately these less desirable experiences have been infrequent.

Brian loves the company of others, which I believe, is his favorite Christmas gift of all. Our extended family, Brian’s school family, and social/recreational family,- each member has brought significant meaning to Brian’s life, and to our lives as well. Brian also loves to go out, and will hand me my car keys when I announce we are going to a particular place. Once upon a time, not so long ago, there was a little boy who hated to explore new venues and would scream in the car whenever we came to a red light. While Brian is still not a huge fan of New Jersey traffic (I’m with him on that one!), he can tolerate the stop and go of the road when he knows and trusts that the destination will be worth it. This is absolute heaven now compared to the hell that we thought we would never get out of in those early years. To say how relieved we are that those days are behind us would be an understatement- a huge Christmas gift for us for sure that continues to give all year round!

We will soon celebrate Christmas once again, embracing all that it has to offer with family and friends. And I have decided to let Brian try opening a few presents again! I know what you’re thinking- yes, maybe that won’t be a good idea, but maybe this year, it will be different. I have my theory how some small musical instruments may be just the game-changer that Brian needs, especially with his love for music. Regardless of what ultimately happens, Brian will continue to celebrate Christmas daily in his own way, with the people, places, and things in his life that mean more to him than a truckload of toys. There is a peace in this for him, and therefore, for us as well, and for that, Jim and I are extremely grateful. Peace is definitely an underrated and invaluable Christmas gift!

Wishing you the gifts of peace and hope during this blessed holiday season and beyond! Until next time, thanks for reading! πŸ˜ŠπŸŽ„πŸŽ„

Happiness Is A Choice

Amazon has changed the world in immeasurable ways, most of which are positive, and certainly keep me coming back to order things ! I love having an Amazon Prime membership for many reasons: free shipping, virtually any item you want is available, ordering from home, and most recently for me, free Amazon videos. I am amazed at the volume and diversity of programs that are available for viewing and had the opportunity to watch several during the Thanksgiving holiday. One particular show called “Happy” definitely grabbed my full attention and I highly recommend it. I believe it will be the best 80 minutes out of your day that you will spend.

“Happy” is a journey around the world to discover what really makes people happy with themselves and their lives. Individuals from all walks of life and various places are interviewed. Research scientists also provide their professional findings on the subject. You may be surprised by some of the outcomes that are discussed. For example, researchers have determined that 50% of a person’s happiness is genetically predetermined, an additional 10% is based on circumstances, while the remaining 40% is based on personal choice. I never thought of happiness as being ” measurable”, but in this particular context, based on how the information was presented, it made a lot of sense to me. Being able to directly impact my level of happiness almost half of the time is pretty powerful. It is just a matter of making intentional choices, which over time, can become second nature, and can even physically change your brain for the better. Who knew?!

I’ve been reflecting on this information, as well as the rest of “Happy”, and can see how beneficial and happy an intentional life can be when the right choices are made. Remarkably, this can even be true for people who are poor, (especially when compared to American standards) or for individuals who have experienced trauma or tremendous loss. Since all of us will go loss/trauma at some point in life, this is good news. For those of us who are parenting disabled children, this is especially encouraging, as our children’s traumas/losses, as well as our own, are often chronic and have the potential to make us very unhappy.

I was thinking about my own level of happiness in the context of being a special needs Mom. I have concluded that I am happy/content most of the time, despite the exhaustion, fear, and inability to solve Brian’s challenges-problems. There are many hurdles that Brian will always have to overcome in his life, challenges in my own life as well, things I have no control over, and this often makes me feel helpless. It can all be very scary and has the potential to keep me stuck in fear, but I don’t want to become immobilized, so I choose to focus on what I can change or improve, ESPECIALLY when I don’t feel like it. The key here: you have to be ready to receive and be in a place of brokenness for real change to happen. I was on my knees when this change took place in my life; there was no where else for me to go. There is truth that lasting growth can only happen out of intense pain, unfortunately there is no other way… but…the great news is, this pain can transform your life for the better, an amazing paradox indeed…

There are huge benefits when I choose intentionally for the better: perspective, contentment, and peace. Collectively, these 3 gifts equal true happiness for me, despite the daily challenges of raising Brian and an unknown future. Everyone can derive benefit from contentment, peace, and proper perspective, regardless of what life brings. Life is too short and I don’t want to miss out on the good moments because I’m still stuck in the bad ones. I deserve better than that and so do you!

It doesn’t mean that I don’t experience other emotions like frustration or anger. I most certainly do, just like everyone else. The difference lies in the perspective of the situation and how long I choose to remain in “the muck”. I can let the anger or frustration eat me alive or learn to let it go over time so that I can move on. I have experienced the former and can tell you it’s not a place where I wish to remain indefinitely. I have been robbed of time and joy during those dark moments when I have stayed too long in them. I have found that life can still be enjoyed and problems can even be forgotten about temporarily, when I am intentional with my choices. The reward is a change in mental perspective, even when the difficult circumstances remain. Simple moments are appreciated more, and an “attitude of gratitude” takes root. Plus as one good friend reminded me recently: ” nothing lasts forever” that includes both good and bad times. After a while, making good choices can become more automatic- that is the good news! It’s a very important part of my self care and when I see the positive effect of intentional choosing has on my life, I am even more motivated to keep it going. Finally, God’s grace is the “icing on the cake” that makes all things possible, especially the impossible!

Wishing you much joy and true happiness during this holiday season and beyond! Remember, you’re worth it, and so is living your best, imperfect life!

Until next time, thanks for reading. 😊