Amazing Grace

Recently during lunch with a friend, she happened to share that her marriage was in serious trouble (due to a number of reasons over a long period of time) and that divorce was the likely outcome. I could see that it pained her greatly to even utter the “d word” and that she still loved her husband. This couple had willingly tried counseling and were faithful in attending sessions. It was apparent that my friend did not want her marriage to end, but felt she had no choice. I felt so sad for this lovely woman and honestly didn’t know what to say, for fear of coming off like a series of platitudes. No one thinks on their wedding day that the marriage won’t last. All couples have hopes and dreams to share life together “until death do us part”. It’s the way it’s supposed to be and the way we want it to be.

My friend commented how Jim and I seem to have it together both as a couple and as parents. I quickly informed her that nothing could be further from the truth and things are not always what they seem. Jim and I are just like millions of other couples; imperfect people who often struggle daily to make our marriages work and to raise our children. Some days Jim and I fail miserably and other days we succeed victoriously. Many days it is the grace of God that gets us through because we just don’t have it within ourselves. The responsibilities we carry as partners and parents can be back-breaking, not to mention the unexpected curve balls that life can throw at us. Collectively, these things can wear us down and adversely effect our marriage. It can happen so very easily. I realize today there was a very good reason why I married later on in my life: I wouldn’t have had the fortitude and maturity that it takes to make a marriage work when I was younger . And even with those things, there are still no guarantees of a happily ever after.

Brian’s arrival into our lives, of course, was the real test of our character and faith within ourselves and our marital bond. Overall, we continue to do the best we can as parents and are a strong team together. Our marriage was also severely tested when Jim lost his job and I was diagnosed with colon cancer. I suppose if these things didn’t push us to the brink of divorce, then nothing would have. It was during those trials that we ultimately stayed strong and made a daily decision to persevere, even though we often didn’t feel like it. But what choice did we really have? Ironically, Brian was the one who encouraged us the most during this time , despite all of his challenges. I don’t think this was just a coincidence…

As a result of living through these situations, I’ve concluded in retrospect it’s better that the future is not revealed to us. I’m not so sure that I would have answered the call so willingly to be a special needs Mom, had I known ahead of time. I’m not so sure that I would have necessarily remained married either. We were both very aware of what a high- risk pregnancy meant and were willing to take on those odds because of our strong desire for a child of our own, but never anticipated exactly HOW a disabled child would change our lives forever . Jim and I were hopeful that the odds would have been in our favor for a healthy, typical baby. However, every step of my pregnancy had markers that indicated a baby with Down syndrome, so I knew in my heart ( when a hole in Brian’s heart was revealed at 19 weeks in utero), that our son most likely had the extra chromosome. It was devastating news- the only reasons why Jim and I were able to carry on was because we loved each other and our faith in God, the same faith that each of us were raised with in our respective families growing up. The one thing that we knew for sure was that Brian was meant to be our son: his life had a purpose, just like the rest of us, even if that purpose was not so evident at first blush. There is something to be said about couples being similar in the fundamental areas that are important when sharing a life journey. For us, our Christian faith, how we view finances, and the sense of love, loyalty, and commitment that we saw demonstrated between our parents, especially when the going got tough, had a huge influence on us. These gifts still serve us well in good times and in bad, and always will- without them, I do believe divorce would still be an easy thing to do. But I also understand that sometimes, love is not enough, some circumstances can’t be overcome, or one of the spouses may decide they don’t want to reconcile the marriage.

Jim and I have to make a deliberate effort and a daily choice to work at our marriage. There are major obstacles that constantly threaten to undermine our efforts, primarily, Brian’s endless needs, work, and home responsibilities. These things are always going to be there, so it comes down to choices and priorities. We are getting better at making wise choices with the limited free time alone that we do have. It took us a long time to realize why making time for ourselves was not only paramount for the marriage , but Brian would also benefit from a happier Mom and Dad. Whether it’s a formal date or just catching up over coffee, it’s important time that we need together. It strengthens the bond that we will need when life’s adversities come to call or to make the good times even better. I say it’s a good marital investment that can reap priceless returns. I pray that we will remain solid in our commitment to each other and to Brian, who is counting on us to be strong. With God’s Grace, I know that all things are possible, especially when it comes to the impossible. I have experienced enough miracles in my own life to know that this is true. It is this very hope that sustains me, my marriage, and my role as Brian’s Mom. Without grace and hope, life is too difficult.

May your marriage and family experience amazing grace in all facets of your lives. May hope reign supreme in your heart, especially when the chips are down and everything seems utterly hopeless: your miracle is just around the corner!

Until we meet again, thanks for reading!


Resolutions To Live By

One of my ongoing New Year resolutions is to have more “flexible expectations” as far as Brian’s life is concerned. This includes every facet of his life, from soup to nuts. Difficult? Very much so! Impossible? Well, not so much now compared to the early years, when everything was so new, intense, and overwhelming. Don’t get me wrong- raising my son can still be very overwhelming, but time and experience have brought new perspectives and coping strategies. I continue to learn right along with Brian and I’m sure I always will, for better or for worse.

At the end of the day, I just want to see Brian happy and healthy. It sounds simple and overplayed, as we hear these 2 wishes so often, especially at the beginning of a new year. However, the reality is, without these essentials, our children’s lives (as well as our own) will be a huge struggle on so many levels. Therefore, we strive to provide our kids with every medical, educational, and social opportunity available to ensure that these wishes will be realized. Years ago, our focus was primarily on the medical. Sustaining my high-risk pregnancy and getting Brian safely out of my womb were the 2 primary goals for 8 months. Once he arrived, then it was open heart surgery, followed by an orchiopexy, ear tubes, and eye surgery. It took quite a while for the medical issues to be stabilized before we could follow more of a “medical routine”. Ultimately, we achieved the goal of getting Brian to a place of good health. Down syndrome presents it’s own ongoing medical challenges, but so far, they have been managed well by the stellar physicians placed in our path. Brian also eats well. A checkmark could be placed next to the “healthy box”- at least for now, and hopefully for a long time to come.

Just like Maslow’s Hierarchy, once the physical needs have been met, we need to feel safe, then loved in our environments, followed by a sense of belonging. Our kids are no different in their need for all of the aforementioned, perhaps just more opportunities. Brian certainly benefits from lots of opportunities/repetition for every one of his life experiences in order to understand them. Whether it’s a new food texture, or new people in a new environment, Brian will always require several trials of whatever it is. It’s a predictable routine that my husband and I have come to know. While we try to challenge Brian in order to see exactly how far he will go, we also respect his boundaries. Life is long and Rome was definitely not built in a day, in fact, it is taking years with no end in sight!

Special education has been the “main dish” of Brian’s “meal” over the past 12+ years. There has been a lot to digest and learn, with many struggles along the way. Classroom activities, therapy sessions, behavioral plans, vocational education, and IEP meetings, etc. So much time and effort are being invested in Brian to help him be his best person. I sometimes get lost in the details that really don’t matter in the long term and forget that happy, healthy, and personal fulfillment will mean much more to Brian than mastery of IEP goals.

Ultimately, there comes a point when I have to prioritize what I think is important for Brian to experience and know. This process is ongoing and has sometimes been very painful. It has required a shift in attitude and mindset, a letting go of old dreams, and the creation of new ones. Sometimes the “wish for what could have been” comes to visit at the most unexpected times. Holidays, life’s milestones, and other events can sometimes still be emotional triggers to remind me that Brian will never go to college, marry, or live independently. Daily routines also point out that he will always need help with everything for the rest of his life. Years ago when Brian was little, especially after his additional autism diagnosis, I concluded that we were doomed by disabilities that were larger than our lives. The grief and profound sadness of our reality made me a hot, inconsolable mess for quite a long time. Acceptance was initially an unwanted guest, but thankfully became our good friend in it’s own time. Eventually, there was a gradual shift from the hopeless to the hopeful. I would have never believed it was even remotely possible, especially if you asked me when Brian was very little. I remember reading one special needs book about Down syndrome back in those early days when a Mom said how much of a blessing her son was and that she wouldn’t change anything about him. I thought that was insane when I read it. How are the challenges and hardships imposed by a disability exactly a blessing? I eventually came to understand that it’s not the hardships themselves, but rather, what they produce, that are the blessings. Things such as: hope, perseverance, love, support, compassion, and appreciation. Of course our kids also exhaust us, drive us crazy, and always will. Brian certainly does these things too, but he has also taught me over the years how to look at life through his eyes. I haven’t always accepted his invitation, but when I have, I am the better for it and so is he.

I’ve also concluded that productivity/fulfillment is just as important as health and happiness. Brian may be sated and quite happy, but it’s also paramount that he is doing activities that are both fun and productive. Keeping busy is key to productivity and purpose- it wards off depression, and keeps us moving/engaged with others. The alternative of prolonged inactivity is like the kiss of death; this is very different from periods of rest or low-‘keyed activities, which are also essential for our kids. Any extreme on either end of the activity spectrum is certainly not healthy.

School has provided ample opportunities for productive learning that can result in job skill acquisition later on. Brian is learning various jobs and self help skills. He is out in the community quite frequently between home and school. Brian also has a home therapist after school during the week to assist with leisure and vocational skills. Plus the weekend recreational activities. It is certainly a busy life- is Brian always fulfilled by it? I’m not always sure. He absolutely prefers some activities versus others, just like the rest of us. He is learning to accept changes and will at least try new things, albeit briefly in the beginning, with a gradual increase in effort as time goes on.

At the end of the day, it is my hope and prayer that Brian will master one skill that could be used for some type of “work”. What exactly this “work” will be remains to be seen. It is a huge concern for many special families, as the rate of unemployment for special need graduates is quite high. Some families are creating their own work opportunities for their special young adults. Perhaps we will also be inspired to do the same. Or it may be that Brian will be happiest doing recreational activities. It’s hard to predict exactly what will ultimately happen, as things constantly change. We are open to any inspiration that would lead us in the right direction. In the meantime, we pray a lot, then follow Brian’s lead.

As another new year begins, we will once again try to keep healthy, choose happiness, and actively seek fulfillment in 2019 with an open mind and heart. I believe Brian would wholeheartedly agree with this plan and wouldn’t want it any other other way.

Many blessings on you and your family in 2019! May you be happy, healthy, and fulfilled by what matters most…

Until we meet again, thanks for reading!