Rest and Retreat

All parents need a break from the challenges of child rearing from time to time. It’s the most rewarding and exhausting “job” that a parent will ever have! This is especially true when children are very young and dependent on Mom and Dad for literally all of their needs. With this in mind, imagine what it would be like to have a “forever toddler” to raise, where it’s literally days, months, and years of the same needs that demand your attention, energy, and focus.. Sure, there are certainly gains in independence of skills, whether partially or fully. Progress does happen, albeit very slowly. Yet, there will always be some level of parental assistance and supervision required. There will never be a full detachment from oversight and follow through to make sure that your son or daughter completes the task(s) at hand.

Just think about all of this for a moment…You may wonder how is it possible for parents to keep this momentum going for their children indefinitely? The answer to this question is: it’s impossible! No one can sustain such a pace for years without dire consequences. However, this is exactly the story for most special needs parents and their children. They need a break so badly and often can’t get one. It’s an international problem that exponentially gets worse over time, especially as more disabled children get older, along with their aging parents.

I am one of those “full throttle” Moms, who keeps on keeping on, making sure my special son’s needs are met to the best of my ability, leaving no stone unturned. It takes a tremendous amount of coordination and effort to make things happen for our kids. We are negotiating/ advocating for them constantly from the moment they are born until the day we parents are no longer here. Raising special children is often like a race, instead of the marathon that it was intended to be. Sometimes this is because resources are limited, so we don’t want our kids to miss out, so the early bird does indeed get the worm. Other times it may be that our guilt is in the driver’s seat, pushing us to proceed in our mission to help our children, regardless of the price we may personally have to pay for our actions.

This is especially true after years of persistence and determination to ensure our kids are provided for. While extremely admirable, we may or may not notice over time that our energy levels are often depleted and we may become irritable and overwhelmed. Some mornings when we get up, we just can’t face another day of the same exhausting and repetitious routine with our special children. We have finally hit the proverbial wall- we are desperate for a respite! We hang our surrender flag out the window, hoping someone will respond to our call for help.

I am in great need of a respite right now and saying so “in writing” is actually a relief. I don’t know why I sometimes feel that this is a “weakness” to admit that I’m not a super human, as of course this is crazy and irrational. I think it has to do with the unrealistic expectations that I have of myself and proves all the more just how much I need a break. It’s been a year since I have had a long weekend to myself and I truly enjoyed every second of it, once I “ transitioned” and adapted to a new normal. I realize in these type of moments just how much I am like Brian, who also struggles with transitions, but eventually settles in. Perhaps he is more like me than I thought.

I am extremely fortunate to have my wish come true, as I will be going away for 4 days, starting tomorrow through Monday. I will be joining a group of other special Moms at a retreat inn out of state and out of reach of all responsibilities that have to do with Brian, (and life in general). This amazing gift is made possible by A Mother’s Rest ( a non profit organization that supports special needs Moms) at The Terrace Guest House in Maryland and my good husband. Jim is able to work from home and care for Brian while I’m away. They are best buddies and are planning to do “guy stuff” while I’m gone . I’m sure that they will have the time of their lives, as a matter of fact, I’m even more positive that a certain part of them will be happy when I go, lol. But there is a certain amount of truth to that, as we will all need breaks from one another, no matter how much you love your family members.

As I write a to do list for Jim regarding what Brian will need over the 4 days, I am reminded just how much Brian still requires, reinforcing my resolve even more to take a break from everything. I impress myself sometimes with how much and how long I’ve been keeping this pace for my son, but as I get older, I know that I have to start making modifications. I don’t have quite the amount of energy that I used to have, so I need to use wisely what does exist for both Brian’s benefit and my own. I believe this getaway weekend will renew my spirit, my mind, and my body, which is in desperate need of some deep sleep. It’s the little things that truly make all the difference. Achieving these goals of rest and relaxation will enable me to resume with motherhood when I return home on Monday afternoon.

Many special Moms I know would love a break after years of caring for their disabled children. Sometimes they don’t know how to ask or who to ask. Sometimes there is no one to ask. It’s sad and exhausting, so when rare opportunities like A Mothers Rest comes along, they need to be grabbed as quickly as possible for the parents who need it so much. It’s the perfect opportunity for family and/ or friends to step up and help out if possible . Perhaps a weekend away is not feasible, but an overnight or an evening out is a good place to start… For friends and family members considering a gift for a special needs Mom ( and Dads too): think about the gift of your time with their disabled child so that they can have the gift of free time for themselves. It may be the most wonderful present that they will ever receive.

Of course I will miss Jim and Brian this weekend and maybe even be tempted to check in frequently, like I have done in the past during other times away. But I promised myself this time it’s going to be different. I am making this time for myself selfishly and unapologetically all about me. I will make a daily call to get a status update and of course, will be available anytime in case of an emergency, but otherwise, please don’t call me unless there is blood or a broken bone. Everything can and will have to wait until I return home on Monday. This is the best self care gift that I can choose to give myself and I don’t want to miss a moment of this rare opportunity that has presented itself. I am worth it and so are you! Carpe Diem!

Until next time, thanks for reading. 😊

Musings On Motherhood

Being a Mom has been one of the greatest joys of my life, though I didn’t always feel that way…My dream of what motherhood would be like prior to my son, Brian’s arrival into the world and the actual reality when he came, were two entirely different things. Taking on the role of motherhood was nothing like I imagined it would be, especially in the beginning of the journey. I was quite frankly very overwhelmed and afraid. Brian had been born with Down syndrome and those moments immediately following his birth were anything but celebratory.

The atmosphere in the delivery room was very somber, with undertones of sadness, overshadowed by a sense of urgency. Suddenly, Brian was whisked away by a group of neonatologists just moments after my husband, Jim, had held Brian for the first time. These specialists were quietly gathered in the corner, speaking in hushed tones while examining our son. I knew something wasn’t quite right, but what was it? I felt so helpless and devastated as I lay on the operating table post C-section, trying to wrap my brain around what was happening in real time..Tears were copiously flowing, while I silently mouthed a prayer to God, begging Him to spare our little boy from any complications or disabilities.

My obstetrician ultimately confirmed my worst fears by informing us that Brian had Down syndrome and was not going to be a typical baby. He would indeed have special needs, as well as medical challenges. I was already aware of the hole in the center of Brian’s heart at 18 weeks in utero, but I had hoped that this was all he would have to endure. I remember asking God, “ why, Lord?” as I was brought back to my hospital room after the delivery. I kept thinking how exactly would Jim and I rise to the occasion of being Brian’s parents? What kind of life is he going to have?

Numerous scenarios kept playing out in my head, fueled by fear and grief. I had never been so scared in all of my life. It seemed like raising Brian was going to be an impossible task and this was just the beginning of the journey! Yet, I kept going back to those first initial moments when Brian was literally pulled out of my womb, and the first cries of his arrival were loud and clear. Once he was cleaned up and handed over to Jim, I saw the most beautiful baby, wide-eyed, lovely rose bud lips, looking intently at his Dad. Their sacred bond was already established in those initial moments of Brian’s arrival into the world. I was petrified of what the future held, but knew deep in my heart that somehow God would work everything out in Brian’s life ( and ours) for good, despite my fears and disbelief. I chose to believe that God would always be at the helm of Brian’s life, providing for all of his needs. He only asked for Jim and I to trust Him, especially in our knee deep fear of the unknowns in Brian’s life, as well as in those difficult things we knew would inevitably happen as a result of Down syndrome.

Over time, we constantly saw evidence of just how faithful God was and continues to be in Brian’s life, even to this day. Jim, myself, and Brian have been richly blessed, more than we could have ever imagined, by resources and individuals who have helped us to help Brian lead a good life. The Lord has also been our refuge in very difficult times with Brian, carrying us through some tumultuous challenges that we could not have faced without Him. It is God’s grace and and never-ending love that has given us the courage and resolve to face our difficulties both in Brian’s life, as well as in our own lives. Throughout it all, I have been able to experience a very loving bond with Brian, the very thing I feared would never happen due to his disabilities, but God answered that prayer as well.

Fast forward to almost 19 years later and so much has changed, yet lots of things have also remained exactly the same. There have certainly been and continue to be many difficult mountains for Brian to climb, especially with a secondary diagnosis of autism. But our brave son faces each one of his challenges with the most incredible persistence and grace that I have ever seen. Brian is a wonderful and loving young man who is beloved by all who know him. His hugs are legendary and his pureness of heart is always apparent. At school, Brian is known as Mayor McDonnell and with our beloved church family, Brian is the Joy Ambassador, the unofficial greeter at most Saturday Masses. Jim and I are so proud of Brian, he is a wonderful example of God’s perfect love that endures all things, never judges, and is totally accepting. I have become a better person because of my son and continue to learn a great deal about virtues, such as compassion and goodness, through his daily examples.

As I reflect on all of these truths as Brian’s Mom, I have certainly come a long way from that late August night in 2003. God gave me the most precious gift in the hospital that fateful evening. It was hard for me to initially see, but in His time and through Brian, I have experienced the greatest love and have met some of the most amazing people. Life has truly been extraordinary! I have also learned through both my failures and successes how to be the Mom that Brian needs me to be for him. It is definitely not easy, as the multiple challenges of raising a disabled son can be quite difficult, but it is always worth the effort.

I still wish Brian didn’t have to go through so much, but I try to remember how faithful God has been and will continue to be for the rest of Brian’s life, especially when I experience those dark moments of doubt. I have been given the privilege of being Brian’s Mom and the honor of raising him to the best of my ability, a role that means the world to me. It is a gift that continues to grow with time and love and I wouldn’t have missed it for anything in the world! Thank you, Son, for making me a Mom, I love you with all of my heart! 😘❤️😘❤️😘❤️