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. 😊

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