I have always heard how weekends are difficult for widows because the routine of the week is on hold and the reality of being alone becomes more palpable. I would venture to say those same feelings transfer to my own special needs family. During the week, we are going, going, going – doctor appointments, therapy appointments, driving kids to and from school, meetings at school. But then the weekend comes. And although we embrace the joy of not having a strict schedule to abide by for two days, we are reminded how isolated we are.
My special needs son is my oldest child. This means I have two preschoolers that I constantly feel I am doing a disservice to. Because of my son’s needs and the medical schedule he must remain on, we are limited to begin with. We have a feed schedule to follow, a breathing treatment regimen, cathing schedule, etc. Going out to dinner is just not fun. It’s not as simple as jumping in the car and arguing over who gets to pick the restaurant to eat at. When we “jump” in the car, it’s a full on process of buckling our son’s wheel chair in the car, loading up the preschoolers, double and triple checking that we have the amubag in the event of having to bag our son in an emergency, making sure the backup trachs are present, the oxygen tank has enough “juice” to last through the drive and then the meal, having the portable nebulizer in case he needs a treatment before we get home, making sure the cath kit and diaper are discretely placed my purse so no one wonders why my eight year old son wears diapers. Are we having fun yet??
The example above is just for a quick outing. Hence, those are few and far between. Recreational outings on Saturdays just don’t normally happen for us. We don’t join other families on weekend nights for dinner because we start my son’s bowel management program at 5:30pm, which lasts one hour, and immediately afterward begin his nightly breathing treatments. It’s important he stays on his schedule and doesn’t get to bed too late, otherwise we risk running him down and him getting sick. We don’t go on family outings to the zoo or the fair or anywhere else a family with small children may go. I literally could not tell you where families take their small children; it’s just not even on my radar. Which creates a constant flow of guilt for me (and a post I will share at another date) on behalf of my other typical boys. I struggle all the time with what my boys are missing out on.
Don’t get me wrong, we love our family time at home with all of our boys. And we make our own fun in our house. But as a stay at home mom, to spend my weekends at home, just like my weekdays, and watch my Facebook newsfeed and Instagram wall fill up with “normal” people out living their life, is brutal. Even without the planet’s entire social network taunting me, I feel the void. I feel the isolation. I feel the boredom. I feel the guilt. These are all very tangible and real.
I am not sure how this will ever resolve or what the perfect answer to this is. But, in my mind’s eye, the way I see this situation and the feeling of being alone, reminds me of the passage in Exodus just after Moses had a conversation with God and tells him “If your presence will not go with me, then do not bring us up from here.” (Exodus 33:15) God agrees to remain with Moses and when Moses asks to see God’s face, God told him no. Because no one could see His face and live. However, “Then the LORD said, ‘Behold, there is a place by Me, and you shall stand there on the rock; and it will come about, while My glory is passing by, that I will put you in the cleft of the rock and cover you with My hand until I have passed by. ‘Then I will take My hand away and you shall see My back, but My face shall not be seen.'” Exodus 33:21-23.
Perhaps in these times of feeling alone, it is because there is only room for one when I am hidden in the cleft of the rock and His hand is protecting over me as His presence moves by. Besides, God rested on the seventh day of creation and I seriously doubt He hit up a museum and then Tweeted about it. 😉