Dear Jessica & Sam,
As I sit to write you this letter, you are away at the respite center for the weekend. It is a house with four bedrooms that sleeps six – managed by DDS with staff trained to care for you. There are so many emotions that have gone through my mind this weekend. The truth is, I keep listening and looking for you. It’s midnight now, and I know I should be in bed for church tomorrow, but I caught a nap earlier and got a second wind.
I was reflecting earlier on the first time you ever went to the respite center for the weekend. Jess, you went alone the first time. We thought we’d try it out, and you were excited to go and meet new friends. Of course, I cried when we left because I questioned what I had just done, leaving my most prized treasure with total strangers.
The fact that you are highly functioning and verbal was to your benefit. You were armed with your phone and knew you could call us at a moment’s notice, which you did at 5 a.m. to tell me you needed your inhaler, lol. I encouraged you to go out and tell the nurse in the main area but followed up with a phone call, as it was your first time there, and you were unsure how to reach out.
I remember nervously dropping you off, filling the nurse in on everything she asked, and adding concerns about your eating and sneaking of food. Prader-Willi Syndrome sometimes causes insatiable hunger, and you can’t help yourself. If someone leaves a cookie out, it may not be there later. (Although I sometimes think I have it too, sweetie, that love of food can do a number on us, lol)! Seriously though, I was so proud of you because, through the years, you have learned self-control and managed your weight, unlike some who struggle with PWS. That first time, we only sent you from Friday night to Sunday night as a trial run.
Jessica, when you came home, you had a wonderful time. You had all kinds of adventures and things, so we decided to try it again and, this time, we’d send Sam too.
That was a little harder, as your brother’s autism makes him struggle with communication and being nonverbal, but you know that and are an amazing big sister! Would someone take advantage of him? Would he be O.K.? On the other hand, Sam loved numbers and calendars, and we wondered if he would get a hold of people’s phones and change their settings. If that happened, how would they respond? Would the staff respond in anger and trigger one of his meltdowns? Now that he was older, they didn’t happen as often, but being away, was a definite momma’s concern. Not to mention his taking other people’s drinks, ugh… at that time, the concerns were endless. Would others be able to “read” him and know if he was hungry or thirsty, or bored? Would they safely bathe him? Again, when we left, I cried. I questioned what I had done, leaving both of my most vulnerable children with strangers, although a couple of the staff were the same ones when Jessica first went, so they weren’t total strangers.
Again, we only did the Friday night to Sunday night, as it was the first time for Sam, and we were testing the water if you would. Of course, I called every night to check in and say goodnight. I promised you I would, and even without words, you smiled, Sam, as though that comforted you. I could hear the smiles in your voices when I called; you were having fun. Dad and I breathed a sigh of relief and reservedly enjoyed a weekend of dates.
Since then, you two have gone several times to the respite center. We had a couple of hiccups along the way. Some good, some a little more challenging, but that is the reality of life; although we want every experience to be great, life happens, and we must learn from it. We did venture out the last time you went, to take a weekend trip to NC to meet our new grandbaby. That was a little riskier for us, as we weren’t a phone call away, but we had people in place if needed. We still called every night and knew you were in good care for the weekend.
This weekend has been a little different. You both know of the challenging months with Sam’s health and behavior issues. I remember sitting here, in our living room, a couple of weeks ago and almost feeling like I did during Covid. After having to pick you up, Sam, repeatedly from work due to your yelling and hitting yourself, I wondered if we would ever have a “normal” day again. I was turning over every rock to get to the bottom of what was troubling you. Yes, we knew some of it by now was behavioral, but there was something more. Your eyes would sometimes pierce mine with a look of pain like, “Mom, help me, don’t leave me in this pain.” We’re hoping the neurologist is correct in believing it was due to your seizure meds but seeing you go through adding on the new with the old was so hard.
I never wanted to drug you just to shut you up, and I almost felt like that’s what we were doing during the transition, as you had to take both the old with the new until the new was entirely in your system. It made you so tired that all you did for days was sleep, which is unlike you, Sam. I spoke with the nurse at the respite center to share with her all we had just gone through, as I thought we might need to reschedule. We set a plan in place that we would try it Thursday night, and we were staying close in case we needed to get you.
Thursday, I packed and prepared for you both to go to respite for the weekend. It was a busy week, as Dad had eye surgery Wednesday and was limited in what he could do. As I packed, I prayed and thought, maybe this time I should leave you home, Sam, to be sure you were better. You had been off your old medication since Sunday and seemed to adjust well to the new, albeit still a little tired.
After supper, we packed the car and headed to drop you guys off. We got you both signed in and settled. I spoke with the nurse about my concerns and repeatedly said, we’re a phone call away. I know God sent her to us as she said, “Look, this is a time for you to have a break. You need it! I will only call if I have a question for you, but… I’m NOT calling for you to come and pick Sam up. MAKE PLANS! Enjoy yourself.” I could feel in my gut how sincere she was. She knew the road was challenging and assured us they would take good care of our special kiddos.
I left there and wanted to cry. This time it wasn’t because I was sad but because I honestly felt she cared and that we could put down the weight we had been carrying for the last couple of months and know that someone who was trained was temporarily filling in for us. God was giving us a time of refreshing to recharge.
It has been a good weekend. We have had some time together just to be, as well as some time spent with wonderful friends getting refreshed, as well as some extended family time.
Jessie & Sam, we love you so much and have missed you. The house was empty. We are refreshed and ready for you to come home. I’m so thankful you have made new friends and had fun doing it! It’s good to have time away, but it will be good to have time together again. I’m so thankful for the gift of your life and that we get to enjoy it with you! Love you! ❤
#respite #specialneedschildren #specialneedsadults #autism #praderwillisyndrome
SHEILA BOUCHARD 