Yesterday, I just didnât have it in me. Yesterday, I did not have the patience that on somedays I find miles of.
Some days I wish Wil would just get up and get in the car when I ask him to. Some days I wish I could say, âWe are leaving in 20 minutes,â and heâd go get his hat and shoes, and then weâd be on our way. But it doesnât work like that.
Every time we need to go somewhere itâs a process. I start 30 minutes ahead of time with Wil. I ask him to get his shoes and pick out the hat he wants. Then I check in 10 minutes later. He may have moved closer to his destination, or he may not have. There is more coaxing. And then, eventually, he is ready to go. Or not. This is not once in awhile. This is all the time.
Yesterday Katherine and Elizabeth had driverâs education at 6pm, and that means we needed to leave at 5:30pm. I was making dinner and realized it was already getting past 5pm. It was time to let Wil know it was time to get ready to go.
I walked downstairs and told Wil it was time to go. âOk, Mom. Hugs.â This is all normal. Heâs big on hugs. Iâm big on his hugs. Thatâs the beauty of not being in a hurry with Wil. You never forget to give and receive hugs.
After our hugs, I asked Wil to get his Crocs and pick out the hat he wanted to wear. He said ok and I went back upstairs to continue with dinner. Ten minutes later I didnât hear any noises from him getting ready to go. I went back downstairs and he was sitting on the floor. He had been good-natured so I wasnât sure what this resistance was about. With more hugs and coaxing, I told him it was time to go. He refused to budge. As I didnât understand the reasons behind this particular refusal, I wasnât sure how to talk him through it. It may have been a simple case of being a teenager and exerting his independence.
At times, Katherine or Elizabeth are able to get him moving. Katherine came downstairs. âWil, can you get up and hold my hand? I really need a hug.â Wil looked at her and considered this, then ducked his head down. Not a good sign.
At this point, we were running out of time. âWil, we need to go,â I said. âThis is not fair to your sisters. You had plenty of time to get ready, and itâs time to get up.â He looked at me and looked back down. âCome on, one last hug. Can you get up and give me one last hug?â I hugged and tried to lift him up, which sometimes works. He resisted strongly. At this point, we were on the verge of being late. I asked Katherine for help. She asked Wil for another hug, but he sunk down deeper.
Elizabeth came downstairs to see what was happening because it was time to go. We literally had minutes left. I donât like lifting Wil against his will, but I also donât like sending him a message that this behavior is ok. We all need to work together â and thatâs what we did, well at least three of us. Sometimes you have to do things you donât want to do. After all of our coaxing and hugging, Katherine, Elizabeth and I lifted him up.
Wil is over 100 pounds, has low muscle tone so can wiggle out of your grip like a noodle, and he was unwilling. We made it up half of the steps to the landing and set him down. I again asked Wil to get up on his own.
âDonât carry me. Iâm not a baby.â Wil said.
âYou are right Wil. You are not a baby. You are 13 years old. You are very big. So letâs stand up on your own and walk to the car like a big, grown up 13 year old does.â
No response. We picked him up again and made it to the door. Again, he refused to walk on his own. So we picked him up and made it to the car. Again, he refused to get in on his own. We picked him up again and got him in the car.
This whole process was physically and mentally exhausting for all of us. Wil was withdrawing in the backseat of the car, and I was doing all I could not to break down in a full out ugly sob. I hesitate to use the word traumatic, as that is quite extreme, but in that moment that is the best word I had to describe what I felt. It was a very heavy feeling. I just hated lifting him up like that and making him do something so against his will. But he also needs boundaries and to understand that we need to go and do things when he doesnât feel like it; thatâs just part of life. How to do that, how to balance that, I donât know. Iâve learned a lot raising Wil, but I have a lot more to learn. And gosh does it hurt sometimes.
He was upset for some time in the car, understandably so. Katherine and Elizabeth seemed like they were fine, and we talked it out. I donât like that they have to go through this either. This is part of their everyday life too. We never just get in the car and go. For them, everything is a process, and much of it revolves around Wil. Surely it has created great compassion and strength in them that many will never understand fully. I just donât want this to cause resentment toward their brother. At this point, Iâve certainly seen loss of patience, which all siblings have, but thankfully no signs of resentment, and Iâd like to keep it that way.
On the drive home, while Katherine and Elizabeth were at driverâs training, I asked, âWil, do you know why we lifted you up in the car?â
âHmph.â
âWil, your refusing to leave was being very inconsiderate of your sisters. They cannot be late to this class and your refusing to leave almost made them late. When you have somewhere to go your sisters are very considerate of you. Iâm asking you to be considerate of them, too.â
âMom, Iâm not listening to you.â
I stifled a laugh â this was so pure, typical teenager. Iâm balancing Down syndrome and typical teenager with Wil. On one hand, this comment is a milestone for him; using his words in this way to express his emotions. On the other hand, the mother of a teenager in me was thinking, âOh yes you will be listening to me.â
After I had picked up Katherine and Elizabeth from driverâs training and we had made it back home, Wil had recovered and was bouncing around in his happy state. Me, not so much. I still felt the deep turmoil in the pit of my stomach. Do you ever have this deep sob within you and it just needs to come out? Thatâs what I had and I was trying to hold it down in my stomach and process through it piece by piece to make sense of it. Sometimes I can do that. As I process each emotion and what it means, it eases the pain, bit by bit, until the sob has dissipated. This time though, the turmoil remained jumbled up in my stomach and I just couldnât find the state of mind to unravel it.
Later that evening, we were all sitting on the couch and Matt asked Elizabeth how driverâs training was.
âWell, we were almost late thanks to Wil. But we made good time.â Elizabeth responded.
âWhat happened with Wil?â Matt asked.
Elizabeth told Matt what happened. I confirmed and filled in a few details.
âIt looks like heâs fine now.â Matt said.
âHe was upset for some time,â I said. âI hope the message sunk in. It was so hard. I know heâs bouncing around now, but he was really mad at me for a while.â
âMad at you?â Elizabeth said and looked at me. How did that girl get so smart? She has amazing perspective for her age. Looking at her, and feeling how grateful I am for how both Elizabeth and Katherine roll with those tough times, and take it in stride, the sobs came up to the surface before I could even process what was happening. There was no stopping them then. I didnât want the girls to see me like that so I went to my bedroom and I let it all out.
Matt came in and hugged me. I was so thankful to have him to hold on to. I sobbed my heavy sobs and held on to him around his waist.
We talked a little bit. I told him how I feel lost with Wil sometimes. That I donât know the right thing to do when heâs like that. I donât know if the message was received by him. I donât like to force him, but reasoning with him is not always an option. And we talked some more. We are also raising two fifteen year old girls and that has its own challenges. There are days I feel like Iâm failing, and this was one of them. Then Matt stood up and picked up this little note I keep Elizabeth made years ago that said, âBest mom ever.â He handed it to me. I loved him so much at that moment. More tears.
He said to me, âEveryone has their stuff, Christie. It might look different, and they might not always talk about it, but everyone has hard stuff they have to deal with. This is some of our hard stuff.â
And thatâs why Iâm writing this now. What compels me the most is for you to see the big picture on raising a child with Down syndrome. Some see our kids as happy all the time. They are not. Some see raising a child with Down syndrome as an always challenging journey. It is not. Itâs a mix of everything, just like everyone elseâs life. We all have hard stuff, even if it looks different and we donât always talk about it.
This morning on the way to Wilâs swim lesson, he was jamming to his favorite Luke Bryan songs. The sun was shining and his high spirit was contagious. I couldnât help but sing with him, as we ventured forward into a fresh, new day.

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