The Transition from Child to Caregiver

I spent the last few days in the hospital with my dad. He is 79. When we are young we think our parents are invincible. We never pause to think that they are getting older. Until they do. Growing up, my dad always seemed so tall. So big. So calm. His motto throughout life has always been, ‘be kind.’ I can remember him saying it to me from a very early age. I never truly understood it’s importance until I had kids of my own. He knew all along. As…

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To My Son’s Hopefully ‘Never Needed’ Caregiver

Have you written a letter of intent yet? It is a letter written to the person who will take your child if something happens to you. Here is mine… To whom it may concern; Except you’re no random person. You were carefully and specifically asked to take on this huge responsibility. It will undoubtedly be the hardest thing you’ve ever done as it has been for us, and there is an immeasurable amount of gratitude and thanks to be given to you. But I’m sure that’s already been taken care…

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Caring For Brother

Tonight we took a boat ride. Sawyer brought two friends. A brother and sister who are very much a part of our family. The big kids, Cooper included, all wanted to sit in front and scream at Jamie to go faster. They were also supposed to watch for logs but that part didn’t happen. As we boated along we hit some rough water. It only lasted a minute or so. Pretty common on a Friday on the St. Croix River. Anyhow, Cooper squealed as a bit of water splashed in…

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The Little Brother with the Old Soul

Today is Sawyer’s seventh birthday. Which is a really big deal. But honestly, what he said to me this afternoon makes it even more special. We had arrived at Cooper’s school to pick him up for the day. It was Jamie, Sawyer, the baby and I. Cooper came running out. All excited. His therapist said we have something to say to Sawyer. Cooper was jumping up and down and clumsily pushed a button on his speech device. ‘Happy Birthday!’ the automated voice said. Then he giggled and clapped. ‘Thanks buddy’…

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The Things Special Needs Parents Should be Talking About

There is a part of this special needs parenting thing that I’ve been thinking a lot about lately. I never thought about it when he was younger. Honestly, it never occurred to me as a thing to think about. I was so focused too. Focused on helping him in the moment. So this never occurred to me. But now that he’s almost 9, and we can breathe, and he’s at peace, it’s starting to creep in. This thing. This new worry. It’s seeping in around the edges of my acceptance.…

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I Need You To Promise Me

A glimpse inside the secret world of special needs parenting: I was packing for my first trip away from my boys in ages. My husband was watching the game. I was mindlessly throwing stuff in a bag. Rushed of course. Drinking a glass of wine. Worrying. Rushing. I was talking through my time away. The schedule and such. Cooper has speech therapy on Tuesday and Friday. Sawyer has hockey on Wednesday and Saturday. Don’t forget Cooper’s meds. The baby has daycare these days. Don’t forget his butt cream. I was…

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Finding Alone Time, Tis’ So Sweet

I find so much joy to be able to be my sons caregiver. Somedays it can be emotionally, physically and mentally draining, especially if I am not intentional about assuring that my needs are met. And one need that I am intensely aware of is the need to be alone sometimes. Let’s be real for a few minutes, as Jake’s mom, I am eternally exhausted. I’m not gonna lie. I pour my everything into his well being, day in and day out. It is the most rewarding and demanding “job”,…

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Dear Friends and Family, It’s Been a While

Dear Friends & Family, A few months ago, I felt a small cyst in my right breast and still haven’t been able to see a doctor. This brought on a harsh reality for me as a mother of a child with special needs: I don’t have time to be sick, to go to my own appointments, or to die. I never thought about that until today. I don’t have time to get depressed or get my own therapy. I’m so busy holding it together for my daughter that it has…

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I Never Lost My Son…In A Way, It Felt Like I Never Had Him.

I want to talk about the first three years of Cooper’s life because they were the saddest of mine. I had dreamt of becoming a mother for years. It was the thing I wanted most in my life. And then in the blink of an eye I was a mama to a beautiful, healthy baby boy.  Except from day one something wasn’t right. Only, I couldn’t describe it and to make it worse it was like no one believed me. My son didn’t need me for anything besides a bottle…

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Putting Your Mask On First

I’ve been having some minor medical stuff going on. Nothing huge but still slightly concerning. My fatigue and exhaustion were starting to affect my outlook on life and parenting so I broke down and went to the doctor. Of course it took me a while…like six months. I have no time for medical appointments when my son has so many of his own. You get it. I feel guilt about missing work so often already and then adding in another appointment. It’s just a lot. But like I said, my…

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