Posts tagged acceptance
This is hospice

I have to start by thanking everyone for their incredible words of love and support. Reading stories about how Adelaide’s existence has positively impacted others lives, buoyed our spirits over the last week. Now, if you were like me, you might be asking yourself, “what is hospice anyway?”. I’m certainly no expert having only navigated this space for the last month, and I imagine it looks a little different for everyone, but the following has a been our experience.

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Within our means

Just call her Dr. Bug. Thanks to her mast cells rejecting her IVIG infusions Miss A will now be sporting this adorable medical accessory whenever she leaves the safety of our home. Adelaide’s health has been declining in the last month and we are fumbling along as we figure out her new limits. Years ago, life gave me a crash course on living within my financial means, but now I’m learning how to live within our wellness means. Dr. Bug is an excellent teacher, though I must say, not very patient…

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Summertime stressin

These last couple weeks have been emotionally challenging and not for any one specific reason that I can determine. Don’t get me wrong I have laid in bed, stood in the shower and gotten lost in thought at a red traffic light coming up with all sorts of reasons as to why my heart is now paying rent to my throat. The winter holiday season is a well-known anxiety fueled host serving up a feast of emotional booby traps. But, maybe not so well-known, is that the summer season offers its own debilitating fare.

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All good things

After the overwhelming response to last week’s post I realized a follow up was needed so this week I start there. But life doesn’t stop while we’re discussing socially charged issues and this week it was announced that Hamilton would be closing up shop in Chicago. Despite, in spite or because of Adelaide’s challenges our time in Chicago has been pretty incredible. Do we stay? Do we go? Time will tell but if you’ve learned anything about us you know we’ve got this.

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Big brother

I used to envy the way Jackson could see Adelaide without the sadness that tinged my view. However, as Jackson is getting older he is gradually beginning to understand how Adelaide is different from a neuro-typical sister and it pains me to watch the sadness and worry creep into his life. There is no question that their special-needs sibling bond adds so much to both of their lives but like everything else in this parenting circus it is a balancing act. A really stinking cute balancing act, but one all the same.

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Not alone

I’ve had a love/hate relationship with social media for years. When an old post I’d written came up in my Facebook memories it reminded me how far I’ve come on this special needs parenting journey. Navigating the emotional minefield of a social media scroll used to be excruciating and, honestly, still has its moments. But as I’ve connected with more and more special needs families the isolation and loneliness I once felt has been replaced with warmth and community. Grateful everyday for my cohort of fierce caregivers who are a constant reminder that no matter what challenge, emotional or otherwise, we experience we are not alone.

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Inchstones

What do Hamilton, developmental disabilities and my motto, “taking life one inchstone at a time” all have in common? They were in full effect last Saturday when, after several months, I once again took our kids to the theater to visit Miguel/Daddy at work. I’m slightly ashamed to admit that I’ve written over 30 blogs posts (yes, I counted them) and I have yet to do a deep dive explanation of my own motto. I can tell you are clearly as shocked and appalled by this as I am. So let’s get to it!

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