I usually try to be upbeat and positive about James and our “new normal”. I am tremendously grateful for what he has already given our family, and for what he has already taught us. He is amazing, and I am so glad that he is part of our lives. I could not love him any more.

That being said, I am going to be honest here. I am completely and totally overwhelmed. Everyone said that having three kids was hard. And I believe that having 3 healthy kids is hard, believe me. But having 2 healthy young children and a sick baby is a whole new ball game.

I had a mini-breakdown yesterday because of all that is falling on my shoulders.

I am working about 30 hours/week right now (previously I worked approx 36h). Jim is working full-time at 40 hours. The girls go to preschool 3 days a week from 8:30am-12:30pm. James has occupational, physical, and speech therapists that come to the house once a week. He also has a hospice nurse that comes once a week.

We have to order supplies frequently from our DME to ensure that we have what we need (feeding tube, pulse oximeter supplies, feeding bags for his Joey pump, etc). For whatever reason, our DME does not do automatic ordering/refills, so I have to call any time we are about to run out of something (about once a week).

We receive medical bills daily – most of which have been billed incorrectly. When James was born, we had BCBS. That switched to Cigna about a month after he was born. Concurrently, we now have Medicaid because of James’ disability (at least until I returned to work). On top of that, hospice covered a great deal of his care. So there are 4 potential insurances to work with, and most of our bills have been processed wrong.

One day last week, I accidentally scheduled a therapy appointment when I would be gone to pick up the girls from school and Jim would be working. I couldn’t believe I’d made that mistake. I’m very careful with scheduling and keep everything in Google calendar. I am very type A.  And this still happened.

Still another day, a social worker showed up to go over some paperwork for some service, and I legitimately had no memory of making the appointment or expecting her. I actually had a therapist there with James. Wednesday, I took the girls to Trader Joe’s, got in the driver’s seat, and could not remember if I’d buckled Hazel in. I went to check, and she was buckled in, but no matter how hard I tried, I had no memory of doing it.

My house is my sanctuary. It needs to be clean, organized, and free of clutter. When I had 2 children, I could keep it in the condition that makes me happy. Now, I struggle to find time to wash laundry, do dishes, and keep up with the myriad house chores. And on top of that, I have people in my house every single day. Nurses, therapists, social workers. It adds an intense amount of stress to feel like the house isn’t organized/clean enough for visitors, and we are having them every day.

I’m trying not to fall apart. I am really, really trying. Some days I am better at it than others. I can’t do it all. I can’t do my paying job and I can’t do my mothering job. I’m barely treading water, and I am afraid that I am going to sink under this weight. My patience is thin, my temper is short with my sweet girls. My husband and I are ships passing (literally) in the night many days. I work days that he is off (like today and tomorrow), and he works during the day and after the girls go to bed.

Jim and I both have doctorates, and we are going to be paying for those for a long time. We were actually doing really well getting ahead financially with both of our jobs, and now…well, this is unexpected.

Help me remember to breathe.


4 thoughts on “Sinking

  1. I felt my chest tighten as you spoke of all the insurance companies, doctors, hospitals and suppliers you deal with on almost a daily basis. Myself having had 5 children between the ages of 28 – 33 years of age, I can relate to serious multi tasking. But you are multi tasking at a completely different level. You probably don’t need me telling you to take time for you, but those beautiful girls of yours and James need you functioning on all levels. I had postpartum depression and found myself putting my socks on over my shoes. I don’t know you personally, but if there is anything I can do to make even one day easier to deal with, just email me and we could talk or I could come over and read the girls stories or have a tea party. Hugs all around from a complete stranger ((💚hugs💚))


  2. Dear Catherine,
    your family and little James have been in our prayers since we heard about his diagnosis from your mother . He’s a handsome little prince that deserves much more from life than he’s been promised by this illness. I wish I had words of comfort to lend you, or a full-time super-assistant to help you through all the paper/house-work. I hope you’ll be able to find some relief from the extra stress and that James will continue to grow and be the exception to the rule.


  3. Cat if I can help with laundry and household stuff it would be my honor. Anything to help you be all you need to be right now. I will pick it up and take to laundry so there does have to be another person in your space. Lifting you up everyday in my thoughts.


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