To the mom in bed, who no one sees

I have been reading many beautiful articles aimed at mothers, working and stay-at-home alike, giving the much-needed encouragement these women need. I find them kind, inspiring, and hopeful; but not for the same reasons most other parents do. In fact, most often, I want to send them to my husband, exchanging the synonyms for “mother” with everything he is as a father; because these articles talk of stained clothes and skinned knees; countless PB&J sandwiches, and trips to the park; they speak of tending to all of the things I hope to one day do. And they make me think: there has to be more to motherhood than the tasks I can’t do. So, in honor of mothers who have to do things a little differently, here is my post on the subject:

To the mom in bed, who no one sees,

Before this, you had no idea how badly you’d wish you could change a poopy diaper. No one would believe you when you said the thought of changing urine-soaked sheets in the middle of the night (or any time at all) would be a desire you held in your heart. That the mindless tasks that nobody hopes for, but almost every mother performs, seem like the greatest gift you could receive. To make the dinner that gets refused; to bundle your child up for fifteen minutes only to hear, “I have to pee!” To the grocery store runs with a toddler that were timed too close to a meal or a nap that leave the whole store trembling in your wake. You dream of these days that will give you the badge of motherhood. But instead, you wait.

You wait, and you ache; you worry over whether your child will know they are loved enough, or thought of enough, or important enough to you; simply because you cannot do these things. You sit on the floor to hold your crying baby, crying yourself because you are too weak to stand, and all that baby really wants is a mama who will hold him and walk. You give assured kisses as your child tucks you in for bed, promising you love them and will see them soon. You deny playtime and beg wearily for a quiet cuddle instead; but that rambunctious 1 year old doesn't know what it means to sit still (or why you can’t chase him).

You delegate. You try to know her favorite food or his schedule, but sometimes you fail; because life is ever changing, and you aren't always there to see it. You teach others how you want your child raised: from time-outs, to picky eating, to how much screen time is allowed in a day; you stress the importance of not telling a child they are bad, but that their behavior is bad. You research to make sure that there isn't a “better way” of doing things, and pass along all the wisdom you have gleaned.

You push yourself harder than you should—past what your body or your sanity can handle—just to have a “normal” experience with your child once in awhile. You adapt. You learn what you can do with your child, and you give it your all. You read to him; you read, and you read, and you read. You break your own rules about screen time just so you can keep him still so as to be together a little while longer. You share snuggles when you can; make shadow puppets; tell stories about your childhood or how you met Daddy. You teach him about God, and The Greatest Love Story Ever Told. You pray together. You have picnics in bed. You tickle and you laugh and you love. 

You do your best to help them understand something that should never have hit this close to home; and explain the wonders and dangers of the medical world around them. You let them play doctor on you, and feel a strange mix of pride and sadness when the squeamishness you felt as a child isn’t present in them—but  just the opposite—as this world of medicine is the norm for him now, too. You thank God this happened to you, and not them.  

You discipline. You get very creative at disciplining a child that you can’t chase after. You teach; you inform; you correct; you forgive. You teach what it means to show compassion, and how to do so regardless of your circumstances.

You ache for all you cannot do: volunteer in the classroom, enjoy the summer outdoors, or even give your child a bath. You watch as someone else does it for you, and feel gratitude, jealousy, sadness; and, sometimes joy. You experience the bittersweet feeling of knowing your child loves their caregiver, happy that a positive bond is formed; and, sad that it isn’t with you.  

Dear mother that thinks no one sees:  I do. I see how the world so often defines motherhood as caring for your child’s physical wellbeing, and I challenge it with you. I know the struggle with self-worth, and the direct correlation you make between how much you can do, and how valued you are. I know you worry that their childhood will slip away without you ever being a "real" part of it. I know how much you love your child, and how that love is no less than the mothers who are physically able to do laundry or unload the dishwasher. More importantly: your child sees you. They feel your love and know it is there. In the midst of your doubts and your worries, they know. Even when you aren’t the one to share in that childhood favourite, or hold their hand on the way to school, they know. You are irreplaceable.  For as long as you are loving them, you are their mother. And there is no doubt in my mind, by that definition, you are a not only a mother—but a good mother, too.

Love,

Kate

Home again, home again!

This trip was particularly trying after not having been on IV fluids for the past 2 weeks. As I mentioned before, I am on 2-3 liters of fluids a day intravenously; without them, my blood gets thick, my pain worse, and in this case—seizure activity starts up again. The ride down took a lot out of me, but fortunately I had a full day in bed to recover before our doctor’s appointment on Friday.

As it were, my blood tests came back clear, vitals better than ever, and the only concern (other than my port) was my thickening blood. Blood tests ruled out infection; the previous x-ray ruled out any kinks in my catheter, or the possibility of it disconnecting from the port hub; and given there was no heat or swelling over the area, we didn’t have much to go off of other than some significant pain. By powers of deduction, the next step is to see if it isn’t the fascia (tissue between the skin and the muscle) that is irritated. So, after a much needed check-up, we were sent back home to get some light massage of the fascia via cranial sacral treatments. If that doesn’t move things back to where they belong, and the pain is still present, we head back for surgery.

I have to admit, at first I was feeling pretty indifferent towards getting a new port in. Go ahead, just knock me out and slap another one in there! But as time has gone by, and the reality approaches, I have that sinking feeling in the pit of my stomach again. It is all rather vain, really, but my last surgery left me with a very noticeable scar; which, when covered by a gripper and dressing, isn’t very easy to see. The thing is, this time, if I need surgery, they can’t put it in the same place. If it is the tissue that is the problem (and not the port itself), then getting a new one placed there will do me no good. I will likely have to move to the other side of my chest. Now don’t get me wrong, I am all about symmetry, but in this case, I could really stand to do without. Not to mention how much worse my existing scar is bound to get when they go back in there, be it next week, or a year from now.

In the meantime, I was slowly regressing without my fluids, having not been able to access my port in some time. So until we get this figured out, it is peripheral IV’s in my arms again (they seem to last about 3 days in my weak veins before blowing out and/or needing a new one). I was able to get a really good nurse today who found a good deep vein in my forearm; which means less pain, more mobility, and a chance of lasting longer vs. placing one in the back of my hand or the crook of my wrist. And, she did a really good job of putting it in there. As far as peripheral IV experiences go, it was a good one. I have been slowly dripping fluids sans pump ever since (a pump goes too fast and makes it hurt…hopefully this will help it last longer, too, if I go easy on it).

I said to Matt on the way to the hospital today that it really was unbelievable how terrible I felt. It was a huge wake-up call for me—that I used to feel that badly on a regular basis, and how unbearable it felt in the moment. I am so grateful for how far I have come, and for The One who has carried me here.

Spirochetes: the corkscrew-shaped bacteria that is Lyme

I am still on a hiatus from IV antibiotics until this is all sorted out, which I am also sure is playing a part in how awful I have been feeling. The break has been okay, but it is about time we get back at them, and soon. Strategically, I think we are in a good place. The Lyme bacteria have likely unsuspectingly come out of hiding somewhat, without the presence of antibiotics, and when we do hit them with a new one, they will be hit hard!!! A few weeks ago I wrote about how scared I was for the Herx to hit when that time came; now, I just feel competitive, and ready to kill.

Thank you all for your prayers over this past week. I have been slowly trying to recover from our trip, and am hoping to faster now that I am getting a decent amount of fluid in me! Please pray that this would all be resolved soon; that God would give me the trust in Him, and the courage I need; and that I wouldn’t let fear or vanity dictate what is best for me or my health. Also, if an escape from surgery is possible, that there would be one.

Love and prayers back at you all,

Kate

“In the world you will have trouble, but take courage, I have conquered the world.”

John 16:33