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

Prayer request please!

I am heading off to see our doctor down South early tomorrow morning, as I have been experiencing troubles with my port as of late. The catheter attached to my port has been causing me pain for weeks now (normally I can't feel it at all). We tried the ER closer to home (since it would be nice to avoid the 6 hour drive!) but it didn’t provide the answers needed. Last week I had to remove my gripper the pain was so bad, and have been without my IV fluids for over a week now. I am dehydrated as a result, which causes great pain in addition to my chest and neck pain. Please pray that they can isolate the cause of the pain, and find some sort of remedy.

I also want to thank you all for the prayers; the anonymous and the thoughtful “pick-me-ups”; and encouraging words after my last post. Mentally I am feeling worlds better, and I know I owe it to your care and concern, and many answered prayers.

Blessings and love,

Kate

Jesus replied, "You do not realize now what I am doing, but later you will understand."   ~John 13:7

I don’t know how I got here. It could be the grueling 2 month marathon I had trying not to throw up everything I ate. It could be those pesky female hormones. It could be a Herx reaction. It could be nature’s course of not feeling hunky-dory all the time. Whatever it is, I am here. Call it what you will, as it changes throughout the day: at the bottom of a pit; drowning; falling apart; standing below a mirror as it falls upon me and shatters into a million little pieces without making a sound, yet rocking me to my very core; suffocating. I feel so depressed I can’t make sense of the good that was and is yet to come, and I hate it.

I hate that I am sick. I hate that my husband has to take care of me, waiting on my every need. I hate what this has stolen from our marriage, our social life, and our dreams for what a life together would be like.  I hate that I can’t take care of my son; be part of his school life; do much anything at all for his physical being. Even helping him put on his pajamas is a struggle at times. I won’t even get started on the mental tug-of-war that revolves around family size and the future ability to have babies.

This pressure; this pressure all around me; from myself; from others—“any idea when you will be better?” Don’t I wish! It has been almost 5 years since that damn tick bit me. Almost 5 years of not feeling normal; not having the strength I used to; to being able to live out who I am in action.

I know there are others far worse off than I. I know I have multitudes of blessings around me. But right now all I can think of is what has been taken from me, what I can’t—despite all my efforts—regain from my place in bed. The light at the end of the tunnel has faded to a pinprick and I don’t know why.

I am not angry at God in all of this. I am just waiting. Not so patiently at the moment; wanting to know when, and if it be His will, why? But most of all I want Him to kick Satan in the teeth for wreaking such havoc on my mind and stealing my hope. Because I am sure there is reason for it to be there, I just can’t see it now.

“Let my cry come before you, O Lord;
    give me understanding according to your word.
Let my supplication come before you;
    deliver me according to your promise.
 My lips will pour forth praise,
    because you teach me your statutes.
 My tongue will sing of your promise,
    for all your commandments are right.
 Let your hand be ready to help me,
    for I have chosen your precepts.
I long for your salvation, O Lord,
    and your law is my delight.
 Let me live that I may praise you,
    and let your ordinances help me.
 I have gone astray like a lost sheep; seek out your servant,
    for I do not forget your commandments.”

Psalm 119:169-176

I don’t know how else to say this, or even where to start, but I have this nagging in my heart that won’t go away even with prayer; and maybe what I am learning during this time of prayer is something I am supposed to be sharing, for whatever reason God has.

Babies.  My heart aches for them. At least four were born of that I know this past week, and many others are growing as their mothers wait patiently for them to arrive. I see such joy in their faces (the babies, and well, the parents, too) and I rejoice in these small hands and rooting mouths and stretching bodies unsure of what is in store in this world that can be such a storm of blessings and hardships all at once.

These babies are born, and I find myself all consumed with desire that gets graciously put to sleep for short times in another corner of my heart; and yet here it is: front and center. I dream of them, I pray for them, I cry for them. I wonder if one (or more) will ever happen again to me and my family. I wonder how it can be so easy for some, and impossible for others. And then He tells me: “I was a baby, too. Some 2,000 years ago. I came for you, to satisfy your heart, your every deep longing. I was a baby, for you, and I am here right now.”

 How strange, that as my longing happens to be for a baby, I am to be preparing for One right now. I suppose if He is The King of all kings, He must be The Baby of all babies, and that thought makes me laugh. This baby, the Christ-child—He is everything I need; in His infant form and otherwise. Whether I am sick or healthy, full or needy, He is. He is what I need. And that is what Advent is teaching me in the midst of my longing and tears. I am following a baby—straight to the manger, and on to the cross. And I will get ready for this “new” baby in my life, preparing my heart, by seeing Him in others, and being Him for others; by being sorry when I need to, and letting go even if I don’t.  And when He arrives (though let’s gratefully face it, He already has) I will keep Him cradled in my heart so tenderly that it may be changed again and again; renewed as many times over as it needs; and be so full of “baby”, the most perfect baby of all, that I will want nothing more than Him, and His plans for me.

There are only 8 days left until Christmas, and there is only One Gift I am waiting for.

‘And behold, an angel of the Lord stood before them, and the glory of the Lord shone around them, and they were greatly afraid. Then the angel said to them, "Do not be afraid, for behold, I bring you good tidings of great joy which will be to all people. For there is born to you this day in the city of David a Savior, who is Christ the Lord. And this will be the sign to you: You will find a Babe wrapped in swaddling cloths, lying in a manger." And suddenly there was with the angel a multitude of the heavenly host praising God and saying:

  "Glory to God in the highest, And on earth peace, goodwill toward men!"

 Luke 2:9-14

Hello all!

It has been too long once again in the update department. I was doing so well for so long, no news was good news (though looking back I wish I would have recorded it!)

Fast forward to the last week of October, wherein I was desperately hoping to take Jack out for Halloween again this year. After throwing up on the Monday, and having a difficult week health-wise after that, Jack had the privilege of going out with his cousin, aunt, uncle, and nana while I had to stay home. The next week got even worse: I began throwing up the Sunday night, and continued on—up to 10 times a day—for the next week. Matt came home from his shift, and after a night of listening to me and feeling helpless, he took me into the hospital.

There a bunch of tests were run, and nothing conclusive came back. I was given “magic” pills—that stopped the nausea for about a week, and helped me keep food down, until I threw up again. I have since felt nauseated, thrown up once a week since, and twice today alone. My meds are running out and I am getting nervous of a replay of a few weeks ago when I went numb and couldn’t walk from such shock to my nerves.

Prayers for this to be over would be so appreciated. I have been so far out of commission it looks like I may miss my birthday date with Matt, and I am weary. I am weary, angry, sad, and scared; that something is really wrong just when things were starting to go right. I can’t take much more of this.

Next week we go down to see our doctor to get some bigger tests done, and sometime after Christmas we will find out how far we have come in this battle against Lyme and it’s co-infections.  Until then, we pray, and thank you for yours.

Blessings and love,

Kate

The Lord watches over you—
    the Lord is your shade at your right hand;
  the sun will not harm you by day,
    nor the moon by night.

The Lord will keep you from all harm—
    he will watch over your life;
  the Lord will watch over your coming and going
    both now and forevermore.

Psalm 121:5-8

I ended my last post with the promise of one to follow shortly. A lot has taken place since we got back from our trip down south. After I recovered from surgery, I was feeling better than I had in a long time! I had several good days, and a few that were almost normal they were so productive! Each detail, from getting out of bed and dressed, to cleaning up after myself, were triumphs; and for two days in a row, one major accomplishment after another occurred, surprising everyone (maybe me, most of all)!

Usually when I am lying in bed, something keeps me from moving. Pain; fatigue; a lack of motivation due to depression, or my body just plain telling me it can’t. But by the afternoon of Matt’s last day of vacation, as I lay there thinking, I felt a surge of motivation. Seizing it while it lasted, I got up and dressed; and after ages of being unable to (even with Matt’s assistance), I took out the sewing machine, and mended two long-awaited projects. I put it away, presented an overwhelmingly grateful child with his mended treasures, and moved on to the next thing that was on my “To Do” list: Towels. Stinky, musty, towels. I went through the entire linen closet-- smelling, tossing, and sorting as I went. When I had my pile of clean-yet-stale towels ready, I carried the load downstairs and began the process of stripping them: one full cycle on HOT with a cup of vinegar, followed by another full cycle-- this time using a ½ cup baking soda. (Side note: it worked! All but one baby washcloth was rid of its musty smell, and we have wonderfully fresh towels again! Thank-you, Pinterest! ) While waiting for the laundry to run its course, I stood at the wash basin and dyed a pair of Jack’s once-navy shorts,  getting them ready to pack them for the next child’s use. I hauled all the wet laundry upstairs, and Matt and I, along with Jack’s “help”, hung everything out on the line to dry.

Project #3: Jack’s coat hooks. We purchased wooden hooks for Jack’s room awhile back, and I

He's excited about his new coat rack, too!

really wanted to paint the knobs different primary colors before hanging them at his level (making them attractive and easier for him to pick up after himself); SO, I got them out along with the paints, and set to it! Even painting something as simple as coat hooks makes me feel all excited inside from being creative! I finished up, cleaned up the paints and my brushes, and moved on to Jack’s room. His poor dresser (once mine) had been rapidly deteriorating for months, until finally we were able to get our hands on a great deal through Kijiji. Matt moved the matching one belonging to his ‘big boy’ set upstairs from the nanny’s room (where it lived while Jack’s room was still a nursery), and set the new one up downstairs. After moving all of Jack’s clothes over, and organizing it “just so”, I got out a cloth and proceeded to dust the dresser… and then the rest of his furniture…and then on to the living room! My usual routine of being bright eyed and bushy tailed in the wee hours of the morning was not the case that day-- not after all that work! By 10:00 pm I was exhausted, and entirely satisfied with the progress I’d made.

As if the day before wasn’t productive enough, I had to be up and ready to go for my dressing change the next afternoon. My mother-in-law informed me that a presentation was being put on by the radio station to raise funds for The Canadian Lyme Foundation; and I was asked to review the interview questions. My first reaction was to balk at the idea. Anytime someone asks me about Lyme I see it as the big picture, and have difficulty putting what it is exactly into words, especially to someone who hasn’t heard of it before. It isn’t just a tick bite, or a list of symptoms to me—it is my life. My shattered hopes and dreams; my strength found again. But after reading what was already typed up, the wheels started turning, and my mother-in-law and I were able to bounce ideas off of each other. While she drove, I wrote, and by the time we returned home we had a mock up of what I would later refine and type up for her to present with a team of advocates in the coming days.

When we got home, Jack joined Mommy and Grandma to pick fresh apples-- ripe and ready to eat-- right off the tree. And after dinner, when I should have been ready to collapse for the rest of the night, I stood out on the back porch and cut my son’s hair (a task he really hates!) convincing and coercing until the job was done, and he was in the bath winding down for the night. And then, for the first time in a very long time, I was able to carry out his entire bedtime routine, to completion, all by myself. It was a taste of everything I have worked towards—my hopes slowly becoming reality, one moment at a time.

Still ticked off about his haircut!

While the monotony of reading one chore after the next may only be second to actually doing them yourself, days like the two of those (especially in a row!) come so few and far between, I relish them so! Even fragments of days like those open up the skies and let the light in a little brighter. Because some days, getting up to go to the bathroom is a chore; getting dressed seems irrelevant; and my “To Do” list? But a dream. It is so reassuring to know, in the midst of a disease that can strip one’s motivation and self-assurance, that I still am me: a hardworking, creative, nurturing person—and that reminder is a gift so great . It adds to the piercing light at the end of this tunnel; calling my name; whispering promises of what lies ahead.

My goofy boy growing up MUCH too fast!!!

And while the light is still there, beckoning me, it flickers a little further in the distance these days. For as quickly as I went from dragging my feet to dancing, I am floored once again. Last week was a week of many changes: We hired a new nanny, Jack started preschool, and I switched IV meds for the first time in almost a year. It is a precarious time: one of uncertainty, excitement, and bone-breaking pain. We are learning to let go of the old-- our beloved caregiver, Jack’s babyhood, and my growing sense of comfort; and we are moving forward into growth, new friendships, and a renewed sense of determination in this fight. Although if I am completely honest right now, after feeling so well, it is more disappointment than determination I’m feeling at the moment. So, until my feelings collide with the intentions of my meds (to kick the life out of this disease once and for all!) I will hang tight to Jesus, focus on all of the other transformations taking place, and try to see the good in all of them (like attending Jack’s first morning of preschool—mid-herx and all!)

Thank-you, as always, for your prayers. You hold a special place in ours as well!

Blessings,

Kate

“Protect me, O God, for in you I take refuge.
 I say to the Lord, “You are my Lord;
    I have no good apart from you.”

Therefore my heart is glad, and my soul rejoices;
    my body also rests secure.
 You show me the path of life.
    In your presence there is fullness of joy”

Psalm 16:1-2, 9, 11

 “I know how to get along with humble means, and I also know how to live in prosperity; in any and every circumstance I have learned the secret of being filled and going hungry, both of having abundance and suffering need.”

Philippians 4:12

“Why are you in despair, O my soul?
And why have you become disturbed within me?
Hope in God, for I shall again praise Him
For the help of His presence…”

 Psalm 42:5-6