Each day after I get my older kids off to school I begin the marathon called Keeping Parker Alive. It is a marathon of medication schedules, feeding schedules, breathing treatments, therapies and cares.
Bath time consists of removing two ostomy bags, (careful of the mess!) the dressings around a g-tube, the bath itself, keeping Parker’s hands away from the above mentioned areas, reapplying the ostomy bags to a wiggly and by now frustrated little boy, keeping those hands away, reapplying the dressings to the g-tube site, keeping those hands away, along with the usual lotioning, diapering and clothing.
Oh. And then comes trying to change the trach ties without having the trach itself pulled out and thrown across the room. Excitement abounds at our house each and every day.
It is a two person job that I manage by myself more days than not. With two people it is a 30-45 minute job. By myself it is more like an hour. And that doesn’t include the clean up of wrappers, tape backings, old trach ties, and the like that have been hastily thrown about trying to get things done as quickly as possible.
Reading about this experience is no where near as exhausting as being an actual participant. Especially when a few hours later one of those ostomy bags is sure to fail, and the whole process has to start again.
Next on the list are the 10:00 a.m. meds moving on to 11:00, 2:00, 4:00, 5:00 6:00, 8:00 and finally 10:00 p.m. meds.
Parker is fed via his g-tube 4 times a day and then hooked up to continuous feeds at night. He also has ‘in his highchair’ eating experiences where we try and not lose the small amount of oral motor skills he has.
Parker’s trach needs to be suctioned often this time of year. We start out by adding a several drops of saline down his trach in order to soften up the gunk in his lungs. Then we stick down a hollow tube and suck out the saline as well has the mucus up and out. It is something he hates. I do too. This kid has had enough discomfort and yuck to deal with. I hate having to add to the pile.
Therapies are several times a day for anywhere from 20-30 minutes at a time. Any parent with a child who has special needs will tell you the guilt they feel at putting in a load of much needed laundry instead of the time being spent in therapy activities. Your house winds up going to hell. You try to put blinders on, but the knowledge of the dirt still leaks into your mind via some kind of Mommy Osmosis.
With Parker’s medical issues, he can’t be in a room alone during the day….much less at night. So at night we drag up an old mattress from the basement and lay it on the floor of Parker’s room to sleep on. This is the only way someone can hear the alarms on Parker’s several monitors go off and attend to their demands. And the monitors, they go off quite often. A good night’s sleep is rare.
By late afternoon when my older kids come home I am exhausted and quite often cranky. But that doesn’t matter. My other kids still deserve a Mom too. I attend to homework, listen to the events of days while trying to make something for dinner and get loads of laundry done.
Reed has taken over Parker Patrol by this time. Like a sprinter handing off the baton, Reed takes over mixing a new batch of formula with microlipids, looks at the schedule to see what meds are on deck and then handles the next ostomy bag clean out and the change of clothes into pajamas that signify the close of another day.
We’re doing nothing that thousands of other parents of medically fragile kids aren’t doing. We don’t do it because we are saints, heroes or anything even close. We do it simply because we are parents that love our kids and want to keep them around for a long time to come. We may have different ways of doing what we do, different ways to cope, different challenges to be met.
But there is one thing that I think we would all agree on:
It takes a parent of a medically fragile child to truly understand what another parent of a medically fragile child is going through. It doesn’t matter if your next door neighbor’s sister in law’s best friend has a chronically ill child. You have to live the experience. Face the fears and stare down the demons. And still have what it takes to get up in the morning and start all over again.
Parents of children who have a tendency to live their lives constantly circling the drain already carry enough burdens on their shoulders. They don’t need the added weight of the judgments of others heaped on there too.
Why is is so hard to understand that some parents may experience times that they are in need of support…….for as long as it takes their child to get well? Why is that need so often perceived as a weakness? A character flaw. Something to be gossiped about with self-righteous vigor?
I don’t see this as being ‘needy’.
I see it as being human.
Twitter: livingingrace
says:
I can’t imagine. I know what it takes just to keep “me” going, and I can do alot more on my own than P.
You are my hero. You and every other parent of a medically fragile child.
Seriously. I don’t think I could manage.
God love you, sweet friend.
Powerful words! You are an amazing woman with an amazingly full plate! I ditto Kelli’s comments! I wish you all the help you need and none of the ill-meaning world in the process!
I thought I had a crazy day, but after reading about your day I realize that mine is not even in the same category as yours.
I too have slept on the floor of Luke’s room, but I found that keeping a monitor on full blast in our room does just as good of a job, so therefore I might get one or two hours of uninterrupted sleep. That is if one of my other little ones don’t wake me up in the middle of the night, which happens far too often.
I can totally relate to the comment about not ever feeling like I do enough for Luke, I guess it’s just a Mom thing.
Love in Christ,
Sue
Twitter: nehimomma
says:
I sooooooo hear you. Ya no one gets it until they live it. We resorted to having our son sleep with us since he was 6 months old, because he’d push his cannula out of his nose at least 20 times a night, now he’s 20 months old and we still have to sleep with him.
Wow. God bless you mama.
d
Praying for you…I truly can’t even imagine!
I can’t even imagine what an exhausting schedule you have. You are always in my prayers.
“Why is is so hard to understand that some parents may experience times that they are in need of support…….for as long as it takes their child to get well? Why is that need so often perceived as a weakness?”
Because they have not been in your shoes. When they see weakness, it is just a reflection of themselves. They don’t know.
True strength is admitting you need…. whatever.. a shoulder to cry on, a hot shower to cry in, a chance to vent, a good night’s sleep… etc., and despite all that, still doing what needs to be done.
You have true strength. Don’t let anyone tell you otherwise.
Love you dearly friend.
Tammy, you are so right! No one can TRULY understand what you are going through unless they have done it. You deserve a listening ear without criticism. You deserve to have what you need. I dont think you are weak!!! I wish I could help you in some way. But since I cant be there to help you, I will be there to listen and pray and love. I am sire reading my latest blog post really angered you. But you are such a beautiful person, you were supportive and understanding of my SMALL problem with all you are going through!!! I can only imagine the strength it took not to blow up at me! I love you and your family so much, even though we havent met. I will continue to listen, pray and support.
Much love,
Amy
It is SO hard – and even having a child with mild extra needs, like my Baby, is so exhausting on top of everything else that a house with growing children needs, that it’s easy to sometimes feel very, very alone. You’re not, though. I wish I lived closer so I could give you a hand when you especially need one.
I cannot begin to wrap my mind around what you and all the others go through every day, so I will not even try. Just know that there are many of us praying for you and your family daily. Families like yours are my heros.
Much love and God Bless!
Kay
Your’s was the first blog I read this morning, and it gave me tons to chew on. I think it’s pretty incredible that you can be so eloquent in your writing after doing what you do each day.
I don’t have many words, but just know that you impacted me today.
Oh, I TOTALLY know what you are going through! NOT!
Love you, babe.
You truly amaze me… As deeply as I love my children, I don’t think I could do it as well as you do. Parker is a blessed little boy to have a mama like you!
You are amazing! Do not let anyone tell you otherwise, and you certainly are not weak!
As I read your blog, I thought to myself, this is the perfect example of what doctors need to be seeing. They need to know what they do in the office translates to at home, and what kind of stress they directly put families under, albeit most of the time necessary. But, there are those out there that just do not understand.
You are a rare breed Tammy, and Parker is so very lucky to have a mommy who cares with every ounce of her being. Ignorance is bliss for others, but painful to hear sometimes, so just keep it in mind; others don’t understand. Much love to you!
Wow, yes I’m exhausted just reading this! Thank you for sharing what your day is like Tammy. It helps put things in perspective for me – you have quite a schedule to follow there with the meds and feedings. I’m sorry if you’ve encountered some gossip, how terrible! You’re just a parent doing what needs to be done…and I think ALL parents experience times when they need support!
Hi Tammy -
So sorry it took me so long to return your visit! I’m so glad you followed me over from Leejo’s – can’t believe I haven’t bumped into you before. Leejo and I both have little ones with cyclic vomiting syndrome (among other things…) – not fun.
Anyway, I just spent the last hour here, reading through your recent posts and menu pages – boy, do I feel for you! Do you have any home nursing support, or is it all you?
I really identified with this last post – Jacqui just weaned of tube feedings last June, but the G-tube stays in place because her CVS episodes last two weeks when she has them. This has been her first ‘healthy’ year, so I know what you mean about your house coming down around your ears. We still haven’t crawled out from under the devastation wreaked on our household by her first 4 years – LOL! I didn’t have the ostomy bags to deal with, but everything else pretty much sounded just like home : ) So very sorry you had a trach and G-tube added to your daily regimen on top of everything else.
I completely agree with you, it’s not weak, or needy. It’s not a character flaw. You’re in survival mode, doing whatever is necessary for your family to function. Very people will even come close understanding what you live through on a day to day basis. I’ve found that most people only want to hear sound bites of the little triumphs or the happy ending. Hang in there – you’re doing a fabulous job! If you ever need to vent to someone who ‘gets it’ – you know where I am : )
Adding you to my blogroll Sweetie, and I’ll be back often!
Speaking for myself, Tammy, it’s not at all hard to understand that parents of medically fragile children need support and understanding. My word, just reading about one routine day in your and Parker’s life is exhausting. You can’t imagine how much I admire you.
Tammy I value you letting us peak into the window of your life. It shows me how I must get down on my knees yet one more time, thank God for what I am blessed with and to ask for yet more mercies and blessings for your family and those like you. Parker is a true miracle, wonder and joy. I feel truly blessed to be part of your life, even if it IS the cyber side of things!
It’s difficult for me to type because my hands are exhausted after the wild applause I just lavished upon you.
Our medically fragile days are passed, but not the memories. Our emotionally fragile days which require constant attention and little sleep in order to keep children alive remain…I *heart* this post. Thank you.
I can’t count the number of times I have told people it is the children who are heroes and blessings…not we, the parents.
Bless you. Sending love, prayers and strength. ox
My heart goes out to you! Thanks for stopping by my Creative Blogs and helping me feel better.
I have been reading your blog and following Parker’s life for a long time and never once did I fully realize exactly what you need to do in a day. I think this post was an amazing idea. Maybe alot of people out there will realize what it is that you do and what you go through and be more understanding. You have my admiration!
I will continue to pray for Parker(((hugs)))
Amen sista!
I wish I lived close to you. I would come on by–do your laundry, clean your house, make you a hot cup of tea and something sweet to eat. I’d come and listen if you needed to vent or rub your shoulders (because I’m sure they are achy). I’d read to Parker and try to help with his therapies (don’t think I’d be too helpful with the medical stuff!) I’d come not because I view you as weak and in need of help. I would come so I could in some small way contribute to greatness. For what greater and more important (and exhausting) job is there than keeping a child alive. Unfortunately, I can’t hop on by, but I can continue to keep you and your family in my prayers. I pray for Parker’s health, for your continued strength, for the love that is obviously strong in your family.
You said it absolutely perfectly. I have told you many times that I admire your strength, and I’ll say it again. Whatever has been asked of you, you’ve done. Period. I pray daily for Parker’s good health so that it will get easier for your whole family in the very near future. (((hugs)))
Love the new background BTW!
I do admire you and your strength and pray that one day you are on the ‘other side’ of all the medical challenges you face with Parker. We dealt with Nathan’s condition a total of four years … and it seems only a dream away that we were dealing with his fragility and now only deal with his Down syndrome (a piece of cake
Thanks for your vote of confidence to me pinching pennies as my husband retires. I’m sure I can muster up the strength to handle it … after all, dealing with medically fragile kiddos gives a person great fortitude to overcome something as simple as living on a tight budget, eh
Do you get a sign up sheet in Relief Society? The come help Tammy with Parker’s bath hour? I don’t know how in the world you do all that alone. I sometimes can’t even get my healthy kids ready.
God bless you for what you do!! Parker is lucky to have parents who are so diligent with his care! I was an ICU nurse at a Children’s hospital and took care of kids like Parker every day. It was exhausting to do it for 12 hours a day. Even after 3 years of that, I come no where close to being able to say “I know how it is.” You’re right, unless you have a child with these needs, you have NO idea.
(hugs) and prayers for you and Parker.
All I can say is WOW! I don’t know how you do it. But it is my feeling that you were handpicked to be Parker’s Mommy. God bless you, Parker, his daddy and sibs.
Every day is a marathon, your life is what, a perpetual triathalon. Parkers needs alone would exhaust any mom, let alone the other lovely and wonderful children who require mommy’s attention too.
Lovin’ on you sweetie!
I have a tipical two-year-old. Somedays I just feel like I’m over my head, but then their’s someone such as yourself that has to deal with so much more. God Bless.
“It takes a parent of a medically fragile child to truly understand what another parent of a medically fragile child is going through. It doesn’t matter if your next door neighbor’s sister in law’s best friend has a chronically ill child. You have to live the experience. Face the fears and stare down the demons. And still have what it takes to get up in the morning and start all over again.”
thank you.
I don’t think there is anything more frustrating than a parent who thinks they could make my life easier by giving advice when they have NO IDEA what my life is like. I’ve been pretty frustrated with that lately, you might have picked up on that.. smile. You and Parker are amazing. Lately I feel as tho I do NOT have what it takes to get up in the morning and start all over, yet there really are no choices!