Today, sitting beside Mark as he slept, I paid closer inspection to him from head to toe. His hair was 1 month's growth longer, skin was yellowed in tone, his sunken eyes had dark circles around them, cheek bones strikingly protruded, he looked....fragile. My big strong construction working son looked so frail and weak. I arrived just in time for his physical therapy and she carried in the enormously clumsy back brace. It screamed, torture chamber and looked like something out of a horror movie. As I watched him struggle to sit up and listened to every instruction that the therapist reminded him about, I realized he was coming home to me and that I would assume the new role of physical caretaker. The boot cast, walker, back brace and all the strict rules that minded his broken back and ankle were overwhelming and a big responsibility. I learned that what we thought was a broken foot, ended up being an ankle bone that travels into the foot. This is the worst most possible bone that he could of broke because any amount of pressure on it could shatter the bone bellow it and that would mean surgery. So, I watched him hop step on his left foot and then drag his right, heavy booted foot, along side. I asked the therapist if hopping was okay for his abdomen and back and she said, "Well......" and kind of shrugged her shoulders.Standing up, he looked horrible. Pale, muscles weak with shaking and 30 pounds thinner. He resembled a gangly little boy again, not the filled out man that was stuck in my mind. I wondered if he has looked at himself in the mirror at all and figured he had not. That will be a shock for him to see. He took two steps and stopped, claiming that he wasn't sure he could go any further. He did though and it was such an ordeal to get him back into bed. He was white as a sheet laying there, exhausted. I sat there looking at him now and for the first time I separated myself from this situation...I stood back and looked at myself looking at him. I was scared and certainly didn't feel that maternal instinct kicking in. I don't feel qualified to take care of him in this condition.
As your children grow into adulthood, they ask for a lot of advice. They respect your opinion and look up to you in a different way...a more adult way. And here I was feeling so inadequate and vulnerable, wondering if I was really all gown up. Instead, I felt like we were both children again.
There is still not enough time in each day between home & hospital, phone calls & visitors, blogging & emails and lupus......I still need a couple more hours, to delight myself in some blog visiting of my own. My favorite list on my laptop is huge as I have fallen so hard just through your comments. Getting to know you better with day to day reading has now become a treat instead of being a part of my predictable routine. I miss predictable *sigh*
posted by Darlene at
8:44 AM
51 Comments:
You and Mark are on this journey together. You'll each learn from the other, just as I suspect you always have.
Holding your whole family in our thoughts and wishing you all good health.
- Lee
i've never been a parent so i'm not sure what this experience feels like from a mother's perspective. but i believe that you, Mark, your family, friends and the collection of specialists (medical and otherwise) that will gather and be part of this journey will find a way to answer all the questions that come up. i was in my mid thirties when my accident happened. sometimes my parents would look at me strangely when they saw me interact with doctors or talk about my injury. we all learnt plenty about ourselves and each other.
take care,
amy
Mark is taking steps! tiny steps, but steps none the less, a few weeks ago you couldnt imagine this,from an outsiders view, I see big changes, and he will gain the weight again, there is time enough for that,all of my positive thoughts are sent your way Darlene,he is going to be fine.xx
hugging you darby...
we will always be here, for when you are ready and can breathe you again.
today i would like to send you a huge basket filled with fresh wildflowers, bottles of faith, and some sweet cookies.
xoxo
Mark's progress over the past week has been nothing short of amazing!
Keep taking those baby steps.
If there were any way I could send a couple of hours out of my day, I would. Suffice it to say, you are all in my thoughts.
You will discover that you will be able to provide the care Mark needs when you get him home. Don't worry too much about making mistakes, even the medical staff are not sure about some of the outcomes.
Continue to make each day as good a one as you can by....
serving others, caring about those you serve and sharing the love in your heart.
Sweetheart, there is no one more qualified to take care of your boy than you! Yes, the medical team know all the correct terms for his injuries, etc, and have brought him through these first traumatic weeks, but you, dear Mother, only have to look into his eyes to know what is going on in there...
Have no fear about your ability to take care of him at home, Darlene. You will all feel so much better just having him at home, and I'm sure there will be 'experts' that you will be able to contact whenever you feel the need. Don't worry your beautiful self. All will be well, and I'm sure Mark will feel better for being with you all, in familiar surroundings.
Whilst joining in with the meditation for Mark yesterday, I felt so calm & connected, and so very hopeful. It may be a long journey to recovery, but there is such a bright future ahead for Mark, I'm certain. His story has touched so many already, and will continue to do so for a long time.
Take Heart, beautiful Mum that you are, and know that you are more than able to do whatever you have to do.
One day at a time...
Much Love & Healing Hugs for all the family,
Suze xXx
Mark's survival and recovery are nothing short of miraculous! I can remember how overwhelming it was when I brought my first baby home from the hosptal. I just knew I wouldn't be able to take care of her without all of the nurses and doctors. I felt so inadequate and suddenly responsible for another human being's very existence. (All of that and I was barely 17 years old). But she managed to survive my mothering "skills" such as they were.
I'm sure that when the day comes, the day you have waited for for so long now, and Mark comes home, it'll also contain those feelings of inaequacies along with the unspeakabe joy that he is actually there. Embrace all of those feelings, dive into them and let them have their say, but only for so long. You can do this just like we can mother our new babies when we bring them home from the hospital.
It would probably help to talk to someone professional who can give you a handle on what Mark is going to be feeling during this time, his frustrations, angers, feeling sorry for himself and so on. Don't take it personal! As his caregiver, it's gong to be very stressful and you're going to have to have some kind of an outlet so your Lupus doesn't flare on you and that you don't take it out on your hubby.
Prepare with pre-prayer. Guard your heart & mind in Christ Jesus our Savior. He alone can give you the heart that it's going to take to serve Mark and all of his needs. He alone will be the provider of the physical, emotional and spiritual strength those days will call for. He alone can encourage your heart and your family's hearts when those minor setbacks occur or things feel like they're taking longer than you'd like. We can NEVER rush the healing process (physical, emotional or spiritual). If we do, inevitably we have to take a couple of steps back and learn the very things we needed to learn!
You've been packing your bags for the start of a new journey. The tickets have been purchased, the plane has been boarded and you're waiting for the okay to take off. There might be some turbulance but the destination will be worth the bumps!
Hugs from Texas
Connie
I think that no matter what you will seem to find a way. You have an amazing amount of strenght that you never knew you had. When he comes home rememebr to ask for help when you need it. Let him be mad at you for helping him and treating him like a baby.
YOU CAN DO THIS!!
And as you do we will all be here to listen.
In my thoughts and prayers.
Well y'know, the first time you brought your newborn baby home and realized you were totally responsible for him, I bet that felt at least a little overwhelming. But you learned to do what you needed to do. There's no doubt in my mind you'll do the same for your grown-up baby, no matter how overwhelming that seems right now. {{{{{Darlene}}}}}
That last line is so true.... I miss predictable. Being a mama is the best and most tormenting gift I've been given in this life. I worry so much about my kid, my life....everything. Mark's accident and progress has made me realize that I must learn to live in the present and stop worrying about the what if's.
I'm glad you've found respite here with your blogging friends Darlene. Please take good care of yourself. xo
Whew. That's a lot you have coming your way. I pray that God will give you and hubby the strength to care for Mark when he's home. I also pray that God keep your confidence in your abilities in tact. Not always easy, I know.
Love you...Lynette
It must seem so overwhelming to you. But I'm sure you will learn how to take care of him now, just as you did when he was a baby. Find all the medical professionals you can to help you, and call on them often if you need to.
And how wonderful is it that you start thinking about bringing him home!
Oh Darlene(((hug))),you'll see strength you never knew you had when it comes to caring for Mark.
Together you will attain great healing. I know this,believe this with all of my heart.
Thank you for sharing the most intimate details of this journey;for allowing us to love you and your family.
Big love from Indiana,
Kim
Dsrlene,
The candle remains lit over here on Cape Cod for you, Mark and all your family. The time you need to do all the extra will come to you somehow. Just don't question it and you will be able to do accomplish what is necessary, fun and peacefully restorative each day. I have seen and felt it happen many times.
So happy to hear about Mark's steps and to know you were beside him. Ask for help!
I have been unable to post to you for 4-5 days....hope this works, nonetheless, you have been close in my thoughts.
Hi Darlene
I know having Mark home is scary, and yet there has been so much progress in the last few days it can only be good.
Do you have any sort of time-line yet?
Big hugs to you and to yours - you are an amazing team.
(((Darlene)))
You can do this. You can help Mark heal and continue on this path. It will be hard, and there will be many times when you both will want to give up. You just need to take the little steps and not be so overwhelmed by comparing the past to the present. Live in the present, Mark will never be what he was, but he can become so much more.
Darlene, I keep coming back to your photo and seeing a poem.
"Steeple"
What do you see
this woman
careful hair
her hands red
the ring
of a wife
her lips
drawn with tension
I see her eyes
green or hazel
they look
far away
into the past
and towards
an uncertain future
I want to reach out
and cup her face
and whisper
that I am here
that I love her
I want to stroke
her taut brow
and whisper
that many are here
that we love her
I want to grasp her
steepled hands
to bring her
lost eyes
back home.
Wow Brian, that says it all. Beautiful!
Hey, you have made it this far, you'll be fine the rest of the way too. Don't worry, don't think about it too much...take it one small thing at a time, one hour at a time, one day at a time...and soon you will get your nursing degree:)))
You're a beautiful woman, show yourself what you're made of.
Being a parent is the hardest job they say and for you...well, this is proving true. I can't imagine what you have been going through and the road ahead is long and winding...but as a mom....you will win this fight, feet first, up that hill to the top where you can throw up your arms and scream..."I did it...we did it...we survived !!!" and you will be proud to say, "I'm a mom and this is the best job in the whole world!" Thank you God !!!!
(ps...you are a beautiful writer and I think you need to contact a publisher about having this story in print !!!)
You can make it through this, Darlene, as long as you have the support you need as well. Don't stop asking for help... it's so important right now.
How is Mark's eating going?
Again, as usual, many blessings to you, Mark and the whole family.
That feeling? That "I'm not ready to do this" feeling? It's completely normal. Strange thing is, when you have to be ready, you will be.
Mark's strength and yours along with that of your family will get you through. And whatever help is necessary will arrive.
Even miracles aren't simple, are they?
Blessings.
This comment has been removed by a blog administrator.
D~ As scary and overwhelming as this is, these are steps in the right direction. It does seem insurmountable at this point; however,each day will bring further progress and steps that are closer to that final healing.
When you feel scared, try to remember and embrace the hope and forward movement, because these are, dare I say, exciting steps (literally and figuratively). Mark is walking! He is moving! It will become easier with time.
Right now, just take baby steps right along with him. Continue to be gentle on yourself, just as he needs to be gentle with his body. Walk the road together. Even when you are both scared, you will continue to be there for him, because you are his loving mother and he will continue to move, because that is what he must do.
You are both strong. You both love. You will love and be strong together.
Continuing to send prayers and love to you all.
xoxoxoxo
I know you will be taken aback at your own strength, Darlene, when the time comes. I mean, Mark got his from somewhere, right? And Deb is right! You have been a new mother before, and this is just the same! I have faith in you!
:)
This will be a long journey for you and Mark but it is one that will make the two of you even closer than you already are. You will both get a refresher course in each others weaknesses as well as your strengths. It will be a journey filled with tears as well as laughter and we will all be here praying for healing,strength and understanding for you both.
xoxoxo,
Sheila
I think that insisting on time for yourself each day, no matter how hard it can be to find, is going to be so, so important Darlene to recharge, replenish. Also, I wanted to tell you that my mom leads groups in Los Angeles for caregivers because it is such a stressful thing and giving out so much one needs one's own support. I thought there might be groups in your area too. They often meet every other week or so and lend support to each other, a place in person to vent, laugh, cry, and everything inbetween. If you want help in finding one, just let me know. I know you will get through this and his independence will come slowly but there will be sunshine and grace and faith and much love as your companions too along the way, and of course, all of us too! xoxo
I liked what the other Deb said, just like being unprepared when we first brought our babies home, somehow instincts kick in and we know what to do.
I know it seems overwhelming right now, Dar, but it's amazing what we're capable of when we have to rise to the challenge.
This does not diminish the task at hand ... it's huge. Just know that this cyber-support system will be with you through that stage as well.
Lots of love, Deb
Thinking about what is ahead of you must be very daunting. Just live one day at a time Darlene. Thats what worked for me. Its quite amazing how everything falls into place and the right person always appears just when you need help. Each day Mark gets a little stronger so in a weeks time he will be at a slightly better place than where he is today. You are doing so well. There's a fountain of strength within you that I find amazing.
Surely you can have some kind of home health assistance during the early stages of Mark coming home? I would think physical therapists would have to come to the house to work with him, as getting him to and from the hospital would be an ordeal. Whatever the circumstances, you will figure it out - one day at a time.
It does my heart good to hear you talking about your fears regarding Mark's care when he comes home. I know he will need A LOT of help, but you will no doubt be counseled as to the services available to help.
The thing that stands out to me in this post is not the dramatic weight loss (which will be regained now that his diet is advancing) or the difficulty and pain associated with his physical therapy (because he is tough mentally and physically in spite of all he's been through). What stands out loud and claar is that you are talking about the reality of what life will be like when he gets home. There is no doubt in this post about "if" he comes home. Mark IS coming home and whatever he needs will be supplied just as surely as his needs have been met from the moment he crawled to the road.
Your caution and expressed fears only give me reason to celebrate with joy, Darlene. Miracles are not doled out by a miser, they surround us each and every day and there is no reason to believe that they won't continue when Mark makes the move to your home.
Sending love and hugs,
Star
Hey, Hi.
You are ever in my thoughts.
Wow, Mark has come such a long way in what is really a short time, although it has felt, to him and to his family, as an eternity--I'm sure. Your love for him just touches my heart in the most tender way. He is so fortunate to have you as his mother because although right now you feel so unsure and almost child-like--in reality you are so strong and wise. It will be so hard for you to help him continue healing at home, but God will be right there with you--every step of the way--as will all of us. Please count on that--that we will continue to pray for you, to send you strength and love so you can make it through each day. This is all happening for a reason that right now only God knows, and I feel privailaged to be a part of this--even in this smallest way. Take good care of yourself along the way. As always--much love to you and to your family--and especially to Mark.
XOXO
There's no place like home, HOME SWEET HOME! Yes, take it one second at a time, I hOPE you will have help and physical therapists checking in when he comes home, you will need help, especially with Lupus and the stress, I hope they aren't rushing Mark home yet! I can imagine why you are feeling these feelings Darlene, it is overwhelming, take some deep breaths and we will all keep praying, for HEALING and STRENGTH and DIVINE GUIDANCE in all these matters of the heart! xo, Cinda
I have been lurking for a couple of weeks. I check back for daily progress. The way you write about your son is so beautiful, I can tell you are such a great mother. I am so sorry for your Lupus, it must be very hard to stay home when you have to.
Thinking of you and your son and sending healing energy.
I'm late coming here today, and these lovely people have all said what I am thinking. You are not alone with Mark's care. It will be tough, but you are not expected to do it single handed. Live in the moment, deal with things as they present themselves, if you can, and don't worry about things that haven't happened yet. Dealing with what has happened would have seemed insurmountable a year ago, but you have done it.
Take a deep breath...
What growth I see you making and I figure Mark is too. I believe Jay is growing also as he has been the captain leading you all. My heart quails at the thought of what lies ahead and I rejoice at what is past. Mark is alive, moving and eating. I didn't think it would happen and without miracles it would not. Who knows what miracles lie ahead!
You can´t have an answer to every question. No one can. Your not alone, Mark has you,you have Mark, you both have your family.Together you will figure things out. And if you need help, I´m sure us here in bloggie world will try our bests to help you if we can.
Lots of hugs and kisses,
Sophie
You will make yourself ready, somehow. I know it. Each day Mark is taking giant steps and the ongoing progress he will make before they discharge him will take you and him all that much closer to the do-able.
Loving you and hugging you...
Vanessa
oh baby my heart hears you and I would like to give some unsolicited advice.
I think youl do amazing things with M but I also know your body is not always your own. I do hope things go to plan but physiclly you cant always make your body do what it has to. I hope you have soome help sweet one . Prayers daily for you all and I hope you know what I mean.
Love Shaz
I'm so glad Mark is making progress. Glad you have such a loving, strong family to help you through this time.
Hi Darlene, I'm still praying for you and Mark. What a miracle he's taking baby steps!
You can do it. If there's a will, there's a way. God will be with you to help you. Think positive. Look how far you have gone in the past month. Don't forget, practice makes perfect.
Darlene...any progress is good progress. It is hard not to project into the future to a time when all of this is behind you though I bet.
You will make it through, one moment at a time.
You both seem like fighters to me.
xo
Strength - we will pray for strength for you. The promise, "I can do all things through Christ who gives me strength" comes to mind, although I wonder if sometimes that doing comes in the form of accepting the help of other people who can fill in our gaps. So I'll also pray for help for you when Mark comes home, for angels to appear at your door and surprise you in delightful, unexpected ways. Keep asking God for the big miracles - I don't think he's done yet :)
Much love,
Trish
darlene.. baby.. i need you to listen to me. i want you to listen HARD:
from personal experience, your role as a parent hasn't changed at ALL when mark comes home. the rules may have changed, the responsibilities turned, but you are still the parent, still looked up to, and valued to the core.
he needs to see and take that from you. he needs to see it in your eyes even when you don't feel it. even when you fear and suffer indecision. stay strong. stay real to yourself, your husband, family and mark.
all of this will help mark thru the rough patches. trust me, this isn't a time to pansy-ass around. it's gonna hurt like hell, mark's gonna experience more hell.. and he needs ALL and EVERYONE's love to make it thru.
he has all he needs in you and your family. we're jes' loving bystanders....
hugs n stuff..
& go vote if you wanna smile...
B
Dearest Darlene
I cannot add much more than has been said here already. We're still here, holding you, Mark, your family and his carers up in our prayers.
I am also starting to pray for your strength to be restored and increased when he does come home, and for the physios to communicate Mark's exact requirements to you, to give you and Jay confidence.
Love to y'all, as always
Annie and Family
I'm reminded of the movie "What About Bob?" and his baby steps. Mark is truly taking baby steps, and thats so great to hear. "Baby Steps to sit up...Baby Steps to lay down...Baby Steps to pass gas..."
(((Darlene))))
sandy
Mark is so inspiring. I'm amazed by his strength. YOU are inspiring as a mother. Your strength is just incredible. Continuing my prayers. It's just wonderful to hear he is taking steps in the right direction.
My thoughts are with you. Mark is a fighter which is evident via his remarkable strength in pulling through.
Saying all that, I cannot express how I feel for you at the moment, great sorrow, yet you are also full of strength (as mothers are) to be able to come through this.
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