One Statement that Shouldn't be Said to a Grieving Mother

This is not an easy thing to write about, but I feel it needs to be done, despite my discomfort.  I hope that this can be seen as a polite, yet vitally necessary, public service announcement.  I’d like to tell you the one thing that you shouldn’t ever say to a parent who has lost a child, through either miscarriage, stillbirth, or failed adoption.

Now, I know that seeing a person grieving, whatever the cause, is hard.  You want to be of some comfort.  So I understand the good intentions that are there, I really do.  I also understand that, often, there aren’t concrete actions we can do for a person in such circumstances, so all that is left to us are words.  We want these words to be comforting, healing and encouraging.  That said, there is one phrase that is none of those things.  I have heard it myself a time or two.  It is the phrase “you didn’t know the child well or very long” and variations on such wording.

I know that being hurtful is not your impulse and when so many say this phrase, there is no malice intended.  However, that doesn’t detract from the negative emotions this statement, and the sentiment behind it, bring.  I feel I can best explain why this is the case from my own life.

You see, last year, our family thought we were going to adopt twin girls.  We were sent videos and pictures of them.  We were committed to them.  We loved them.  They were already our daughters and the sisters of our two children.  It didn’t matter that we had never seen them in person.  It didn’t matter that we had never held them before.  It didn’t matter that we had only known of their existence for a few months.  They were our girls.

So when we were told, abruptly and unexpectedly, that the government in their country had decided another family was better suited and that furthermore, we could not appeal this decision, we were devastated.  Our children had been taken from us and there was absolutely nothing we could do about it!  When someone says, in effect, the sadness can’t really be that bad because you didn’t really know them or you didn’t physically hold them, etc., it frankly hurts and feels rather demeaning.  I essentially now am put in a position where I have to justify my grief to you.  It doesn’t matter how long or short our time was with them or by what methods we interacted or how much or little we knew about them.  None of those factors influenced our love for them or how much we grieved, and honestly are still grieving, for them.

Let’s put this in a different perspective for a moment here.  You wouldn’t say such a statement to a parent who, let’s say, tragically lost their two-year-old to cancer.  You wouldn’t, not even for a second, think that just because the child was only two, instead of 12, therefore, they shouldn’t be that sad.  You wouldn’t let the length of time they had known and loved their child be a factor in assessing their grief, so why does this happen in the above mentioned situations?

As true as this is for myself, as an adoptive mother, I feel it is compounded many times over for those who have lost a child to miscarriage or stillbirth.  I beg you, do not express such words around them, no matter how kindly you mean them.  For these women, there is no possible way they could have known their child more!  They carried them; their bodies nurtured and sustained that child!  They literally felt that child growing inside them!  There is no connection that is as personal and nothing more painful and poignant when it is severed!  If you are reading this and you have experienced this loss, please don’t let anyone minimize or trivialize your grief!

The loss of a child, no matter how it happens, is probably one of the most horrible events we can endure.  Let’s be mindful of the impact of our words.  Let’s be there for each other and help each other grieve fully and well.

If You Never Feel Like Your Life is Together

My kids and I were riding in my friend’s car.  The two of us were chatting when my 5-year-old daughter, from the backseat, casually asked my friend “are you a grown up?”  My friend, who is about 15 years younger than I, paused for a moment and then said thoughtfully, “yes, but most days I don’t feel like I have things together.”  I chuckled and agreed with her; then my daughter piped up again from the backseat and in a confident tone said, “I’m together.”

When it happened, this cute exchange just made me smile, and I quickly moved on with my busy life.  However, as I took more time to consider, this short and simple conversation caused me to think about that little word which seems to relentlessly pursue us as moms: “together.”  We need to have our stuff together.  We need to be together as a wife, mom, employee and as a person in general.  We usually don’t feel together at all.  When we don’t feel together, we get frustrated with ourselves and this frustration often spills over and impacts the ones we care the most about.  How is it we can let one little word overtake us and cause us to chase such a vague concept?  What on earth does it mean to be “together” anyway?

It sure seems to me that when we use that word, we are basically trying to achieve some elusive, unattainable idea of perfection.  When we talk about feeling (or on most days, not feeling) together, what we really mean is that we’re supposed to do everything well, from every aspect of life, all the time.  We are supposed to have all the laundry done on schedule, cook all the healthy, but also good tasting, meals, keep the house clean, spend lots of quality uninterrupted time with our kids, while also being a wonderful wife and thorough and hardworking employee, as the case may be.  I don’t know about you, but I’m exhausted just writing that, much less trying to accomplish such a list!

I think it’s time to drastically modify our definition of having things together.  Why are we driving ourselves crazy trying to be something that isn’t even possible?  For my part, I’m working on seeing “together” as something much simpler.  My kids were fed, bathed and dressed today.  We had some time to play and, at other points during the day, I did some (but not all) of the housework while they played without me.  We are a homeschooling family, so I focused on the essentials of their schooling for the day.  The basic necessities were done, although perhaps not in the most orderly and smooth fashion.  There are still things that need to be finished, and that’s okay!  Let’s start being realistic with ourselves and each other; life is already hard enough without us putting such burdens on our own shoulders.

Let’s be okay with doing the best we can and stop trying to attain perfection.  Our kids need to see us slow down and not be so consumed with being everything to everyone, all the time.  We need to show them that, yes, we should work hard but also to have realistic expectations of ourselves and others.  We need to learn how to be all right with delayed projects, untidy rooms at times and days when the kids eat boxed macaroni, nuggets and fries.  None of these things mean that we have failed as an adult; they’re just an example of real life.  We’re not meant to be the perfect wife, mother, and employee all the time.  No human being can be perfect at even one of those things.  It is freeing to realize this simple, yet profound, truth.  Yes, absolutely work hard for your family but don’t despair when you don’t get it all right all the time, or even some of the time.  I personally don’t want to be a grandmother who still feels like she’s “not together.”  My daughter, only being 5 and not understanding the nuanced meaning that we have added to that word, viewed being together in a more straightforward, literal way.  It meant, to her, nothing more complicated than just being with family or friends, with no extra pressure.  We have made such a simple word needlessly complicated.  I think we would all do well to take her simple, more easygoing approach to that word and to life in general.  It would probably do us all some good.

Reflections on Grief and its Place in the Christian Life

When I am dealing with or trying to process hard emotions or thoughts, I have found that writing really is an aid to me in this endeavor So when I learned of the death of a dear, believing family friend, and as I have also been thinking of many christian friends who are dealing with their own losses ,my first impulse was to sit down and write. It has been a week; I have found that this has been much harder to write on than I expected. I think that we could all agree that our society in general doesn’t like to talk about or really deal with grieving. But sadly, I think this could be said of many Christians as well. This caused me to think about a lot of questions regarding the place true grief has in a Christian’s life.

How should I, as a Christian, feel about death? How should I see it? What feelings am I allowed to have about it? Is it okay to grieve, even if the person gone was a believer? Does our hope in the resurrection negate or keep us from truly grieving? Are we downplaying the amazing hope of the gospel if we are literally mourning?

I think these are questions we shouldn’t be afraid to think about and discuss with each other. There seems to be this idea that goes something like this. Since we know, as believers in Christ, that He at the end of all things overcomes death and sin, that this understanding should cause us to grieve less. Or at the very least, it should make our grieving less painful. Some might even venture to say that we shouldn’t really be all that sad, since, if the person we lost was a believer, then they are with the Lord and we will see them again in eternity. And besides, they are much happier anyway. Yes, those are absolutely beautiful and wonderful truths and we should cling to them. They should give us hope and an anchor for our souls but I don’t believe, and don’t see from a biblical standpoint, that this disqualifies us from feeling and experiencing our grief. I also don’t see that the comfort we have in Christ puts a time limit on our grief either. In other words, it’s been 6 months, your trust in Christ and the resurrection means you should be moving on by now. I think sometimes, as Christians, if others see us truly mourning, we are afraid that this will somehow dampen our witness for Christ.

As I read through 1 Corinthians 15, I am always struck by the beautiful words of comfort. As believers in the finished work of Christ, we know our weak, decaying bodies will be replaced by glorified ones:

1 Corinthians 15: 42-45, NASB

42 So also is the resurrection of the dead. It is sown a perishable body, it is raised an imperishable body; 43 it is sown in dishonor, it is raised in glory; it is sown in weakness, it is raised in power; 44 it is sown a natural body, it is raised a spiritual body. If there is a natural body, there is also a spiritual body.

This is definitely something we should find joy and comfort in, but when will this happen? Paul tells us a few verses later:

1 Corinthians 15: 51-57 NASB

51 Behold, I tell you a mystery; we will not all sleep, but we will all be changed, 52 in a moment, in the twinkling of an eye, at the last trumpet; for the trumpet will sound, and the dead will be raised imperishable, and we will be changed. 53 For this perishable must put on the imperishable, and this mortal must put on immortality. 54 But when this perishable will have put on the imperishable, and this mortal will have put on immortality, then will come about the saying that is written, “Death is swallowed up in victory. 55 O death, where is your victory? O death, where is your sting?” 56 The sting of death is sin, and the power of sin is the law; 57 but thanks be to God, who gives us the victory through our Lord Jesus Christ.

When will this happen? Later, in the future, whether soon or much later, we don’t know. But death is not yet defeated, at least, in our current experience. Death has taken someone from us and it shouldn’t be this way. Death, for the believer, will ultimately be crushed and we know that for certain. But right now, when we are dealing with the loss of someone we dearly loved, we are not seeing that victory firsthand. We are not yet in eternity with that person and our Lord. We are still missing that person, the sound of their voice, their affection or the ways they could make us laugh. We don’t have those things right now. We are still waiting for that ultimate victory to come and praise God that it will!

But in the meantime, while we wait, we can and should grieve. In fact, Paul in the letter to the church at Rome, acknowledges that mourning will happen. This is after he has spent the first 11 chapters outlining the wonderful and amazing truth of the gospel. Chapter 12 is a sort of “now what?” moment, now that I know all this, what do I do with it? How do I live out this faith with one another? Romans 12:15 (NASB) Paul says “Rejoice with those who rejoice and mourn with those who mourn.”

Notice Paul doesn’t say try and convince your fellow Christians not to mourn or limit your mourning etc. No, he simply says to grieve with those who are hurting. Mourning is not wrong and it does not undermine God and His work. It is a part of this world, that is still in sin. We can grieve while we eagerly await with joy the fulfillment of Christ’s promises. But this joy and eagerness do not need to compete with our grief.

One last example, again from Paul’s letters:

1 Thessalonians 4: 13-18 NASB

13 But we do not want you to be uninformed, brethren, about those who are asleep, so that you will not grieve as do the rest who have no hope. 14 For if we believe that Jesus died and rose again, even so God will bring with Him those who have fallen asleep in Jesus. 15 For this we say to you by the word of the Lord, that we who are alive and remain until the coming of the Lord, will not precede those who have fallen asleep. 16 For the Lord Himself will descend from heaven with a shout, with the voice of the archangel and with the trumpet of God, and the dead in Christ will rise first. 17 Then we who are alive and remain will be caught up together with them in the clouds to meet the Lord in the air, and so we shall always be with the Lord. 18 Therefore comfort one another with these words.

Notice Paul doesn’t say so that you will not grieve. He doesn’t end the sentence there. He qualifies it, saying so that you will not grieve like the rest who have no hope. Yes, we will still grieve, but with hope, but still with grief. One doesn’t negate or exclude the other.

I don’t think, myself included, we know how to mourn and lament anymore. We don’t know how to express and face our sadness. We want to do things to make it go away faster like eating or going on expensive trips etc. We want to rush through our grief as fast as we can. As believers, we shouldn’t be afraid or ashamed to bring our grief to God and to each other. Read the Psalms or Job. Let’s reclaim the rite of grieving, while we also rejoice in the hope of Christ and His resurrection!

A Lesson About Motherhood From Bike Riding

It is so strange sometimes how a simple, everyday family activity will cause me to think about deeper issues of my motherhood experience.  Today, the kids spent a couple hours riding their bikes around the parking lot.  In case anyone is concerned, my husband Luke, who is sighted, directed them and watched out for vehicles.  As I watched them work on their speed and balance, I began to think and as I find I so often do, I am now turning those thoughts into writing.  I hope they may be of some value to you.

I felt a bit of sadness in that I can't be the one to really, safely and effectively, oversee their bike riding attempts.  Vision is a very essential ability to possess in this endeavor, as there is a constant concern about cars or running into poles or parked vehicles.  I wondered if they were missing out because they can only ride their bikes when Luke is able to do this.  It felt unfair to them.
I then began to think about the summer, when our apartment complex pool opens up.  I realized that, as they are both still learning how to swim, I just don't feel safe taking both out to the pool by myself, at the same time. I am going to have to do a rotation, one day with Lexy and the other with Jon.  I felt like they would be missing out, not getting to play together in the water.  I wished I could give them that experience.  I wondered what other things they would not get to do, as fully or in the best ideal, because their mother can't see.

But then, I realized a couple things.  First, that every mother wonders this.  Every mother wonders if there is more she could or should be doing, if she should be doing everything completely different, if she is doing right by her kids, etc.  If it's not sight, then it's meals or screen time or sleep overs or... Well, you get the idea.  This train of thought isn't just only a blind mother thing.

Then, I finally started to really pay attention to what was happening after each child would finish their lap.  When Jon would come back from his, he would hang out with me, while Lexy went with Luke for her turn.  Jon would excitedly tell me what he had done on his turn, how fast he went and what silly games Luke played with him to encourage him to go even faster.  We would play a silly game we came up with, where he would drum on the handle bars and I would try to stop him by pushing his hands off.  He would laugh and ask to keep playing.
When it was Jon's turn, and Lexy was with me, she and I would talk about how excited she was to have a bike.  She would sit in my lap.  She would ring her bike bell and then tell me what "bike was saying."  She asked me if it was going to be sunny tomorrow and if we could have "swing time.", where I push her in the porch swing and we talk and/or pretend.

My lack of vision isn't stopping them and I from having fun experiences together. It may, by necessity, cause those activities to be one thing instead of another, but the experiences of mother and child are still happening.  We are still connecting and growing together.  We are still learning.  Attachment and trust are still being shaped.  This is true no matter what factor you may feel limits you as a mother.  This is such a freeing and beautiful thing to realize.  I am very glad I did and I hope you will also.

Adaptive Technology

I am often asked how do I use this or that piece of technology. So to simplify things, I figured I’d write some about the adaptive technology I use everyday. Now, I am out of the loop on the latest that is out there; when you have to pay for things yourself, it tends to make one less exuberant to always be on top of the trend. So I will talk about what I use and any of my friends feel free to include what they use that I may have overlooked or been unaware of.

Let’s start with the computer and smart phone, as I would say those are the most two common devices I am asked about. For both, the answer is very similar. There are apps that can be downloaded that will convert text on the computer or phone screen into spoken speech. I can then, using various keyboard or gesture commands, interact with what I’m hearing. So, with these awesome programs for which I am very thankful, I can read email, write documents, make spreadsheets, browse the internet or send text messages. As to phones, I sometimes make use of Google’s voice recognition for texting, but I find this usually more annoying than helpful. It often gets words incorrect and I find it is so much easier to just type out the text using my wireless keyboard.

Now let’s take printed material, like mail. Now my usual fix for this is just to ask Luke :) but there are apps that have been developed for phones, that can take a picture of the document, using the phone’s camera and then the picture can be recognized and the text read aloud. It really is quite incredible. I don’t utilize this myself, as honestly, what printed material I do have to work through can be done with Luke’s help just as quickly and easily. But for those who don’t have a sighted family member nearby, these apps are amazing things! As of yet, I’m not familiar with anything that can recognize handwritten text, which given the variety and styles of handwriting makes sense. The technology has come a long way in this area though; I remember using a stand-alone, large and bulky machine that scanned a page at a time and then would read it aloud, after a bit of processing time per page. Then, it was shaved down to the computer and its scanner and now it’s in the phone. That technology is becoming smaller and more accurate and it is exciting.

Now, let’s go to something a bit more mundane, household appliances. There are a few ways to do this. I have a braille labeler, which I can use to type out braille labels that can then be taped on the spot on the screen, buttons or dials etc. Or, I can use the lazier method, and put pieces of tape on the appropriate spot. This is how I have my oven, microwave and washer/drier labeled and it gets the job done. Not everything has to be high tech. :)

I suppose the last one to tackle is driving. I usually get rides from my husband :) or uber. There is also the bus system but that usually takes much longer to get anywhere that way. I am excited to see if self-driving cars will take off, no pun intended there :). While I’m a bit nervous about the concept, it would also mean so much freedom for me and so many others. It would be quite an experience, that’s for sure.

Well, I hope this has given you an interesting look into my world and how I get things done. I am so glad to have been born in the late 20^th century, when so many technological breakthroughs have been happening. That is something I never want to take for granted.

Featured Articles and Podcasts

I am a wife, mother and writer who happens to be completely blind. I started writing because people seemed interested in our rather unique family situation.  My husband is currently the only sighted member; we are raising two blind children, whom we adopted from Eastern Europe.I am expecting our third child in April, my first pregnancy. I have my msw from Florida State University and have worked as a case manager at a homeless shelter, in a group foster home and have taught adaptive technology and directed a summer camp for blind and sighted kids.
I began writing about adoption, parenting and blindness issues on this blog, back in August of 2018.  It took some time and a lot of encouragement from my wonderful husband, but I finally decided to submit some of my writing to other parenting sites. I thought perhaps my perspective would be interesting and informative to some but it was still a huge step to take that leap.

This is a list of articles that have been published outside my blog. I hope you will enjoy reading them and feel free to share any that you think your friends might find interesting and/or amusing. :)

Scary Mommy

I’m a Blind Mom Raising blind Kids, Here’s What I’d Like You to Know


My Blind Daughter was Called Wierd by Another Kid

the Mighty

Learning What it Means to be a Blind Mom


What Does Independence Mean
I'm Blind, Not Deaf

Filter Free Parents

Three Questions Never to Ask a Family that Has Adopted

Her View from Home

The Work of Marriage Matters

For Every Mom

 When Being a Mother Didn't Make Me Feel Happy
Four Years Later: a Letter of Encouragement to My New Mom Self


Fellow Moms, Let's Include Our Kids in the Holiday Work

 Learning to Serve my children

 Inspire More

 A Lesson in Strength From My Ten Year Old Son 
I'm a Blind Mother Parenting Blind Children 
Witnessing Strangers Become Siblings 
Experiencing the Grand Canyon Without Sight 
Adoption Matters: a Story of Four Boys

Podcasts

Revive

Episode: 06/11/2019

Real Talk: All Things Inclusion

 Episode 84 08/23/2019

The Adverse Effect

 Episode 33: A Blind View with Ashley Wayne

A Letter to My Son: Keep Overcoming

Dear son,

I remember when I first met you in that eastern European orphanage.  You couldn’t walk, but rather stumbled and stomped about, and only when a worker held you up by your hands.  Your legs were weak and your steps extremely uncertain.  Your skin was pockmarked, and you were so thin for your age of seven and a half years.

It is not our proudest moment to say this, but your dad and I were nervous.  We had been told that you were blind, just as your sister and I are.  We were familiar and comfortable with blindness; it was already our normal.  However, we were also told you had cerebral palsy, but to what extent, we had no idea.  We honestly didn’t know much about cerebral palsy.  We were told repeatedly by the orphanage staff that your entire left side was weak, and we should avoid things like holding your left hand, for example.  When we visited you at meals, all you ever had was runny soup and a piece of bread.  You didn’t know any English, and our questions to your caregivers about your schooling were met with vague, roundabout answers.  But son, please do not be angry at those who cared for you before you became ours.  They were doing the best they could with what little time, information and resources they had.  We hold no malice towards them, and I hope you won’t either.

 Please believe me when I say that I’m not bringing up any of these things about your past to shame or humiliate you.  On the contrary, I want you to know where you came from so you can all the more easily see how far you’ve come!  I want you to see how truly incredible you are and how your determination has impacted your dad and I.  I want others to learn from your perseverance and strength of will.  You’ve only been home with us for 17 months, but in such a short amount of time, you have overcome in so many areas!  You have astounded so many people, including us.

Keep overcoming your supposed physical limitations.  When you first came home, we wondered if you would be able to climb the stairs, unassisted.  Within two days, your dad had taught you how to use both hands on the railing for support and you were navigating those stairs!  Within a couple weeks, you had learned to scoot around the living room and you reveled in this new-found independence.  When we first took you to physical therapy, it was doubted whether you would ever be able to walk on your own.  You started to use a walker and loved it but we weren’t sure if you would ever be able to be without it.

 Within three months of coming home, you took your first tentative, unassisted steps at grandma’s house!  I wish you could understand how proud of you your dad and I were at that moment and what an incredible feat you were accomplishing! You were so scared but determined, and you let the excitement of getting to ring that musical doorbell at grandma’s front door, motivate you to walk farther and farther on your own. 

 

When you first came home, you were afraid to use your left hand for anything.  Now, you know that God gave you two good, strong hands and you are using them both to play piano.  When you first came home, the heaviest thing you most likely ever lifted in your orphanage life was your shoes.  Now, you are gaining the upper body strength to hold your own growing body weight on one of the uneven bars at your sister’s gymnastics facility.  In your orphanage life, you mostly sat on a couch, with only a TV or radio for amusement.  Now you are running down our hallway, jumping on your trampoline and even jumping some without support!  Your legs continue to grow even stronger; you are now also able to pedal your new adaptive bike!

My son, keep overcoming in your learning.  You have grasped English incredibly well for how short a time you’ve been home with us!  If I were suddenly uprooted and thrown into a place where no one spoke my language or understood anything I said, I’d be a bawling mess!  But not you.  You aren’t afraid to put yourself out there and just talk to people.  I love seeing you at church, the playground or restaurant, talking with whoever will listen.  You have learned so many new concepts since you’ve been with us.  You can read short sentences using embossed print letters and braille as well. You have a knack for phonics and spelling and are grasping the basics of grammar.  You are learning how to add and subtract and are even learning about the geography of United States, this new place that is your home.

You have already become so much more than I think anyone in your home country would have imagined.  Honestly, you have amazed me.  Yes, your dad and I try every day to give you the opportunities, encouragement, and tools to overcome.  We try and challenge you to learn and work as hard as you can.  But if you did not have the desire to overcome, to become more, the drive to push yourself, even when it’s hard, none of what we do would matter.  My son, keep overcoming!  My son, keep teaching us and everyone around you that a person doesn’t have to be defined only by their disability, current circumstances or for that matter, their past.  We are so glad to be a part of your journey of overcoming and can’t wait to see how far the next years take you! Your dad and I are so proud of you.

Your Parents