From Grief

A sweet letter of encouragement to moms who just found out their child has Down Syndrome

Down Syndrome: A letter to a mama who just found out…

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October is Down Syndrome Awareness Month. I hardly knew a thing about Down Syndrome before my daughter came along. I’m sure many people who receive this diagnosis for their child don’t know much about it either.

A sweet letter of encouragement to moms who just found out their child has Down Syndrome

When we received the news 22 weeks into my pregnancy, just days after Christmas, that our daughter had Down Syndrome, I thought my world was imploding. I had no idea what to expect, or what was in store for us.

I was almost 40 and we wanted a baby so very, very much.  There was no way we were going to do anything other than keep her – we decided that the day we found out I was pregnant. This baby was who we were supposed to have, and that’s just how it was meant to be.

But… I. Was. Terrified.

So this is what I would like to say to any woman who has just been told her precious child has Down Syndrome…


Dearest mama, with that sweet baby in your belly…

I can’t pretend I know exactly how you feel.  But I understand a lot of it.

Yesterday you found out that your baby has Down Syndrome.

I know this morning is so hard for you.  It may even be harder than yesterday.

I remember clearly the first morning after we found out.

I woke up after finally falling asleep for a few hours and had about 2 seconds of consciousness before the news I had received the day before hit me all over again, almost like for the first time.

I felt like I had been kicked in the stomach. 

Like the walls were closing in.

Like someone was squeezing my heart in a vice.

And I’m not going to sugarcoat it: I had the same feeling for many mornings after.

But I want to share this with you, for what it is worth:

Each day it hurt a little bit less.

Yes, there were spikes of pain when some incident triggered it. Lots of them.

But overall, it got less and less and less.

On the day of our diagnosis, I said to my husband “What are we going to do?!”

He simply said,

“We are going to LOVE her.

Above all else, she is a BABY. She will eat, sleep, poop, pee, smile, giggle, laugh, and cry – hopefully not too much!

And we will deal with whatever else comes along, as it comes along.

But let’s not guess, or imagine bad things for her. Let’s wait and see.”

And that’s what we did.

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And as the days then weeks then months passed I found that,

almost proportionally,

my pain, which had been overwhelming and consuming and I thought would never ever go away decreased,

while my love and hopes and excitement to meet my Vallyn increased until I simply felt like I could not wait another single moment to hold her in my arms!!!

After Vallyn was born, they laid her on my chest and my first thought was “yes, she does have Down Syndrome – I can see it a little bit”.

But almost before that thought processed in my head another voice inside shouted

YES!  This is MY DAUGHTER and I finally get to see her and hold her and tell her how I love her so much! Thank you, thank you, thank you!” 

And she turned her head and looked straight into my eyes and I couldn’t believe the wave of love and peace that washed over me.

And now I find that every single morning since she was born, without fail,

no matter how tired I am,

instead of feeling that awful pain of those first few months after diagnosis,

I look down into that crib and I see her looking up at me, smiling, and

it feels like the best Christmas morning ever.

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And I can’t believe that on the day the doctor told me my daughter has Down Syndrome, I thought my life was over and would never be good again.

I was so, so very wrong.

Now, sweet mama, I’m not saying everything will be perfect. (Remember, no sugar coating.)

It won’t be – not with ANY kid – Down Syndrome or no Down Syndrome.

I’m saying honestly to you that there will be times that are scary and hard and frustrating.

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But there will also be times when you feel you can take on the world.

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There will be tears of both joy and sorrow.

There will be ups and downs.

There will be so much laughter, and SO MUCH LOVE.

Please don’t feel like you have to give up having dreams for your child.

Because you don’tyou may just have to change them a little.

And they may or may not come true.  So what?!  Make some new ones.

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I never could have dreamed that Vallyn would be as truly amazing as she is.

But she conquered a heart surgery at five weeks old.

 

A sweet letter of encouragement to moms who just found out their child has Down Syndrome

And it took a while, but she’s walking, practically running now.

She has hiked on her own two feet almost a mile around a lake at 9,400 feet.

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She has been in four Scottish Highland Festival parades and brought joy and smiles to those along the way, waving and blowing kisses and causing people to run into the street with their cameras to get her picture as she rides by.

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She got through having the flu, RSV, and pneumonia all at once, and with a smile on her face!

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She has ridden ponies.

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She has been a flowergirl in a wedding.

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She has been to the Grand Canyon.

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She has splashed with unadulterated joy in alpine lakes.

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She has spread her infectious smile to so many people; at the grocery store, doctors offices, and pretty much everywhere we go.

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She goes to preschool, plays with her cousins and friends, has been to both coasts, had multiple photos in a book on physical therapy for children with Down Syndrome, has met Miss Colorado (twice!), met government figures and important researchers, and had the most liked photo ever on the Rocky Mountain National Park Facebook page.

She has fought so hard her entire life – to be strong, to learn, to overcome. Her strength and determination and stubbornness blow me away on a daily basis.

SHE IS MY HERO. 

And she is a wonderful, caring, fun, silly, LOVING big sister.

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And she’s not even three and a half!

I had no idea that day so long ago that she would do all these things.

And I can’t WAIT to see what else she can do!!!

So…dear mama, I don’t know your exact circumstances, thoughts, beliefs, or feelings.

Or exactly what challenges you and your sweet baby will face.

Or what your baby may or may not eventually be able to do.

What I do know is that this is scary and it hurts and it is not what you expected.

And you are allowed to feel all the emotions you are feeling – please don’t believe otherwise and don’t stuff those feelings in.

Get them out of you, as much as you can, so that when that baby gets here, all that’s left is

LOVE and HOPE.

I can tell you that ‘it gets easier’ and you may feel like punching me – I might if I were you.

But please, please don’t give up on this baby. Or yourself. Ever.

I beg you – don’t place limitations on this child you haven’t gotten to meet yet.

Instead, choose to picture this child doing wonderful and amazing things.

Being healthy. Brave. And fighting hard.

And being so full of life, and joy, and LOVE that you will be utterly floored.

Please celebrate the little victories as well as the big ones.

(Often those that seem ‘little’ to others are GIGANTIC to us.)

Know that while your family may not fit into the “typical” or “normal”, what you have will become your normal, and it will just be what it is. (Plus, after Vallyn’s diagnosis a friend said to me “Well, normal is boring anyway!”)

When you feel ready, please reach out to other mamas who are going through what you are.

(I cannot emphasize this enough!)

They will be a source of strength, knowledge, laughter, tears and support.

Please also contact your local Down Syndrome organization. They can help connect you with resources and with other families. (That’s how I found my other mamas!)

I have not forgotten all the times along this path that have been so hard.  And I’m sure there will be more hard times for us in the future.

But I do know where I am now and I am so thankful.

Brave mama, you are so strong.

You can do this.

It may not feel like that now and you may feel beat up, but I know you will survive.

And please know that you are being trusted with, and gifted with, a very special child.

So give that little baby in your tummy a love pat, think good thoughts, and don’t stop dreaming!

Because dreams can come true. Even dreams we didn’t know we had.

With much love and MANY CONGRATULATIONS on your baby,

A mama with a beautiful girl that has Down Syndrome, and who I wouldn’t trade for the world

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Resources on Down Syndrome:

Down Syndrome Pregnancy

Support for Parents Preparing for the Birth of  Child with Down Syndrome

National Down Syndrome Society

National Down Syndrome Congress

Global Down Syndrome Foundation

Rocky Mountain Down Syndrome Association

You can find more of Cassie’s writing at Expectant…

Practical advice for helping friends when their child is critically ill.

Parent to Parent: Helping Families with a Critically Ill Child

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As we wave goodbye to September, we also wave goodbye to the “go gold” ribbon month of Childhood Cancer Awareness. Did you know that in the month of September alone, approximately 14,600 children worldwide were diagnosed with cancer? (St. Baldrick’s Foundation) That’s about 486 kids per day… and 486 families whose lives will never be the same. I know that ours hasn’t.

Serious childhood diseases are devastating, and they do not discriminate. We know that children get sick every day of every month from cancer and many other debilitating diseases. The family of a critically ill child may pull back, isolating themselves physically and socially, but there are ways that family and friends can show support. What if that child is your own? How can you ask for help?

Practical advice for helping friends when their child is critically ill.

As a parent of a childhood cancer survivor, what I’d like to say is that friends and family will be supportive and understanding. That might be the case, but not always. No one can truly understand what it’s like to be in the whirlwind of a childhood disease. It’s living, intensified, and not everyone understands or sometimes cares to. Here are a few hard-earned, parent-to-parent tips:

Not everyone will understand, nor should you expect them to. Your friends will continue to have lives that revolve around politics, work squabbles, half-yearly sales, and soccer tournaments. Your friends might post trivial things to Facebook or Instagram at the exact moment you feel your life is caving in. No one can truly understand the journey unless he or she has set foot on the path, so be gentle with people. I wouldn’t wish parenting a child with a serious illness on my worst enemy.

Set limits. Think hard about the people you let into the sacred space of your life. Limit time with friends who attract drama or crisis of their own. The same goes for those who swim in an ocean of negativity. This is a hard thing to do. I know because I’ve been there. In survival and recovery modes, try to surround yourself and your family with kind, compassionate, unassuming people. That’s a tall order, but one you will appreciate later. Be attentive to your child’s needs. Even a room full of kind, compassionate, unassuming helpers can be too much at times. Be a champion for your child. Sometimes that means limiting visitors. Ask your child if he or she wants visitors before inviting. Likewise, parents can become overwhelmed. Take a social break if you need it. Or take a mental break. Ask your loved ones to call before visiting to see if it’s a good time or not. People shouldn’t just drop by unannounced. If they do, have a loving conversation: “You know we love to see you, Aunt Phyllis. We want to make sure your visits are special. Please give a call next time so that we can pick a time that’s best for you and for Timmy.” Make sure to let friends and family know that sometimes it’s a day-to-day thing. Kids can unexpectedly spike a fever or suddenly feel ill. Ask loved ones for their patience. Put scheduled visits on a master calendar.

If you need it, ask for help. Generally speaking, people want to help and aren’t sure how. Speak up if someone asks what they can do for you and you can think of something specific. It might be picking up a sibling from school or bringing a hot meal or coming by the hospital to watch your child so you can take a shower. You might consider asking someone to help you build a CaringBridge site or a Facebook page. Post any needs or “wish list” items. Here are some ideas:

  • Gift cards: Starbucks, Subway, Amazon, gas, supermarket
  • Gift card to a nearby restaurant that delivers
  • Hot meals
  • Babysitting for siblings (for a parent date night or a “short break” respite)
  • Small household tasks: a load of laundry, dishes, shopping, taking out the trash
  • Help with the yard: mowing, edging, weeding, watering
  • Caring for pets: walking the family dog, feeding and watering
  • Movies: funny or upbeat titles
  • Books (for the child and parent): age appropriate and interest-based
  • Puzzles, games, coloring books and crayons

Drop expectations, appreciate what comes. Like many things, this might be easier said than done. However, letting go of expectations will save you grief in the end. We get into trouble when we expect people to act a certain way or to do a certain something. It’s a better plan to expect the unexpected and appreciate what does come your way. You have little control over what others do or do not do. We can’t control others, but we can control our response to what happens (or what doesn’t). Take on an attitude of gratitude and assume the best of people. Assume that people are doing the best they can with what they have. Assume that people would come to visit if they could.

Know early that you may lose friends. To be blunt: some folks don’t know how to handle sickness or grief, so they disappear. It happens. These friends and family members may come back when things settle down, and when that happens, you can decide if their love and/or friendship is still of value to you.

You will also gain new friends, if you are open to the experience. If you are having trouble connecting, look into a parents’ group that either meets in-person or online. One of my greatest joys was becoming a part of online support communities. You might also meet parents from your child’s doctor or specialist, at the hospital, or from living in a facility like the Ronald McDonald House. Exchange information, get the digits of your new pals, reach out to them, and keep it positive. Parents and their children can support one another!

Be respectful. In a perfect world we wouldn’t need a reminder, but parenting a child with a serious illness is far from a perfect world. Do your best to extend basic courtesy to others. If you must, walk away. Count to ten or twenty or one hundred and twenty. I found it helpful to keep a gratitude journal, a small thing I could keep in my purse to jot down notes about things that made me or my child happy. Looking back, we gave thanks for some funny things. I still smile today thinking about quality toilet paper and the first flowers of spring. Extend your gratitude outward and others will feel it.


Parenting a sick ill child is challenging. We can feel isolated and alone at the very time we need kindness and connection. Whether you are the parent of a sick child or want to support a family in need, the very best thing you can do is to keep an open heart. Ask for help if you need it and offer help to others if you are able. ♥

Such beautiful lessons about grace and peace in the midst of childhood cancer.

Childhood Cancer: Lessons from Our First Year

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Such beautiful lessons about grace and peace in the midst of childhood cancer.Berkleigh was diagnosed with Stage IV Neuroblastoma on September 15, 2014. It’s been one long year. In that time, we have done six rounds of chemotherapy, a bone marrow transplant, 5 or 6 surgeries, countless biopsies, scans and radiation.

We finished our last antibody treatment on Friday. We even had a party.

Having just walked through the Red Sea, I am overcome with emotions.

And all these thoughts are jumbled up and drenched in prayer, tears and stale coffee. Forgive me, if I ramble.

I used to read about the exodus from Egypt…and think “those Israelites! They saw God’s miracles. They walked on dry land through giant walls of water…get to the other side and doubt God? Seriously?”

I am eating those words…because this morning at 4 am, Berkleigh spiked a fever and we are right back where we started in the ER. Admitted. Again.

James 1: 2 - 6While I know that God is healing my daughter, I have caught myself more times than I care to admit within the last month doubting our financial recovery, complaining about this time in the desert and the manna that He is providing.

I am an Isaelite! Good grief!

I wonder how long I will be waiting for the other shoe to drop. I wonder how long “my leg hurts” or a high fever will punch me in the stomach and take my breath away.

So when I feel like I can’t possibly take anymore, I remember the key to JOY:

I look to Jesus…J

I look to Others….O

Then I consider Yours truly…Y

One of the hardest things about cancer is managing this sequence. Keeping Jesus first isn’t hard. We have nothing but time to pray and so much to say.

Serving others becomes the biggest challenge. Loving, wonderful people have a tendency to put “cancer moms” first. It is a huge blessing. But it always keeps us in the position of being served. And sometimes holds us hostage to the emotions that come with being a cancer mom.

Honestly, we are unreliable. We have a ton on our plate. But, allowing us to hold your baby at a birthday party, or do the dishes, helps us to have a glimpse of just being another mom. Being ourselves.

And any distraction from dwelling in this moment and focusing on ourselves brings us closer to joy.

When your child has cancer, it is easy to get caught up in “to do” lists, trying to keep things normal for brothers and sisters, and just finishing the treatments at hand. It is easy to worry. It is easy to give into fear.
I am so blessed to have the Word to redirect me. I am humbly admitting it to you. I know with all my being that the God, who has healed my baby, CARES about all the schedule adjustments, the mini medical issues, financial concerns, relationships, siblings and anything else that would creep in and steal my peace.

Berkleigh's JourneyI am committing to rest and enjoy this season of manna in the desert – because there are miracles here too. And being with God in the desert is amazing in comparison to life in a “perfect world” without Him.

I want to be in the presence of the living God, content and humble.

Kneeling next to her bed this morning, I am choosing thankfulness – God, you are so good!

I am choosing faith…just living it.

I am choosing peace…resting in the arms of a loving God who has shown me faithfulness in abundance.

Kyler, my 14 year old, once explained to Taryn, who is six, that God is a healer. And he WOULD heal Berkleigh. He could do that through the doctors, through a miracle, or by taking her to heaven. Our job was to be courageous and be “ok” with however God chose to do that.

I can’t put my own limitations on a limitless, all-powerful God. God covers all of this. Completely.


Stacie Slaughter Griggs

Guest post written by:

Stacie Slaughter Griggs

 

 

The voice of a child calls us back to what matters most.

Life Lesson Learned Through Kids: Miscarriage

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Almost 5 months after my miscarriage, my children continue to discuss the subject of the baby brother that passed away. Their discussion usually emerges when there’s chatter about who the oldest is (and therefore, the boss) and who the youngest is (and therefore, nobody’s boss) and each time, without fail, they’ll include Danyal at the bottom of the sibling hierarchy.

The voice of a child calls us back to what matters most.

Danyal – the Arabic version of the Biblical name Daniel – was delivered 16 weeks into my pregnancy. He weighed a little over 1 ounce and fit into the palm of my hand. There was no heartbeat detected at our latest appointment and since I saw little hands, feet, and limbs frozen on the  ultrasound screen, my husband and I decided to respect his miraculous growth and prepare for a proper burial.

My children visited me at the hospital after the induction and varied between being a little creeped out to just plain enthralled with this tiny human being that just recently had been cuddled inside their mother’s (very comfortable) tummy. Fully shaped miniscule features invited us to imagine what he would have looked like had the pregnancy progressed.

My 6 year old had a number of hidden concerns on the concept of death. He worried that he wouldn’t know anyone the next world (akin to a new classroom or a new school) or how long he would have to wait for someone else to join him in Heaven if he died first. My 4 year old daughter, on the other hand, had an itemized list of people she wished to play with (including a set great-grandmothers who are supposed to be just as sweet, if not sweeter, than her living  grandmothers). Her whimsical desires included eating a mountain made of ice cream and exploring with a handy sidekick named Boots (thank you for sharing, Dora).

Their innocence generated more conversations. Their resilience to a situation as stark as death and positive energy in the light of an often hushed and ignored experience centered my healing process. As they radiated confidence, acceptance, and contentment we, too, shed many clouds of anxiety, anguish, and sorrow. Our broken hearts regenerated with pronounced vitality.


“We have another brother, but he died.”

“My mommy had a baby in her tummy and he lives in Heaven.”

“Does he have diapers his size?”

The idea that there may be no need for diapers in Heaven caused in eruption of gleeful, roll-on-the-floor laughter.

Friends and neighbors offered their help and support, while sharing personal experiences of losing a child, during pregnancy or after. They mentioned numerous women they knew who had tread the same agonizing path of trying to channel grief and find acceptance to an abrupt end. The number of little souls that are remembered, mostly in private, seemed to grow with each conversation, and learned that the finality of a child’s death had visited almost every person I encountered.

Somehow, a child’s questioning can shift the perspective about something that we as a society have neglected. This negligence makes it more difficult to allow room for grief to run a natural path, and a lack of conversation makes seeking solace a difficult path.

Some eyebrows will rise and an awkward pause may interrupt a casual conversation – but continuing to acknowledge the existence of someone we cherish and love who left us sooner than expected may promote another’s understanding of just how often miscarriages occur and how possible it can be for both children and adults to move forward without forgetting.


Resources:

Misconceptions about Miscarriage

Pregnancy Complications

If you love someone with depression, read this.

A Letter to My Daughter: On Depression and Growing Up

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I wrote this after my daughter faced a second bout of depression. It broke my heart when she was first diagnosed, yet gave me a sense of power to call it by name. She identified her foe at an earlier age than I had. Determined to help her not become depression, I wrote my thoughts down. She’s become an insightful, intuitive and compassionate young adult embracing all of who she is in ways I can only dream. With her permission and intent to support others, this is shared today.

If you love someone with depression, read this.


You cried the first time I left you. I knew what you didn’t — I’d return. I held your little body as you wretched the first time. Your tiny voice begged, “No, mommy, no.” I couldn’t stop the upheaval. My hands held you, my heart broke. It would pass, I knew. But only after you went through it.

The summer before kindergarten you begged, “Please, let’s homeschool. I don’t want to go all day.” I wrestled with the decision, yet told you it’d be fine. We chose an intimate school with shorter hours. The pre-K teacher said you were ready.

I saw a flash of something. An anxious, sensitive part wary of transitions, scared of new things, and afraid to be less than the best. I stood by you, stayed at school until you settled and surrounded you with trustworthy nurturing adults. You flourished.

When you wanted to dance, fears of something new and not-being-good overwhelmed you. I encouraged and maybe pushed a little the first class. I sat outside the studio door. Uncomfortable with first tries, who could blame you? That fear, that hesitancy, keeps some from ever trying. Soon, you no longer walked or ran. Twirls, leaps and jetes (accent over the second “e”) propelled your steps. At 7, you said, “No matter what, momma, I have to dance.”

In spite of hesitancies, you’re driven. First steps can stop you, or slow you down. You want to be sure. The thing is, we’re not always sure. Sometimes, the only way to know is to try.

Do you remember your first Nutcracker audition? You went back and forth. You wanted to do it, you didn’t want to do it. I strongly encouraged you to try. I’d a feeling you’d love the stage. (The audition environment was safe, nurturing and fun with adults you knew and loved. Puhlease, I’m the furtherst thing from a dance mom.)

Finally, I said, “If you get a part, you don’t have to take it.” Freedom and control, the back door and safety net now visible. You could say no. But, to have the choice of no, you stepped outside your comfrot zone and tried. You made it, chose to be a dancing mouse. More auditions followed and you loved every moment.

It’s hard being a mom. I constantly weigh encouragement vs. pushing. Sometimes, my heart knows you should try something and I give a bigger “encouragement”. I usually read your signals and give you room and respect to dig in your heels. I listen with my heart. I help find back doors so you can walk through the front ones.

Remember kindergarten – the place you didn’t want to go? You loved it so hard you didn’t want to transition to first grade. There were tears. There was clinging. Your kindergarten teacher saved the day and you went early to your old classroom. You helped set up and she walked you to first grade. It was magic. My confidant first grader found her way through a difficult time. She came in through the back door.

Transitions are challenging. They feel so abrupt. I swear, transitioning from wake to sleep takes a toll on your little body. I know. It does the same for me. I learned to give you the right amount of “heads-up.” Too much and anxiety ate away. Too litte and it’s becomes so big, jarring and overwhelming. Just enough and it’s smoother sailing.

A nurturing guide helped you assimilate well into Montessori elementary school. But, mid-elementary, your world fell apart. Your lifelong furry companion, Kadi, died. Your heart broke. A new best friend moved into town and moved out just as fast. It was all too much for your big heart.

The part of you that came alive when you danced, the part that gets lost in a book or movie, the part that sees beauty in the ordinary is the same part that shattered when Kadi died and a kindred sister friend moved. You lost the beauty, the silver linings, the sparkles and threw yourself into dance.

Your head in my lap, you cried. You wanted to be like everyone else. Happy. I found notes saying “I want to die.” I learned you didn’t want to die. You wanted everything to stop — a break from the heaviness of unhappiness. It drowned.

I looked for a way to make it better. There are no chapters in general parenting books about such notes from 8-year-olds. My strong hands held you as I shook within. They weren’t enough. You felt alone. The absolute worst. Feeling alone in a full family.

We searched for an answer, a way through the darkness. You went to where I’d found help before — a therapist, a gentle psychiatrist. We gave the unhappiness, the heaviness, a name. We boldly and unashamedly called it aloud. Depression. This, alone, brought immense relief. You weren’t crazy, a misfit, or broken. You were depressed.

Most people bounce back from the curve balls and sadness life throws their way. People with depression fall harder, deeper and longer. They often need help bouncing back. A life line, so to speak.

Depression isn’t evil. It’s not a curse. Not anyone’s fault. It just is. I’m sorry it is, but I can’t change that. I’m sorry there are tornadoes, cancer and scary ghost stories. My sorrow won’t make them disappear. (How I wish it would.) They don’t go away if we ignore them or hate them.

Naming took some of its power and gave you back some control. Some nights, you sleep through a thunderstorm. Some, you lay unafraid and listening, knowing storms won’t hurt you safe and warm inside. And, sometimes, you crawl into bed with another who makes you feel safe until it blows over. Maybe, you turn on the light. When the storm of depression hit so big, we found shelter in good therapists and helpers.

Your beautiful curly hair (even though it’s made you cry and you’ve spent hours straightening it) is your Grandfather’s; your brown eyes and fine features are your Grandma’s. Your overbite and the sparkle in your dancing eyes from another Grandma. Your stubbornness? Straight from your dad and his dad. (Okay, maybe a little from me, too.) You ability to tune into animals? It’s easily inherited from many in our family. Your flat chest? I’ll claim that one — sigh, sorry. A risk for heart disease? Cancer? High blood pressure? All come from family members. Unfortunately, depression came from me, maybe others, too. We can’t change these things. We can face them and accept them. We learn to deal with them and when to get help. Together.

When you don’t feel well, everything goes wrong and homework sucks; when it’s hard, overwhelming and you feel you’re under a pile of wet wool laundry with no way out; depression can strike. It’s your kryptonite. Your weakness. Like a horse with an old ache from an injured leg – overwork that horse and the stress first appears in a limp or stumble in that leg. You’ll always have to remember that leg and be aware. You’ll watch for red-flags before the limp is is too bad. You’ll learn what builds it up and what makes it wobble. You’ll take care of yourself. You’ll keep the kryptonite at bay. I’ll help. Others will, too.

Do you remember the magic glass story? It was only half-full. A thirsty little child refused to drink it. It wouldn’t completely quench the thirst, there wasn’t enough. Another child came along happy to drink what was there. The second child learned the glass was magic. As soon as the child drank the water, it magically refilled.

Sometimes we need help to see the glass is half-full. Maybe it’s a chemical thing in the brain changing your perspective on the glass. Medicine or talking with a professional may help. The first step is realizing your perspective — how you see the glass. Taking care of yourself — make sure you exercise, eat well, journal, etc. may help the perspective and change the focus on the glass. You’ll learn what works for you.

Your curly hair isn’t your fault (unless you pay big bucks for a bad perm). You didn’t choose your brown eyes. Depression isn’t your fault, either. You’ve a separate life from me, yet we share many characteristics. Those brown eyes and depression remain. Individually yours and mine.

We also share people who face it with us. They’re not afraid to call it by name. As you grow up, you’ll still need them. My heart isn’t getting smaller. There’s plenty of room to love you all the way through. I’m by your side. I’m not afraid of your curly hair or your depression. (Ok, sometimes on grouchy running-late mornings, your curly bed hair is more than slightly intimidating.)

Growing up has ups and downs, emotions and hormones on every turn. You’ll soon distinguish depression from life’s normal growing pains. It can be hard, I won’t lie. Sometimes you’ll need help. Keep talking, keep hugging. Keep showing up. You’ll get through it.

Throughout your day, plant little things to make you happy. A little time for you to work out, read, watch netflix, walk on the beach, play with a dog or be with a friend.

Never forget, I am here. I can listen, lend a strong supportive hand and encourage (even push a little). You’re doing well on a difficult path. It’s getting better. Depression isn’t a punishment or weakness. It’s not caused by you or anyone else. It just is – like a thunderstorm that hits the farm up the road but leaves another one high and dry a mile away. Some struggle with it. Others don’t.

I hope for you sunshine, rainbows, and gentle ponies. But, I know there will be rain, clouds, and bumps along the way. You’re surrounded by those who love you and will lift you up. You will make it through. Coming out the other side may not be exactly how you envisioned it, but you will come through –breath by breath and day by day.

If you learn anything from me, I hope you learn to be gentle with yourself. Seek others when needed. Turn away shame. Love yourself, my child. You’re sensitive, compassionate and loving. You’re the perfect you.

For everyone facing Father's Day without their Dad

My First Father’s Day Without Dad

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Father’s Day is approaching, and it’s a first for me.  The first one without my dad.  I know many of you reading this are in the same boat due to many different storms.  Mine was a surprise attack.  Literally.  A heart attack that no one suspected.  It swooped in, off the radar, no alert or warning, and left me floating here in this sea of life without the man who for many years redirected my sails when they got off course.

For everyone facing Father's Day without their Dad

I’m a teacher, and encountering the fatherless is a daily occurrence for me.  Recently one of my students wrote of his experience adrift in the Dadless Sea.  He told of floating along making frequent stops on islands where he would meet a new man, hoping he and his mom could drop anchor and stay, only to find out that they had only tied temporarily to that shore.  He painted an image he had seen many times as a younger kid of other boys walking to their cars after a football game, dads holding their sweaty shoulder pads, laughing and joking together as they relived the victories and defeats of the game.  There was a visceral yearning coursing through the veins of his essay.  I mourned his loss as I mourned my own.

A couple of days ago my oldest daughter and I were talking about my dad as we drove down the highway to pick up the younger one from cheerleading camp.  I spoke of Father’s Day and wishing there was a way to ship a gift across space and time to heaven.  I chuckled at the thought of all these heavenly dads and granddads receiving ties, coffee mugs, and fishing gear from their earthly kids.  You know how the owls deliver mail in the Harry Potter books?  Well, in my mind’s eye, I could envision doves swooping in on the heavenly host, dropping the gifts, little parachutes deploying, and all those clichéd items finding their recipients.  We laughed.

But in all seriousness, I told her that I was sorry that she had only had a grandfather for a short time in her life.  I think back to hammering, sanding, and sawing in the garage, memories I built with my granddad. I’m sorry she won’t have more of those moments.

This is what she says in response. “Be that as it may, Mom, things are still pretty good.”

And, you know?  She’s right.   This boat I’m floating in isn’t leaky; it was built to withstand the storms.  I had a great sailing instructor.  And, these are some friendly waters.

Thanks to my daughter, I’ve now got a killer idea for a Father’s Day present, or at least, a pretty darn good way to honor Dad.  While I’ve still got time on earth here with my family, we’re not running from life’s harsh realities. We’re not hunkering down in a storm shelter, hands over our heads, ducking the forces of nature. Instead, we’re thanking God for all the grace we’re given and choosing to see and share the good.

My dad had the foresight to write his own obituary about 10 years before his actual death, so we weren’t saddled with that daunting task.  In it, he eschewed the notion of head stones, grave markers, and things of that ilk.  They were fine for others, just not for him.  He hoped that we, his survivors, would be the markers. Listening to the words of my daughter, I think I get it.

So for all of you who are sailing towards this Father’s Day without a dad, my hope for you is that you’re able to say, “Be that as it may, things are still pretty good.”  And for all of you dad-type guys out there, look for the kid walking off the football field with his mom.  Walk over to him, punch him in the shoulder, carry his sweaty shoulder pads and say, “Good game, son.

Vulnerability II and Friendship

Vulnerability (Part II) & Friendship

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Woman Hiding Face with Mask

As I’ve been reflecting on what it means to be vulnerable, I’m realizing -for me- it keeps coming back to friendship and allowing myself (for better or worse) to be connected to other people. Oh – and it’s really hard!

One of the areas where I’ve been focusing on being strong, being an island (therefore closing others out) is with my health. About a year ago I was diagnosed with Multiple Sclerosis (although I was being followed for “lesions consistent with a demyelinizing disease” for a year and a half before that), and, at least in my mind, I was amazing. Don’t get me wrong, I had my moments where I broke down in private, but I was able to talk about it, laugh in the face of the disease, be objective, not have an existential crisis about it, take life a day at a time, while recognizing that the future might hold challenges, etc. Considering that the year had brought me: a layoff from a job that I took pride in, a milestone birthday, and the loss of my engagement ring, I thought I was doing a pretty good job of holding it together.

Having struggled with depression for decades, I was particularly impressed that I didn’t succumb to an episode in the face of all of this. I knew what depression was – it was breaking down, non-stop crying, with the belief that things would never get better. Again, I had my moments, but I was impressed with my relative non-breakdown-ness.

It was about the time I started allowing myself to connect with friends again, that I realized how not okay I was. As Beth Woolsey has written about Depression coming in disguise, I didn’t realize that I thought I was okay because I had just turned everything off and given up (except for bouts of extreme pissyness). I floundered with trying to start a business – one that I really cared about. I didn’t reach out to friends. I didn’t “suffer” from my disease because I just preemptively decided that I just couldn’t do things and participate in things because if it. No big deal, I just “can’t do that” (go on walks, go out, do things that require endurance, do yoga classes, etc.)

Being vulnerable gets real
No problem, right?

Oddly enough, breaking out of this “I’m fine” shell has been painful, like the pins and needles you feel after a limb has fallen asleep. My husband is doing a biking fundraiser to help raise money for MS research (you can learn more here!), so I’ve been putting my story out there. Even though I’m trying to be more open, I still falter for asking for help when *I* need it (see, the fundraising is for *him*, not me, so it’s easier than just telling people my story for my own sake). For example, I’ve been going out to more social events where people stand around a lot. When it gets physically painful for me, I just suck it up, look for a chair (and feel so embarrassed when I’m the only one sitting), or leave because I don’t want to be “that person” who needs a special accommodation.

Recently, though, I made a huge stride in that area. My friend (the same one who started my whole thought process about vulnerability) put out an invitation to a concert at a nightclub. I expressed interest without thinking about the venue, then tried to pull out once I realized that it there was no seating, it was just standing. Instead of accepting my withdrawal, she did some research on the venue and found out how to ask for seating. Within 2 phone calls, they had a plan to reserve a table for us in the mezzanine. (You know those cool “Reserved for” tables that they have in nightclubs?)

Of course, I was feeling grateful for my friends’ push and great attitude about not being down on the floor close to the stage (for which I felt guilty), when she said, “I’m so glad we have this table!” I was too busy feeling guilty to realize that the accommodation that the club made might actually be a benefit! The concert was amazing, we walked around downtown Cambridge in perfect Spring weather, and a barrier was dismantled for me. Concerts at night clubs are now something that is within my range of possible. Only now, I realize that sharing my vulnerability is what led to this breakthrough.

I still have no answer for how to positively reframe the look of disappointment on my son’s face when I try to explain to him that I’m too tired to play with him or take him to the park or why the Mother’s Day trip to the Children’s Museum made me cry because I was so tired that I was nauseated but felt too guilty not to go, but I am working on beating myself up less about it.

And look at me go! I can say it. My Mother’s Day was not “fine.” It was physically exhausting and emotionally painful. I love my son and husband, and they showered me with love, cards, and homemade gifts, but I still struggled. But you know the thing that made the biggest difference? Being kind to myself. Don’t get me wrong, being kind to myself is right up there with going to the dentist for me, but even I have to acknowledge that I experience the most amazing change in attitude when I talk to myself and treat myself as I would a friend (aka nicely), rather than my usual mode of dealing with myself (not so much).

So, my work at vulnerability is definitely being made easier by friends who are near me and help; however, long distance friendships can require some different strategies/ skills. Luckily, I also have amazing friends who live in different parts of the country. We’ve developed some pretty cool habits that make it so much easier to share when things aren’t going well and feel more clued-in about day-to-day details of each other’s lives. (More about that next time). Have you had any experiences where you’ve experienced amazing support from your friends?

Woman in Mask Image courtesy of graur codrin at FreeDigitalPhotos.net

Feeling Exhausted?

Feeling Exhausted? Try These Quick Pick-Me-Ups

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Feeling Exhausted?

I am exhausted.

Exhausted = completely worn out, having trouble thinking and concentrating, body and soul tired, running on empty.

 

I don’t get this way often, but it has been a particularly grueling month or so. A kidney infection that won’t go away (since August). A trip for Davis and I to say goodbye to my Granny while she was still somewhat lucid (Alzhiemer’s). A few days in the hospital for a migraine that is now on week 5. Launching a new blog (from a hospital bed, even). Bidding for a large project for my small business. A mad dash to the airport (with kids in tow) to make it to New Orleans before my Granny died. Her death. Helping my kids process their grief. Winning and staffing that new project. Two memorial services. Managing my own grief.

Those are just the highlights, because I still had all the normal stuff going on – managing a household, parenting, and running a small business. Like I said – I am exhausted.

This litany isn’t meant to be whiny or a pity party – sometimes life just piles on.

I know I’m not the only person who has ever felt worn out like this. You’ve probably been there too.  A major project at work that is behind schedule, meaning late nights. The flu bug that slowly works its way through your entire family. The hot water heater that just went out or the roof that needs replacing. A tween who is just starting all those hormone surges. A best friend who is in the middle of an emotionally difficult divorce. A kid with 3 missing assignments – in ONE class. You know how it feels to be exhausted, too.

The specifics really don’t matter. The reality is that life can leave you worn out from time to time. Once you realize what’s going on, it’s time to do something about it. None of us like feeling beat down – so pick yourself up! Here’s what works for me:

  1. Be gentle with yourself. Recognize that this is a tender time. Don’t over-extend yourself. Say no. Make time to do the things that bring you joy and energy. Give yourself a break if something slips. Temporarily avoid people and situations that make you angry or upset.
  2. Hit the gym. Don’t overdo it. Raise your heart rate. Limber up those tense muscles. Release those endorphins that make you feel good.
  3. Protect your sleep. You know how much sleep you need to feel refreshed. Plan for it. Use good sleep hygiene practices (like no TV watching in bed, keep the room cool, etc… My sleep hygiene is awful and so are my sleeping patterns). Get your circadian rhythms back in sync – turn down lights a few hours before bedtime and open your curtains to let the sunlight help wake you in the morning.
  4. Stop Feeling ExhaustedEat. Put some nutrients in your body. When stressed and pushed for time, it’s easy to eat fast food. Stop! Go to the store and get some fresh veggies and lean proteins. (My favorites are zucchini, carrots, roasted cauliflower, beets or brussel sprouts, shrimp, roasted chicken, and grilled skirt steak.) Don’t make it complicated, just get some good vitamins and minerals into your system. You can even add a V8 or a nutrition drink like Boost or Ensure.
  5. Increase your H2O intake. Being low on water can make you feel run down. This is a no-brainer. Pick up the pace of your water intake. Make sure you aren’t unnecessarily adding to that exhausted feeling.
  6. Laugh. Call a friend your funniest friend. Scour YouTube for the most ridiculous blooper reel.  Look at those stupid cat videos that make you giggle. Whatever it takes, do that one thing that is sure to lighten your mood, to make you laugh and put a smile on your face. Laughter is a great stress-reliever and mood elevator – take advantage of it!
  7. Get social. Call a friend to talk. Eek out a little extra time at lunch to eat with a trusted co-worker. Plan a couple’s date night. Being social can be a means for emotional support or just a well-deserved break.
  8. Plan a break. For whatever reason, your current routine has you run down and exhausted. Plan ahead for a time you can take some time off. It may be a short shopping trip on your own or a long vacation with your spouse. Plan something you can do this week, plan something you can do this month, and plan a longer break that you can look forward to in the future.
  9. Get outside. Sun. Fresh Air. It doesn’t take much time in the sun to boost your vitamin D levels. Low levels of vitamins D and B can make you feel fatigued. You’re totally crammed for time, so combine your outside, sunshine, time with a quick walk or a easy meditation.
  10. Yoga. Meditation. A regular yoga or meditation practice can lower blood pressure, lower cortisol levels (cortisol is a stress hormone), soothe tense muscles, improve functioning for people with chronic health conditions. Even if you’ve never tried yoga or meditation – check it out. Find a local class or a YouTube video or App that’s geared for beginners.

None of this is rocket science, but in the middle of major stress, simple reminders can be helpful. Making easy changes like this can lighten the load when you feel exhausted. Hopefully your recognition that you are exhausted, along with the help of a good friend and some simple self-care measures will have you back to normal quickly. If making simple changes, like these, isn’t helping, think about whether you may need a doctor’s help to feel better.

Exhaustion can be a sign of physical illness or depression,  sometimes it can be hard to distinguish between them. Your doctor can help. Go get a check up. If you have feelings of sadness that last more than a few days and interfere with your ability to manage everyday tasks, especially sadness that interferes with sleep, eating, concentrating, physical aches & pains or are associated with feelings of hopelessness, talk to your doctor and ask for help.

Resources for Stress Relief:

30 Guide to Getting Started with Yoga – Men’s Health

Yoga Basics – REI

13 Foods that Fight Stress – Prevention Magazine

12 Simple Tips to Improve Your Sleep – Harvard Health

Resources for Depression:

What is Depression? National Institute of Mental Health

Depression Overview – National Alliance on Mental Illness

Helping Kids Cope with Death

Helping Kids Cope with Death

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Helping Kids Cope with DeathOur family is facing a new parenting challenge – how to talk with our kids about the death of a loved one. This isn’t an uncommon parenting issue, rather just one we haven’t dealt with directly before now.

In the last few months my 88-year-old grandmother’s health has declined precipitously. In the process, my kids have learned a lot about Alzheimer’s, care taking, hospice, and the dying process.

Our general parenting philosophy is based in honesty, compassion and taking cues from our kids. And like most sensitive topics, we have turned to others and to experts to figure out how to talk with our kids about death. We’ve also done a lot of reading lately. I’m certain we haven’t gotten everything right, but so far this is what’s working for our family:

Take advantage of unemotional opportunities to talk about death.

Fortunately, we’ve been doing this since the boys were little and it has looked different at different ages. Mainly we’ve been answering questions that the boys have:

  • Why did the leaf fall off the tree?
  • Did you do something to make that plant die?
  • What happens to the dead bug once it goes in the trash?
  • What happens to my lizard after we bury it?
  • Will I see our dog again in heaven?

So that last question was fairly emotional for Davis and Patrick. By the time they lost their dog, they already knew about the biological processes of death. They didn’t know all the specifics, but they understood that life had ceased, their dog wasn’t coming back to them and their dog’s remains would return to the earth and decompose. They didn’t have to worry about learning those things or go through the doubt about death being final. They had learned those things earlier in unemotional ways, leaving them more capacity to deal with the emotions of losing their dog.

Be developmentally appropriate.

Through my reading, I’ve learned that there are 4 main concepts kids need to learn about death:

  1. Death is permanent.
  2. In death, all biologic functioning stops.
  3. Everything and everyone dies.
  4. What causes death?

What kids understand about each, should dictate how you approach death. My kids seem to understand all four of these concepts, but are still mainly occupied with concrete notions of death. They understand why Granny is dying and have not been scared that Rob and I shall die in the near future.

The boys have asked some more abstract questions like – what will happen to her, will she go to heaven, will they see her in heaven someday, does heaven really exist and what is it like? The more existential questions about the meaning of life and having purpose in the life you lead are just beyond their current concerns, so we haven’t broached these.

Be honest.

When we saw my grandmother at Christmas last year, it was clear that her dementia was progressing and her body was beginning to fail her. There was no hiding that from the boys. After we left and went back home, it would have been easy to not mention her progressively worsening health. Her death was happening at a distance and the boys didn’t have to face it daily.

But hiding her failing health and deteriorating mental condition would do nothing to prepare Davis and Patrick for her death. They have loved their great-grandmother fiercely for their entire lives and letting her death come as a surprise would be much harder on them. I’m grateful we have had a chance to prepare them.

Being honest doesn’t mean sharing all the painful details. Instead, for our family it has meant a steady, but slow stream of information that help the boys understand that death is becoming closer. It has meant telling them that she is having trouble talking or remembering people, that she can no longer feed herself or get out of bed much. It has meant explaining what hospice care is and why she is using it.

These have been sad conversations, but not scary ones. We’ve kept them relatively short, but let them ask questions, as they need. Their questions have been good guides for us – helping us pace information based on their needs.

Respect their wishes.

I planned a trip to visit my Granny shortly after she entered hospice care. At this point she barely recognized me on the phone. The trip was more about my need to see her, than her need to see me. We asked the boys if they wanted to join me on the trip. They were both very clear: Davis felt the need to see his Granny; Patrick preferred to not have the memory of her being disoriented, confused and frail.

I don’t know if we made the right decision or not, but we chose to respect their wishes. Davis accompanied me on the trip and Patrick stayed home.

Similarly, Davis wanted more information and wanted to prepare himself. Patrick requested that we only give him sporadic updates. They both seem to be processing her coming death in a healthy way, but their approach is very different. We are doing our best to honor their wishes and let them grieve at their own pace.

Model faithful & compassionate caregiving.

In talking with my boys about what would happen after Granny entered hospice care, we talked about mechanics of hospice care and what may happen to her mind and body over the following weeks and months. That perfunctory conversation took a beautiful turn when they asked what they could do for her and how they could care for their Granny.

We talked about being present, even if she didn’t realize we were with her (in person or on the phone). We talked about how their Mimi stopped working a few years ago, so she could spend time with her mother and care for her.

Like I mentioned earlier, Davis joined me for a quick trip to see their Granny. He was patient and helpful. Helping her get out of bed or changing her socks or pushing her wheelchair. These were the tangible ways he showed his love for her. During the trip, he listened patiently to her incoherent conversations, not pushing her or frustrating her – simply being a calm presence in her life.

Share your religious beliefs.

Whatever your religious beliefs or non-beliefs, you likely have some feelings about what happens after death. Kids, even young kids, will have picked up on some popular notions about the after-life.

We have been open with our kids about our personal beliefs and also exposed them to some other beliefs that are commonly held. They are old enough to realize that none of us really knows what will happen after death and to begin developing their own thoughts.

Preview common emotional reactions.

For kids who have never experienced the death of a close friend or family member, they don’t always know what to expect. The feelings that can creep in may take them by surprise or be more intense than they expected.

We have tried to address this by helping our boys know that feelings of sadness or worry are perfectly normal. That they may cry or see others crying. We’ve also talked about how they won’t feel sad all the time and that it is perfectly normal to not feel emotions about Granny’s health all the time. They shouldn’t feel guilty about being happy, even if others around them are sad at the time.

Allow room for ongoing grief.

Grief will be on ongoing process for the foreseeable future in our family. I don’t know what it will look like or how long it will last. I do expect it to come in waves and be different for all of us.

It is important that our kids continue with their normal lives and maintain their routine, but also have room to be sad or worried and know that we’ll help them cope as needed.

We expect our kids to follow a fairly normal grieving process, but will be aware of signs that suggest they need more help than we can provide.

 

We certainly aren’t experts on helping kids cope with death, but so far this approach seems to be working for us. If you’ve helped your child cope with the death of a loved one, what has worked for you?

 

Resources:

National Association of School Psychologists

The Child Mind Institute

Hospice Net