Sometimes You’ve Just Got To Retreat

Sometimes You’ve Just Got To Retreat

There are only a few things I dread.
One of them is the phone tree.

You know… when something bad happens and you have to call everyone in your family, plus your friends and tell, then re-tell what happened. I hate that. Maybe it’s because there are nine kids in my family… maybe not. Maybe it is exhausting even if you are an only child.

When Lucy was diagnosed with cerebral palsy at nine months, I was done. Prior to that I had really tried to just put on a brave face and pull up my boots and manage whatever it was I was dealing with. People would offer to help as I juggled a deaf three year-old, and a 9 month-old baby who continually arched away from the person holding her, her head thrown back and hollering.
“No, thank you,” I said, time and time again “this is my life. I do this every day and I need to be able to do it with or without help.” (Though I rarely did it with help.) These words almost became my mantra… “Thank you, no. This is my life. I need to be able to do this with or without help.”

Then, one day… I crashed and burned.
It’s true.
I couldn’t be strong, not for another minute.
I was curled up, in the fetal position, on the floor of our apartment and I could not stop crying… no it was more like wailing… I couldn’t stop wailing. I called Aaron at work and told him, “You have to come home. I can NOT do this!”

I broke.

I snapped.

I couldn’t imagine one more day, let alone many more years, of being strong AND brave AND responsible AND managing it all. It was just too much.

But I learned something that day, yes, the day that I was completely leveled by the thought of cracking open a can of soup and making a grilled cheese sandwich for Leah, I learned that sometimes you don’t have to be brave or pull up your boots and tromp through the waist deep mud. I learned that sometimes you’ve got to retreat.

Go to a safe place.

Lick your wounds.

Gather your strength.

Not only is there nothing wrong with retreating… it is necessary at times.

I watch my friends, especially the ones who have kiddos with special needs. I can’t help but note when they refuse help and assistance. As I meet families who are struggling with unexpected circumstances I let them in on my secret- “It’s ok to retreat.”

Sometimes it is “RETREAT!!!!!” like you might imagine hearing called out on a battlefield, when things are not going as expected or planned.

The last few weeks have been tough. Aaron and I lost a very dear friend. I did end up in the fetal position, crying, more than once… my head pounding as day after day my brain cycled through accepting and completely rejecting the fact that our friend is really, really gone…and sure enough just last week I was once again confronted by opening a can of soup when I realized it was 3:00 p.m. on Saturday and I had not even fed my kids breakfast.

The day before the funeral, my sister found out that the baby she had been carrying, at 18 weeks, no longer had a heart beat. I could hardly cry. I had nothing left.

I’m not Wonder Woman or Supermom.

I am just me.

And I am sitting here pondering how sweet
sad
fragile
short
and exquisite life is.

Sometimes, I need to be reminded to take my own advice… and retreat.

~In loving memory of our friend Jed Arveseth

Excited!

Excited!

Painting

Painting with Leah

This entry was posted in Crazy Little Thing Called Life by Rachel Coleman. Bookmark the permalink.

About Rachel Coleman

The opinions and late night musings published on this blog are Rachel de Azevedo Coleman's alone, and are not ever intended to represent the opinions and sentiments of any organization or product that Rachel is, was, or will be associated with. Rachel Coleman is the creator and Emmy-nominated host of Signing Time!, the children's American Sign Language vocabulary building series. She is also the creator and host of Baby Signing Time, Rachel & the TreeSchoolers, and Rachel & Me. Rachel now serves as the Executive Director of the American Society for Deaf Children, a 501c3 nonprofit established in 1967 by parents of deaf children. ASDC is the American Sign Language organization for families who are raising deaf children. www.deafchildren.org Motivated by her child, Leah's deafness, Rachel has spent the last 18 years creating ASL products to help bridge the communication barrier between hearing and signing communities. In 2006 Rachel founded the Signing Time Foundation, a 501c3 non-profit dedicated to putting communication in the hands of all children of all abilities. In 2014, the Signing Time Foundation launched a 50-Lesson online ASL curriculum called "Sign It: ASL Made Easy" that is available free-of-charge to families with deaf or hard of hearing children ages 36 months and under. Apply at www.mydeafchild.org. For those who do not qualify to receive Sign It ASL for free, they can find it for purchase at very reasonable rates on www.SignItASL.com. Rachel and her husband, Aaron, live in Salt Lake City Utah. They are parents to Leah who was born profoundly deaf, and is now a senior in college at NTID/RIT in Rochester, NY. They are also parents to Lucy who has spina bifida and cerebral palsy, and recently graduated high school. In 2010 the Colemans were joyfully reunited with Rachel's daughter Laura. Rachel is proud to be Laura's birth mom. Laura was placed for adoption as an infant in 1992 when Rachel was 17 years-old.

36 thoughts on “Sometimes You’ve Just Got To Retreat

  1. Oh Rachel…I’m sitting at my desk at work crying…words cannot express how sorry I am for the loss of both your friend and your sister’s unborn child.

    You don’t know me…I’m just a mom who has an almost three year old little girl that knows every word and SIGNS them to your Singing Time opening song. I do hope you know what a true blessing that what you and your family have done with Signing Time have done for so many, many, MANY families! You took the challenges that both Leah & Lucy have had to face and turned it into something magical and shared it with so many!

    Thank you for you for what you do!

    God Bless!

    ~ Kathy (Signing Time mommy of Charlie in Oregon)

  2. No words could possibly express how much I wish I could comfort you all. Just know you are all in my heart, my thoughts, my prayers.

  3. You know, there are no words that make any of this better. I’m sure this isn’t breaking news or anything to you, but I think that special needs mom’s are scared to ask for help. Because: their kids are hanging on by a string as it is. They don’t trust the way “normal” mom’s trust. (hmm…who, me???!!!)
    Anyway, sending you prayers and hugs and lots of healing.
    I’m off to hibernate (’cause sometimes you need to do more than retreat!) 😉

  4. Words are never up to this task…but my family sends our condolences, wishes for strength and eventual peace and acceptance (however grudging!), and love.

  5. I’m sitting here crying too, for you, your family, your friend’s family and myself and mine. Life is not for the faint at heart that is for sure and I believe and always have that no one is an island, we all need other people and gain so much from the love and support we get from people who love us and want to help. Who ever said we have to be so tough and brave all the time? We were not created to be alone with the dealings of life and love and loving people exist for that very reason. Life hurts at times and we have all experienced it which is why I am crying, I lost my Dad to suicide not even 2 years ago and very few things in life hurt as much as that. PLEASE everyone, accept and embrace the help others offer, it benefits both you and your kids. I too want to thank you SO much for Signing Time, it has been and still is an enormous blessing to us and our 2 1/2 year old as a communication tool although she is hearing, THANK YOU!

  6. Oof. Rachel, I am so very sorry for the loss of your dear friend, Jed, and for your sister’s unspeakable loss. Your post is so timely; just yesterday I lay face down on my living room floor as my son played next to me and sobbed because I just can’t keep on like I have been.

    Retreat. Such a lovely concept. Such a difficult reality. But so, so important. I’m going to try to figure out who can help me as I plan my own retreat from the world for a bit. Thanks for the —I hesitate to call it “permission” because, really, we’re adults and make our own choices —acknowledgment that it’s okay to hit the wall and it’s okay to walk away for a bit.

  7. I did not know Jed all that well — only from the office — but I recall he always seemed to have a cheerful nature about him. He will be missed by a lot of people, including you and your family. Take care.

  8. Dear Rachel,
    I am sorry for your loss. Life is hard at times isnt it?
    I thank you for your words that are always so truthful.
    I often smile through my life when I feel like retreating and at times I truly can not retreat. But I can plan them. I will remember this.
    Collin is getting ready to get a tracheostomy and we are greatful that this should help him breathe around all those secretions. It is scary all at the same time.
    Thank you again for making my son’s wish come true. I will always remember him singing along with you in his own way all through the show in Virginia this summer.
    Need to go check on dinner, suction Collin, see how the baby is doing and then oh ya, remember to breathe. Planning a retreat here soon. 🙂 Thanks for the permission. Dianna Swenson mommy to Collin and Chloe who met you this summer for Collin’s make a wish.

  9. WOW! Once again I sit here wondering how the heck you are sitting there exposing my secret feelings…..except I still have not learned to let others help. I still have my force field up always convincing myself I can handle it all – all the time! Yes I have wonderful supprt around, but…..you know! Sometimes I can restore my energy by ‘retreating’.

    I’m so sorry for your loss of such a wonderful dear friend and for your sister’s baby! I wish I had the right words to take your (and your family’s) pain away.

    Thank you again for exposing yourself a little and showing me that I may just be a little bit ‘normal’. You are the best!

  10. Retreat was a good word to choose, “the act of withdrawing, as into safety or privacy; retirement; seclusion”. I feel helpless offering words of condolences, but it’s the only thing I can do through cyberspace. So sorry for your losses. In your retreat I hope you find some privacy and safety to deal with this hand. I am praying for you and Aaron and for the comfort you can give one another.

  11. I myself am unsure what to say, as I feel a person get’s overwhelmed by the sorries everyone offers. My heart bleeds for you and those involved in both situations. I can relate, and that too makes my heart bleed even more. If I could, I but would give you the worlds biggest hug to retreat into.
    In regards to everyone needing a retreat, your words and thoughts could not have come at a more suitable time. I was finallt saying today that I need a day for just me. No kids, no husbands, no anyone. Just me. Even if I still do things that need to be done or just sit and cry a day away, I need a me day. Everyone needs a me day now and again.
    Sending you Faerie wishes and butterfly kissed to get you through one of lifes “dips”.
    <3

  12. I am so sorry Rachel. It must be tough, but as a mother, we know how to bounce back time and time again, with or without help. I am glad to know that you will have help during this time of sadness.

    My best wishes and prayers are with you and your family.

  13. Rachel, I have four children. My girls (15 and 20) are healthy as goats. My 2 year old son has been diagnosed with hearing loss which caused his speech to be delayed…..until we found your videos. I also have a 9 month old who they are in the process of testing for CP.

    All I can say is that I truly love your work, it has been a sincere God send to our family. I was a music teacher for years, before deciding to go back to school 6 years ago to become a nurse. Funny how God works.

    I have a song that I replay over and over in my head when I find myself in times like this…..okay, I just cry, pound my fists and scream at the world at the exact ‘moment’…..but when i regain my sanity long enough….. This is the chorus

    They don’t know that I come running home when I fall down
    They don’t know who picks me up when no one is around
    I drop my sword and cry for just a while
    (Look up for His smile)
    ‘Coz deep inside this armor
    The warrior is a child

    Good Luck to your family. My thoughts and prayers are with you. You’ve done so much to touch others; don’t ever forget that.

  14. Rachel,

    I have followed your posts for the last several months. I took 3 days to read everything from the beginning of 2007 to now. You gave me support without even knowing it because I needed to know somebody else understood what I was going through- and you did.

    I am so sorry for the pain you are going through. I know words cannot change the grief and loss you feel. What a tragedy to lose a dear friend and at the same time, watch your sister and her husband deal with the loss of their child. How very, very tragic.

    Just know that my thoughts and prayers are with you and your family during this time of loss.

    Warmest Regards,
    Christy

  15. Rachel,

    Words always fail me at times like this. I will keep you and your family in my thoughts and prayers. I send you the biggest cyber (((((hugs))))))).

    You have such a way with words, and have been so honest about the trials and tribulations we mothers of children with special needs face. Sometimes I get so caught up in the moments and to do’s of life that I forget. I feel like I’m on auto-pilot most of the time. I have learned, though, as you did, that as the parent to a child with special needs you need to take care of yourself too. I am lucky, my “retreat” is almost daily these days. I run, or when my asthma kicks in, I walk. Every day at least 30 minutes. It’s my sanity break each day. I started training for my second 1/2 marathon, and it is such a stress reliever.

    Rachel – plain words can’t begin to express how incredibly grateful I am every day for signing time. My daughter has DS, and is very speech delayed (so far tests haven’t shown her to be HOH). We learned about Signing Time when she was 2 years old. She loves the shows. Just trying to write these words brings tears of joy to my eyes. I can talk to her, she can tell me so many things now, like when she has a headache or what she wants to eat, and even, yes, what her favorite color is! Purple, by the way! She is learning to spell and count and knows all her colors. Her teachers are so amazed at how smart she is. We owe so much of her expressive language to Signing Time. Thank you, Thank you, Thank you.

    Dianne

  16. Thoughts and prayers to you and your loved ones during this difficult time.
    Like all the other moms who have commented, I want to thank you for your strength and spirit. You share yourself with us heart and soul, especially through your music.

    When life gets tough for me, I sing your words to my babies (and myself):
    Take a look around and count up all you’ve got
    Sometimes it seems a lot
    and sometimes its not enough…

  17. Your phone message was the best.
    We will never stop reminding oneanother of the crazy lambchop, sad, divorcing, pee our pants laughing at Ruben & Ed days. That’s what friends are for- Jed too. You don’t get to forget. Retreat and remember how great it is to be alive and influencial and fragile and NORMAL…and friend. Ah, crap! Stop typing, Jess and pick up the phone! Luvs

  18. Rachel,

    You have given so much of yourself to us that we feel as though we know you – and we love you very much. It is strange to write that, as you don’t know me or my family at all. But my daughter (2 1/2) told me at breakfast this morning that she was “Rachel” and then she taught me to sign “Leah’s Farm”… and most of the signs from that episode. So, having had eggs with you this morning, I feel compelled to write and tell you how much I wish I could do something for you as you grieve.

    What a terribly sad time for all of you. You are all in our prayers and thoughts – we are sending you fervent wishes for comfort and peace. I am so glad that you have learned to retreat and regain your strength for the journey. You are amazing (though you probably don’t feel very amazing right now, and that’s okay, too).

    I’m sending you my warmest thoughts.

    ~Shaay

  19. I’m so sorry to hear you have been having a tough time. I’ve also recently come out of what has been the most difficult period of my life. Retreating is great advice. Accepting help when offered.

    What gets me through the day is focusing on the next RIGHT thing before me. Doing the next right thing always gets me through, even when the day seems unmanageable. My other secret? Helping others. When my life seems unbearable, if someone is presented to me that needs a little something – I can’t turn away. It seems God puts them in front of me to get me out of myself, my pain, my suffering, to help others.

    So sorry about your friend and your sister… My thoughts and prayers are with you.

  20. I’m so sorry always seems so inadequate, yet there’s so little else to say. Rachel, you and your family are loved by thousands who understand that life doesn’t always make sense.

    I learned first hand last week the importance of a retreat–because I couldn’t get one. We were on a driving vacation–6 states, 3 kids and 1 new service dog. This was our first trip with the dog, and I wasn’t prepared for the increased stares and attention we received. We stayed at a very nice cabin at a state park on the beach. With no television, telephone, or newspapers, we quickly learned how our family has been relying on electronics as coping devices.

    The poor dog picked up a tape worm, which we had treated by a very nice vet, and developed a limp from irritating the bottom of her feet. If that wasn’t enough, she stepped on a big ant hill at one of our many rest stops, making a limping beeline for the car, where she shook off many biting ants to entertain us for the next 20 miles or so. I’m sure the poor dog is logging onto Ebay at night to find a new family. Would have loved to assume a fetal position, but I wasn’t sure we had gotten rid of all the ants.

    Seeing this post and the comments made me realize that this blog is my retreat–a safe place where I can share my experiences and those of others and know, that while trying to eek out some sort of “normal” life isn’t easy, it is purposeful and worthy. And most importantly, I know that I’m not alone. People I’ve never met understand my heart breaks and my joys better than those I’ve known for a lifetime. Thank you, Rachel, and everyone for creating this amazing retreat for a weary (and itchy) traveler.

  21. Oh Rachel, I am so sorry for everyone’s loss. My heart goes out to all touched by this unfortunate time. I just told my son 3 weeks ago, due to a very tragic loss in our community of an 18 year old, that we will never know what the reason is but …. it was his time to be in a better place. It wouldn’t have mattered what you did to stop him, it was his time. And I believe that for all … I’m not all that religious, but God has a plan for us. You would be so proud of Nick… he raised $3100 for the family and is continuing to carry on his friends memory with helping other children that have had a loss due to drunk driving. And I would hope that the memory of Jed and your sisters unborn baby will continue in your hearts and something meaningful will flourish to those who did not know them. Deepest regards!

  22. I’m so truely sorry for the loss of your friend. I’m equally sorry to hear of your sisters loss as well.

    It’s amazing I opened your e-mail this morning. I was having a rough time last night. I had had enough. It wasen’t even a tough day. I’m a stay at home mom and love my job. I live half way around the world from my family. I’m alone. I mean I have friends, but would never ask for help. I refuse to ask my husband, but I feel like I need a moment or an hour to myself. If it’s just to cry or meditate. Me time or as you called it retreat. I love my daughter. She’s the best thing I’ve ever done, but I feel horrible wanting or needing something for me.

    You and your family will be in my prayers.
    Ruth- Salzburg, Austria

  23. Rachel, so sorry about your losses. Sometimes it seems like it just keeps piling up. Good for you for listening to your own needs. You can’t take care of everyone else if you aren’t taking care of yourself.

    Here’s hoping for a better, brighter Spring. You bless thousands of kids (including my 18mo pumpkin) everyday with your work. Thank you for all you do.

  24. Words seem so inadequate but my heart feels the pain – the loss of an old friend and the loss of someone you had not met yet but already loved so much.

    Our life is better because of each of you – my kids are better people because of what you have given us. In that, my heart feels gratitude.

    My kids sign all the time, they teach people wherever we go, signs that are appropriate to what it is we are doing at that very moment – my heart feels pride!

    Your words are wise – retreat.

    Sometimes I retreat back and listen to my own heartbeat – the on going beat that does keep me going –

    God bless each of you!

    with love,
    Stephenie

  25. I love you Rachel. It’s just not right that so many people are suffering so much. But it’s so nice to know that he was loved by so many so deeply. It gives me a tiny bit of comfort. I am leaving work now to retreat.

  26. My family loves Signing Time and I have been reading your blog for months (years?) and have never left a comment before, but you have touched my life, and today I needed to try and touch a small part of yours by letting you know that I’m so sorry for your loss. How heartbreaking. God bless you.

  27. It’s so cool how you teach sign laungue! I’ve watched some of your videos! If you want to, can you please comment back!

  28. I check your blog ever so often. I haven’t been able to be on the computer lately, but I had noticed on twitter that you had lost your friend and my heart went out then to you. So today when I read the update on your blog, my heart was touched again. I did 20 years of in home childcare and loved it. But I had been out of it for 6 years when my grandsons moved in with us. Both special needs, but not as severe as what you have to deal with. But I learned then that you DO have to retreat sometimes! My husband understands this, but I don’t think their father (our son) does. Sometimes the ‘retreat’ is just to my bedroom with the door locked. At first I had felt that I had gotten WEAK. But I know now that it was just God telling me that I need to take care of myself also.
    I am SOOOO very thankful that you are able to express yourself the way you do. I truely think that it helps the rest of us to see a little of how we really feel.
    So sorry for your lose. I was wondering if he died unexpectedly. Also wondering how Leah is doing with the lose. You had said on twitter that he was the only friend that learned to sign for Leah. It seems that he was such a major part of your family. Hugs to your whole family.

  29. Rachel,

    Retreat… thank you for the reminder. I still consider myself a “new” mom despite the fact my baby is 17 months old. During the past 17 months I’ve finally learned how great it is to be the mom I’ve always wanted to be; with no disrespect to anyone else, I believe I have the best daughter in the world. I’ve also been given the opportunity to learn first hand about many other things including Down Syndrome, life in the NeoNatal Intensive Care Unit, Open Heart Surgery for a 4 1/2 month old and moderate hearing loss diagnosed at 10 months old. It has been a crazy 17 months, but I’m constantly reminded that I have it good compared to many other people’s situations. It is nice to be reminded that I can retreat – and should from time to time – to keep my sanity. Your post brought tears to both mine and my husbands eyes as we could relate to your feelings in our own way. We are very sorry for the loss of your friend, Jed. In reading his obituary, we were very impressed with the many things he accomplished and the people he touched during his lifetime.

    On another note, I want to say THANK YOU! This is the first post I’ve read and the first newsletter, but we have been fans of Baby Signing Time since October when we first played the DVD and my daughter became a huge fan of all of you! We learned quickly not to get in her way when she was watching her DVD! We play it at least once or twice a day and listen to the CDs every day. Allie can now sign More, All Done, Dog, Daddy, Eat and Fish (her latest favorite!). On her birthday she first signed “more” very deliberately to the pride of all of us and her visiting Grandparents. By all means, I gave her “more” cake! Thank you for your diligence to helping all these brilliant children show us how brillant they really are. Thank you for being so strong and letting us know it is okay to Retreat.

    We look forward to being long-term Signing Time fans!

  30. Hi,

    I am sorry for both of your losses! It is truly amazing how life can throw you so many curve balls. One minute things can be truly amazing and so quickly your world can feel like it is crashing down! You are truly right it is ok to crash, to take time, and refocus – it is a time to remember those lost and to remember that there are good things to come not matter how bad it may seem. Keep your head up – and I am sure your friend would like nothing more but to look down on you and to see you smile. Keep close to your heart the warmest memories. God Bless!

  31. My name is Shannan and I was referred to your blog. My five month old daugter Kate has been diagnosed with cortical visual impairment, moderate brain damage, and possible cerebral palsy. After she was born, we noticed that her eyes weren’t tracking or focusing. All of the doctors assumed it was most likely a developmental delay, but my instincts told me it was something much more serious. Finally, we took her to a well known opthamologist at Primary Children’s Hospital in Salt Lake. He ordered a MRI and it revealed a moderate amount of brain damage that most likely occured late in my pregnancy, most likely from an infection in the womb. We are at the early stage and don’t know what to expect. Kate is cortically blind and has very little vision. She has little spots of vision here and there, but for the most part cannot appear to see. She has moderate spasticity in her upper body, mostly in her arms, neck, and shoulders. We have been struggling in beginning our journey with her.

    Your post echoed exactly what I have been feeling over the past month. We have had our stuggles with Kate, and we lost a dear aunt completely unexpectedly. Thank you for sharing your feelings. I have had to take a few minutes to “retreat”. After the first month of feeling like I was on a high of strength, I have crashed emotionally the last couple of weeks. But taking the retreat helps me really get through my feelings and find the strength to go on. Thank you for your post and for your honesty.

  32. Thank you for your comments, they made me smile and some brought tears to my eyes. Your love and sympathy lifts me. Your stories inspire me and are my daily reminders that I am not alone on this journey.

    The resources I have created over the past 8 years, were not only made for you, but also for me. I need the connection, information and support as much as the next mom. Thanks for being there.

    ~Rachel

  33. Rachel,
    Wow! I am…. so sad. I spent the last two years in Montana and moved back to SLC recently. I felt strongly that I needed to attempt another search for my friend Jed because I hadn’t tried facebook. I followed your link tonight and here I sit. This is the first I have heard of Jed’s passing. We were best friends in college and lost touch with each other a few years after graduation. He is such a special soul and I have thought about him often. We were known as the two Jeds and simply put, he truly defined love for life. I have missed my friend. I would be EXTREMELY GREATFUL if you would contact me to share memories and grant me some closure. If too difficult I understand. (801)870-8706

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