Category Archives: comfort

Sniffles should be a piece of cake

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A year ago Bridget and I almost spent Christmas in the hospital. She had been so healthy and then BAM! A week before Christmas she was so sick we almost lost her. Again. That she was discharged on Christmas Eve was all the gift we needed.

2015 has been a good year for Bridget. No hospitalizations. Her doctor’s visits have been uneventful. Kindergarten started and she has made friends. We are merrily living our life and I was just starting to feel like we did not just survive 2015. We triumphed over it. Continue reading →

The worst day

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We have all had the “worst day” of our lives. Bridget, in all honesty, has given me most of mine. The time in the NICU, having to physically hold her down for testing and the list goes on. For every “worst day” she has given me countless best days.

That is not always the case.

Today two friends of mine is going through another worst day of their life. Three years ago these happy parents lost their first born, handsome, cute, full of laughter, son to SIDS. Although he was just five months old, Colby gave his parents a lifetime of happy memories.
Continue reading →

31 for 21

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I have been blogging for about four years now. In my first year my friend Michelle at Big Blueberry Eyes began hosting the 31 for 21 challenge. Although Boo doesn’t have Down Syndrome she has a lot of friends that do.  I have participated for the past three years and will do so again this year. 

And this year I am starting on time, so bonus points!

October is Down Syndrome Awareness Month. Boo’s favorite friend at school, Jillian, has Down Syndrome. Just like Boo, Jillian learned sign-language first. Did you know that most therapies used in treatment for a person with autism or developmental delay were first created to be used for children with Down Syndrome?

Sadly more fiction is out there about Down Syndrome than facts. Last summer a man (for lack of a better word) told a woman that it is immoral to have a child with Down Syndrome. He is wrong, so wrong. I am not promoting pro-life or pro-choice, it is your decision. However I urge, no beg you that if you are pregnant and told your baby might have Down Syndrome to find out the facts, find the support and find information before making a choice you cannot take back.

Here is what Down Syndrome is not:

  • Down Syndrome is not contagious
  • Although all children with Down Syndrome experience some cognitive delay, having Down Syndrome does not mean the child cannot learn 
  • Down Syndrome is not a rare disorder. In fact 1 in about every 700 children are born with Down Syndrome 
  • People with Down Syndrome are not always happy. Just like all children they have their moments
Here is what Down Syndrome is:
  • People with Down Syndrome have jobs and participate in the Community
  • People with Down Syndrome have the capacity to love, to learn and to affect change
  • People with Down Syndrome life expectancy has grown to be that of most peers.
  • People with Down Syndrome have friends, know love and just like their peers have tempers
  • According to NDSS, there are more than 400,000 persons with Down Syndrome living in the US. Chances are if you do not know someone today you will tomorrow.
  • Down Syndrome does not discriminate on race, age or income level
Having Down Syndrome is a life sentence, but it can be a beautiful life. 

The purpose of the 31 for 21 challenge is to post every day in October. Each post does not have to be Down Syndrome related. I did focus on that today to kick off the month. Please visit Michelle’s post to learn more about participating.

I hope my fellow bloggers join Michelle’s Challenge. Because awareness promotes acceptance.

https://youtube.googleapis.com/v/5M–xOyGUX4&source=uds


Just what we all want for our children. To be seen just like everyone else.



 
To learn more about Down Syndrome, please visit the National Down Syndrome Society.

My Challenge: Mardra

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I would like to introduce you to Madrathe mother of a wonderful man who has Down Syndrome. I believe every parent of a child with special needs has the same challenge. 

My Challenge: I am afraid of monsters.

As long as I can remember, I have known that a monster is not the lifelike replication of a furry puppet. I’ve also never really been afraid of Frankenstein or Dracula style monsters, fantasies that were created to emulate the human condition, but in and of themselves began as a figment of a writer’s imagination. 

No, as a young girl and still today my fear of monsters is much more palpable, cynical and real.The opportunity to see and read stories of the monsters that walk among us are everywhere and every day. 

The news is filled with them.  One example that recently crushed me involved high school boys acting monstrously towards two of their innocent and more vulnerable peers. My stomach turns now and hollows; my heart pains as it beats living with the long minutes of rape, exploitation, jeering and confusion. I type through the tears for the parents of the victims, the anger they must feel, the shame, the fear…

I scold myself. I shouldn’t have read the article. The headline told me all I didn’t want to hear or believe. 

What am I supposed to do with these images, at once swimming among and drowning my own thoughts? This being one of the many examples of monsters that look like normal human beings, living among us. And they are everywhere. Both in power and searching for power. On the streets and online. In my imagination and in real life. They have always been and always will be.

For the first 21 years of my son’s life, we lived in our own shell. I went to work and home and kept a close circle of friends. Marcus went to a private school where I felt he was most safe while learning and growing. From the first days of his life I feared that his facial features would make him easily preyed upon; I felt compelled to focus on preventing the possibility of any ill-intentioned creatures causing him harm.

The word overprotective has been lobbed in my direction and that too carries its own weight of parental guilt and consequences.

Less than two years ago I decided to put in a window to our closed off life. I finally embraced the 21st century and Marcus and I claimed our own little corner of the World Wide Web. We launched Grown Ups and Downs, with much thought, trepidation, and coffee.

So far, we are a very small clan and don’t attract much attention from monsters. But I know they are there. And, that is part of why we are there, too.  A song I often refer to for courage is “Hands” by Jewel: For light does the darkness most fear.

https://youtube.googleapis.com/v/AfsS3pIDBfw&source=uds


I don’t have a great arsenal of defenses against potential monsters. I don’t have a superhero shield or a sword of steel. All I have are two things: language and love. Marcus inspires me every day by sharing his stories and his humor. He gives me his love unconditionally and he accepts me when I am curled up and hiding under the blankets. He reminds me when I rant that, “No one is perfect, Mom.”

Monsters feed themselves lies and vomit it upon others. Monsters are even afraid of other monsters, which is why they huddle in packs, and commonly use whatever means available to dull their human senses.

The days when fear pulls on my shirttail and coaxes me to hide, Marcus shows me how his light can shine and warm others who may also be afraid. He tells me dreams the monsters could not believe, and we climb towards those dreams.

I know the monsters’ presence will grow with us and there are days they strike. There will continue to be days the when monsters touch both those I do and do not know and leave me bruised and shaken in their wake as well.

I do not foresee a day when I won’t be afraid of monsters. And monsters, true monsters, will not be changed.

But others, those who are looking for kindness, reasons for optimism and good news. Those who are looking to learn and have opened their minds to a spectrum of human possibility, it is for them that Marcus’ light shines the truths of love and life’s potential. His enthusiasm and ambitions take a little bit of power and energy from the darkness monsters feed upon: ignorance, fear, and misunderstanding. It is with Marcus by my side that we aim to show from our little corner of the world a life of innocence, of ambitions, of love, and try to shine brighter yet these things into the world. These are the only weapons we have and we wield them with hope.
In the end, only kindness matters…
 

Marcus and his mom Mardra

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When Mardra sent me her Challenge I immediately thought of Robert Sayler. Then the horrific parody of the ALS Challenge was done to a young autistic man. Yes, cruelty happens, but when your child is unable to communicate, when their very being is something that can be preyed upon you live with another fear. I send Abby to school every day knowing she could be bullied, targeted and hurt. Yet I know I have provided the tools she needs to alert myself, her father or a trusted adult to keep her as safe as possible. David teachers her self-defense and drills into her the need to be aware of her surroundings. Yet, I know with all the tools we give her a Sandy Hook, a 9/11 or a Boston Marathon could happen. Or worse.


With Boo the fears are different. Boo cannot tell me what happened. For example last week she fell and scuffed her knee. She told me her therapist at school “pushed slide”. I knew that probably didn’t happen. When I asked her therapist the next morning, I said Boo said you pushed her off the slide. David was there and said no, I was walking her to the car and she tripped! We all had a chuckle over it. Boo bruises easily, she is always getting a bump or scratch. Recently she had one on her back. It turns out Abby dropped her. No biggie, but reading Mardra’s challenge reminds me that some day it might be. That Boo needs the language because one day it could be her that some high school bully pranks with a bucket of feces. Or worse. If you have time, check out Mardra’s article on the Huffington Post. It’s not just the monsters out there, it’s the people who say our children need to be hidden. 

You can find Mardra and Marcus on the Grown Ups and Downs Blog, Facebook & Twitter.

What's your challenge is a series that was inspired by a program I created at Abby's school. I am amazed at how honest and hopeful the challenges have been. Thank you to all who have contributed. To submit your challenge, please e-mail me at firebailey@gmail.com

Sleep?

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Last night when I was up with Bridget, I thought to myself…I love this. I absolutely love just holding her and laying on the couch until she calms down and falls back asleep. I love that she can sense when I lay her back into her bed. I love that she is so small and petite (okay short) that carrying her isn’t a problem.


I know I should not enable her. I know I should just let her cry it out. And most times I do. But last night I just didn’t want to. And of course I feel some guilt. I hate when Abby wakes up in the middle of the night and wants to sleep in our bed. It’s not that I dislike Abby, but the fact that sleeping with Abby is like sleeping with a boxer. She is all knees and elbows.

Bridget though, Bridget hugs you with her entire body. She wants to nestle her head right under your neck. She knows the difference between my standing with her and sitting. Without a word she knows how to tell me what she needs to be comforted. 

For almost the first 2 years of Bridget’s life I would put her to bed and she would fall asleep. Then anytime between midnight and 4 am, when I was in the deepest sleep possible, she would awaken. Screaming. All I could do to comfort her was to lay on the couch in a way to make sure she was safe and we would doze. It got to be that I just left the pillows and comforters behind the couch so they would be in easy reach in the morning.

Then shortly after she turned 2 and a half, one night I got tough. She was going to comfort herself back to sleep. It was a month of torture.  The “experts” totally lie when they say a child will cry themselves to sleep after 10 minutes. But the month was worth it. Gradually Breidget began to sleep through the night, most of the time. And now when she wakes up she will coo herself (and sometimes cry) back to sleep. I have learned her signals. If she fusses for more than 5 minutes there is no way she is falling back to sleep. She will stress herself so that her reflux acts up. Then she is in pain, something I will not withhold comfort from.

But those nights are becoming fewer and fewer. Thank goodness, Boo is sleeping better. Although I still wake up in the night sure that I have heard something. And on the nights now when I know she cannot comfort herself, I rush into the room and will forgo any thoughts of sleep.

I may never know why Boo wakes up screaming in the night. Sure I can guess. It might be bowel issues, she might be in pain, she might be scared. But sometimes, like last night, I think she just needs her mom’s arms around her.

And I am more than okay with that.

My Challenge: Echo

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Today’s My Challenge is from Echo a mom blogger who writes about the joys and tears of home schooling two children, one with autism and one with a diva issue. 

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My biggest challenge and my greatest love…
When Kerri asked me if I would be willing to participate in this series, I was ecstatic. I think that opening up and sharing our struggles and challenges is a great way to help each other grow as parents.
My son. My handsome, smart, charming and stubborn son is on the Autism Spectrum. He has PDD-NOS (formerly diagnosed as Asperger’s Syndrome). He is extremely high functioning, but also has a lot of sensory processing and social interaction issues.
My daughter. My gorgeous, intelligent, dramatic and independent daughter is NT (Neuro-Typical). She has hit all of her milestones and continues to grow and progress.
My biggest challenge is also my greatest love, raising my two children. Raising a child on the spectrum is hard for anyone, add in sibling rivalry and it can be complete chaos. I have to navigate so many issues, that at times, I feel like I am nothing but a referee.
Try dealing with the emotions of an over dramatic 8 year old when he realizes that his 3 year old sister is faster than him. Try dealing with his frustration when his 3 year old sister starts riding her bike and he cannot.
Imagine trying to get your strong-willed 3 year old to stop touching her brother a certain way. Imagine trying to break up a fight between a 3 year old and an 8 year old because the 3 year old took her MegaBlocks back.
Feel the heartache when you watch one child achieve something that the other could not. Feel the confusion because you don’t want to treat them differently, but you have to because of age. Feel the frustration when your 8 year old constantly yells at your 3 year old and your 3 year old constantly pushes your 8 year old’s buttons.
My children are my greatest love and I would not change either of them. However, trying to raise them together, equally is truly my greatest challenge.


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When Echo sent me her post she wondered if it was “right” for the series. After reading it I replied it was freaking awesome. I think all of us with multiple children have the challenge of raising them the same but different. Add in a disability and YIKES it can sometimes (most times) seem overwhelming. 

Thank you, Echo for sharing your challenge today. You can read more about Echo at Mad Mommy where she shares everything from the 100 lb challenge to home schooling. 


What's your challenge is a series that was inspired by a program I created at Abby's school. I am amazed at how honest and hopeful the challenges have been. Thank you to all who have contributed. To submit your challenge, please e-mail me at firebailey@gmail.com


TBT–Dear Ann

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It’s Throw-back Thursday. A day to revisit an older blog post. This one is from when I a was a tad, um, infuriated with a celebrity.



Originally posted 23-OCT-2012

Dear Ann,

May I call you Ann? I feel we can be informal since you feel so comfortable insulting my child. I mean, really, only family should be able to make us think that we are not good enough. On the other hand….

You, MS. COULTER, are not my family. You are not of my world, my life, my heart.

Because you, Ms. Coulter, from your bully pulpit are comfortable enough behind the camera. But have you ever had to face the affect of your insults and disparaging remarks? When you attack public figures, I usually give you some leeway. After all, they are grown-ups who have had to develop a thick skin in order to navigate life in the public eye.

But my child? My child, Ms. Coulter, does not and should not ever be the brunt of your pitiful attacks. Neither has her sister. A sister who knows that calling some one a retard is wrong but not why. You, Ms. Coulter, do not have to explain to your 9-year old that her sister is not retarded but intellectually disabled.

You see, Ms. Coulter, in your complete and utter ignorance, do not realize that when you call our President a retard (which by the way, should be treasonous no matter what your political leanings) you are not insulting him. You are, in fact, insulting the estimated 2.5 million US citizens you do not even acknowledge.

That is the sad truth, isn’t it Ms. Coulter? You do not SEE those who are intellectually disabled. You only see your own agenda and how to get your name in the headlines. Doing it by insulting my daughter and others like her, that is heinous.   

I know the arguments for using the word retard. I have this discussion with friends and family members. I am from the generation where you could call some one “gay” but not mean homosexual. I am from the generation where retard was an insult you called your friends in a lighthearted manner.

But, unlike you, Ms. Coulter, I grew up. And unlike you, I am lucky to have an intellectually disabled child who only knows love. But some day, unfortunately she and her sister will come into contact with some one like you. I fear that day. I fear the day when some one looks at my daughter and sees a RETARD and not a beautiful girl. 

I ask you, Ms. Coulter to look at this face:



and tell her sister that her beloved sister is retard. Because that is what you did when you thought you were insulting the President of the United States of America. 

From a mom who knows better,
Kerri

My Challenge — Lizzi

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Today I would like to introduce Lizzi the author of Considerings where she actively tries to find the good in life. A blog that is sometimes fiction so good you think it is true, some days full of humor and some days despair. It’s a wonderful mix of writing and feelings. No matter what Lizzi faces each week she is determined to end on a high note with her Ten Things of Thankful post. A wrap up each Saturday where she sees the light in all of her clouds.


My Challenge: Despair



Several hours ago:

My challenge right this second, as I write this in an empty house steeped in melancholy and shattered expectations, is not to go to the cupboard in the kitchen and fetch down that shining bottle from the top shelf.

My challenge is to convince myself that it’s a sufficiently slippery path to prove deterrent – that taking the edge off with alcohol isn’t the answer. At the moment the only thing holding me back is the knowledge that I’ll regret the number of calories it contains. Ah serendipity, thou art disguised within even the soft and pudgy linings of low self-image.
My picture speaks for itself, but it doesn’t say how interconnected so many of those things are. It doesn’t tell of the (thus far) unbreakable bonds between an abusive childhood and my inability to disconnect and stop assuming responsibility (or blame) for aspects of my current situation. Or those between spousal illness and miscarriage. And infertility. And rejection, leading to further low self-esteem. And depression, which is riddling our relationship like woodworm, gnawing away at the things we thought we held dear, and now call into question, time and time again because “what if we hadn’t…”

It’s harder after the high of such a wonderful, fleeting day, where a bloggy friend and I met in person for the first time. We stood in glorious sunshine on the beach and let the warm ocean bathe our feet as we talked and talked. And later we went for cocktails and gelato and things were wonderful. And now she’s gone.

And it’s harder because the day before that (my fourth anniversary) I lay crying, once again rejected (because his illness allows him no other option), utterly desolate and we discussed whether or not our marriage would last. Because we ‘clinked’ our fries together in the restaurant in a desperate show of silliness and recognition of the occasion as tears bathed my cheeks and his eyes turned to pools of despair. Because we had cocktails and got buzzed and all that went away for a while, and with the corners of the situation tamed by tipsiness, we hugged and laughed and the shit went away for a while.
And it’s hard because I have to find a silver lining and even though the sun is up and Maslow would be convinced I should be content, at least, I really, really, really want that drink.

Now:

Writing is cathartic anyway, but particularly from a place of hurt and desperation, because it forces some of the challenges to come into stark clarity, their contrast perhaps shocking, as I lift them out of the tangled mire of mind, determined to examine them in the light of day and describe their form.

In writing this, I was able to trace those unbreakable strings which bind me so tight. And having traced them, I was able to explain them to Husby, who *listened* and cried with me as he realised the extent to which his illness and my smorgasboard of challenges crash headlong into one another, leaving us both trainwrecked and licking our wounds.
I reached out, not for a bottle in the end, but for a friend, who was in the right place at the right time to talk me down and just hear me, and make me feel less alone.
The aloneness is hardest, especially when part of what’s trapping you is your own mind, your own thought patterns and your destructive, determinedly negative perspectives. In point of fact, the (seemingly relentless) shitstorm of life is one of the main reasons I’m part of a new blogging initiative – the SisterWives (http://www.sisterwivesspeak.com) – a group of writer friends whose collective history reads like a manual for surviving almost every kind of crap that life can throw at a person. We are damaged goods, but determined to live life in Silver Linings, and *somehow* turn our hurts to helps. We don’t want others to feel alone. We want to find strength in being vulnerable and honest and sharing our truths in the hopes that they’ll somehow be useful to Someone Out There.

Our motto, (the former part I struggle with, but am trying to take on board): Alone we are enough; Together we are stronger.

Thank you, Lizzi for your honesty with your challenge. All of us find moments of despair. When it gets too much. When you wonder if that shiny bottle will dull the pain. Trust me, it just makes you puke if used for that purpose. There are so many challenges interlinked, as Lizzi has shown. But there is support out there for just about anything you are facing. This virtual world is sometimes all you need to realize you are not alone. I’m glad she still sees the hope in all the clouds.

What's your challenge is a series that was inspired by a program I created at Abby's school. I am amazed at how honest and hopeful the challenges have been. Thank you to all who have contributed. To submit your challenge, please e-mail me at firebailey@gmail.com

The most amazing thing my body has done is….

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When you think about your body, I bet you see the flaws. Okay I see the flaws (of my body, not yours). I avoid the mirror after a shower better than a deer avoids hunting season. I would rather talk or write about anything other than my body.


So with the first Finish that Sentence in over a month I almost skipped. I truly could not think of one amazing thing my body has done. Let alone the most amazing thing my body has done. 

I know, you are thinking: CHILD BIRTH. But well, I didn’t do that too well. Pregnancy, sure. That was easy. Heck it wasn’t until month 7 with Abby that I even thought of maternity clothes (don’t hate me). Yet, I don’t really think that is the most amazing thing my body has done. Every mother, after all, has done it. 

So to be amazing, it has to be unique. Right? 

I was stumped. Truly stumped by this week’s prompt. What is the most amazing thing my body has done? 

Crickets.

How’s that for self-confidence? 

Then I realized it was simple, really. The most amazing thing my body has done is provide whatever Boo needs. I have held Boo down (physically) during a truly invasive, painful procedure yet she willingly runs into my arms. I have comforted Boo during moments of epic meltdowns and moments of a Hallmark-commercial sweetness.

This body is the one Boo clings to more than any other. This body, my body, is the one most likely to soothe, to make secure, to always be there when needed. At 3 in the morning or at 3 in the afternoon. 

It amazes me, with every test I have held her down through, she prefers my body over all others. 

My cheek is the one that rests against hers for a kiss.

My ear lobe is the one she rubs for sensory comfort.

My mouth the one that advocates for her. 

My shoulder is where she rests her head when tired, when sad, when happy and when content.

My lap is the most comfortable seat in any restaurant.



My hips are the one she rests her head against as I do dishes, just wanting to be close to my side. 

My legs are the ones carry her when she wants to walk but is too tired. 

My hand is the one that held as she slides down the ‘big’ slide. 

My arms are the ones that picks her up when she falls and lets her go when she flies.



The most amazing thing my body has done is something not for me, but for my beautiful Boo. 


Finish the Sentence Friday