Tuesday, May 29, 2012

Wordless Wednesday: Bee Buddies for Life

To wrap up our month of mommies... these two mommies met up for lunch in Atlanta this past weekend. It's connections like these that make the world seem a brighter place when parenting a child with such a rare condition such as hydranencephaly.



Mommies: Amy & Angela with little bees: Claire & Sophie

Friday, May 25, 2012

Flashback Friday: FRIENDSHIP, SUPPORT, EDUCATION, HUMOR


Flashing back to 2010 with this one that I originally shared at my first blog "Small Portion of a Life's Journey", even further back to 1996 for the attached post from Our-Kids.org


Another wonderful post I stumbled upon... hope you all enjoy as much as I. This could not be more true!! It answers the question we often can't answer when asked... as a parent to an extra special little one, that is. Most important to me today, is INSIGHT... to understand what Brayden needs when he can't speak a word. Hydranencephaly is such a mystery, and never knowing for sure is definitely my biggest struggle and it overtakes me at times.


Anyways, enjoy...






F.R.I.E.N.D.S.H.I.P. S.U.P.P.O.R.T. E.D.U.C.A.T.I.O.N. H.U.M.O.R.
by Andee Dunn (Jan.1996)


How do you do it? Well, in no particular order...this is what it takes:


FAITH... that God will never give me more than I can handle
RESOURCEFULNESS... to find what my children need
INTELLIGENCE... to comprehend all the medical & technical knowledge I'll be given
ENERGY... for all the many trips to doctors, clinics, hospitals, schools, etc.
NEIGHBORS... and friends that lend a hand now and then
DETERMINATION... that my children will each reach his or her maximum potential
STRENGTH... to continue in the face of depressing odds
HUMOR... to teach my children there's joy in life with special needs
INTUITION... to be able to know the right thing at the right time
PERSEVERANCE... so I can fight for the rights of my children


SUPPORT... from others that have 'been there' before me
UNDERSTANDING... for those times when they do what only multiples can do
PEACE... in knowing that I am doing my absolute best for my children
PRACTICALITY... so the dishes get done and the laundry too
OPEN-MINDEDNESS... when looking for the best therapies for each child
REMINDERS... so no one or nothing is forgotten
TENDERNESS... that I may not be too harsh when responding to ignorance


ENDURANCE... to get me thru the times when no one knows why it didn't work
DEDICATION... to repeat thousands of necessary therapies upon my children
UNCONVENTIONAL... so I can make use of something not usually used that way
CONFIDENCE... in my abilities to know what my children need
ACCEPTANCE... so I can thank God everyday for giving me such special children
TRUST... in myself and those I'm close to
INSIGHT... to sense what's needed by a child that can't tell me their needs
ORDER... so there is at least a basic plan each day
NURTURANCE... giving it and getting it


HUMOR... so I don't forget to laugh when they do something funny
UNRELENTING JOY... so I can feel it, teach it, and give it
MILDNESS... for those times when the kids are rivaling siblings
OPTIMISM... so I can see things from a brighter point of view
READINESS... for the unexpected


Yes, it's a lot! It's what I do, every single day, no weekends off. Our children are always going to need that special care. We provide it directly, or indirectly thru respite providers day in and day out, 365 days a year for the rest of their lives. We also have to help their co-multiple siblings to deal with these things.


And I wouldn't trade anyone, anything, for what I've got! Six wonderful kids: a surviving twin who will someday be on her own (as her days with intervention & therapies seem to be over); an undiagnosed special daughter who will always live with her weaknesses (but she has many strengths); a totally average daughter (that requires special care due to having five special siblings); a gifted son who will always have trouble seeing (and will miss his brother now & then); his co-quad sister who may never speak as we know it and will always be challenged by her lack of muscle tone; her identical sister who will not only battle with what she shares with her co-quad twin but will also need to cope with her potential loss of sight.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Andee Dunn (MOM to Bryana (7/82), CJ (11/85), Allyssa (7/88) and Mack (12/91), Rebecca (12/91) & Jessica (12/91) and married since 9/79 to SHAWN, the computer genius!)


E-Mail BooksnDunn@yahoo.com  You can reach all of us there!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thursday, May 24, 2012

Thankful Thursday: Littlest One


Too often parents of children with hydranencephaly, or any life-limiting, medically complex condition, find themselves being pitied and felt sorry for. In actuality, these parents find themselves in love with the little life they have been given and learn so much all along the way. Others should, instead, be envious of the miraculous little lives that these parents get to be a part of... as they have so many important lessons to teach along the way:


Image courtesy of Little Town Photography


Dear Littlest one,


With every breath you take, you take my breath away.
With every beat of your heart, my heart skips a beat.
With your every hour you fight, you teach me that winning takes patience.
With every tear you shed, I shed a thousand more.
With every gaze you give me, I see a clearer picture.
With every ounce you gain, I gain an ounce of hope.
With every step forward you take, I stand up taller with pride.
With every gentle grasp of my finger, you show me the true meaning of strength.
With every bit of your courage, you show me how to be brave.
With every day that passes, you teach me that time can hold a miracle; and this I know is true…for every time I hold you, I experience one.


You may be the smallest and hardest blessing I have had in my life, but you have taught me life’s biggest and simplest lessons. Lessons of hope, faith, and most importantly lessons of unconditional love.


Love always your mummy

Wednesday, May 23, 2012

Wordless Wednesday: Fly High

Fly high new hydran-angels... you are forever in our hearts!

^Kayce^
^Mya^

Thursday, May 17, 2012

Thoughtful Thursday


The Centers for Disease Control (CDC) reports that one in 33 babies born in the United States will be born with a birth defect... this number is not inclusive of those who are terminated prior to full-term, nor are statistics accurately portrayed with an international scope. So many mothers facing such difficult days... however, most of these mothers would agree that they were specially chosen to care for these amazing little beings:


The Special Mother by Erma Bombeck


Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? 


Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. 


"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity." 


"Forrest, Marjorie; daughter. Patron saint, Cecelia." 


"Rutledge, Carrie; twins. Patron saint, Matthew." 


Finally He passes a name to an angel and smiles, "Give her a handicapped child." 


The angel is curious. "Why this one God? She's so happy." 


"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel." 


"But has she patience?" asks the angel. 


"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it." 


"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy." 


"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect -she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?" 


God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a "spoken word". She will consider a "step" ordinary. When her child says "Momma" for the first time, she will be present at a miracle, and will know it!" 


"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side". 


"And what about her Patron saint?" asks the angel, his pen poised in mid-air. 


God smiles, "A mirror will suffice." 

Tuesday, May 15, 2012

Bee-worthy Share: Best Job in the World

Not many of us mommies ever grew up dreaming of becoming a mother to a child with complex medical necessities... though I did have a thought one day that since I could not think of one person I knew that had a child with special needs, I must be the "one" that will... and I was ok with that notion. 
Regardless of this premonition, my baby dolls did not ride in wheelchairs with feeding tubes nor did my play house include a pulse ox machine next to the crib or prescription formula bottles stacked up in the pantry. I may not have signed up for this job... but I feel so blessed to have been chosen. I am fairly certain that my special mommy friends would second that emotion, so think twice before you feel sorry for or pity our circumstances... we are perfectly happy with our job description, despite the rollercoaster ride it entails.


I Don’t Remember Signing Up For This Job…Special Needs Mom

Special Needs MomSo how did I get it?

You have this wonderful dream job you had in your mind as you were growing up.
You thought about it, you saw other people doing that job, they loved it and you couldn’t wait to do the same job.
Then one day there is a company that’s offering this dream job,  Special Needs Momyou go stand in line with all the other moms applying for this job.  You hear it’s the best job in the world!  
They hand you the job description and tell you congratulations – you are now a MOM! You are so excited, finally your dream job, the one you prepared for all your life.  You start to go about your job, but then you notice all the other moms, that stood in line for the same dream job aren’t doing the same things you are.  You seem to be doing more then them.  Why? You couldn’t understand why since you all stood in the same line.
Then you look down at your job description and you realize oh my gosh, there is an additional task, aspecial task on your list that isn’t on their’s.  That additional task is entitled … Special Needs Mom.
You wonder what does that mean, I never trained for that.  I have Special Needs Momheard of it, but that’s not the dream job I applied for.
This wasn’t fair!  Then you start to wonder why me, why out of all the women in the line did I get chosen to be a special needs moms?  I want to be like them, I don’t want the special in front of it.
I don’t want all the extra work that comes along with being a special needs mom, like being a therapist, a medical professional, nurse, advocate.
Then I decide to go to the HR Manager to talk about the following:
  • I want to be understood and heard, I don’t want to be isolated when I face my daily challenges or tasks.  I want the other moms, to hear my pain and know my struggles.
  • I want them to understand that  I am doing the best I can to cope with all the demands that are being placed upon me by my child as well as my family.
  • I am also dealing with all the different comments and stares, some of the stares are kind – they smiles, but the rest are looks and shrugs that are tossed my way because my special needs child is in their presence.
  • I want them to know that our daily struggles with a child with special needs are far more amplified then that of what they are experiencing.  The challenges as intense as they may also be prolonged and constant, and every aspect of my families life is affected.
So I look at the HR Manager with tears in my eyes and big lump in my throat and ask “can I find another job, I don’t think I am strong enough to handle this job.”  Then even before the HR Manager could open his mouth, I heard a little whimper, and felt a little wiggle as  Special Needs Mom   I look down at this beautiful innocent face looking up at me.
This amazing child is why God blessed me with this special job, why he gave me this special task of loving him, caring for him, protecting and nurturing him, because I am strong!
So I caught myself and looked up to the HR Manager and just said “thank you for your time and  this wonderful opportunity you have given me.  I am a much better person for having such an amazing job, that of a Special Needs Mom and I wouldn’t change it for the world!”
Part of healing for any mother especially those that care for a child with special needs is the notion of resilience: being knocked down several times, but getting back up each and every time.  Facing the challenges and accepting the reality.  Getting up and recognizing your successes and your growth are all apart of the healing process and will allow you to move forward in your very special job of being aSpecial Needs Mom!
Congratulations you are part of the elite!

Monday, May 14, 2012

Bee BUZZ: In the News



We first shared about sweet little Natan Shai in our Bee-ography series in August 2011, read his story HERE if you missed it.


Back in January 2012, his amazing mother Hannah shared his story in the largest Jewish magazine in the world, Mishpacha Jewish Family First, which reached over 250,000 individuals across the globe. First, here is a brief synopsis of the interview with the article's author Shira Yehudit Djlilmand:


A Beautiful Gift
Shira Yehudit Djlilmand | Wednesday, January 25, 2012

When Hannah Levi first told me about her foster son, Natan Shai, she emailed me the following: “He is now four and has an acute awareness of his family and surroundings, and his smile is simply a ray of sunshine that can warm the coldest heart. He walks in his ‘Hart Walker,’ makes sounds, laughs, and can say ‘Amen’ (this is his only word!). And all this without a brain!”

She didn’t emphasize all the things he couldn’t do — and will probably never do. She focused on his successes, and most of all, his wonderful smile. This is something, she told me, all children with hydranencephaly have.

And so when I went to visit Natan Shai at his home, despite being a little apprehensive of what I should say to a child with almost no brain, I was expecting the smile.

I wasn’t disappointed.

As soon as I walked through the door, I was greeted by a smile that took up Natan Shai’s entire face. And throughout the visit, the smile was often seen, along with delicious giggles that convinced me that what Hannah had claimed was true — that Natan Shai, despite all of his mental and physical disabilities, enjoys life.

“This kid,” Hannah says, “has so many problems, but he has a light in his eyes that tells me he wants to live forever.”


Below find the rest of the article as shared with me from Hannah, and transposed from pdf file with permission to publish here on our blog. Originally in print the week of January 18, 2012 in the Family Feature section of Family First, pages 27-31.

For children born with hydranencephaly, a rare condition in which all or much of the brain is missing, the prognosis is usually gloomy–death by age one. but then there are children like 4-year-old Natan Shai, who are beating all the odds and bringing great joy to their Families. 


When Hannah Levi first told me about her foster son Natan Shai, she emailed me the following: “He is now four and has an acute awareness of his family and surroundings, and his smile is simply a ray of sunshine that can warm the coldest heart. He walks in his 
‘Hart Walker,’ makes sounds, laughs, and can say ‘Amen’ (this is his only word!) And all this without a brain!” 


She didn’t emphasize all the things he couldn’t do — and will probably never do. She focused on his successes, and most of all, his wonderful smile. This is something, she told me, all children with hydranencephaly have. 


And so when I went to visit Natan Shai at his home, despite being a little apprehensive of what I should say to a child with almost no brain, I was expecting the smile. 


I wasn’t disappointed. 


As soon as I walked through the door, I was greeted by a smile that took up Natan Shai’s entire face. And throughout the visit, the smile was often seen, along with delicious giggles that convinced me that what Hannah had claimed was true — that Natan Shai, despite all of his mental and physical disabilities, enjoys life. 


“This kid,” Hannah says, “has so many problems, but he has a light in his eyes that tells me he wants to live forever.” 


Receiving the Gift


Natan Shai arrived in the Levi home as a much-awaited gift, after the family had been waiting many years to foster a special-needs child. 


“We first wanted to be a foster family 15 years ago, when we had just 2 small children,” Hannah says. “And we wanted a special-needs child. We were neighbors of the Ben Baruch family (a Tzfas family that has fostered a number of special-needs children and has been featured in Family First – ed) and were very inspired by their example. Also my mother worked with autistic children in a boarding school and often brought them home on weekends so I got a good understanding of special-needs children. 


“We took the course for potential foster families, but then our rav told it wasn’t the right time to foster, so we waited. We had more children. When we had five children and our youngest was four, we asked our rav again, and this time he gave us a blessing to go ahead. We had a few offers but they didn’t work out. Fostering a child is just like making a shidduch – it’s not like going to a supermarket and picking a child off the shelf.” 


Over a year later, the Levis got a call from a social worker. 


“She told us they had a baby who’d been abandoned at birth. He looked normal, they told us, but they knew from postnatal ultrasounds that he was brain damaged. No one ever mentioned the word ‘hydranencephaly’ to us.” 


Natan Shai was born at 23 weeks, weighing just 900 grams. He’d been in an incubator for three months when the Levis got the social worker’s phone call. 


“The hospital had little hope for him, although they did everything they could to keep him alive. The doctor said something about hydrocephalus [a different condition in which the brain fills up with fluid, often confused with hydranencephaly— ed.] but nothing about a prognosis. And to be honest, we were so euphoric at that point we didn’t really think about the future. We just loved him. He looked completely normal, except that his head was oversized and his eyes went off to the side a bit. We had no idea how serious his condition was. 


Hashem must have arranged it that way because He wanted us to fall in love with him before we found out.” 


In just three days, Natan Shai was part of the Levi family. 


“We heard about him Monday, went to see him Tuesday, fell in love with him on the spot, and took him home Wednesday.” 


The Levi children were thrilled; they’d all been asked if they were willing to accept a special-needs foster child, and were excited at the opportunity. He was given a bris and named Natan Shai, which means ‘give a beautiful gift.’ Just a week later, he was taken for a shunt operation, in which a tube is inserted to drain the fluid from the brain into the stomach. The operation went smoothly and dramatically reduced the size of Natan Shai’s enlarged head. He came home three days after the operation. But a few days after that, he became ill. 


“He was throwing up, had a high temperature, and seemed really sick, so we took him straight to the Rambam hospital emergency room; we thought the shunt might be blocked. But it turned out he had streptococcus in his blood, a dangerous condition probably contracted during his operation. He was in the hospital for a month, which, although it was very difficult for us, was a special time of bonding. But it was only then that we found out his real condition. 


“‘Don’t you realize what you’ve taken on?’ the doctor there asked us. "This baby won't live more than a year."


‘This kid has so many problems, but he has a light in his eyes that tells me he wants to live Forever” 


“We were in shock. Only then did I look closely at all his papers, in technical Hebrew, of course, and saw the word ‘hydranencephaly.’ Then I looked it up online. I sat in front of the computer and cried. 


“I wasn’t crying for me, I was crying for him, realizing he was going to be 100% disabled. One of the first things I did after that was get in touch with a support group for parents. I heard from the group that lots of parents are told terrible things by doctors but reality often wasn’t as gloomy as their predictions. I found out that there are children with hydranencephaly still very much alive even at age 22. That gave me hope.” 


Seizures and Smiles


A CT scan established that over half of Natan Shai’s brain was missing. Some children with hydranencephaly have no brain at all but only the brain stem. How such a child functions, both physically and mentally, varies greatly and it is still not fully understood how the brain stem takes over some functions of the absent part of the brain. 


Natan Shai, like most children with hydranencephaly, suffers from cerebral palsy, a condition which causes his muscles either to freeze up or to collapse so he has no control over them. 


And like most hydranencephalous children, he’s prone to pneumonia — the leading cause of death for these children — and has been hospitalized for pneumonia a number of times. He also suffers from seizures, now mostly under control with a medication used to treat epilepsy. 


Natan Shai has great physical disabilities. He’s about the size of a two year old, and although he can take steps in his special Hart Walker, which supports his entire body, physical actions apart from that are difficult. He tries to feed himself but often as not 
the spoon falls out of his hand; but his attempts demonstrate his indomitable willpower. 


What’s incredible is how Natan Shai interacts with the people around him. “He can make sounds,” Hannah tells me. “The only word he can say is ‘Amen’ but he says it totally clearly, maybe because he hears us all saying it out loud. He understands language – 
they said he’d be like a vegetable, but I think he understands everything." 


“He knows exactly how to grab attention too. He talks with his eyes and his smile… he can say anything with his eyes! For example, he adores my husband and always wants to sit on his lap, so when my husband comes home, Natan Shai starts giving him that special smile that clearly means ‘Pick me up!’” 


I saw this in action myself when I visited Natan Shai. When his father came home, Natan Shai’s eyes never left him, and once he was sitting happily snuggled up beside him, his smile never left his face, except when his older sister got a hug from her father and Natan 
Shai showed his disapproval strongly by making a lot of noise. 


“He’s very spoiled,” Hannah admits. “We all spoil him, and he objects if the other kids get attention; he thinks he should get it all! But he never shows anger; he has such a pure soul. He’s always happy and giggling. He does cry from no one but hashem knows how long Natan Shai will live, but if love has any influence, his life will be long."

Information on Hydranencephaly obtained from NINDS; National Organization 
for Rare Disorders; and the Brayden Alexander Global Foundation for Hydranencephaly 


Although Hannah never let one word of complaint pass her lips, looking after Natan Shai cannot be easy. “Since I got him, I haven’t slept through a single night. I wake up at 
least four times a night — sometimes he has cramps, sometimes he wants a drink. Sometimes I don’t know what he needs so I just sit with him or walk around.” 


In astonishment and shock, I ask Hannah how on earth she manages to function during the day. “Hashem gives extra strength, and I function fine. I could give Natan Shai sleeping 
medication but he’s already on so much medication already I don’t want to give him more if I don’t have to.” 


Hannah and her family are actually coping so well that only a year after Natan Shai came into their lives, they fostered yet another brain–damaged baby, who is still with them. 


looking to the future 


With such a level of brain damage, where in fact the brain isn’t actually damaged but simply non-existent, one might think that it is impossible for a child with hydranencephaly to develop either physically or mentally. But that’s just not true, claims 
Hannah. 


“Natan Shai has slowly, but surely, developed over time. His understanding of language has definitely developed. For example, if we say the name of one of the other children, 
he’ll look at that child. If we say ‘aquarium,’ he looks over at the fish. He’s also developed a great emotional awareness; if one of the other children is crying, Natan Shai feels his pain and cries right along with him. He is all light, totally light.” 


The Levis hope that Natan Shai will develop further in the future. He attends Rechisim, a totally chareidi school in Haifa for severely brain-damaged children from age 4 to 21. Natan Shai is kept active all day with occupational therapy, physiotherapy, music therapy, animal therapy, and activities related to the Yamim Tovim, etc. He comes home 
with a book describing what he did that day, and when Hannah reads it through with him, it’s clear from his smiles and giggles that he has a great time there. The mentality there is: “There’s no such thing as ‘can’t improve.’” 


“They hope to teach Natan Shai how to speak by using his eyes,” 


Hannah tells me excitedly, “and I think he can do it.” 


Having a brother like Natan Shai had a strong impact on his siblings. Hannah tells me about the time she took her kids to a wedding where there was a mother with a clearly 
brain-damaged little girl. 


Hannah’s children quite naturally went up to the little girl and were soon playing and laughing with her. Then Hannah spotted the mother, weeping uncontrollably. Worried 
that her children had done something to hurt the little girl, Hannah quickly went over to her. 


“I’m fine,” the mother assured Hannah, through her tears, “I’m crying because this is the first time in her entire life that anyone has ever, ever come up to my daughter and played 
with her.” 


No one but Hashem knows how long Natan Shai will live, but if love has any influence, his life will be long. 


“We have to look at the future positively; we have to believe that, b’ezras Hashem, he’ll live a long time,” 


Hannah tells me, seriously, “because Natan Shai is so much a part of us that not one of us can imagine life without him.” 


Hannah and Naor Levi can be contacted through Mishpaca Jewish Family First www.mishpaca.com 




Sunday, May 13, 2012

Saturday, May 12, 2012

Mothers Day: What I Would Say

Being given a diagnosis of hydranencephaly for your child is no less than one of the hardest bits of news you will ever hear... The fact that it is delivered in such a horribly, pessimistic manner by medical professionals, makes it that much harder. Many parents are told during pregnancy, that their child has a severe brain abnormality and/or is missing most of the components of their brain that make life possible; that their child will not survive to term. Other parents are delivered the diagnosis after delivery, many times after being told throughout the pregnancy that they should terminate as the condition is not compatible with life.

As for me, I was told that my baby would not survive to term so termination was our only option. Once that idea was dispelled, the typically  joyous months of pregnancy were replaced by doctors appointments that were made primarily to see when he had passed... that's what we waited for. When he didn't, he was diagnosed with hydranencephaly at birth. Then we were simply told he did not have a brain & he would pass within days, a couple of months at the most. He would never recognize anyone in his life and would suffer with seizures and pain throughout.... he would never eat, he would never maintain his own body temperature, and he definitely would never show me that he loved me.

This things are absolutely false. I have yet to be in contact with a family who this prognosis has proven true for. Even those children who have passed in infancy have contributed such joy and happiness to the lives they have touched... most while never speaking a word, of course, but still shining in the lives of those who love them.

In honor of Mothers Day in the US tomorrow, we are sharing some quotes from the professionals... those who know the facts, as they have lived through them, the mommies. Those things they wish they had been told from the beginning, instead of being told "take your child home to die." May you take these words to heart & pass them along to those in your life who may face the same, or similar, circumstances in the future or even now.

"I would say that even though you may hear a lot of scary things about what your child's life will be like—even if many or most of those things do actually end up happening to them—that's not what is most important. Their inner strength, their achievements, the joy they get from simply existing: these are the things that make it all worth it. Everything else is just incidental." 

~Devoney, mother to angel ^Xavier^

"Don't believe all the doctors tell you go with your gut instinct and always believe you know your child best . Definitely ask other hydran mommy's advice when your child does something new you have not seen before . That was so valuable to me in my journey because someone always had been their before us and when panic was setting inside, when the doctors did not know what to do their advice brought hope and strength to challenge and fight for my child." 
~Gisela, grandmother to angel ^Megan^ and founder of Megan's Flutterby Fund

"I wish I had known what HOPE there was! Seek out support and information from every source you can! Take the best of it and leave the rest of it! LOL Also, definitely don't listen to everything the doctors tell you - your motherly instinct will often be right on the mark! No one knows your child the way you do, and don't let the doctors tell you otherwise!"
~Angela, mother to Chrissy & Sophie

"Although your heart is broken now, it will be pieced back together and made stronger than ever. You will have the support you need to care for, love, and raise this beautiful blessing. Through tear filled eyes you are about to encounter a whole new world. This journey is going to change your life forever. With love and support you will realize the true meaning of hope. Clinging to this hope, you will see your son do great things. Nothing is impossible. Since nobody has a crystal ball, enjoy the journey day by day. Keeping the hope in your heart is a lot easier when you take time to enjoy the blessings in life, and you are about to encounter many."
~Katie, mother to Johnny

"I wish I had known that all the questions I was asking the doctor, couldn't be answered properly cause the doctors didn't know the answers and their book of answers was so so wrong, and was actually never right, so instead of telling me to take him home, and get help to prepare his funeral, I should have been told to take him home and prepare to watch my little miracle prove their books wrong. Praise God that was 17years 5 months ago, and I am so thankful every day for my miracle boy. So I wish I had not just waited every day for what they said would happen."
~Avril, mother to angel ^Mark^ & Philip

 "Always go with your gut! Everyone can put there input but it is your child, your angel! You do what you think is best for them! Speak up and don't let others tell you what you should or shouldn't do for your child!"
~Amanda Johnson, mother to Abel

As for me, I am always perfectly clear on my views on this diagnosis and its delivery. While I understand that doctors must be realistic... a more optimistic approach should exist. When thrown a printed pamphlet of paper from google, with the words "Prognosis is death within the first year" highlighted... I wish I hadn't even fathomed that as the only outcome of my little man's life. Brayden will be 4 years old in just over a month. I spent the first 3 months of his life crying and waiting to say goodbye, just as I was told to do. Instead, I should have been looking at all of the signs that pointed to the fact that he is LIVING and not suffering. Thankfully his personality shines above any label he can be given, and he reminds me with the biggest smile on the planet of his sincere joy and happiness. 

More than anything, this makes me sad for those parents who were unable to dispel the doctors "professional advice" and were convinced to terminate... not only are our little ones LIVING with hydranencephaly, but there are parents who would love to provide the best quality of life possible to those whom's parents do not feel strong enough to do so. Instead of termination, adoption should be the first option. 

I'm also so sad for those parents who have had to say goodbye, far too soon. While our little ones do defy all odds against them, just by living for a day, we have to accept the fact that their lives will be short... then again, forever is never long enough to a parent. 

If you take nothing else away from this post, please take this to heart: that these children are given an opportunity to live a life, just as is planned. While it may not be the life we intended, nor the life we would wish for them, it is life nonetheless. 

And in honor of mothers day, which should be in recognition every day, have faith in small things. There are so many miraculous events happening in your world that often go unnoticed. Appreciate those things, whether they annoy you or ruin your days... there is a mommy out there who would give her own life to experience those things.

Friday, May 11, 2012

Flashback Friday: Mothers Day



From Small Portion of a Life's Journey, Alicia Harper, Mothers Day 2011


"There is no such thing in anyone's life as an unimportant day." 
~Alexander Woollcott

Today just happens to be a very IMPORTANT day, but sadly a very difficult one to many mothers as well. Those mommies who do not get to hear their special child say, "I love you," or get an extra special hand-made card painted with their favorite lip gloss and covered in glitter; or even harder, those who do not even get to hold their angel child today as they celebrate the day parted by the heavens and long to just be able to breathe them in one more time... those are the mommies that find today bittersweet. My thoughts are with those mommies. Though I also get the lip-glossed glittered card, I'm one of the first mentioned mommies... one day I'll likely find myself as one of the latter mommies. 

I find today even more so bittersweet than some... Some mommies have one child, a child with special needs that has limited abilities, limited mobility, but is not shy on showing their love and that makes today just like every other day... no less important than the last, which is more so good than bad. Some mommies have healthy, "typically" developing children that are capable of making today a surprise for their ever-loving mother... while possibly taking for granted that today has come & they can share it with their children. I'm stuck in the middle with both, two children who are upstairs as I type planning a surprise in one of their bedrooms, loudly "whispering" which colors to use and when to surprise me in bed (the surprise will be on them when they only find their dad)... and one who is fast asleep in his crib, breathing peacefully in his dreamland, while completely oblivious to the importance of the day. I know he will awake soon and give me the most joyous smile when he sees my face, today will be just like another day.

From the blog Unhandicapping the Disabled Life last year on this day:

Mother’s Day, I always figured, aught to be a celebration of what being a mommy should be about, every day….the love we have for our children, and the love they have for us. The truly sad thing is that while in special needs families both parents and children need to feel the value of that priceless affection all the more, sometimes it proves all too difficult to call to the forefront. Mother’s Day seems to rub salt into those battle wounds, because of a tendency to think of the holiday as not so much being about acknowledging and celebrating what mothers do, but about paying tribute to notions of what mothers are due. And, some feel, what validation are all a mothers efforts due, if not a certain kind of child?! — A certain, societally-determined-as-ideal kind of child….which, in families with special needs children, the child, by societal standards, inherently is not.

Oh dear.

Breaking out of that dangerous mold means dodging some sharp edges of the shards then readily scattered underfoot. First off, there are all the adds — diamonds are popular this year, barely beating out luxury spa weekends, but seeing surprising competition from excruciatingly overpriced flowers and desserts — which strive to convince us that our self-worth as mother’s has a monetary value, generally in the denomination of plastic. Not a great many special needs families can afford a few of the seven deadly sins just because they are pervasively encouraged/advertised, however. That would make it easy to turn from consumerism to sentimentality, but of course, nothing comes easy in special needs families, does it?

For every woman showing off the high-priced prize she was awarded this year out of their husband’s wallet, there are ten others bragging about the priceless gestures handed over with crooked smiles by their children’s little hands. Daycares, schools and clubs have probably spent the week having the kids making guided projects, to bring home. Inspired husbands might have plotted elaborate schemes involving taking a son or daughter to the store, giving them a certain amount of money, and having them pick out a present for mommy….or bravely having them carry the tray of breakfast-in-bed that they “helped” prepare. But what if the only artwork your child is capable of yet, involves things their fingers were never supposed to get into, and a frenzied clean-up job with a lot of sanitizer? What if they can’t grasp the concept of picking things out thatother people would want — assuming taking them to the store isn’t more likely to be a suicide mission than a covert operation, anyway? What if the kitchen still needs to be baby-gated, and they can’t carry things without dropping or flinging them? What if your child can’t say, “Happy Mother’s Day!”….and if they can, you could tell that the words are meaningless to them? What if, for whatever reason relating to your child’s special needs, all those Hallmark moments feel as unattainable as this year’s “Show Mom You Care” big-ticket item?

My advice is to let all that go, along with the guilty debate over whether you should wish for the day off from how the days of mommying tend to go, or an idealized day of mommying such as you ordinarily don’t even attempt. Just let it go. Mothering isn’t really about what, and when, and with what you do things, and whether or not they are what anyone else thinks should work. Mothering is about how we do things, in our efforts to make things work always that little bit better. 


I kind of feel ok with where my journey in mommyhood has brought me. It took me a long while to get here, but I no longer feel like I'm juggling the life that was expected and the life that I have unexpectedly fallen in to... In fact, this journey has certainly brought me to a place much higher than ever anticipated and in touch with some of the most inspiring, wonderful, amazing mommies on the planet! Thank you to those mommies, from another mommy, for helping me find this place.

Well, even if he can't say it and he had help making it. And even if he couldn't give it to me while shouting, "Happy Mothers Day" from behind the couch... I feel his love, it's in his eyes, in his smile, and in everything he does.

Cup of Tea for Mommy & Me
Proud of his flowers he grew at school

Thursday, May 10, 2012

Thoughtful Thursday: Those BLUE Spots

I know you've seen these spots, everywhere you go... these beautifully painted parking spots, generally in blue but sometimes even white, that are for those with registered disabilities that seem to NEVER fill up, which brings the temptation to park there out of convenience because, "I'm only going in for one minute."

Sadly, this is an often overlooked violation of the law... with little repercussions being doled out, people are quite comfortable taking the risk. Nevermind the roughly 45 million Americans who are disabled and NEED these parking spots... spots that DO fill up, sadly often with the help of those who are not disabled.

There have been two instances that I have received a small piece of paper on my windshield reading something to the affect of:

"You're obviously NOT handicapped, so save these spots for those who are."

One included some choice rated-R words as well.

Highly offended?? YES! I hope everyone is educated enough to understand that disability takes many forms, many of which are undetectable from afar: congestive heart failure, joint problems, emphysema, cancer, paralysis... and yes, even being a parent to a child with hydranencephaly or other similarly debilitating conditions.

I was extremely hesitant to even apply for a handicap placard, even after being advised by my own son's pediatrician that I should for his safety and my own convenience. Why the hesitation? Because I am not handicapped & am perfectly capable of taking those extra steps to enter wherever it is I need to go.

Then I realized:

It isn't only about the steps, it's the extra room for loading and unloading and the amount of time spent in extreme weather.... my little guy, for example, does not control his own body temperature well at times; sometimes staying around the mid-80's or rising above 100 for no good reason!

While I still have a difficult time using Brayden's placard, I have managed to swallow my pride and do use it when I need to... when parking is difficult, unsafe for loading/unloading, and in the aforementioned extreme weather. These spots are sacred to those who truly need them to carry out the tasks of their day, they're not simply a convenience to whomever wants to take the offer. So, please don't be that person!


At the same time, there are people who DO take advantage of handicap privileges by either using a family member or friend's approved status for parking or just hoping that they will not get caught parking in these designated spots without any sort of reason.... a pretty safe bet, in most instances, since this law seems to be the most overlooked of them all!


There are even rules for availability of these parking spots, rules that are pretty well defined since the Americans with Disabilities Act went into effect in 1990. First there are the architecture rules which map out the percentage of spots there need to be in a parking lot. 

They are roughly like this:
~1-25 overall parking spots, 1 HP spot
~26-100 parking spots, 5% HP spots
~over 100 parking spots, 2% HP spots

Placards, as well as permanent license plates, are received from the Department of Motor Vehicles who require a doctor's attestation except in some cases if it is not an obvious, visually-identifiable disability to a normal DMV worker. You cannot just stroll in there and apply without confirmation that this is a necessity.

So, instead of worrying over the fact that myself and my little cutie (who is obviously in a wheelchair, by the way) are not deserving of that special spot with extra space to the side for loading and unloading purposes... please look for those who are sincerely abusing these privileges and then report them! Not sure how?? There are apps for that:

Handicapped Parking Fraud
How Does it Work?
This site (HandicappedFraud.org) depends upon you to help in the effort of bringing attention to the offendor/s. When you see an offense:


~Don't confront the person. These people may be handicapped, and we don't want to create any hassle for them. Or, they may be law breakers, and could become very agitated at being pointed out.
~Record their license plate number
~Record their placard number (on the placard itself)
~Leave a post-it note on their car that says they've been reported at HandicappedFraud.org (available free from the site)


Our goal is to have hundreds or even thousands of uploads at the end of every month. A report will be generated and sent to each state's DMV. It is then DMV's opportunity to see trends from these reports, and track the placard number to the Doctor and patient. If abuse is detected, fines may be issued, and placards revoked. Both of these will bring awareness and change to this rampant problem.


When violators are caught red-handed, an officer can issue a ticket for $250.00 - $3,000.00 and they can be jailed for up to six months.


Then there is also Parking Mobility, complete with a handy FREE APP:


Parking Mobility



We Need Your Involvement!
Parking Mobility’s goal is to make communities more accessible by working with cities to improve disabled parking enforcement. To accomplish this, we need your continued help in the following ways.


Tell People!
The more people using Parking Mobility to report violations, the bigger our impact will be. Each additional user means more violations reported…more visibility of the issue…and a better argument in convincing your city to adopt Parking Mobility. Tell your friends, family, and charitable organizations looking for funding! In addition, please log in to the Parking Mobility website and link your Facebook and Twitter accounts. Once your social networks have been linked, Parking Mobility will post on your Wall and send a tweet each time you report a violation. This lets your network know you are using Parking Mobility and encourages others to get involved.


People do not need to have a disability to use (or want to use) Parking Mobility – they just need to appreciate the benefits: improving access for those with disabilities and raising money for their favorite charity!


Get Your City On Board!
We have thousands of users all over the world using Parking Mobility in over 140 cities, which is amazing. We need each of these cities to partner with Parking Mobility in order for the violation reports to be processed as tickets by the city. We are looking for individuals to work with others in their community to get each city to adopt Parking Mobility. If this sounds daunting, remember that your city government exists to respond to the needs of the community – and disabled parking is a huge need which has been overlooked. You are not alone, Parking Mobility can connect you with other organizations in your city who want to get it in place. Click here to find out how to get your city to adopt Parking Mobility.


Report Violations!
Keep reporting those violations and make your voice heard. Each violation you report makes a difference – improves accessibility, changes behavior to respect disabled parking and raises money for your favorite charity (20% to one of the 4 represented).


In case you're still unsure about these violations and how often it occurs, be on the lookout for this:
 
which happened to me personally, just days ago (though this photo was found via google on a paraplegic's blog about the perils of parking a handicap accessible van). Those perils are daily obstacles for others who rely on wheels to move, and not only the automobile variety. Our mobility specialist for Brayden's wheelchair and other necessary equipment has told me of many instances that he was literally trapped in or out of his car due to another's  inconsiderate actions... he's  in a wheelchair himself. 



"Being considerate of others will take your children further in life than any college degree."
~Marian Wright Edelman




Tuesday, May 8, 2012

Wordless Wednesday: Mommy & Bee

BUZZ: In All Honesty...




If only it were so easy... 


Via our Family-to-Family Resource Network, the most active support system on the web for families faced with a diagnosis of hydranencephaly, there have been many instances of families receiving such horrible, devastating news from doctors who really seem to have a different outlook on little ones with hydranencephaly... an outlook that really isn't much of an outlook at all, but rather a pretty dismal prediction. We all realize that doctors exist to provide a medical perspective on all things that ail us, but why should it be so horribly delivered each and every time? And even more puzzling is why the many "miracles" that exist are written off as figments of imaginations that run wild in parents that are clearly (according to the professionals) in shear denial of the "facts"...


I'm not entirely sure that doctors always know how to be honest, without being overly critical and/or harshly demeaning. For example, if they do not know the answers, why not just admit it... why can't they simply say, "I don't know!" I wouldn't be offended, they're human and not Google... they're not expected to know everything on the planet. And being the parent to a child living with a rare condition, affecting one in 10,000 births such as hydranencephaly, I expect most people to not be entirely sure of the circumstances and especially to not have all of the answers. Instead of feeding me a full paragraph of nonsense that doesn't really accomplish anything beyond totally ticking me off, and stripping me of the strands of hope I'm clinging to, please just swallow your egotistical pride and admit that you haven't got the slightest clue what to expect and you definitely do not know how, why, or when so-and-so is going to happen! It's perfectly ok by me...


So, here's an article explaining Why Good Doctors Give Useless Answers from Dr. D, MD... that's right, straight from the horse's mouth:


Why good doctors give useless answers
by Doctor D, MD

Before he tells you how to get a straight answers from physicians, Doctor D is going to stall for time by explaining why doctors give vague answers.

Why would a good doctor give useless answers?

1. There is an answer, but your doctor doesn’t know it. Don’t be hard on doc for this one. There is no MD in the world that knows the entire breadth of medical knowledge. Some docs pretend they do. Trust me, they’re faking it. While it may not help you “I don’t know” is a refreshing answer to get from a doctor. MDs don’t often admit this.

2. Your doctor knows the answer, but it is too complicated to explain. A lot of the physical processes doctors think about are pretty complex. Translating all the technomedical concepts into layman’s terms to sensibly explaining it would just take a lot of time and bore you to tears, so the doc just gives you a vague answer instead.

3. The answer depends on a lot of variables. Predicting the course of an illness or recovery can be tricky. A lot of things that are in our control and out of our control can make a straightforward “here’s what to expect” answer impossible. Doctors are busy. It would take a lot of time to explain all the variables. So they often dodge any answer that asks they explain the future.

4. There is no answer. You’d be surprised how many of your questions just don’t have have answers. Doctors have no idea of the answer and no good way of finding out. Sorry! Most patients (and quite a few doctors) get unnerved at the amount of real uncertainty in the world of medicine. We often cover the uncertainty with total bullshit. We make up things that sound intelligent. For example: “Probably a virus …” is secret doctor code for “I have no idea why you feel this way, but it probably isn’t serious.”

5. The answer went right over your head. The doctor did answer your question. Doc just said the answer in technomedical jargon that made no sense to you. While you may have technically gotten a “straight answer”, the doc replying in a foreign language you don’t speak really doesn’t count.

6. The answer doesn’t matter. “Look, you patient, I give out info on a need-to-know basis, and you don’t need this answer!” This is probably the root of all vague, dodgy answers given by doctors. We don’t think the answer is important for you to know. It won’t make a difference. Answers take time and energy that might be spent on something productive. “Trust me, if you needed to know the answer I would have told you already!”

All doctors dodge questions!

Doctor D does it too. Some questions really aren’t as important as others. We are busy and if we took all the time to answer every question we wouldn’t be able to actually help many people with with what’s wrong.

And not everyone wants the full answer.

As a young physician, Doctor D actually tried to fully answer every patient’s question. He looked up answers. He explained complex medical processes and variables. He educated people on uncertainty. And you know what … nobody liked it! Patient’s eyes would glaze over. Doctor D was constantly running late. His patients didn’t always want to get the full answer.

When he switched to need-to-know answering his efficiency improved and his patients were happier. Yes, a lot of people are very satisfied with vague meaningless answers. Not everyone needs the full truth. Some people just needed to know I heard their concerns.

But, obviously not everyone is happy with non-answers from doctors. Doctor D’s email is full of desperate patients complaining that their doctors really aren’t answering their burning questions.

So we have a problem.

Full, straight answers to every question would take so much time and energy that the medical system would grind to a halt, but some of your questions need full answers.

Doctors try their best to help filter what answers you need most, but in the end it is only you who can say what you really need to know.



To the doctors I see: I assure you, that if I take the time to ask the question... it's a need-to-know basis, not for my waste of precious time or energy expulsion! I do not believe that the doctor should determine what I do and do not need to know, especially when it comes to my medically fragile child. How do you feel about this? Would love your input in the comments below...

Sunday, May 6, 2012

International Bereaved Mothers Day





What Makes a Mother


I closed my eyes and thought of you,
And prayed to God today. 
I asked what makes a Mother, 
And I know I heard him say: 


A mother has a baby, 
This we know is true. 
But, God, can you be a mother, 
When your baby's not with you? 


Yes, you can he replied, 
With confidence in his voice. 
I give many women babies, 
When they leave is not their choice. 


Some I send for a lifetime, 
And others for a day. 
And some I send to feel your womb, 
But theres no need to stay. 


I just don't understand this God, 
I want my baby here. 


He took a breath and cleared his throat, 
And then I saw a tear. 


I wish that I could show you, 
What your child is doing today, 
If you could see your child smile, 
With other children who say: 


We go to earth and learn our lessons, 
Of love and life and fear. 
My mommy loved me oh so much, 
I got to come straight here. 
I feel so lucky to have a mom, 
Who had so much love for me. 
I learned my lessons very quickly, 
My mommy set me free. 
I miss my mommy oh so much, 
But I visit her each day. 


When she goes to sleep, 
On her pillow's where I lay. 
I stroke her hair and kiss her cheek, 
And whisper in her ear. 
"Mommy, don't be sad today, I'm your baby and I'm here."


So you see my dear sweet one, 
Your children are OK. 
Your babies are here in My home, 
They'll be at heavens gate for you. 


So now you see what makes a mother. 
It's the feeling in your heart. 
It's the love you had so much of, 
Right from the very start. 


Though some on earth may not realize you are a mother, 
until their time is done. 
They'll be up here with me one day, 
And you'll know that you're the best one! 





When Mother's Day Hurts 
By Karla Helbert, MS, LPC, Grief, Loss & Bereavement Topic Expert Contributor


Mother’s Day is observed by many as a joyful day of celebration, a time when hardworking mothers can have a chance to put our feet up, relax, be treated to breakfasts in bed, special lunches or dinners, given special consideration. We might receive gifts lovingly chosen or perhaps handmade by our children and partners. The day may hold special times set aside for visiting with or talking to our mothers, perhaps making up for time we have been apart, busy with our lives. The idea of Mother’s Day in our culture is painted as brightly and sentimentally as any Hallmark commercial.


The truth is though, for many, Mother’s Day can be a painful and difficult day. Women whose children have died at any age, women experiencing infertility, women who have had miscarriages, men, women and children whose mothers have died—for these and others, Mother’s Day can be a day of sadness and loss. In grief, many days typically perceived as happy or joyful times are experienced by the grieving and bereaved as sad and isolating. Bereaved mothers are faced with the experience of seeing other mothers interact with their children, of watching seemingly happy, intact families go about the daily ordinary business of life. People whose mothers have died hear other people speak casually about day-to-day interactions with their mothers, or watch mothers and daughters shopping or lunching happily. We are faced with the barrage of Mother’s Day commercials created to tug at our heart strings (and of course, urge us to open our wallets); and in all those things, so much of the grief we experience is the grief for that which can never be our reality. Each person’s grief, and his or her response to the pain of grief is always highly individual, but no matter what, if you are mother whose child has died, or, if you are a child whose mother has died, Mother’s Day is a sad time.


For women whose children have died, it can almost go without saying that Mother’s Day is deeply painful, and because of that, it should never go without saying. If you know a mother whose child has died, at any age, please acknowledge her motherhood as well as her pain. The greatest gift for a bereaved mother on Mother’s Day can be the simple, but hugely powerful, recognition of her motherhood. Even though our children have died, we are still mothers–to all of our children. The simple act of recognition allows a bereaved mother the validation she so often seeks and sadly, so often finds missing. A hug and a “Happy Mother’s Day,” even if that seems improbable, could mean more than one could imagine. There are many things supportive friends and family members can do to help ease the pain of this difficult day for a grieving mother. Visit her child’s grave, leave a pretty stone, a seashell or other small trinket, and let her know. Talk about her child. Use her child’s name in conversation, no matter how brief. All bereaved parents long to hear other people speak their child’s name after he or she has died. Many non-bereaved people think (wrongly) that if they mention the child, this will somehow “open the wound,” or “remind” us of the loss. You can trust that we are already thinking about our children, that wound is ever-present. Our children are never, ever far from our hearts and minds. One of the greatest fears for a bereaved parent is that no one, except for us, will remember our children. If you have a special memory of her child, send a card with a story of that memory enclosed. It will be a cherished treasure. Even a card simply wishing her a happy and peaceful day is a gesture that is greatly appreciated.


When we are bereaved mothers who are also fortunate enough to have other children who are alive, we continue to miss and to mourn the ones who are not here for our arms to physically enfold. For these mothers, acknowledging their child who has died can be an incredibly meaningful gift. One child does not replace another. We celebrate in the joyful presence of our living children and deeply mourn the absence of the ones who are not here sharing our daily lives. Remembering that we are mothers to all our children is such a special act.


For women who have suffered early miscarriage, women experiencing infertility problems, or for birth mothers whose birth children have been placed in adoptive homes, Mother’s Day can bring a silent and isolating grief. Much of society does not recognize the loss that can be inherent in these women’s circumstances. Simply letting her know that you are thinking of her on this day can be welcome gesture. A phone call to check in and a simple, “I was thinking of you today and wondering if you were doing ok.” This can allow her to talk about her feelings if she chooses to do so.


For any person whose mother has died, Mother’s Day can be a painful and sad time. A tradition of the not so long ago past called for corsages to be worn on Mother’s Day. A red corsage meant that person’s mother was still alive. A white flower meant their mother had died. Those who wore white flowers were most likely given extra hugs or an extra squeeze of the hand. The openly worn symbol of the flower allowed others to feel freer to talk about the woman who had died, to feel invited to share remembrances or condolences. In our society where mourning is no longer a widespread or open practice (though I am working hard, along with likeminded friends and colleagues to change that), other community members may not always feel they can openly discuss “the departed.” 


If you know someone whose mother has died, or if you knew his or her mother, perhaps sending a white flower in memory of their mother may be a lovely gesture. You might also consider sending a card or letter, or making a phone call specifically to share memories of that person’s mother. Taking a moment to let her child know how much she meant to you, can be very comforting. If you know a young child whose mother has died, acknowledge that child’s pain and let that child know that you are a safe person to talk to. Again, sharing memories of the child’s mother can let that child know how much his or her mom meant to others.


For all of us, childless mothers and motherless children alike, planning a way to remember our deeply cherished loved ones is very important. Make a plan that will honor your mother’s life, your child’s life. Acknowledge their presence in your life, your heart and your mind. Honor your love for them, as well as the pain you feel due to their absence. Create new traditions for this day, such as lighting a candle or saying a prayer, or wearing a flower. You might wish to donate to a charity in your child’s or your mother’s name, plan a visit to the burial site, plant a tree, create a work of art or start a scrapbook. Read your mom’s favorite book, watch her favorite movies, listen to songs she loved. Name a star after your child, make his or her favorite food, plan a balloon release with notes to him or her written on the balloons. No matter what, you are always a mother. And no matter what, your mother is always your mother. We can remember them with love.


I vividly recall the first Mother’s Day after my son died. It was a very sad, painful day. The beauty of spring itself seemed to exist solely to mock my childless arms. On that day, my husband and I planted a tree in our backyard. I had originally planned to plant a tree for our son so that he could watch the tree grow as he grew. Instead, we planted the tree in his memory. The choosing of the tree, bringing it home, digging the hole, and the placement of the tree itself, were all acts that meant more than the simple planting of a tree. The act was elevated to ritual status and was very healing and comforting. I placed special stones around the tree, hung wind chimes and placed special ornaments in and around the tree. Caring for the tree has become a way of demonstrating our on-going love for him. Weeding, decorating the area, watering and fertilizing the tree have allowed for that loving memorial to continue. The tree is visible in our back yard from every window that looks out of the back of our house; kitchen, living room, bathroom, hallway, office. While nothing takes away the pain of missing my child, the ritual we created together to honor his memory made that first Mother’s Day more bearable, and is a constant reminder of our love for him. Seeing the tree bloom each spring and watching it grow a little taller and stronger with each passing year underscore the tree’s symbolic representation of our ever-present love for him and his presence in our family.


If you anticipate that Mother’s Day will be difficult for you, whatever your personal circumstances, spend some time making a plan for honoring, remembering and memorializing. Think about doing something to care for yourself as well. Self-care gifts such as massage, manicure, pedicure, can all help to alleviate stress. Ask for what you need. Taking time to be alone, to journal, to take a walk, spend time in nature, or simply to rest can be very helpful. If you need support, ask for it. If you worry that no one will do anything for you on Mother’s Day, be pro-active and tell your loved ones what you would like to do to observe the day. Plan a lunch or dinner with supportive friends or family. Give yourself permission to do what you need to do to take care of yourself.

"Hope for Tomorrow"

The memories will last forever
But through everything you do
You will have a special angel
To keep watch over you.

The empty arms that break your heart
Will fill with warmth once more,
This short time when you are apart
Will end at heavens door.

WRITTEN BY JOHN & KRAFTY