I Am Grieving During The Holidays

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The Holidays are often fraught with challenges. What to buy, how much to spend, what not to spend, who to spend what on, who to spend time with on what days, travel, traffic, cooking, cleaning, wrapping…It’s known to be a stressful and exasperating time.

And, quite honestly, I never understood why people were so stressed and grumpy around the holidays. I always loved the bustle and gathering with as many family and friends as could fit in one place at one time.

But, this year. This year is different. I am fresh in the grief of losing our daughter. I have no desire to celebrate the holidays without my child. Every light, every decoration, every holiday gathering is a stabbing reminder to my heart that my sweet girl is not here.

And, for the first time, I feel like that “grumpy” holiday person, watching everyone around me enjoy the bustle and looking forward to large gatherings while I cringe at the thought of it. It is a strange feeling, a strange place I am in.

I am struggling between two things. It’s like having the angel on one shoulder and the devil on the other shoulder. The devil on my shoulder makes me want to be angry. He makes me want to say there is no God and that I have NOTHING to be thankful about.

But, the angel on my shoulder reminds me that I know that there is a God, one I don’t always see eye to eye with, but God exists. He reminds me that I know that I have a plethora of things in this life for which to be thankful.

But these two on my shoulder are in constant conflict, making me a bit of a basket case. It appears, that this holiday season anyway, I will be that stressed out, slightly bah-humbugy person that I never understood from years prior.

Even though it may not be apparent from the outside looking in or even from my own perspective when that devil sits on my shoulder, but, I know, with my whole heart, that I am lucky.

I have had what few get to have in life. I have experienced pure joy, endless love and miracles on earth. I have been surrounded by the most loving, gracious and genuine people the world could offer. Two of which are my parents, and two of which are women who consider me a daughter of their hearts. There is no end to the love here on earth, for my sweet girl, or us, her parents.

So, though this holiday season will bring me pain that cuts to my core, I will be saved by what has kept me going since my sweet girl died. I will be saved by Love. Simply, LOVE. Nothing is stronger than love. Love guides, strengthens, lights, heals and steadfastly leads Hope and Faith along every path. It is the one thing that connects Heaven and Earth.

So, if you see me cry or if you see me quiet and withdrawn this holiday, know that I know the wonders of the holidays and every day of the year for that matter. In fact, I will most likely be reflecting on those wonders when you see me. Know that love is the only thing I need to push though the pain that grips me tightly. It is the only thing that wins out when the angel and devil battle on my shoulders.

This holiday season, I may not act so merry and bright, but I will love with every fiber of my being and I will welcome the love given with every breath I take. The holidays will have ups and downs with my grief, but these things I will not take for granted.

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What Am I Supposed To Do Now?

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I have always thought of myself as a pretty together kind of person.

However, since my precious daughter died, I have been a bumbling mess of a person. Some days I don’t even feel like a person at all! Which is totally reasonable considering the situation. However, I don’t have a clue of what I am supposed to do now!

The last four years I spent advocating for my child in every way possible. I was so used to fighting for her needs that I would fight for things that didn’t require a fight! I woke up each day as a Mom and little else. I was happy with that. I loved that. My whole life revolved around my child first and foremost. She needed me. And now, she does not need me. And I don’t know how to live without her needing me.

Our friends and family are getting up each morning, going to work, coming home, shopping, cooking dinner, etc. They are back to life as normal since Delainie’s death. My husband even has a tiny fraction of normal that he has got back to, in that he has returned to his job. The world around us is turning just as it always does. But, I, however, feel like I am standing still watching it all go by, looking back and wondering exactly where things got so off track.

I am not getting back to “normal”.

I have made a point to max out my social calendar as best as possible because the “quiet” times cut me to the core of sadness. I am fumbling around like a lost teenager who has gone out on her own for the first time, except I am not innocent to the pains of the world, to the struggle.

Sometimes I just sit and stare and wonder what I should do next. I am lonely even around people. I am quiet even when I have things to say. I am broken and I haven’t figured out how to move forward with this brokenness.

Because, let’s be honest, I lost my only child, it’s not likely that this break is going to get fixed. This wound cut through many layers, my body, my mind, my heart, my soul. There is no ‘healing” for a wound like this.

What is more likely is that I will learn to live with this wound. Similar to a person with a slightly noticeable limp, indicative of some old injury that never fully healed. Hopefully, I will not let this disability, this brokenness of my heart, body, mind and soul, limit me from enjoying a meaningful, fulfilling and happy life.

Personally, at this moment, I think that is a freaking lofty goal. But, that is the kind of person I am. I have always set lofty goals and excelled in challenging circumstances. So, perhaps, let’s pray, I will achieve this goal. And perhaps, setting a goal like this is one tiny step, for me, of getting back to “normal”.

To be honest, I sort of just want to fast forward through time, to a place where I am successful living with this brokenness. But that is not reality. I can only succeed at this life goal if I work hard. Somehow I don’t think fast forwarding through life counts as working hard!

I am a jumbled up mess of emotions and scattered thoughts these days. I cry a lot. I try to talk myself into understanding that everything happens for a reason. I try to remember to thank God for the moments I had with my sweet girl. I get angry, lonely and faithless. I let go of anger, fill up my social calendar and find faith when I reminisce of my life with Delainie. When I have joyful moments or great days, I feel guilty because I think it’s inappropriate to be happy or have fun at this juncture. I chastise myself for feeling guilty.

I have been thinking of the way I lived my life before Delainie and I don’t think that there is much that would be fulfilling to me now. Life before Delainie seems so shallow, so monotone and so unexceptional. The life I experienced, through motherhood of my special child, was so much more than I ever knew existed. Once you experience something like that, you can’t go back. Kind of like a skier who loves skiing in Vermont, but goes to Utah to ski and is never truly happy skiing in Vermont again.

The life I had with Delainie is no longer an option. So, the life ahead is, well, it is whatever it ends up being. But it won’t be like anything I have ever experienced before. This I know.

Since I have no clue what I am supposed to do now, I am counting on life to lead me, along with faith, hope and love. I am also hoping for some divine intervention to help me find my future calling. I mean, I am the mother of an angel, after all.

A Mother Left Behind

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Four years ago I assumed a new identity. The identity of Kelly happily stepped aside and a new identity slid into place, the identity of Mother.

Not just any mother. Delainie’s Mother.

After a while, the two identities merged a bit. At some point I became, Kelly, Delainie’s Mom.

I considered that to be a monumental success for a journey of self. I felt that I had successfully morphed together the old and new into one fairly satisfying rendition of ME.

I was pleased with my life, with myself, with motherhood. I was infinitely happy and infinitely loved.

It was a busy, tumultuous, hectic, frustrating, rewarding and fantastically amazing four years. Four years I wouldn’t give back for the world. Four years I wish I could replay over and over again every day of my life.

Four years ago not only was an angelic being born into this world, but a devoted and loving mother was born that day as well.

Four years later, an angelic being was lifted up to heaven, and I, her devoted and loving mother, was left behind.

I was left behind, but not without.

The four years along the journey as, Kelly, Delainie’s Mom, life unfolded in such a way that all was set in motion for the day, that day where I would be left behind. And I had no idea until now.

Love was paramount for four years. The most serendipitous friendships were revealed and nurtured during those four years. My marriage strengthened through life challenges never anticipated, because we had pure joy and love in our midst. A perfect nexus of family and friends slowly evolved around our locale. Beautiful memories were made, pictures taken and moments seized. We shared our joy and love with everyone, even strangers.

We lived. While we lived, unbeknownst to us, likely the plan of a divine intervention, every thing was set in motion, every tool readied to be at my disposal for when I was to be left behind.

For four beautiful, amazing and joyful years, we lived life to the fullest, regardless of the path in front of us being rocky or smooth. Neither of them impeded our will nor our desire to live this life to the very best of our ability.

And that is what I am left with, among other things, after being left behind. Which is pretty freaking good. It makes being left behind a bit more manageable.

So, in time, this version of myself will do some more morphing. My wispy version of self in Kelly, changed four years ago when it made way for a much heartier version of self in Kelly, Delainie’s Mom.

I will always be, Kelly, Delainie’s Mom. Nothing will take that away. But what I do expect is to become Kelly, Delainie’s Mom, and much more, as I continue this journey.

What is ahead for me? I do not know for sure. What I do know is that I miss my angel more than words could ever begin to describe. My heart is broken into a million pieces. I need work. I need love. I need sustenance. I need time. But, I will evolve and carry on in this journey.

10 Things You May Not Know About Special Needs Parenting

I wanted to share with folks a few things I have learned about myself since being a special needs mama. A few things I think I have in common with lots of special needs mamas, things that the general population may not know about “us”.

1. Do not assume that a special needs family can’t, won’t or doesn’t want to participate in the same things that traditional families do. Ie: trips to the water park, trips to the zoo, bounce houses. Give them the same invite as any one else and if they decide to decline because it’s not feasible, so be it.

2. If the family takes you up on the offer, be sensitive and introduce them to the folks you know who they do not know. Involve them and their kiddos in the fun. Ie: All the kids are painting ceramics, invite the family and/or child to the table with the other kids.

3. Any Mom is inundated with a million things to do. Which means, if a special needs Mom offers to do something, let her. Don’t assume that she has too much on her plate and tell her so. If she does, then she will hopefully learn not to offer, and you will have been helpful in that discovery.

4. Be honest with a special needs family. Ask, kindly, if they mind explaining a little bit about the needs of their child. What are their pet peeves and the things they appreciate with regard to interactions with their child/family. Ask what things work best in group settings, like, do they want to be introduced to the kids together or would they rather mingle and introduce themselves. Sometimes, special needs families feel left out and in a group setting, it is daunting to be the one to make the first move.

5. Encourage your special needs Mom friend to be honest with you.

6. Sit your own children down and explain that not all children are alike; and, that’s okay. They should always be accepting of differences, and acknowledging that at a young age is often helpful. However, I will say, young kiddos are often most accepting while parents are standoffish. So, perhaps I should change this one and say, take your small child’s lead rather than your own.

7. Know that special needs parents want time out too. They don’t often get it or agree to it, but they need it. So, don’t forget them when you are having a girls or guys night out. It may be just what they need, just like you. Or, they may need to take a rain-check, but the offer is a simple reminder that there is life beyond special needs parenthood.

8. Accept that special needs families have special needs. That’s it. They are not better or worse than any other family, just different.

9. Get involved. If your kids are friends with a special needs kid, get involved. Ask the family to teach you some of the best ways to interact or communicate with their child, so all your kids can work to make the friendship more successful.

10. Offer to help. This one is tough, because a lot of special needs families seem like they have it all together, and it amazes you. Or you don’t know how to help. Just offer. They will accept or decline, but it’s nice to know someone wants to assist them.

That’s it.

Putting One Foot In Front Of The Other, A Difficult Task For a Mourning Mother

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Writing has been therapeutic for me for several years.

It’s not about being a great writer, or even a good writer, or even a “writer” as an accurate title. It’s about the act of writing. Gathering my thoughts into one place at one time has often made me feel rejuvenated and healed.

Now, I am grasping for ways to begin the process of healing, perhaps writing will be a step in the right direction. My world has shattered around me. My everything, my reason for being, my greatest joy, my most amazing daughter has passed on from this world.

I was not prepared for it.

My heart is broken.

My mind is a garbled up mixture of pain, anger, fear, despair and unfathomable loneliness.

I feel as though I am standing in front of a firing squad that is firing bullets of guilt and grief and they are ripping through every fiber of my being.

I have been knocked down many times in my life. But, nothing, nothing has wounded me bad enough that I couldn’t, wouldn’t, didn’t want to get up.

Until now.

I cannot imagine waking up and putting one foot in front of the other.

But, I know, God, I hope, I will.

I will do it because my daughter was the most amazing creature that ever walked this earth. She was an angel among us. She is an angel watching over us. Watching over me, more importantly.

And, I cannot fail her now. If I succumb to grief, sorrow and guilt I will lose hold of the legacy she graciously left in my care. And that would be the real tragedy.

Her work is not done. My job is not over.

My darling girl, my angel in heaven, I love you to the moon and back a million times and then some.You brought me joy, in the most pure form. You freely gave me your love and you happily accepted my love. You are my hero, my warrior, my light in the darkness. Nothing, not space, time, heaven, earth or mortality will change that. I will always love you and always do right by your name, in your name, for your legacy.

Moms don’t take good care of themselves and that is a big mistake!

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After four years of this Mom gig, I have decided that I will always feel like I am new on the job. Every day I learn new things, best practices and grow. Every time I think I have it all figured out, It is not long before I realize I am not even close! 

I do, however, have an fairly decent ability to roll through the punches as they come and the ability to recognize areas for improvement in my “field” of work.

The most recent thing I have learned, and I think this probably took entirely too long, is the urgent, undeniable need for proper self care. 

As a Mom, wife, friend, I am always focused on the care of others. And, as a mom of a medically complex kiddo, I have an extra set of needs, fears and concerns than most Moms. My feeling of responsibility for all of these needs often trumps my responsibility for my own needs. 

And, that my friends, many will say is just part of “Motherhood”.

BUT, it cannot be used as an excuse to nullify the need for self care. 

We can only be as good as our minds and bodies allow us. Our minds and bodies must be nurtured and cared for just like the minds and bodies of those around us. And, shocker, WE, the MOMS are responsible for nurturing not just those around us, but ourselves as well.

That said, these are some of the ideas, phrases, cop outs that need to get kicked to the curb:

– I don’t have time for (insert type of self care here, ie: exercise, meditation, a shower, eating breakfast, sleep, go to the doctor, etc).

– (Person XYZ), needs me to do, (1,2,3….99, 100) before I can do anything else!

– I have no problem saying, “No” to myself, but I cannot even think of saying it to anyone else! 

What it is time to start doing in the name of Motherly Self Care:

– Ask for help when I feel overwhelmed.

– Learn to say, “NO” and identify appropriate situations where I need to do it.

– Create one healthy habit that has been lost in this transition into motherhood. Once fully implemented, create space for another healthy habit. And so on.

– Prioritize. Effectively. Efficiently. Fairly.

– Set expectations while being realistic and reasonable if they cannot be met.

– Find the areas where I have the most ability to make changes and do it. Recognize areas that I have little power to make changes and accept it.

– I WILL NOT feel GUILTY by working on self care! I. WILL. NOT. FEEL. GUILTY. Ooooooh, say it again! 

Self care for a Mom is so important. It is not reasonable or rational to neglect ourselves, but most of us do it. And, by some sheer miracle, if we do something for ourselves, we are fraught with guilt about it. That needs to stop. Now. Yesterday, actually.

Without us being our best versions of ourselves, then who? We can do better for others when we do better for ourselves. 

Carry on Moms! We are made of serious stuff. We are absolutely capable of taking care of ourselves and taking care of others. We just need to get our heads in the game, prioritize, delegate and ask for help when needed. It is not a sign of failure or weakness, it is a sign of stamina and strength. 

Time for some yoga, meditation, a good meal and glass of wine! Add it to the list. I know I plan to add it to mine.

Our Decision To Have Only One Child

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So, you are young, let us say in your 20’s, and you have been dating your significant other for quite a while, what is the most common line of questioning you lovebirds hear?

“When are you two getting married”? Or, “when are you gonna make an honest women of her”? Or, horrors, this one, “maybe he hasn’t asked you yet because why buy the cow when you can get the milk for free”?

Right?

Then, you get married. What is the most common line of questioning you are asked while you are basking, childless, in your newlywed fantasy land?

“When are you two gonna have kids”? Or, “I can’t wait to be a grandma/grandpa/aunt/uncle, are you going to have kids soon”? Or, “when I was your age, I had been married with three kids by now”!

Right?

And, finally, you have a child. And, naturally, what is the most common line of questioning you hear now?

“He/she needs a sibling, are you going to have another”? Or, “it’s easier to have them closer together in age, my kids were 15 months a part”!  (Woah, holy diapers, dueling tantrums and sleepless nights mama!)

Right?

But, what if you don’t want to have an other child? Why does it feel like you are in the minority? Why are there such negative connotations surrounding “only children”? Why is the expectation so high to have more than one child? Why do people tsk at the idea that a family can be completely fulfilled and perfect with one child? Why, when asked, do so many people say they want two kids because, “I always envisioned I would” or, “I want a boy and a girl” or, “I came from a family with siblings and cannot imagine it any other way”?

It has been our choice, and I suppose we reserve the right to change our minds, but we are parents of one child, with no intentions to add another. 

We had no written in stone plans to have only one child or more than one child when we were discussing starting a family. We just let our lives unfold. And unfold they did!

It wasn’t easy to get pregnant. For the life of me I cannot grasp how so many people have conceived on the “first try” or all the teen pregnancies that are the result of a virgin’s one night stand. There is such a small window of opportunity for fertilizing an egg!  It took us about a year and giving up all together before we conceived our daughter! I regognize our experience was not really that long compared to some folks who have struggled with fertility. 

Being pregnant was such an amazing gift. Once our child came into this world we were wrapped so tightly around her precious fingers we could not ever envision letting go. 

Our daughter entered this world with some gusto. She had everyone one their toes. She commanded a crowd in her first few hours of life. After four amazingly beautiful years, nothing has changed. She still keeps us on our toes and she commands quite a crowd in addition to having her own personal entourage along with some pricey accoutrements.

She is medically complex and has special needs. We are madly in love with every ounce of her being. She requires much more from us than we ever expected when planning our family. And, as she is our only child, we are undividedly concentrated on providing what she needs. We do not have to feel a pull of devotion from one child over the other. We do not worry that where one child receives our time, attention and resources the other child loses our time, attention and resources. 

This works for us. We are fulfilled, in fact, our cup runneth over. There are plenty of families who are capable of having several children and managing their needs without feeling as though there is a detriment of compromise. We respect those families (however, I highly suspect those parents are aliens from Mars with super powers from space, just sayin’).

We have decided that one child completes our family perfectly. She does not NEED a sibling. I do not NEED to enjoy the stages of motherhood again. My husband does not NEED the addition of a “boy” to our family unit. We do not feel slighted by being a family of three instead of four. We realize our prior dreams and visions were just guidelines but meeting them in real life is not a necessity nor does it mean we are lacking having not met those original aspirations.

 We go with the flow of this wild, crazy and challenging life and we are immeasurably happy and blessed.

Dear Pediatric Nurses, Just a Note, From A Mom Of A Medically Complex Child

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Dear Pediatric Nurses,

You are part of an honorable group of individuals who provide health care for the future of our world, our children.

Your daily duties are fraught with challenges as you work within the constraints of a complicated and frustrating healthcare system, stay on your A++ game and save and preserve lives of tiny, small and big kiddos alike.

What a day! What a job! What a choice! Not all nurses are amazing, thanks to the ones who are amazing for making the choice to work in pediatrics.

Your job is not easy. I know it. You bounce between doctors, patients and families. One minute you may be on an emotional high for the improvement of a patient and the next you may be at the depths of despair for the decline of a patient, perhaps they are even one and the same at times. It is a roller coaster ride, I am sure. Not to mention you need to keep information and care for each patient at the forefront of your mind. You are likely very adept at your job, but you need to continually check and double-check everything you do; because, a mistake could be the difference between life or death. What an awesome responsibility you have resting on your very strong and capable shoulders.

And, let’s discuss this part, because that is why I am writing today. The parents. The families. The people who watch, with speculative eyes, every single move you make with your patient, their child. Every move you make builds or fractures a bond between you and them. Every move you make, every word you say reinforces or tears down the trust they have for you as a caregiver for their child. What an awesome responsibility you have resting on your strong and very capable shoulders.

And, there are also too, those parents who don’t watch you at all; because they cannot handle it; or because they don’t know enough to know if you are right, wrong or indifferent; or because they are not physically there, for whatever reason. You are the pitch hitter as caregiver and advocate combined for these patients. What an awesome responsibility you have resting on your strong and very capable shoulders.

I write this because, as a Mom of a medically complex child, I think it’s important to share with you that you not only treat the pediatric patient, you treat all the people who come along with that patient. You can make or break a whole room full of people with your quality of care and level of patient and extended patient commitment. What an awesome responsibility you have resting on your strong and very capable shoulders.

I can’t imagine juggling patient care between blubbering Moms and angry Dads, not to mention the menacing look of the Grandparents! I know you care. If you didn’t care, deeply, profoundly, you would not be in this profession. I know that the days of caring can take a toll on your mood, your strength and your psyche. I know that while I am complaining about my child not being able to eat before a procedure, that has been delayed 5 hours, you may have just left a room where another child coded, while his frightened parents looked on. I know you probably had no time to reflect on the pains of one patient because you need to move on to the needs of the next one. You console parents in pain and in the same breath you work to fill the legitimate, albeit, seemingly unimportant needs of the parents for the patient down the hall. You do this without skipping a beat, without making any patient or family feel as though they are not a top priority. What an awesome responsibility you have resting on your strong and very capable shoulders.

I know. I know what you do.

I know you need to take a breath and count to ten before you come into my child’s room and tell me that the procedure, that has been delayed for hours, is being postponed until the next day. I know you are frustrated about it too. I know there is little you can vent about with me as I go on a tirade. I know you listen to me while I spout off every big word in the medical dictionary to air my grievances about this “injustice”. I know, deep down, I know you are keeping your emotions in check for the greater good, for your sanity, for me, for my child, your patient. What an awesome responsibility you have resting on your strong and very capable shoulders.

I know. But do you know?

Do you know about me?

I may look frazzled and be a little wild-eyed. That is because I am trying to muster everything I have to be the very best advocate for my child who is an extension of my heart and my soul.

I may seem demanding and needy. That is because this is not my first rodeo and I have learned from past mistakes. Mistakes I intend to avoid going forward.

You may think that I act as though I run the show. Well, I do. I can’t really think of a better way to say that. I have been on this team the longest, I have the most history and the most current knowledge. I am the quarterback, the medical staff make up the rest of the team. The team, together, is invested in my child’s overall well-being.

You may think I don’t respect you. Listen, unless you are a heartless, incompetent jerk, I do respect you and your job. But, I cannot check my emotions like you. This person, this little human you are caring for, is my life, my passion, my reason for living. So, I may sound terse and be difficult, but that is not due to a lack of respect. It is because there is so much at stake. My child, is my ONLY patient, my top priority, my ultimate concern.

I am a Mama Bear. I roar. It is the natural order of things when I feel my child is in danger or isn’t receiving what she needs. And, yes, sometimes, us, Mama Bears, roar for no good reason. And when that happens, inevitably it will, I hope you will consider cutting us a little slack, at least for first time offenses. After all, we are likely living in the hospital, hyped up on coffee, starving for food and exhausted in ways we never knew were possible.

You may not know this, but I think of you when we leave. I smile when I think of those of you who are/were amazing and cringe when I think those of you who are/were less than stellar. Many nights I pray to God, thanking him for your awesomeness, for your kindness, your competence, your composure, your patience and your advocacy for my child and our family.

I am grateful, though you may not ever know. I am grateful that you listen to my tirades and you do not blink an eyelash in irritation. I am grateful that I can trust in your capabilities so that I can leave my child in your care, feeling she is safe and secure in my absence. I am grateful that you respect my opinion, my love for my child and my knowledge of my child’s health. I am grateful that you regard me as the best advocate for my child and that I can count on you to advocate for us as a family.

I am a Mom of a medically complex child. I am blessed beyond measure. I live a life I never thought I would live. It was a life that chose me, chose my family. We were given an awesome responsibility to rest on our strong and very capable shoulders.

You, my nurse friends, you have chosen to accept such an awesome responsibility to rest on your strong and very capable shoulders.

Thank you. Thank you.

Things You Should Never, Ever Say To A Parent Of A Special Needs Child

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I have been blogging for about a year. I seem to have finally found my niche blogging about things I have experienced on a personal level. I often share raw, unadulterated stories of my life as a mom of a special needs and medically complex child.

One of the things I have learned recently is that people so often do not know how to interact with special needs kids and families. Which leads them to ignore us all together or say terribly inappropriate things!

I think people do this is because, acting the “right” way towards a special needs family seems daunting. Some people question whether or not a family wants to openly discuss the child’s needs and challenges. Some people try to treat the family like any other family. Some people truly do not know what is off-limits and some people are just down right rude!

Integration between typically developing families/kids and special needs families/kids gets dicey more often than not.

I have made a short list of the top things I think you should definitely avoid saying to a special needs parent, and avoid thinking about all together. In no particular order:

1. Don’t ask a special needs parent if he/she needs anything to let you know.

This sounds kind. And it is. But, most special needs parents are made of true grit and don’t want to ask for help.

Not to say that all parents aren’t made of some grit, but it is different. Special needs parents, especially with medically complex children, juggle glass balls in the air. If they drop one it could be detrimental to their child. The days they want to throw in the towel and give up are the days they need to forge ahead wielding every weapon in their arsenal. If they do not, their child could suffer a great deal.

So, that said, listen to these parents. Hear what it is that seems to be giving them the most challenge in daily life and offer it up if you can.  A parent may not ask you to make her dinner, but he/she will not turn away a casserole that is dropped off by a kind friend at the end of a hectic day.

2. Do not EVER, EVER, EVER, ask ANY parent, “I hate to sound rude, but what is wrong with her/him”? NEVER. EVER.

Uh, nothing is wrong with him/her, what the heck is wrong with you???

I understand that people are curious. But nothing ruffles a parent’s feathers more than speaking as though his/her child is less than another.

Ask something like, “What types of activities does your child like to do with the other kids”? “Do you think your child would like to read books or color with my child”? Even saying, “I will be honest, I am not sure what is the best way to teach my child how to interact with your child. Will you help me to understand what ways my child can interact with yours so that this is a positive and successful experience for them both”?

By asking these questions you can help parents to open up and share with you the most positive ways your children can enjoy interactions together.

Curiosity may get you forever. The parent may never divulge a diagnosis or disability to you. And that is okay. Because, the bottom line is that you want to respect them and their family and you want to interact with them in a positive and meaningful way.

3. If the child does not have a broken bone or a cold/flu do not ask if a medical issue can be “fixed” or if it will “get better”.

Some families not only battle with special needs for their child but they also battle medical complexities that baffle even doctors.  Our beautiful children are born the way they are born.

They are born with genetic differences that cause them to have medical challenges that may always be present in some form or another.

They cannot be “fixed” because they are not broken.  They will not “get better” because they are not sick. Please have empathy towards these medical complexities. Which really just requires lending an ear not offering a solution.

4. If you know of a special needs parent who stays at home, do not assume they have “time” for things that you do not.

Special needs parents stay home, often because they assume the role of primary caregiver. This is a job of great proportion.

It requires scheduling things like therapies, doctors appointments, nursing care and school meetings.

It requires researching the current conditions and diagnoses for the child.

It requires learning caregiver skills that would otherwise not be needed like, tube feeding, changing g-tubes, placing NG tubes, taking blood sugar, suctioning trachs, moving heavy children from one piece of adaptive equipment to the next, etc.

Make no mistake, it is a JOB. Parenting may be the very best, most fulfilling, most rewarding and most privileged role you ever get to play. However, it is a ROLE, a JOB, a RESPONSIBILITY.  You learn new skills as a parent, you learn new ways to handle emotions, you may develop traits you never thought you were capable of developing.

So, these parents likely have little time beyond their “job”, which is usually, 24/7. These parents don’t have time to dwell on the issues in life, think about the future, or even take the proper time for themselves. They typically have time for the moment they are in and not much else.

5. Do not assume, do not label, do not fall victim to stereotyping these families as ENTITLED.

I. Can’t. Even.

This is a huge, HUGE, problem for a lot of special needs families. The outside world thinks they have a problematic sense of entitlement. As with anything, it may be the case for some, but DO NOT label.

Let’s be clear. Special needs families are not better than typical families. They simply have special needs. These special needs have to be met in order for these families to enjoy the same liberties and opportunities as typical families.

Yes, they may get nursing care, free diapers, free formula, early admission to events, etc. BUT, they would most likely rather not have those things.

They don’t WANT nursing care, they NEED it for the safety of their child.

They don’t WANT free diapers, they NEED them for their large child who will likely remain incontinent for many years or for life.

They don’t WANT free formula, they NEED it because it is likely required for g-tube feeds or special diet concerns regulated by doctors.

They don’t WANT early admission to events, but they NEED it to get the equipment and child into the event and settled with easy access in and out for emergencies.

Let’s not get confused and think we need to treat special needs families like everyone else. That’s not really possible in most cases, and it’s not really what these families want.

Special needs families want to be included like everyone else, they want to enjoy the same opportunities as everyone else, they do not want to be limited. And, for these things to occur, they need to be treated differently than the typical family.

For these families to enjoy limitless opportunities and inclusion, special exceptions, strategies and accommodations must be made. It is not reasonable for a typical family or individual to get bent out of shape because of it. Be glad, as a typical family, you do not need these types of accommodations. It is not a “treat” or a “golden ticket” for these families. It is a way of life.

6. Embrace a friend, family that is new to the special needs journey.

You may have known them before they embarked on this awesome, challenging and character building journey of special needs parenting. But, you will soon find out that the new life will change them in ways they never imagined.

They may have major challenges with communicating with their non-verbal, or hearing impaired child. They may be legitimately frightened, daily, for the safety of their child. Some children battle frequent seizures, exposing them to physical harm from falling or banging. Some seizures for these kids cause them to stop breathing and go into respiratory arrest. Some kids do not have the neurological wherewithal to stay with adults and they run, they run, fast. Some kids require life saving medications, daily, on time, no mistakes. Some kids are so sensitive to stimulating activities that they lash out in fear and/or anger as a response, perhaps harming themselves or those around them (often their caregiver or parent).

These are all things that the average, typical parent does not need to navigate. So please, give these parents time, space and comfort as they navigate this new path.

Many couples cannot continue to stay on the special needs course together, and marriages or relationships falter. They find out the stuff they are or are not made of when faced with a life change like special needs parenting.

These parents may find new outlets, have new priorities, have new ideas of what they find to be worth their time. They may need you as an outlet. They may need you as a shoulder to cry on. They may need you as a comrade in arms.

Be kind, these family members, these friends, will need your patience, your love and your empathy. They may need you to be a rock for them to hold on to when they feel they are drowning in a sea of uncertainty. With true grit, love, support and hope, they will eventually find their way and settle out along the journey. But, it will take time.

When a family joins the special needs journey, everyone who was once associated with them is along for the ride in some form or another. You may have pictured their lives to be different. You may think, “I want more for them than this”, “How can God let this happen” or “I can’t handle the pain they are going through in this new life”. But, it is not about you. It is about them. They will come to accept and embrace this life and you as a friend, a family member need to do the same or they do not need you in it.

7. Avoid being the eternal optimist.

It is important to stay positive and optimistic. But, try to refrain from comments made by the eternal optimist like,

“Oh, he will be just like the other kids, it will just take time”.

“I believe she will walk, someday. It. Will. Happen”.

“I know, in my heart, he will speak like the other kids’.

You are not a bad person for wanting to say these things. You are not wrong for thinking them or believing them in your heart.

BUT…

A special needs family needs to balance hopes and dreams with reality. Special needs families need to feel peace with the fact that their child will not walk, talk, or be “like” the other kids.

Ever.

And, that is okay.

It is a difficult balance. A special needs family needs to accept that the physical and neurological limitations for their child may fall within a broad spectrum. The family has to feel comfortable with any place their child lands on that spectrum. And it is hard to do that with the eternal optimist whispering in their ears.

Each family balances reality and hope differently. What may seem to you as giving up hope for their child’s progress may actually be them acknowledging and coming to terms with what may or may not be in their child’s future. So support them through it. Be positive and follow their lead.

If you have a special needs family in your life, you are blessed. They are different, yes, but those differences can bring new, enriching things to your life. Embrace it. Cherish it. Nurture it. Love it.

Everyone is talking about vaccinations but they are forgetting to mention one big thing!!

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So, we have all heard it. Watched news reports about it. Read endless posts in our news feed about it. The topic I am referring to, vaccinating our kids.

And, it’s been a hot topic for a while now. But, it’s on fire since the recent outbreak in the US of MEASLES!

So, here we are. This current measles outbreak has created two camps, those who are angry with the choices parents have made to not vaccinate and those who are angry that they are being persecuted for not vaccinating.

This argument has been ugly. In fact, it is full-fledged war between these camps. Unvaccinated parents vs vaccinated parents.

It’s an ugly battle because it deals with our kids. And, regardless of what camp you belong to, our kids are our entire world. Any question as to whether or not we are protecting our kids or any threat to the protection of our kids creates an emotional surge that flames white-hot in every parent.

Things are out of control. Some parents want to sue other parents if their child gets sick from an unvaccinated child. One doctor recently said he would not treat any kids who were not vaccinated (uh, that’s a violation of the Hippocratic oath, by the way). Some parents insult parents who have not vaccinated their kids, saying they are bad parents. Some parents want the schools to mandate all children be vaccinated. Some parents are saying just dumb things like, “if your child is vaccinated why are you worried about mine being around yours. Guess you know the vaccines don’t work, so why would I subject my child to it anyway”. Okay, I tried, I really tried to be more objective but that is a dumb comment and one I have seen a lot recently!

So, we are flooded with heated emotional arguments supporting choices from each camp. Heated emotional arguments that do nothing but place blame. Heated emotional arguments that swallow the issue and solve nothing. Heated emotional arguments that propagate more anger and ignorance and end friendships and partnerships (like the doctor, I referred to above, with his patients).

Has anyone said something to the effect of, “Hey, folks who have decided not to vaccinate your children because of personal, philosophical beliefs or unfounded medical fears, come. Come and discuss. You are by no means bad parents for having made that decision over the years. You, like any parent, want the best for your child. You want to protect your child against every evil in this world. And, you do it by weighing the costs and benefits of your decisions and actions. Because you are a good parent. Let’s have this discussion again in light of the recent events and outbreaks and let’s be sure your decision is still the best one”?

I haven’t seen that type of invitation on social media. It certainly wasn’t an invitation by the doctor who said he wouldn’t treat unvaccinated kids. I don’t think the educators have doled out this invite to their communities. The news reports don’t suggest much to this effect either.

Mostly, what we have seen is a lot of the blame game. And, I don’t know about you, but, nothing raises my hackles like someone questioning my actions as a parent. That’s what’s happening to those parents who have made the choice to not vaccinate. They are being attacked. The foundation on which they built their child’s safety and well-being may be starting to crumble with the recent circumstances.

What we need to do, as friends, family, and communities, is open an honest discussion about vaccines, without the blame game.

Let’s just go over a few facts. The measles vaccination was implemented in 1963, per the CDC. Prior to the vaccine being developed millions, MILLIONS of people contracted the virus each year. A fraction of those people died, many were hospitalized and some developed brain swelling after the virus ran its course. http://www.cdc.gov/measles/about/faqs.html

In 2000, the measles were considered eradicated in the US. ERADICATED. I am not a doctor nor am I a genius, but I think we can all put 2 and 2 together and get 4, right? The measles vaccine is doing a very good job. And per the CDC, after the two recommended doses of the vaccine, it is about 97% effective.

Okay, fact-mongers, those are just the facts. Not opinion.

Here is the opinion, as a parent, I feel that the benefit of having my child LIVE, live without measles is worth the cost of low incidence side effects. No discussion about links between vaccines and developmental issues, because, ultimately, keeping my child alive is my goal. I cannot gamble with her life on unsubstantiated claims that are not recognized by the medical community. Done.

There are some children who cannot be vaccinated. Medically fragile children, children who are allergic to the vaccine and newborns. These are the children that the vaccinated community protects beyond themselves. These are the children that are at risk by the unvaccinated community.

These medically fragile children in addition to your own children are the reasons why this conversation should occur again with the families who have decided to not vaccinate. A conversation, not a blame game.

Let’s be clear. Choosing to vaccinate for the measles is not the same as choosing to vaccinate for the flu. Two different illnesses, two different success rates, two different side effects. Perhaps, for many parents, two different choices.

As parents it is our duty to protect our children. There will be changes in how we protect them as we journey through life. I urge all parents who vaccinate their kids, to please stop persecuting the parents who have not vaccinated their kids. We all make decisions for our children because we think they are right at the time. Share that you disagree and agree to disagree.

At the same time, I urge all parents who have not vaccinated their kids, to sit down and have a good talk with a trustworthy doctor. If you trust your doctor to manage your child’s pneumonia, ear infections, surgeries, you should trust having a conversation with him/her about vaccines. You can discuss things related to vaccines with your child’s doctor like, success rates, documented side effects, risk percentages, alternate schedules for administering vaccines, omitting some vaccines you feel are not worth the risk, etc.

Please, let’s not have these two camps spit fire at each other forever. Let’s sing a little kumbaya on the common ground of keeping our children healthy.