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.

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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.

“I love insurance companies, mean people and unsympathetic friends”, Said NO Special Needs Parent, EVER!

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It has been a long time since I have written a post for the blog. I will tell you the truth as to why it has been so long.

The honest truth is that I was taken hostage by this thing called, “The Challenges of Special Needs Motherhood”. While in captivity, I was ruffed up by the leader, “The Big Bad Insurance Company”. In addition to that, I had the wind knocked out of me, unexpectedly, by “Un-empathetic Friends”. Then there was a tumultuous experience with that thing called, “Keeping An Accurate Schedule”. I was drowned by “Paperwork”, “Emails”, and “Phone Calls” which are all related to big brother, “Special Needs Duties”. When they were done with me, “Worry” and “Frustration” set in to do a number on my psyche. When I had a chance to come up for air I breathed in precious family moments and gained the strength to fight back.

Being ruthlessly taken by that thing called, “The Challenges of Special Needs Motherhood” with the ring leader, “The Big Bad Insurance Company” created an opportunity for more active participants in my torture. I felt defeated not knowing what villain to tackle first. While captive and shut off from so much of the world outside, I took time to look for answers within myself and I relished in my free moments with family. This offered me the strength I needed to deflect the weapons of the villains that held me captive. Rendering them useless and freeing me from captivity all together.

Of course, the villains lurk around every corner. But, with strength, fearlessness and perseverance, they cannot do me much harm. Now I can get back to the important stuff like cultivating new and meaningful friendships, nurturing friendships that have weathered the storms along side of me, enjoying my family and getting back to writing and learning new things.

Prior to being taken hostage, I have had run ins with “The Challenges of Special Needs Motherhood” and “The Big Bad Insurance Company” (“TBBIC”). But, they never ganged up on me together with a bunch of others. For three years, we have had many medical needs related to our precious daughter. It was often a fight for those needs with “TBBIC”, but we always weathered it pretty well. Just recently, “TBBIC” denied several of our medical requests. It was as though the denial was just the normal course of action for “TBBIC”. Similar to the theory that you are innocent until proven guilty in a court of law; we discovered that you are denied until you fight to be approved in the world of medical insurance requests.

I venture to say that this set up is by purposeful design. From experience, I have found it is not easy to get a hold of anyone (who matters) to discuss an insurance denial situation. I imagine many people succumb to frustration and end up throwing in the towel, requiring them to pay out-of-pocket, not pay at all or worst case, they don’t get the medical care/item/RX they truly need. “TBBIC” is off the hook for that money; and I am beginning to think it is just the way they like it.

I thought this experience was worth sharing. Fight for your needs, for your family’s needs. “TBBIC” is a formidable opponent, don’t get me wrong. It will take time, effort and tenacity in order to fight, but, “TBBIC” is not counting on you for that. So, dig in your feet, roll up your sleeves, open your eyes and give them all you’ve got.

We have frequently experienced being denied for a service or a medical device and I think, “WTF, of course we need it, the letter of medical necessity, letter from the physical therapist, nursing notes and diagnosis all support the need”. The one thing missing is that I need to take an active role in holding the decision makers accountable for reading, reviewing and making an appropriate decision based on the materials and facts I have submitted.

Yeah, I know, you would think that it is a reasonable expectation that they would pour over the material you send and make an appropriate decision. Especially, considering that the material you submitted is per “TBBIC’s” detailed requests!

Being held hostage for some time, I had time to brood about all of this. Here’s my take, “TBBIC” has a detailed request list because they are banking on the fact that you will not provide all the information requested. And, if by some chance you do, they will not actually read it if you are not active in the process with your own voice or a representative’s voice on your behalf.

So, I shared this story as a reason for why I have been off radar for a while and I share it to help other people know how important it is to fight for your needs, even though it is freaking hard. You are not alone, it is FREAKING hard and you are right to be irritated and disappointed in the system that purposefully deters you from getting the medical attention/support/device/etc you or a family member need. Channel that irritation and disappointment into being a diplomatic (I know that’s hard but it is necessary), prepared and active participant in the decision-making process. To recharge your engine, take comfort in the other things around you in life, the littlest and tiniest positive things can help you move through the process.

Good luck! Happy Halloween!

Breastfeeding Is Great, But It’s Not The Only Way To Feed Your Baby

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I think our responsibility as Mothers to our children, is to provide these core needs, FEED, CLOTHE, PROTECT & NURTURE. That is the foundation of Motherly responsibility. Everything else builds upon that foundation. And, boy, let’s not get into that, there is a lot of “everything else”!!!

I bring this up, because, August is Breastfeeding Awareness Month. And, breastfeeding is one way to provide one of our core responsibilities as Mothers, to feed our children. Yes, it is ONE way.

Before I got pregnant, many friends and colleagues were having babies. One of the things that several of these new Moms shared with me was their “failure” at breastfeeding or pumping breast milk. These women took classes before their children were born, prepped to breastfeed, consulted with the lactation nurses, etc. But, they were not able to keep up production, their child would not latch or they were beyond fatigued and exhausted as new Moms to breastfeed exclusively.

Here is the horrifying part, because they could not breastfeed, these women felt like they were not worthy of the title, Mother. They felt depressed and like failures because they could not breastfeed their children.

How difficult it must be to be a new mom with whacked out hormones, a tiny child that does not come with instructions, and to feel like you have failed your first and primary job.

As new Moms we are bombarded with information about breastfeeding. It is supposed to be something our bodies just “do”; but it isn’t as easy for all of us. Lactation nurses are supposed to be there to support and help you as a new Mom. But, often times, in our sensitive postpartum state, we find them to be pushy and difficult with regard to breastfeeding. And that’s not helpful at all.

Once pregnant, I planned to breastfeed. I will not lie, mostly because it was the most financially sound plan! FORMULA IS FREAKIN’ EXPENSIVE!!!!! Plus, I knew the nutrition from my breast milk would be totally appropriate for my child.

However, after hearing the trials and tribulations of other women, I vowed that I would never put excessive pressure on myself to breastfeed exclusively. I intended to give it my best effort; but, under no circumstances would I consider myself a failure if breastfeeding didn’t work out the way I planned.

Of course, a whole heck of a lot more than breastfeeding did not go as I planned! My daughter spent the first four months of her life in three different hospitals!!

When I first tried to nurse, she did not latch on. But, I did not fret. The nurses came and asked me if they could feed her formula in the nursery because her blood sugar was terribly low. I was cool with it. I said, “of course, feed her, whatever it takes”. Because, I knew, deep inside, that “feeding” my baby was the main goal.

As medical issues piled up with our daughter and time in the hospital stretched on and on, I became slightly obsessed with pumping breast milk. Ya know, that thing I swore I would not do!?!?

Of course, to my defense, I felt helpless.

My daughter was in the hospital with a myriad of medical issues and I couldn’t do anything, but, pump. I felt most helpful when I pumped breast milk. It was something I could do that was a “normal” function of motherhood. I wasn’t washing baby clothes. I wasn’t up in the middle of the night warming bottles or drowsily nursing a hungry baby in the comfort of our home. I wasn’t dressing her up and taking her out on the town to show her off. I was pumping and sitting in a hospital room.

This is the most important part to my personal story, I did this because I could. Once the lactation nurse taught me what to do in my hospital room and handed me the pump, I was pumping “liquid gold” pretty darned quick! The nurses joked with me that I was “dairy queen”. Of course, that made me feel good, helpful. So, since I could do it, I made sure that I did it frequently and did not falter. I pumped for 10 months!

I like to think, even in the emotional uproar of having a medically complex, first-born child in the hospital, I would not have been depressed if I wasn’t able to produce milk.

However, I am not entirely sure. Being surrounded by information about the benefits of breastfeeding and having lactation nurses push you to your limits, can get a new Mom down in the dumps if things don’t work out the way they “should”.

All of the breastfeeding information is great, but it’s one-sided. The flyers and posters and lactation nurses only educate Moms on breastfeeding, as though there is no other acceptable way to feed your baby. And, this can do a number on a new Mom’s psyche.

Hospitals and organizations should share and educate moms and families on the various ways to feed their babies. That would be most helpful.

For instance, breastfeeding baby gives Mom and Baby the opportunity for some amazing bonding. But, it is also exhausting for a Mom to be the only one capable of feeding Baby. And, it is often hard on a partner who wants to help but cannot give that one thing Baby needs, breast milk. There is an upside to having a partner feed Baby so Mom can get some time to rejuvenate to be her best version of herself. And it gives your partner time to bond with Baby in a special way too.

I can tell you that my baby got a lot of breast milk, but she also got formula. I was okay with that. I was a slave to the pump for a long time because that was my only “job”. Then, it turned into a habit and it was fairly easy to keep up with even when our daughter finally came home from the hospital.

And, yes, I did feel great about being able to do it! I felt empowered. I even carried around this bag at the hospital that said, “I make milk, what’s your superpower”?

But, the truth is, we Moms all have different superpowers. Some of us make milk, some of us have the patience of saints, some of us have the endurance of a race horse, some of us are great in crisis and some of us mend what others cannot.

Here’s my main point, feeding your baby is the goal. It’s amazing to feed your child breast milk, but you most certainly are not a failure in the motherhood department if you feed your baby formula.

Not feeding your baby is what would make you a failure in the Motherhood department. Not HOW you feed your baby. Take comfort in that and give yourself a break.

Anyone Else Want to “Eat Clean” But Feel Lost???

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Once upon a time, I thought I was pretty good at “clean eating”.

However, after some research, I realized I had a lot to learn and a lot to change in my life if I was going to abide by the “clean eating” rules. And that, my friends, is terribly daunting!

Let me explain.

To “eat clean” one must avoid all processed and refined foods. Fairly simple rules, however, when it comes right down to it, those foods are everywhere! EVERYWHERE!!

I took a moment to look in my pantry, because that is where a lot of processed and refined foods live. I think many of us know that boxed foods like mac ‘n cheese and skillet meals are highly processed foods and are not really a great food choice. Right? Well, if you didn’t, now you know!

But, did you realize that your favorite granola bars and heart healthy soups are likely highly processed and full of MSG like ingredients in addition to weird preservatives like BHT? We are frequently lured into security when we see words like, “fiber”, “heart healthy” and “natural”. And, many of us swoon at the boxes endorsed by our favorite famous athletic trainers and TV shows.

But, if it’s in a box, a bag, a jar or a can, it is in our best interest to go further than the trendy words or popular endorsements. It’s time to check out the ingredients and understand them.

The rules to “clean eating” are simple. If we were living in pioneer days or cave people days, we could follow those rules without thinking. However, we live in a world that has fast food, artificial food, fake food, questionable food…

So, it’s a bit more of a challenge. Not to mention, we are often tricked by some pretty savvy marketing into thinking some items are a great food choice when they are not.

“Clean eating” makes sense to me. I mean, why not? Eat fresh, eat local, eat what you know.

Sounds like the right kind of trend to follow if one is going to follow a trend, right? I mean, following an all carbohydrate diet or a carbohydrate free diet sounds silly to me. Not to mention, if I had to cut out carbs I would lay down on the floor and refuse to carry on! But, this, “clean eating”, fresh food eating, now that is reasonable. It’s something I feel like I can totally get behind.

Implementing this plan will take dedication, diligence, patience and probably, some changes in my grocery budget.

I suppose finding fresh food is fairly easy, it’s not frozen, it’s not canned, it’s not bagged. It’s, uh, FRESH.

Personally, I think the best idea is to visit the local farmers market with local vendors. Not only do I have access to food I know is fresh and seasonal, but it helps the economic growth for local farming businesses. Bonus!

Eliminating processed foods is where it gets a bit dicey.

We live in a country that promotes ease and convenience with food and food accessibility. Yet, as a population, we have a lot to learn about food and how to make our bodies better with food. I have friends that moved over seas and I yearn for the food opportunities they have there. They don’t have pantries in the homes there. Because they shop daily and make fresh choices. They have to make a lot of things from scratch because it doesn’t exist as a pre-made option. Food doesn’t last long because there are no strange preservatives.

The market set up in countries abroad lends itself to the “clean eating” philosophy. It’s not a struggle to eat clean, it is a way of life. That is what we are missing here. Eating clean is not the norm, it is tricky and challenging for us.

We live in a world of commuters and busy lives. Can you imagine adding a shopping trip to the market daily, sometimes twice daily? Probably not. I would be totally cool with it though! Instead of just stopping in to a coffee shop, I’d like to grab a cup of joe and make my dinner choice as I stroll through the market looking at the fresh, seasonal items that look the tastiest.

That little dream would serve many purposes for me. I could get the freshest food possible. I can be inspired by that food for the meal of the day. I can take time to slow down in a busy life. I can enjoy some culinary creative thinking without getting overwhelmed by planning a whole stinkin’ week of meals!

But, alas, this is not really a viable option for me where I live. Some areas of the country do have more access to this type of market shopping opportunity.

Here’s the real deal, I like the idea of “clean eating” and I want to incorporate it into my life. Simple as that.

I admit, that I have been at a loss as to how to do it and do it right. Going “all in” isn’t quite right for me. That’s a little too stressful for me. There are a lot of negative influences in our food lives as Americans. And, I think that switching to a “clean eating” lifestyle is going to require learning how to navigate around those influences, and that will take time and effort.

So, I will start with baby steps. Let’s be realistic, I can’t just throw out everything in my pantry and live off the land today! But, maybe, someday, I will be pretty close to that.

Here are some of the rules that I will follow in my efforts to adopting a “clean eating” lifestyle:

I intend to avoid anything in a box, bag or can. If I find it too hard to avoid, I will pay attention to the ingredients. Less is more. Simple, easy ingredients that I am familiar with, that’s what should be listed on the package, nothing more.

I will use more wholesome sweeteners, like maple syrup and honey. If I end up using sugar, I am going to look for less refined and organic varieties.

I will switch to full fat versions of everything! YUP, that’s right. Why? Because the low-fat versions are not miraculously born low-fat. They are processed into low-fat versions, scarcely resembling their former full fat selves. Often low-fat versions need to get beefed up with the nutrition they lost from the process of getting “skinny”.

If following the rule above, that means I will also need to work very hard on portion control. Moderation, moderation, moderation…oooh, say it again!

Fresh and local or organic produce will be on every shopping list. Bonus if I get them a the local farm stands.

I will seek out local and organic meats. The other day I was at the grocery store and I took a gander at their whole chickens. The store brand chicken had a label that read, “may be missing some of the giblets”. What? What does that mean? Why? Were they not born with them? Where have they gone? And, if I have to ask that many questions about the chicken why on earth would I want to eat it?

I will avoid canned veggies, sauces, beans. This is hard. I cannot tell you how often I use these items. In fact, I am not sure this rule is even a reasonable expectation for me! I do not think I can give up my canned or boxed tomatoes! How will I make tomato sauce? At this point, it is not realistic for me to make sauce for the whole year from fresh tomatoes. But, I can avoid pre-made, jarred tomato sauces. I can avoid condensed soups. I can purchase dried beans instead of canned. Baby steps, remember?

Last rule, sometimes, I will need a reprieve. I will need to cut myself some slack about whether or not I am making the right food choices. Occasionally, I will need to err on the side of convenience. And that is okay.

For me, it’s about doing the best I can to stay healthy. It’s about balancing out my life and easing stress. So, as time goes on, these rules may be easier to follow.

Not to mention, as a culture, it seems as though many folks are beginning to question what they are putting into their bodies. Folks are banning together and requesting more accountability from the manufacturers selling our food. Hopefully, as time goes on, making the right food choices may not be so hard for any of us.

Happy eating, cooking and well wishes to all! Here are the resources I used when I was researching “clean eating”.

Here is a cool app I have recently checked out, I bet my next grocery trip will be twice as long since I will likely be putting all kinds of things into the app! http://www.fooducate.com

I also found a couple of websites that have a directory for local produce, figured I would share that as well. www.buylocalpa.org and www.localharvest.org

I also bookmarked a few of the sites that have recently viewed that have “clean eating” tips and info. Take from them what you will.
http://www.100daysofrealfood.com/2013/01/18/10-highly-processed-foods-to-avoid/
http://www.getting-started-with-healthy-eating.com/

First Day of School, For a Mom of a Special Needs Kid

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My beautiful daughter just turned three years old. It seems like just yesterday I was pregnant and eating taco salad with jalapenos and taking a loooong walk in hopes of getting labor started! Time moves by us so stealthy and fast, doesn’t it?!?!

Over the last three years we have been through so much, hospitalizations galore, scary health moments, necessary surgeries, doctors visits and follow ups of plenty! Somehow, in spite of all that, we managed to take advantage of early intervention services. We had five different therapists every week. They spent time helping Delainie to meet her developmental goals AND helping our family to help Delainie meet those goals.

At three years old, she is no longer eligible for those home based early intervention services. So, it is time to transition into preschool. The thought of it horrified me! Preschool?!?!? She is only going to be THREE! She has special needs and medical complexities! She CAN. NOT. GO. TO. SCHOOL.

Surely, this is every Mother’s reaction to sending her child to school for the first time. Right?

I told people Delainie wasn’t ready for school. But, in truth, I think I am the one who is not ready for Delainie to go to school. She proved that point the day we took a tour of the school. Delainie was all smiles and giggles. She was looking around, looking at the other kids, making eye contact and making me feel like a fool for thinking she wasn’t ready! It was in that moment that I realized she needed to go to school. It is the next chapter for her, for our family and for me as a Mom. It will be gut wrenching for me to walk away from her this first day, but she and I will only gain from the experience.

It took a considerable amount of time to work out her IEP. We had a three and a half hour meeting and I still didn’t sign the IEP before leaving! I bet those school folks went out for margaritas and talked about me that night! We finally did get a document that we felt good about though! We also worked to get approved for nursing care to accompany Delainie to school. I also worked on my reluctance to send her to school at all. But, I am happy to say, after working all those things out, she starts school, TODAY!

Yesterday, we went in to sign our final paperwork. And in true Delainie style, we had a little snafu before leaving the house. After she woke from her nap, her blood sugar was in the 90’s, which is very good. She refused to eat lunch though. So, I let her cool off and play a little while. In just a few short minutes she fell back to sleep. It made me feel uneasy. So, I asked the nurse to check her blood sugar again. It was not good. She had one of the lowest blood sugar readings she has ever had, 36.

Quickly, I pushed formula through her G-tube and had the nurse continue to check her sugar as the formula was going into the tube. Her sugar was going back up. Then she woke up. Good grief, this kid is good at scaring her Mommy half to death!!

As I drove to school I thought, “No way, can I send her to school”! No one knows her like I do. It’s not common to check her sugar the way I did, but I felt the need, thank goodness. Who else will “feel” the need? Who else can take care of her the way that I can take care of her?

I thought the scariest thing I had ever done was walk away from my child on her way into surgery for a five hour procedure with risks of brain fluid leakage. I thought the scariest thing I had ever seen was my child turning blue in my arms. But, the scariest things are what I am doing now, letting her go to school and not being there swoop in and intervene should she need medical attention.

I thought the bravest thing I had ever done was going on a long trip with oxygen and monitor in tow, alone with my baby, who had a habit of seizing and turning blue.

Now, I think, the bravest thing is what I will do today. Today, I will bring my angel to her classroom, meet her teachers, give her a kiss and walk out of the door, without her.

We have been through so much. So much of Delainie’s life has hung in the balance and we have clung to it with a ferocious tenacity. She would not be in this world today without that tenacity. We have been involved in every facet of her care. We have made difficult decisions balancing her health and her safety. We have seen things no parents should ever have to see. So, there is a huge level of fear with trusting her care to others, even if just for a few hours.

I sat in bed last night and wondered if something was wrong with me. No doubt there are plenty of things! Ha! But, I mean as a Mom. I know Moms who are relieved to have a few hours of time where someone else is in charge of their kids, Moms who are easily able to let go and not look back, Moms who tell me, “she will love school and you will be glad to have some time to yourself”. But, I don’t feel that way. I feel sick to my stomach at the thought of leaving her there. The last three years I have been her main protector. How can I assume another role, even if just for two and a half hours, three days a week?

As I drove her to school today I tried to be a rational person, very challenging to say the least! I affirmed to myself that we had done everything possible to keep her safe while in school. We have obtained nursing care, given the nurse very specific information about Delainie, her needs, her wants, and clues to know when she is not herself. We have been very specific with the teachers and staff about the same. So, as we headed down the road, with the nurse to support Delainie and my Mom to support me, I lifted my heart up to God. The final thing I needed to do was have FAITH that GOD can take the rest from here.

So, today will be eye-opening for me. I may have a momentary lapse and want to run in the other direction with my child, but I won’t. I may want to sit right down and be a permanent fixture in the room, but I won’t. I will want time to slow the heck down, but it won’t.

Above all else, I want this day to be amazing for my little girl, and it will.