I remember longing to be a parent and imagining rocking my baby peacefully, singing lullabies. I envisioned myself baking cookies with them, making arts and crafts, kissing away boo boos and tucking in angelic children at night. I could see in my dream that one day they would grow up and have a perfect family just like mine. Occasionally there was even an image of the rare sleepless night of rocking and cuddling a sick child.  

I've had all of those experiences. Well except the growing up and having a family part, I am NOT ready for that yet! I've also had so many more that I never would have imagined I would. So many great experiences. Hearing my children say "I love you," kisses blown through windows and across fences, mastering math facts, sounding out a word for the first time, celebrating school achievements, watching them take their first step, shoot their first goal, throw their first ball, speak their first sentence and then the second and third and one thousandth. I've had the joy of taking a walk with nowhere to be and seeing the world through their eyes, reliving some of my favorite childhood experiences. I've searched the Christmas tree lot for that perfect tree and then enjoyed steaming hot cider. I've watched Easter Egg Hunts where one child is elated with finding just one egg. Celebrated birthdays, anniversaries, anything and everything. Being a parent is wonderful. To love someone solely because they are and to revel in all the delightful things they do. 

That love is also why being a parent is so terribly tough. I never knew how much more I was signing up for. The tears I've wiped might number in the millions, I've cleaned up gallons upon gallons of vomit, wiped more bottoms than I care to count. I've hugged my children too many times as they've poured out a broken heart to me and known as I cried with them that I can't fix this. I cannot take the pain away. I've kissed my baby good-bye in the operating room and I've left my hysterical son on a kindergarten playground when his schedule was altered and he could hardly cope with that huge change. I've restrained my sensory defensive child just to trim their fingernails until we learned how to soothe him before and after. I've sat in IEP meetings where every one of my child's deficits is highlighted and gone over. I wouldn't change any of this because strangely it is all these negative moments that make me love my children all the more fiercely and why my heart aches so much tonight.

For several days Elijah has told me his stomach hurts. Since he is otherwise acting pretty normal I haven't thought much about it but tonight he kept coming down for two hours after bedtime because his stomach hurt so I tried a different tactic and asked him to tell me about school. I knew transitions are hard for him and he was a little slow with adjusting to a new classroom and grade. I wasn't prepared for what I got. His little body just melted into mine as he told me about how confusing it was and how he wants to be in his classroom more. (He is pulled out for almost half the day). He knows the other kids are doing stuff while he goes to speech, occupational therapy and the resource specialist and he is worried about missing out on fun things and falling further behind. He then goes on to tell me he is really scared he can't do second grade math. "First grade got so hard at the end and I know second grade is going to be harder. I want to be smart but I don't know if I can do it." He goes on to say how the class goes so fast and he is just so confused about what he should be doing. At this point tears are streaming down both of our faces. I hugged him and rubbed his back and told him how much I loved him and how smart I believe he is. I promised to talk to his teachers and see if we can work it out that he misses less or perhaps differently. Even still when he went back to bed I just felt sad.  

I wish I had said so much more. I wish I had said something like this.

You are smart Elijah, so incredibly smart. I wish I could make learning easier for you. I wish I could make autism (feels like such a nasty word tonight), learning disabilities, visual processing challenges, language delays and sensory processing disorder all disappear. Your brain works differently than mine but it doesn't make you any less smart. Most boats don't fly and most airplanes won't sail across the ocean but both can get you to Hawaii they just have to do it differently and it's likely going to take the boat a little longer but they both can get there just differently.  Those riding on the boat might have more fun and see a whole lot more along the way. Being different is okay. I wish you could see how incredibly intelligent you are. I know IQs mean nothing you your young mind but yours is up there buddy and that's pretty impressive. You remember things like no one else can. You have amazing problem solving skills and you think outside the box. You ask good questions and you desire knowledge. I am so afraid sometimes in our effort to teach you to read and write that we are going to lose some of that. You are amazing because even though school is hard, hard work you come back every day. Even though it is hard to write the letters and you cannot always remember which way they go, you still made me a birthday card. I love that when you are happy and excited your whole body gets happy and excited too as if you can't wait to tell the whole world about what you've just discovered. You know everything there is to know about Legos, Avengers and Justice League and what fits into which category. I don't know half of what you know in that regards. You never forget a fact about animals, the earth or space. You've probably never been taught the scientific method but I've seen you use it. You love to discover what works and what doesn't. The why and how of things. You are one of the most amazing kids I have ever known. Most importantly you were created by a God who loved you before you were ever born and He still loves you, even more than I love you and that's a heck of lot. At least to the moon and back a dozen times. You are loved! You are special! And you are just right just the way you are!

Sadly I didn't say that though I did mumble some encouraging things but thankfully I have tomorrow.  And tomorrow I shall try to communicate all of this to him and go to school and try and make things better for him.  If there's one thing you've got Elijah, you've got a mama that has your back and I will always try to get what is best for you.

Almost A Mom's Worse Nightmare

Today started like typical summer days in my house.  When I got up at 6:30 there was already a child logged onto Lego.com on the computer.  We all slowly got out of bed and shuffled around wrapped in blankets to ward off the early morning chill.  Outside was wet and foggy but like most August days it promised to be warm and sunny later on.  At 8:20 we rushed around in a panic realizing we had to be leave for swim lessons in 20 minutes.  We were out the door in time and at the Coast Guard pool 6 minutes before Elijah and Mary had to be in it only to realize that we had the skirt for Mary's swim suit but lacked the rest.  Thankfully Naomi isn't too much bigger than Mary and their lessons are at different times so we dressed Mary in Naomi's suit and they were off to the pool.

I sat and watched their lessons and marveled at how well they were doing and how far they have come.  Both Mary and Elijah wanted nothing to do with swim lessons at the beginning of summer.  Mary didn't want to be told what to do and Elijah didn't want any part of his head to get wet.  Here I sat watching Mary swim a few feet at a time and Elijah gracefully float on his back and then do six bobs in a row without a whimper, a whine or a tear.  I thought to myself, watching him in the pool where he is trying everything that is asked of him and listening to the instructor you would never know he has autism.

Afterwards Naomi and Bethany had their lessons and then everyone changed into warm dry clothes we headed for home with the fog slowly lifting.  There is some bickering about the correct way of singing "Under the Sea."  We stop at city hall and pay our water bill and then a few minutes later pull up in front of the house.  I help Mary out of the car, remind everyone else to get their suits and then go unlock the house while everyone else climbs out of the car.  We head inside and everyone runs off while I do some laundry and prepare lunch.

Thirty minutes later I am walking from the laundry room to the kitchen right past the front door when I notice movement in the car.  I think it must be a shadow from the tree but stop and look again.  Someone is in the car!  I run out the door the ten feet to the car and Elijah is in the car crying.  I let him out as ask, "Have you been in the car since we got home?"  He replies, "(Unnamed Sibling) slammed the door in my face and I've been trying to get out."  My heart is in my throat and I am trying not to cry as I hug him and pull his hot, sweaty body from the car.  It is only in the 60s but it is much hotter in the car.  I am extremely grateful that the car is parked in the shade.  This could have been so much worse, so very much worse.  In my head I am berating myself for not checking that everyone was out of the car.  How did I not notice?  What kind of parent lets this happen?  I thought he had done what he always does when we get home and ran upstairs to his room.  I had let myself be lulled by his adherence to routine and even though I didn't see it I assumed the routine was followed.  I thought he knew how to exit the car.  I can't help but think about what if I had been a few minutes later.  While holding tight to Elijah and giving him a nice cold drink of water I did what most scared, upset parents would do and I yelled at the sibling who slammed the door in his face.  I even told them "Elijah could have died just because your were mad at him."  Then I berated myself over and over again in my head while the child cried on time out.

A little later when I had myself together a bit better I asked the child's forgiveness for screaming at them and explained in a much calmer way why it is so terribly awful and dangerous to slam the car door in someone's face, especially someone who cannot easily open it.  This afternoon we will all go out to the car and we will not come in until all my children can unlock and open the doors completely on their own.

Tonight will be so much like any other night.  The kids will take baths, we will read stories and then we will say our prayers and tuck them into bed but tonight I will be so incredibly grateful for this normalness because we came too close to it being very, very different.

2nd Annual Feeding Tube Awareness Week - Raising Awarenss in the Medical Community

Today you get a twofer as both yesterday and today's topics are about raising awareness in the medical community.  Thankfully, most of our experiences have been very good, but there are three things in particular I would like to tell the medical community as a whole, if I could.

The first is that my daughter is already traumatized, she has had tubes stuck up her nose, and other places we won't mention, needles everywhere, pokes, prods, woken up with arms tied down, masks on her face and many other things that she never understood.  Please don't do anything to make that worse.  And if you are a doctor, nurse, MA, PA, NP, receptionist, custodian or anyone who works at a medical facility don't ever let someone pull a Bard Button out of a child without pain management.  That five minute experience was likely the worst Naomi ever had, she's had more painful things done but the pain was managed.  The Bard Button incident happened one November day.  Naomi's first g-tube was a Bard Button which she had  for six months to allow her stoma to heal.  We were now going to switch it to a MicKey button that was lower profile and could be changed out at home.  We went into the procedure room had an okay visit with our GI nurse practitioner who nearly reduced me to tears when she told me I had to get more volume into my constantly puking three year old.  After that, she called in the GI doctor to switch her to a MicKey button.  He looked at me and said "This is going to hurt a little."  Well I was prepared, we'd done blood draws, injections, ng tubes, I had a book to distract her and Naomi lay on the table with her head in my lap while I held the book so she could see it but not her belly.  The doctor pulled out a metal thing and stuck it into her button and pulled.  Naomi let our an unearthly scream and he yelled at me to grad her hands which I did, he continued to pull and Naomi continued to scream, not the scream of a little girl but the scream of an injured animal.  Twice the metal device he held slipped off the button and after about two or three endless minutes the Bard button popped out with stomach contents and blood all over me, the doctor, and Naomi and Naomi, the nurse practitioner and I in tears.  Then I got a look at that thing.  The tube part was the diameter of a pencil or 18 french to be exact, it was held in place by what looked like half of one of those bouncy balls you can get for a quarter out of the machines at the supermarket and it had just been pulled through an opening the size of a pencil.  They give her an amnesiac before putting a mask over her face in the OR and didn't even suggest so much as Tylenol before this.  Naomi continued to cry for nearly two hours after that procedure.  That was the last time we ever went to that hospital.  I hope no other child or adult has to go through that without pain management.

The second thing I'd like the medical community to know is that when it comes to questions about food, I need you to ask very specific pointed questions.  Every time we go to the pulmonologist after we get her weight and height, o2, temp and blood pressure they ask their routine questions.  How often does she need her inhalers?  Have any of her medications changed?  Any procedures/hospitalizations since the last visit? How is her eating?  I do really well until the last one.  I just don't know what to say.  I don't know what they are asking.  Is she meeting her nutritional needs?  I think so.  Is the tube feeding going well?  No puke this week.  Is she eating well orally?  Well compared to last visit, yes, compared to her classmates, no.  At the pediatrician they will ask me what type of milk she drinks and how much.  I just stare, they stare back, I stare a little more and then finally say she doesn't drink milk and I want to follow that with it must say that a thousand times in her chart.  If you want to know about her eating be specific and I can answer that but with general questions I don't know what to answer.

Finally the last thing I want them to know is my daughter is a little girl made up of many parts and they're all connected.  She is not two ears, a nose and a throat, nor is she a GI tract, a brain and nerves, or a set of lungs and their airways.  Please communicate with her other doctors, you accomplish so much more that way and LISTEN to her therapists, they have spent far more time with her than you have.  She is a complete human being and even if you specialize in one area you need to see the picture as a whole, also as she ages she deserves a voice too, please talk to her even if she chooses not to respond.

I do want to close in saying we have met many clinicians, some we liked, some we didn't like and some we loved.  I do truly believe that each one does want to make Naomi better and for that I am deeply grateful.

2nd Annual Feeding Tube Awareness Week - How Has Awareness Changed Me

I've been contemplating what to share today for 48 hours now.  How has awareness about feeding tubes changed me?  I've always thought I was pretty accepting of people and their differences.  I guess the biggest change would be that I understand hunger better, I know what it looks like to starve.  Naomi was truly starving before she got her feeding tube.  About a year after Naomi got her tube I was watching a video from World Vision with my small group from church.  In the video they were talking about hunger throughout the world and then it showed a picture of a little boy in Africa who had a ng tube.  I watched him lay there with that tube, so spent from his starvation that he could not push the fly that crawled across his face away.  Very slowly that boy became more than a starving little boy in Africa, he became my daughter.  I remembered the days when she didn't have the energy to play, the times when she felt too awful to even snuggle.  My daughter never got to the point that little boy was at simply because she was born in a better zip code.  Had my daughter been born in the horn of Africa I might not have her.  That moment, that realization I think changed my life forever and if I hadn't understood what starvation is I couldn't have had that moment.  Since then I feel different about those who are hungry.  I have much more compassion.  Hunger makes you cranky, hunger gives you brain fog, hunger makes you tired, hunger makes it harder to work, harder to eat and harder to live.  I needed to do something.  Since then our family has chosen to sponsor children in Madagascar and the Philippines, we give money to build wells in Haiti, we regularly donate to our local food pantry and I am now there every week with Ladybug Connections striving to make a positive difference in the lives of others.  We got a second chance with Naomi and I hope to give others a second chance too.

I know it seems a strange jump feeding tubes, to starving children in Africa, to hungry families here in my town but really it isn't that far of a stretch.  We all need to eat and some of us need help doing so.

You can help the hungry abroad by supporting groups like World Vision, Nazarene Compassionate Ministries, Doctors Without Borders or a small group like Una Vida who gives dignified work to marginalized women in the Dominican Republic.

You can help the hungry locally, by finding your local food bank and giving food, money or time.  Every single time I step foot into the grocery store I buy something for the food pantry, this is double good, the food pantry gets food and I make less unnecessary trips to the store.  Also find out if you have a local soup kitchen, they could always use help.

Finally you can help the medically hungry, those who can't eat orally by supporting Feeding Tube Awareness, the United Mitochondrial Disease Foundation, The CURED foundation, your local Children's Hospital, or you could help me with my toy drive for Children's Hospital Oakland, the toys feed the spirit of hospitalized children.

These lists are nowhere near complete and please feel free to suggest other great organizations in the comments.

Just remember you can't save the world BUT you can be the world to someone.

2nd Annual Feeding Tube Awareness Week - A Day in Our Life

Today I will give you a glimpse of what a typical day for us is like, except that we don't have typical days so how about yesterday.  Yesterday started early with beeping, it is a sound somewhere between a commercial truck backing up and the fryer at your favorite fast food restaurant.  Naomi's pump is alarming saying "No Food" or "No Flow In" or "No Flow Out" and I still half asleep try to diagnose and correct the problem without turning on any lights or making any noise and waking the kids.  Thankfully this only happened once in the wee hours of the morning.  Then we had the 5 a.m. wake-up call because Naomi's bladder is bursting.  Most days she goes back to sleep and yesterday she did.  I get up and unhook Naomi from her feeding pump often before she wakes up and flush her tube with an ounce or so of water.  We get everyone up and the morning madness begins.  Trying to get lunches packed, breakfast eaten, hair brushed, clothing on and appropriate footwear and outerwear for everyone.  Naomi is served breakfast and yesterday like most days she refuses to eat anything.  Some days she even goes as far as dumping the plate on the floor, those are not good mornings.  We head off to school dropping the biggest kids at the elementary school and then taking Naomi to preschool.  Naomi LOVES preschool.  She has a mid morning snack there, which I am told most days she partakes in.  I pick her up and noon and then we come home for lunch.  Yesterday she cried and told me she didn't want lunch but when I insisted for the eighth time that she must come to the table, but didn't have to eat, she finally relented and came.  When she saw that she could use mini cookie cutters to cut her peanut butter and nutella sandwich into any shape she wanted she was excited to make it stars and ate about 3 stars which was about 1/4 of the sandwich.  She also took a few sips of chocolate milk and one bite of an apple.  Depending on how she had eaten orally that day she gets a bolus feed by tube after lunch.  Yesterday she got 6 ounces of blenderized diet (real foods we blend up in our high speed blender to be smooth enough to go through her tube).  We feed this by 60 ml (2 ounce) syringe.  The rest of the afternoon was spent playing, watching a movie and just being four.   We have another battle to get her to the dinner table (she insisted her tummy was full despite it having been 5 hours since she last ate).  Once there after carefully sliding her salmon off her plate she did eat about 1/2 cup of brown rice with Parmesan cheese and a few nibbles of broccoli.  After dinner is some quiet playtime, a bath and off to bed.  At bedtime, Naomi gets hooked up to her overnight feed which is 750ml (about 24 ounces) of pre-digested formula and a jar of baby food fruits or veggies.  We tuck her in bed hook her up and pray the pump will be nice to us tonight and not alarm too many times.

Our crazy nighttime setup.  Bethany in the top bunk, Naomi on the bottom, Mary in the trundle and hoping nobody trips on the tubes.  And craftily having Mary's head at the opposite end as Naomi's so she doesn't tug tubes and cause huge messes overnight.

Feeding her penguin and she gets a bit of water.

This was yesterday, some days are more complicated as she isn't on any medications or in a vomiting episode right now and she is hardly getting fed during the day in hopes of better oral eating.  Sometimes she is on slow continuous feeds when her gut is really unhappy and is hooked to her feeding pump 16-23 hours a day.  Some days are less complicated as she did have a point in time where she only got a small overnight feeding.

But really other than being tethered to her pump at night and some short day time feedings, Naomi is a typical little girl.  We do have to care for her tube which involves keeping it clean and dry, changing it out every 3 months, which we do at home and then we have to order her supplies as they aren't things we can get at the drugstore.

Posing for the camera!  And no she didn't hurt her nose she just loves Band-Aids and attention.

So there you have it a day with Naomi.

2nd Annual Feeding Tube Awareness Week - Why Naomi Has a Feeding Tube

I touched on this yesterday, but here it is a little more in depth.  First and foremost, we don't know exactly why Naomi doesn't eat.  There is not one overarching diagnosis that can explain it.  We have learned through meeting other families with similar children and many therapists who work with kids who struggle to eat that feeding problems in children are usually quite complex.  Here is what we do know about Naomi.  She had GERD (gastro-oesophogeal reflux disease) which adults know as heartburn, she had a moderate to severe case that got worse with age rather than better.  Her last ph probe though shows that was completely resolved.  She was anemic, anemia alone can lead to anorexia (lack of appetite).  She has Reactive Airway Disease, which is a sneaky way of saying she has asthma without calling it asthma.  When you struggle to breathe you need more calories and in young children it is often difficult to coordinate breathing and swallowing.  She had obstructive sleep apnea caused by large tonsils and adenoids, that also obstructed her ability to breathe through her nose and made swallowing more difficult.  Her tonsils and adenoids came out in April on 2010.  Her mouth muscles are weaker than a typical child her age.  She has had periods of time where her motility slows way down and her stomach and intestines "stall" and food just sits there, then she has had times when her stomach speeds way up and "dumps" its entire contents into her intestines, dumping syndrome.  Her intestines rebel and much vomiting ensues. 

None of these issues alone explains Naomi not eating and growing well but together they start to paint a picture.  A picture that says eating is painful, eating is uncomfortable, eating is scary, eating is exhausting. While still very young Naomi learned that for her all these things were true.  Most children learn that eating feels good, eating is fun, eating is exciting, eating gives me energy.  Eating is not instinctual (sucking is, but not eating).  Most kids learn that eating is good because as a newborn they cry because they are hungry (don't feel good), something is stuck in their mouth, they suck, they get food and their hunger is satisfied.  They feel much better, eating is good.  However when they feel worse after eating or something scary happens while they eat (choking and gagging, struggling to breathe) they learn that eating is bad.  So in a nutshell Naomi learned that eating is bad and now we struggle with teaching her that eating can be good.

Participating in Birthday's with cousins and her favorite princess on the cake helps teach that eating is good.

2nd Annual Feeding Tube Awareness Week - What Awareness Means to Me.

Naomi wearing instead of eating her food

At almost 2 years.

I never thought I'd be the mother of a child with a feeding tube.  I never thought my children would be anything other than perfect.  I should have figured out that things don't pan out like we hoped and planned when I developed pre-eclampsia with my first pregnancy and Sam was born after my first (and only) private Leer jet flight from Valdez to Anchorage for an urgent induction, but how quickly we forget the things that weren't according to our plans, especially when you're raising children.  After Sam, came Beth and after Beth came Eli , after Eli came Naomi and by that time I really had the hang of this mom thing.  I could nurse a baby, do dishes and read a book to one of the older kids all at once.  I could safely navigate four small children through Target and come out with my sanity still in tact.  I'd given up on store bought baby food, I had the food mill down and my baby was going to eat spice.  No bland diets for this one and then something changed.  Naomi didn't grow like the others had.  First she was dainty, then petite, then small, then downright skinny.  Naomi also didn't eat quite like the others.  She struggled to swallow purees, not quite sure what to do with them, she weaned herself from the breast not long after turning one, but didn't pick up drinking other things to make up for it.  We tried all sorts of tricks to get her to eat more and better, we gave her high calorie formulas mixed with half and half, I fed her with a sippy cup while she slept because she would suck out of instinct.  We worked so hard to get Naomi to grow, we went gluten free and started iron supplements when tests indicated celiac and anemia.  Not too long after Mary was born she started vomiting.  At least a few times a week and often hours after she had eaten.  We were lost.  We couldn't feed our baby and make her grow.  We tried medications that have the side effect of stimulating your appetite but they only had a short-lived effect.

In the hospital with the ng tube.

Squishing berries in her hair at feeding therapy.

Finally at 2 1/2 years Naomi wasn't just skinny, she was starving.  She had quit growing and her body was on the verge of consuming it's own organs to give her energy.  At that point we finally conceded that Naomi needed a feeding tube and she was admitted and received an ng tube.  The tube allowed her to start growing again but came with it's own difficulties, Naomi was disturbed by the tube down the back of her throat and she completely quit eating.  What a bittersweet realization that was.  The exact thing that was allowing my child to grow was preventing her from eating.  Two month later Naomi got a more permanent g-tube, a tube that goes through the abdominal wall directly into her stomach and two years later she still has it.  We don't know why Naomi wouldn't eat other than eating was uncomfortable for her.  We don't know why she did and still does vomit.  We don't know why sometimes her stomach and intestines move food too slow but we do know that Naomi has come a long way since then.  She is GROWING!!!  She is HEALTHY!!!  She is EATING!!! but not enough to survive.  Naomi can and does eat orally but she is still g-tube dependant.

Naomi can feed herself.

She eats on the go too with her backpack.

Okay, so finally getting to the point.  Awareness means to me that Naomi can go to school and be accepted by her peers as someone who just eats a little different.  Awareness means going to the ER or to some doctors and having them understand the journey we've been through.  Awareness means that another mother whose toddler is getting a tube for the very first time might not think she failed to feed her child, as I thought, but instead will know she is giving her child health.  Awareness means people asking questions instead of staring.  And most of all awareness means we don't have to hide that we are different. 

Awareness means not thinking of Naomi as disabled but instead thinking of her as super-abled.  Naomi can eat without moving a muscle, now that's impressive!

It keeps rotating this pic, but here's a Super Tubie with her Silly Sis!

A Whole New Do!

This post is long overdue, but I wanted to wait till we had shocked all our family in person.  Elijah has been clamoring for over a year to get a haircut like Sam's and daddy's.  I have nothing against crew cut or the regulation military cut, whatever you'd like to call it, it's just that I love Elijah's hair, thick beautiful blond locks.  Elijah is my biggest (for his age) and I just want to cherish his babyhood as long as I can but he likes to remind me that he is five and five is quite big.  So the second week of April we took the plunge and let daddy cut his hair.

Once Daddy got started I began to have regrets.  I never thought I was attached to Elijah's hair.  He was growing up very quickly in a matter of minutes, instead of slowly over weeks and months.  And daddy cut it shorter than I had anticipated.  I think I almost hyperventilated as I watched all those beautiful locks drop down into the bathtub.  I did realize Elijah does have some awfully cute freckles on his head.  These are new since his bald stage from birth -2 years. 

Elijah loved the new hairstyle immediately.  After all he had lobbied for it for nearly a year.

Although a bit slower, I am coming to love it, how could I deny my little boy such glee, even if it makes him look so much older to me.  I must remember that five is quite big.

I received this in an email on Mother's Day from a special mom friend Judy.  Judy and I would probably never have met if it weren't for our special children and now although we see each other only monthly and communicate sparingly online, I count her as a cherished friend. 

One thing this journey with a special needs child has taught me is that joy shared gets multiplied and burdens shared are divided. 

So to all my mom friends I cherish you and the support you give me, and for those journeying in Holland with me I cherish you all the more.


TO YOU, MY SISTERS

By Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed.
Something wasn't quite right. Then we found ourselves mothers of children with special needs. We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.
We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in
special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours. We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Dear Congress...

I understand your having trouble agreeing. 

That all of you want it your way and only your way.

And you think your doing what is best for your constituents and the American People.

I think you're all full of it.   Have you thought for one minute what a government shutdown means to the thousands of Federal employees and the military?  It means no pay.  And here are a few of the details.  The military will not be paid, not a cent but will continue to serve.  They will work for an undetermined period of time without any compensation.  Since they are working they have no opportunity to try to earn any extra income to do things like buy groceries or pay for a prescription.  And worse, the Federal Employees are won't work and may or may not receive payment for that time, no one seems to know AND they still need their supervisor's permission to go and seek any other work.  I heard senator Ron Paul saying that we will just need to go to our landlords and ask them to wait to be paid.  That is what everyone does.  I have a benevolent landlord and that might work with her, it might even work with our utilities.  I wonder how that would go over at the grocery store?  Do you think I can waltz in there, fill my cart with groceries and ask them to let me pay next week?  Somehow I doubt it.  How about the gas station?  After all my husband is going to have to continue to commute to work without pay.  What do you think the attendant will tell me when I ask to pay sometime in the future when Congress gets its act together?  How about the toll taker on the bridge?  Or the bus driver when the gas runs out?

I am thankful that my family has built up some savings in the last year and we can make ends meet for a short time without pay.  However having been a military wife for 15 years I know the financial situation in many military households, the money runs out before the month.  By the end of the pay period the checking account has only change, the car is running on fumes, and dinner gets quite interesting as you try to figure our what you can make with the remnants of your cupboard.  Many military families are stretched so thin that just a child getting sick and needing to buy a bottle of Motrin can be a financial stress.  Imagine what a late paycheck would do?

I am glad dear senators and congressmen that you have taken care of yourselves, you won't have to think about these things.  Your mortgage will be paid, you'll have food on the table and gas in your car.  Some of you will give your pay to charity which I admire, but tell me how does that help the military and federal employees make ends meet without a paycheck? 

I sign off with one last suggestion for you.  Since you are acting like young children in your bickering and refusal to even try and relate to what the other side is saying I would suggest you do what I make my children do.  Sit down with your adversaries on the other side of the aisle, hold hands, look into each others eyes and say five nice things about each other and MEAN IT.  I like your clothes doesn't count.  Then sit down and have a discussion and compromise with real give in take, instead of stomping and pouting.  If my 3 year old can do it, so can you.

Sincerely,

Heidi French
Coast Guard Spouse
American Voter
Mom to 5

Happy 2nd Birthday Mary Evelyn!

Two years ago, in the wee hours of the morning, James and I made the crazy drive into town while I was in hard labor, wondering if we'd make to the hospital on time.  Little did we know the surprise in store for us.  We were expecting our fifth child and the last one had come in just about four hours so we knew the rush was on.  We were met in the emergency room parking lot by my sisters and eager staff who refused to let me walk up to labor and delivery, although I insisted I could.  We were whisked into a labor and delivery room and one nurse took my vitals while the other nurse checked my cervix and exclaimed she's at 10 centimeters.  A few minutes later she informed us that the baby wasn't coming head first.  The presenting part was an elbow.  They roused the on-call doctor (as it was about 3:30 a.m.) who came in an discovered that the baby was indeed sideways trying to come out elbow and shoulder first.  Without getting too much into anatomy let me just say that doesn't work.  So I went from we'll have this baby any minute to we need to do a c-section and quickly because if my water broke (which amazingly it hadn't) the baby's umbilical cord could be compressed underneath it.  The hospital had to call in a very grumpy anesthesiologist and I was wheeled down to the OR and surgery commenced at 4 a.m.  Because of the baby's position they had to make a much longer incision than usual.  Mary Evelyn French was born at 4:39 a.m.  She weighed 6 pounds 15 ounces and was 19 1/4 inches long and other than needing a little extra stimulation to get breathing was fine.  I wish I could say the same for myself.  Mary's birth took me much longer than any of the others to recover from.

Mary was born at a difficult time in our lives.  Naomi had just been diagnosed with celiac and was still struggling greatly to grow.  Two days after Mary and I were discharged we were at a speech and hearing evaluation with Naomi.  By the time Mary was two weeks old she had been to two medical appointments for herself and many more for Naomi.   Being the baby has it's advantages and Mary has never been at a loss for an audience.  From the moment she learned her grins and laughs delighted the other kids so much she has been our family entertainer and if being nice doesn't get everyone's attention, she'll get it being naughty. 

Mary is the most curious spunky little girl I have ever known.  We've thought about starting a service to ensure your home is childproofed.  It is quite a simple business plan.  We will drop Mary off at the clients home for half an hour, if there is anything remotely possible to get into Mary will be in it.  She's stacked stools on chairs, opened a childproof lock or two and has sonar abilities that can tell if a bathroom door has been left ajar anywhere in the house.  And given a minute or two she can make toothpaste into hair gel, flood the kitchen floor, eat half a box of hidden candy and draw three masterpieces on the wall and the newest appliance. 

Despite her constant "trouble,"  Mary is truly a delight to have around.  She freely gives kisses intermixed with headbutts and has a delight in the world around her that can only be seen through the eyes of a small child. 

Happy Birthday Mary Evelyn.  Mommy loves you!

Pinewood Derby

Last night was the AWANA pinewood derby.  My kids love this event.  I love this event.  It's a lot of fun, but it is also a great reminder of one of life's lessons better learned early.  Not everybody wins.  Actually most people lose.  In a society that gives an award for everything, it is kind of refreshing to go to an event where most of the kids leave with only the satisfaction of having tried and putting forth their best effort. 

Learning this lesson isn't always easy.  All the kids had a great time designing and painting their cars.  They went with high hopes of how their cars would do in the races, but Naomi was the only one who left with a trophy.  She got third place for design in the Cubbies division. 

Elijah took losing the hardest.  He cried.  Big, fat crocodile tears.  Disappointment is hard to take but it is part of life and as much as I hate to see him cry, I want him to learn that we often lose and when we do it with grace and then learn from it sometimes were better off than if we had won.  Overall the kids had a good time and the oldest three are already talking about how to improve their designs for next year.

I swear Naomi wasn't clobbering Sam with her trophy.



To My Friends With Special Children...

We always gravitate to those like us.  We join knitting circles, book clubs, hiking groups and community service organizations.  We watch the game with other sports fans and we go to the beach with other beach bums.  Whatever your fancy there is a group for you.  When we become parents, at least the females among us, we often join mom's groups. 

But there is one group that none of us aspire to join and that is support groups for parents of medically fragile or challenging kids.  We join these groups for the same reasons we join the others.  We want to be with someone like us.  We want someone we can relate to.  We want to vent to people who REALLY get it.  We want someone to lift us up and celebrate each milestone no matter how obscure or non-eventful it might seem to others.  We pass on doctor's names, funny little tips (how else would I have found out that the syringes that are made for feeding baby squirrels are highly superior to the medical grade ones), the latest research and tried and true wisdom.  We also share each others sorrows.  For as much as there is great joy, there is great pain.  As I become more and more involved with other mothers who have medically challenging children, I know more and more who are suffering, from depression, from despair and from grief.  

This is something I did not realize was part of the package of getting the support, encouragement and understanding that I so desired.  The grief of one mom, is the grief of us all.  Even if our child is not suffering now, we realize how fragile they really are.  Nothing can be taken for granted.  Every day children are hurting, they are in pain that doctor's cannot touch.  Every day their parents are watching, hoping, praying, researching and feeling utterly helpless because their child suffers and they cannot fix it.  Every day a parent gets bad news, really bad news.  The kind you hear about and think I don't know if I could handle that.  Parents get told their child is dying, there is no cure, there's nothing else we can do and then they have to go in and decide if and when and how to tell their child.  They grieve their child's future while trying to make the most of every day.  They appear strong, almost saint-like but inside they are all churned up, so many feelings, so much pain.  I am here to say they are not alone.  I grieve for their children and for them.  So do many others.  More often than we would like to admit we are unable fix things and the only response is to grieve and pray.  Grief is not giving up hope for a future, that is never done.  Grief is realizing that something precious has been lost and mourning that.

To all my friends who suffer with your children, you are not alone.  I grieve with you.

Turkey Disaster Diverted!

Naomi woke up this morning in a pleasant mood.  That right there is reason for celebration.  Naomi usually wakes up grouchy and there is a host of things that can send her mood into a tailspin in the morning. The trouble is they change every day, sometimes it's eye contact, sometimes I suggest we get dressed to soon, sometimes one of us talks to her and she wasn't ready so a happy girl first thing was exciting.  Never mind that I've got too big kids home from school today with a virus, I've got a happy Naomi in the morning so I'm going to celebrate.

Well not only was she happy but she wanted to EAT right away.  I usually cannot interest her in food until 10 a.m.  She wanted turkey so Bethany feeling chipper after her Tylenol kicked in ran to the fridge and pulled out our gluten free, nitrate free turkey lunch meat.  Naomi started to wail.   I thought it was because Bethany got the turkey and she wanted me to but, no, she wanted different turkey.  I pulled out some leftover chicken from the fridge and told her it was turkey but she started to cry harder.  "NO, I want different turkey!"  Bethany and I tried for half an hour to tell her there was no other turkey and this is what we had and she proceeded to cry harder and harder insisting she want different turkey.  I finally left her alone to diaper Mary and brush my teeth and hair and came back to a still crying Naomi.  I began to think how am I going to get any food into her mouth or a tube with her laying on the floor throwing a fit.  In case your wondering tube feeding does take some cooperation or we will have a huge mess and potentially a removed tube.  Finally at my whits end, she'd been crying nearly an hour, I asked her if she knew where the "different turkey" was.  She got up took my hand and led me into the dining room where the grocery bags of non-perishable food from our last grocery shopping trip sat on the table and pointed to a bag.  I peeked in and there on the top was a bag of beef jerky.  I pulled it out to a squeal from Naomi. "My turkey!"  Turkey disaster diverted and despite two sick kiddos, I think it is going to be a very good day.

Addendum:  As I was getting ready to upload a picture of Naomi with her "turkey" my computer crashed so I am publishing this from my parent's house.  Thanks mom and dad!  So today turned out to be an interesting day and hopefully the computer guy will be able to fix our computer without draining our bank account.

Jelly Belly Basket Weaving - Fun time with the girls

Yesterday was a momentous occasion.  Bethany wove her first Longaberger Basket.  I wove my second and had a great time with my mom, sister, niece, mother-in-law, sister-in-law, Bethany and Naomi (all though she just watched).  Longaberger has become somewhat of a family tradition. 

My mom loves Longaberger and gave me my first basket a hand-woven doll cradle as a young girl.  I now have a house that is adorned with many baskets and even sold them for awhile.  I have wanted to go to the Longaberger homestead for years, but the trip has not happened.  But we did get the next best thing.  Longaberger came to us.  We went to the Jelly Belly Factory in Fairfield, California and with the assistance of expert basket weavers we got to weave our very own one of a kind basket. 



Bethany and I with Ray our Professional Basket Weaver.



We also got to sample Jelly Bellies and fudge.  What could be better?  Naomi loves all the different yellow Jelly Bellies.  Bethany loves to try all of the Jelly Belly recipes to make different appetizing flavors like root beer float (2 root beers and 1 cream soda) and Blueberry Muffin (2 blueberry and 1 Buttered Popcorn).  We discovered it doesn't matter what language you speak Jelly Belly has the recipes written out for you.  There was German, Greek, Arabic and Japanese to name a few.

The whole family was going to go but alas poor Sam woke up in the morning with a 102 degree fever so daddy and Sam stayed home.  We left Mary too.  Please don't tell her she missed anything special.  And Elijah chose to spend the day with Papa.  We opted not to go on the tour this time.  We've been at least half a dozen times already.  The tour isn't that spectacular that multiple trips are required but the abundant free samples at the end, they even give them to the babies, now that is special.  The kids really like the paper hats they give you to wear as well.

What we thought was going to be a family outing turned into a fun multi-generational girls day out where we got sweet treats and came home with beautiful baskets woven by us!  Today was a success for sure.


Me, my niece, Bethany, my sister and my mom in front of the Longaberger Basket.



Cousins.



I've Lost Touch With Reality

It looks like Naomi might be in a good position to try to wean from her feeding tube.  She no longer vomits.  Words cannot express how happy that makes me.  Until you have cleaned vomit from clothing, bedding, furniture, carpet, hardwood, pavement and people daily for a prolonged period of time you cannot understand how blessed mommies of persistent vomiters feel when they get a few emesis free days.  She is growing, very slowly, but growing.  Her celiac is under control and we are confident in the gluten free diet.  She no longer has huge speech delays and is very interested in other children and what they are doing and we finally have a date for her tonsils to come out the end of April so unless the bronchoscopy shows aspiration damage we are planning to start being more aggressive with her oral eating in May.

Here's my big problem though.  I have no idea what "normal" is for a preschooler's eating habits.  Although Naomi is fourth in our line-up of children it has been several years since Sam and Beth were little and Elijah isn't a good model to hold Naomi up against.  Elijah loves to eat.  He recently asked me how much more pounds he would need to be as big as daddy.  I told him he'd need at least 150 more.  He smiled and replied "Oh good that means I have to eat lots and lots."  I sincerely doubt Naomi will ever eat as much as Elijah.  So far today Naomi ate one container stage 2 baby food pear-pineapple with colored sugar sprinkles mixed in.  I know it is baby food and she is three.  It is what she wants, it has some nutritional value so I give it to her.  Honestly if she asked for a bowl of sugar, I'd give it to her, I would just try to hide it from her siblings.  She also ate about five pistachios.  While I was doing laundry Naomi and Mary dumped a Costco container of Parmesan cheese on the kitchen floor.  I came into the kitchen to find Mary and Naomi in all their cheesy splendor licking the cheese off their fingers and the floor.  I was not happy about the mess, but secretly I was happy Naomi was eating.  Licking it off the floor is a bit unconventional and will probably be a problem when she starts school, I don't see the school working with me on that as part of her 504 plan, but she was eating and a calorie dense food to boot.  For lunch she requested "gluten-free Nomi oatmeal with chocolate chips" so as I'm sure you guessed that's what she got.  She expertly mined all the chocolate chips out so I gave her a second serving of chocolate chips, they were organic, but she was done.  She's had a few sips of water today too, she isn't interested in juice or milk at all today.  Later this afternoon she may eat a cracker or two or dip some carrots in ranch dressing but it will only amount to a few bites and dinner is feast or famine with her.  If she is in a good mood she will often eat 1-2 ounces of meat and maybe a bite of something else, if she is in a bad mood, she will push the food around her plate, dump it on the floor or completely refuse to come to the table. 

Somehow I don't think this is normal, but maybe some of it is.  What does a normal three year old eat?  What should I be shooting for?  This is where I need your help.  I'd love to hear what your child does or did eat at three.  Please leave a comment, send me an email or Facebook me.  When I can recall what normal is I might have an idea of how far it is we have to go.  Right now it looks like there is a huge ravine between us and being tube free and there is a rickety bridge that crosses it but unfortunately it is missing most of the slats that would support our feet.  It's pretty scary trying to cross on just the ropes, we get tangled up, swing wildly out of control and spend so much time in fear of falling off.  If only I could get a few of those slats replaced....

My not so typical three year old.

Feeding Tube Awareness Week Comes to an End

Today is the last day of our first Feeding Tube Awareness Week and I am sad to see it come to a close.  This week has done amazing things for me and for the tube-fed community.  It has given me a platform and a reason to speak out about Naomi's feeding tube and thus opened up many conversations with friends and acquaintances about feeding tubes.  It has allowed me to share what our life is really like and reflect on how thankful I am for a device that I desperately tried not to have as a part of our lives.  It has allowed me to network with so many tubie families that I never would have known and I have been able to give and receive encouragement and advice with them.  It has also given me the courage to be more open about Naomi's tube.  We might even give her a blenderized feeding at the park soon instead of timing the park around our feedings.  We've done formula in her pump out and about but never real food with the syringes.  Most kids don't have to wait until they get home to have a snack or a meal so why should Naomi.  I have realized the only thing stopping her is ME.  It will be more work but maybe it will bring a little more awareness to the fact that some of us just need to eat differently.  We've also had the chance to cyber-meet several adults with feeding tubes and there stories are really encouraging, I especially like Joey's.

Today we are supposed to talk about something positive that has come from the feeding tube and I think this week definitely has been, but the other big plus for us is that Naomi has energy and our life isn't about food.  So instead of telling you, I'll show you.  We can go play in the fun and the sun at the park (nope I didn't feed her this time, but if the weather allows I bet it will happen next week).  I truly believe that if Naomi didn't have the tube both she and I would have been too tired to go to the park.  Naomi from malnutrition and myself from spending hours every day coaxing her to eat and hours every night worrying.  Yesterday afternoon Elijah, Naomi, Mary and I ran off all of their energy while waiting for Sam and Beth to finish school.  Having Naomi and everything that comes with her has made me so thankful for the little things!

Questions - A Better Response to Those Who Asked and Those Who Wanted to.

Yesterday on Day 5 of Feeding Tube Awareness Week the topic was reaching out to friends and family.  Letting them ask you the questions they have about feeding tubes.  Well I posted of Facebook and some did ask and the questions were great.  They mainly focused on how does the tube stay in, what happens if it comes out and how long will she have it.  I hope to better answer those questions today.

The type of tube that Noami has right now is a MIC-KEY button, made by Kimberly Clark.  This is what it looks like in her without her button buddy. 

 There are two pictures: the one of the left just to show you how it looks and the one on the right to emphasize that there are two ports. One that faces out to feed into and one that faces to the side that is attached to a balloon in Naomi's stomach.  The balloon is inflated with water and that is what holds her button in place.  The bottom right picture I found online and this is what her button looks like. 

Her button can actually be changed out at home and should be changed every three months.  We have yet to change it at home as the changes have coincided with appointments with her gastroenterologist but we are feeling braver by the moment and are going to try the next button change at home.  We'll do it in the morning on a weekday though, that way if anything goes wrong we can whisk her off to the GI doctor and save ourselves an ER visit.  The video I've included is another tubie mom and her daughter Harmony.  Laura is quite confident changing Harmony's button and I hope to be the same someday.

Now can Naomi's button come out? Yep.  Has it? Nope.  And we are very thankful for that.  If it were to come out and we had a spare button we'd pop the spare in and be doing good.  But we can't always have a spare as the buttons are expensive and insurance companies don't like to pay any more than they have to so, if we don't have a spare button or the button came out at night and we were unaware until later we have a supply of catheters in a range of widths that we can put into Naomi's stoma (the hole in her abdomen) to keep the placement while we head to the Children's Hospital as they are the only ones likely to have a button in stock.  The hole in Naomi's stomach could close in as little as an hour and definitely would within four hours so if the tube comes out timing is everything as we certainly wouldn't want surgery again.

A lot of you have asked questions about feeding therapy too, what do we do there, does it accomplish anything?  I plan to answer those soon along with pictures of a session but I need to either have Naomi do a session by herself or get the permission of Naomi's therapymate before taking and posting pictures.

Today's topic for Feeding Tube Awareness week is to tell about a negative and how it could have been positive but frankly I don't have much negative to report.  Thankfully our friends and family have been supportive and willing to work with Naomi and any limitations she may have with her celiac and her feeding tube and we are very grateful for that.