special needs

As you may (or not) know by now my daughter has life threatening food allergies, chronic illness and special needs. She is sponsored by the Starlight Children’s Foundation that helps chronically ill children in many ways. We are thankful to have been part of many amazing events like a Mommy and Me Makeover thanks to Forever21.

Starlight Children’s Foundation has given my daughter (and I) so much support and cherished memories that will last a lifetime. Every event is filled with love, fun and laughter. For those moments my daughter is treated like a rock star (because she is one) and is able to forget her health challenges.

Sometimes we know we want to help an organization like this but don’t know how. We may not have the time. We may not have the extra money to donate. Sometimes it just slips our minds.

I’ve been really sick the past few weeks but had to make it over to Michael’s to pick up supplies for school projects for the kids. While we were there I spotted the 3rd Annual Starlight Children’s Foundation ornaments. These made my day and my daughter was feeling proud to be a Starlight kid.

These ornaments are adorable and $1 for each sold will be donated to Starlight. My daughter, who has life threatening food allergies, picked out the little baker one. She always talks about opening up an allergy friendly bakery one day. She says she wants those who have food allergies can have a safe and delicious place to get their baked goods.

I just love her.

Some Friends and family will be getting these from us for Xmas (oops… spoiled the surprise).

My Daughter Asks For Your Support and Help

My daughter and I are asking that you pick up an ornament from Michaels to support children with chronic pain and illness. We would LOVE to see pictures of them on your tree or with you holding them in support.

We want to help Starlight in any way we can because they have been such an important part of my daughter’s life and helping her cope with the obstacles she deals with.

If you blog about this and link back to me I will give you free advertising on my site through December as a token of our gratitude. Link up below and share the love!

My daughter is also making thank you cards for those of you who want to help show support with pictures and blog posts. Not sure how we will work that out but we will!

Even if you can’t purchase an ornament the fact you are reading this and any shares, comments and RT’s you can spare are greatly appreciated.

Thank you and keep on ninjakicking just as my brave little girl does despite her obstacles!



 

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Sometimes, no matter what you do for your child with life threatening food allergies, there will be mistakes at School.

Thankfully, nothing physically happened to put her in danger but it was going that direction. This was an emotional attack and broke my daughter’s fragile heart and put me in a lose lose situation.

I totally get that unless you live the life of a person with severe food allergies you don’t get how dangerous it can be physically or emotionally.

I try to advocate, educate, tell funny stories and make it all as positive as possible. Everything is in place at school with her IEP and 504 Plan that gives her legal protection. I keep open communication with the faculty and teachers.

For the most part I am really friendly, laid back and positive about everything. Follow the guidelines and nothing goes wrong and I don’t have to get all crazy.

Though, sometimes things slip through the cracks. Sometimes we have to deal with parents who push their own agendas or teachers not reading the freaking manual.

I personally can’t stand end of year parties and holiday times because it is a source of stress and frustration no matter what alternatives are provided. There is a reason many schools BAN classroom parties. Not just because of the food allergy issue but because it takes away from valuable classroom time and lots of parents don’t want other parents sending their children on a sugar high.

Even if I didn’t have the perspective that I have I wouldn’t want my kid having cupcakes, pizza, candy or junk food all the time. We don’t do that at home for health reasons so why should it be a constant staple at school?

Anyway, a pizza party was decided for my daughter’s classroom. My daughter is contact sensitive to milk. This fact sucks and has been a challenge to control. If she ingests milk or has too much exposure she can go suffer anaphylactic shock which can kill her. This fact, obviously, sucks even more. I thought everything was clear about pizza and ice cream being around her. I thought it was understood what was in her health plan. I can easily provide alternatives and we can do other foods or popsicles. But, no. It was decided and announced that pizza was it.

If you don’t have experience with health plans and IEPs then this may seem confusing. Basically, if a child has any special needs then accommodations need to be legally met so that child can be in a safe learning environment and not fall victim to discrimination.

Everything about this party legally went against what is laid out to prevent her from physical and emotional harm. Still, it was pushed forward. By the time it was told to the parents it was a little too late… the kids knew and were looking forward to it. This worried my daughter because the last thing she wants is for all the kids to be mad at her because of her health conditions. It was a lose lose situation and I watched her cry herself to sleep more than once because of something that could have been prevented.

I just didn’t get why we were dealing with this when we had no issues this year and everything laid out was so simple. Why choose the main food that can put her in harms way?

It started turning into a battle. Some asshair parents started gossiping which got back to my daughter. People can be so selfish, though, they think we are the selfish one.

Yes, blame the child who can’t help the cards she was dealt with. It was suggested I just kept her home. Really? We have dealt with so much negativity and people even wishing harm on her.

You start to reach the boiling point where you think you can’t win and hope in people not being asshairs is lost.

It is pizza. PIZZA! All the kids ultimately care about is they get to party. I wanted peace. I wanted my daughter to finish the school year in a positive note since we have had to face the fact she will be homeschooling soon.

The alternative? Our wonderful Principal, who really understands my daughter’s health issues because of personal connections with it, wanted to just make her happy. We were all worried about pulling the party at this point and kids being upset with her. There was also concern that catty parents would turn it into something bigger… because some people have nothing better to do. We didn’t want her missing school or being put in danger.

The alternative?

My daughter is having a special day with the Principal. They have games, popsicles, allergy friendly cookies, bubbles and all sorts of things planned. She is throwing my daughter a party with the office staff and making her feel special. This is insane to me because everyone is so busy with end of year craziness. The principal insisted that my daughter was more important in these moments and everything else can wait.

We weren’t sure how awesome this would be to a fourth grader but my daughter was elated going to school with her party supplies. She was so happy to be greeted by everyone in the office who were showing genuine excitement to have their own lunch party with her.

When my daughter hugged me goodbye she told me thank you for always helping her find a way. That moments like those make her feel like the luckiest girl to have a Mommy like me and to have days and events where she can feel special and forget about the things that make her different. We try to make the most of each day, no matter what.

I walked away with happy tears and can take comfort in the fact that we are ending this year on a good note.

Though, I do kind of feel bad for the Thor hammer like emails I had to send out advocating for her. However, time and time again I realize that we do have to live, laugh and ninja kick those obstacles and find those happy solutions.

And no one is going to take away my daughter’s choice or right to be safe.

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We are told from the moment we become pregnant how important nutrition is during pregnancy and those first few years. A developing person needs nourishment to thrive and starting that out the right way is important. Studies have proven that good nutrition is essential for brain development.

But, what if those options just aren’t there?

Lack of Nutrition is a Horrific Feeling

My personal connection with lack of nourishment concerns and a developing child come from my daughter’s infancy years. When I was nursing her at one month old she broke out in hives and showed anaphylactic reaction signs. I went on a strict elimination diet trying to figure out what the culprit was. It was many. It sucked.

She had over twenty food allergies and many of which she was contact sensitive to. Her doctors worried about how she and I would thrive. Our food was limited: rice, some veggies, some meats, some fruits. A lot of supplements were not allergy friendly. I spent a few months physically feeling ill, run down, terrified and just going through the motions of the day. My daughter was thriving for the most part but she was unusually lethargic… she was getting more nutrients from me through my breast milk than I was getting on the limited diet.

Me being who I am I brushed off my concerns with humor. I joked that all the food allergy madness and limited diet meant I was going to drop all the baby weight fast.

Truth is I was absolutely terrified.

That changed when I was able to find a balance within our limitations and we found supplements that worked for us and the sluggish days became a distant memory. I stayed on her diet so she was able to breastfeed and it became easier.

We were fortunate to have options and found solutions.

At the time it was frightening and I could not imagine if that was our daily terror. Again: We are fortunate.

Many pregnant mothers and children aren’t that fortunate even though they are capable of eating anything their hearts desire.

They just don’t have it available.

We are all aware of world hunger issues and how many live on basics. Foods like wheat, rice and maize that have little nutritional value can stop someone from starving to death but won’t have the essential nutrients a body needs.

This is where an organization like Future Fortified steps in and is creating a sustainable solution. We may not be able to provide billions of people a gourmet seven course meal every night but we can help them get the essential nutrients to lead a healthy lifestyle.

About Future Fortified

“Future Fortified is a new kind of philanthropy, focused on long-term, sustainable impact. Your contribution will be leveraged as an investment to increase the supply and availability of home nutrition packets, as well as educate families on the importance of nutrition and essential nutrients.”

Please take the time to check out Future Fortified. See what impact they are having in the world and follow them on Twitter and Facebook.

You may not have a monetary donation to spare at this time but spreading the word on this amazing campaign is worth it’s weight in gold. Help me spread the word and share this post!

Disclosure: I wrote this review while participating in a blog tour campaign by Mom Central Consulting on behalf Future Fortified. To thank me for my contribution, Mom Central donated $20 to the Future Fortified campaign.

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I’ve felt that one of the biggest struggles with raising children is teaching them selflessness in this instant gratification society. It can be a scary concept for children to know some of the struggles around the world but it can also be a wonderful tool for growth.

Even in the hardest economic times we should set aside what we can to give back. It’s good for us and especially our children. That cycle of selflessness starts with us and we pave the path of philanthropy for our children.

It’s especially important for our family to be involved with giving back since my daughter has regularly received the benefits of non-profits that help children who are chronically ill. We want to give back both to those organizations as well as others in different ways.

We are actively involved in community service and it is a huge part of our family dynamic. Sometimes it’s as simple as buying a $5 gift card and taking it to the women’s shelter or sometimes it’s as large as organizing a fund raiser for Japan Relief.

We are always looking for different ways to help. It’s really hard to find a connection with causes that seem distant from us. I want my kids to understand that they can make a difference with a simple act and it can amount to great things.

Then I was introduced to Members Unite and felt this was another amazing way for us to help.

Members Unite is a great way to fund projects. The decision on what to fund is in the member’s hands. As a member you vote on different projects which are all very unique and interesting. I’ve never even heard of some of these ideas!

The best part is what both my nine and four year old took from this. I explained what the project was and how our $5 donation is pooled together with hundreds of other members and we, as a team, make a difference. We are able to rate each project as a family and think on what projects we like the most.

There was also great dialog in “losing” if our favorite projects weren’t picked because no matter what someone is winning at the end of the month.

Now that my nine year old daughter regularly earns allowance she told me she wanted to become a member herself with Members Unite so we could be making a double difference.

Some of the topics can be hard like the project to help infants from Guatemala who struggle with pertinent nourishment… but it was also an opportunity to talk about how fortunate we have been to not be faced with that and more importantly, that we can help.

The easiest way to help is to give what you would spend at Starbucks or those impulse purchases at Target. But, to make that donation have a bigger impact on your family you can be involved in a community of giving.

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Post image for Diet Changes for Food Allergies, Autoimmune Diseases and Why My Kid is Tough


This week we went to UCLA Medical to try to get some answers for my daughter’s recent autoimmune flare ups. We have some new directions… but no solid answers.

That’s the thing with chronic illnesses and autoimmune issues. Sometimes there are no answers.

We know what is going on with her body but we don’t know why.

And that is the part that sucks.

Without knowing why we can’t know how to fix it.

So, we shoot in the dark.

What we do know is that there is something causing extreme constipation and then extreme diarrhea. Her chronic urticaria (hives) are flaring up again. Her muscles, joints and bones ache. She is getting dizzy a lot, fatigued, doubled over in pain and sleeps a lot more than usual.

Not exactly what a nine year old girl is supposed to be experiencing. [click to continue…]

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Post image for Selflessness and Seizing the Moments with Childhood Chronic Illness

When you have a child who has chronic illness and chronic pains it breaks your heart to hear her utter, “I’ll be fine. I’m just sad if anyone misses out because I’m always sick.”

My daughter told me that twice last week… and her being so selfless and worrying about others when she is missing out on something amazing is truly eye opening.

For the first year my daughter was planning on participating in the school’s Talent Show. She worked her little butt off for this. Every year we participate in Ondo Dancing in the Japanese Obon Festivals with friends. It’s a big part of our summer kick off traditions. She loves Ondo! She decided with two of her friends to perform the dances for their school while dressed up in Yukata.

This was a big deal for her. It was the first time we committed to this event because it sucks when she can’t follow through when she has flare ups.

It’s always so unpredictable.

At first I thought it was a gnarly stomach flu that was going to beat us all up for a day. No, it was a gastro intestinal issue that is common for her but this was really bad.

She was in so much pain that walking hurt, she was getting dizzy spells and extremely fatigued.

Her biggest concern was not being there for her friends or if the performance wasn’t going to go as smoothly with one missing. She wasn’t sad for herself for missing out. She was sad for letting them down and any upset that could cause them.

On Saturday I was invited back for a Blogger event at Knotts Berry Farm which is one of our favorite places to go. When my daughter realized that she wasn’t going to feel up to it she began to worry that I wouldn’t be able to go because of her.

I do not make a big deal out of things changing or express upset over it. I’ve canceled night’s out, family gatherings, playdates, work obligations and many many things when she needs me and we make the most of it.

It’s just how our life is and her health comes first.

It’s just me here for her and I’d rather be here for my daughter than anything else. That is what we both need.

She insisted that I went. The plan was for her little brother and I to go and she would sleep in and meet up with us later with a friend if she was able. I knew if she was able that we would need to take it easy and go at her pace.

She made it for a few hours and we made the most of it. She is a trooper. She powers through things that most can’t and I am proud of her for that as well as thankful that she knows her limits.

Maybe I seem like a terrible Mom to let my kid go to an amusement park after days of feeling ill. But, it’s not a cold. It’s not something that is going to go away. This is her body and a cycle we adjust to. She can go weeks of feeling wonderful and then weeks of feeling horrible.

Sometimes her windows of feeling great are a couple hours.

She had that window on Sunday and it was a beautiful day. She just wanted to be out in the sunshine and garden.  I love that she embraced that moment.

In those windows of feeling amazing I want her to do what makes her heart soar and forget, just for a moment, that she gets sick.

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Post image for Mother and Daughter Event Thanks to The Starlight Foundation and Forever 21

The Starlight Children’s Foundation provides us with amazing events in their Great Escapes program. They are a non-profit that helps children with chronic illness. This organization has been a huge benefit for my daughter where she is able to get some special attention and have opportunities that may not otherwise be available to us. At these events we connect with other families that are struggling with special health needs and she is able to connect with other kids that understand what it’s like to be sick more than the usual cold.

The past event was our favorite by far. It was a Mother and Daughter event sponsored by Forever 21 and they went all out for us! We were given make overs… they did our hair, makeup and nails. We were given a shopping spree and had a consultation with a personal stylist (I really freaking need it). We also had personal shoppers with us and that made my daughter feel extra special.

I'm in Mid-Hair Makeover

My Lil Fashionista

The Make Up and Hair Station

My Daughter's Hair Stylists

When you have a child who’s life is faced with obstacles and hurdles because of their health issues it’s wonderful to have events like these.

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Post image for Life Challenges, Chronic Illness, Home Schooling and Ninja Kicking

Kid’s should be able to run wild and free…

and us parents hope that they won’t fall, bruise or break.

They should laugh so hard that it seems to hurt…

and sharing that laughter with them makes us young again.

Children should have endless energy, don’t have the weight of the world on them and nothing but hopes and dreams consuming them…

Except if that child is chronically ill.

That child may not be able to run and if they do the bruises or breaks within their bodies already exist.

They may be in too much pain to laugh… but they do anyway… because that laughter will help them feel like any other child… even if it’s only for a moment.

She is nine years old. She is one of the most loving, caring and giving children out there. I’m not saying that because I am her Mom. It’s what defines her even when she has bad days.

What defines her isn’t her life threatening food allergies, auto-immune disease, gastrointestinal disorders or her achy muscles and joints. She shouldn’t be defined by her illness but it’s a fight.

I fight for her in so many ways. I fight for a normal life that she deserves.

Just figuring out what defines a “normal life” is a challenge in itself.

I want to see her have a life filled with more energy, laughter and acceptance. I know I can’t make all of her health hurdles vanish. I can’t heal wounds that even her doctors can’t figure out. All I can do is what I’ve always done… and make the most out of the cards we were dealt with.

She is too tired to make it through most School days but she continues on so other kids don’t notice she goes home early often. She tries to control her bladder and bowel issues at risk of having accidents because she is tired of other children making fun of her using the bathroom so much. She has kids at school mocking her… they think it’s funny to threaten her with the foods that can cause her to die.

I’m fighting for her to have that kind of life?

I’m not angry at those children. They don’t understand the magnitude of death…

Unfortunately, my daughter does.

“Childhood is over the moment you know you’re going to die.” – The Crow

She was born with life threatening food allergies and unfortunately has to be aware of that horrible fact in order to keep her safe.

I hate that.

She is nine now and I don’t want her to lose these last precious years of childhood sucked up by her trying to just make it through the days.

What kind of life is that for a child?

We are moving forward with Homeschooling. It’s not a new concept for me. When she was a baby I thought we would be a homeschooling family. We have home schooled during times when she didn’t have the energy to attend school…

Now, we change our lifestyle so she can have the energy to live a full life.

The goals in our battle for her life change now. There will be judgment, negativity and adjustments. It’s going to be really freaking hard to juggle all that I do now as a single Mom plus homeschool.

I say bring it on… cause we are ready to ninja kick some more obstacles out of our way.

And despite my daughter’s body being frail at times… that little girl has determination that no one can mess with.

Which makes me worry about her teen years… but that will be yet another obstacle to face later.

Much. Later.

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No one is perfect.

Not my precocious, sweet natured and mature daughter who has life threatening food allergies.

Not me as a friend or Mom.

Not the seemingly perfect PTA Moms, hottie at the beach, Mom of the year, the people we love, Super Duper Dad and not you.

All we do in life is try to make the best decisions we can and hope for the best. We like to think we have all the answers and that everything we do will turn out right…

and sometimes we make decisions that we know are not the best. We’ve all done it. Pushed the limits a little too far. Broken, sprained or fractured our bodies or hearts.

My daughter is nine and going through that phase I’ve feared since I was pregnant with her: She is transitioning from a the child I’ve always known in to the girl she wants to become and making me want to rip my freaking hair out. It is a crucial part of development and something we all go through.

And it still sucks.

No matter how “right” you raise a child they will push boundaries, go against you and become their own people.

By the way… there is no “right” way to raise a child.

Even the most seemingly perfect parent screws up. We all screw up.

All we can do is just figure it out along the way and hope we don’t screw up too much.

We hope we are doing it “right” even if there isn’t a cookie cutter answer for every situation.

I thought I was raising my daughter in such a way that she would always make the “right” decision when it came to her health and life threatening food allergies. I’ve educated her. She has seen me advocate for her. I’ve given her the tools to take responsibility and ownership of these health issues she faces and been by her side every step of the way. She has been applauded for her amazing ability to manage her health and self advocate.

But, she is still a child who is going through the start of a big phase in her life where she is going to push, test and find herself. This combined with the reality of her health issues, chronic pain and how pissed off she really is that she has to deal with this is harder than I expected.

I’m sad for her most days and angry on the other ones.

I often just cry with her.

The most frequent stories I hear about a child dying from anaphylaxis shock are teenagers who either forget their epi-pens, kiss someone who has consumed food there are allergic to or who push the limits themselves.

When my daughter was an infant I never thought she would be that kind of teenager. I thought… oh I will raise her better than that! I will do it right.

A couple weeks ago she ran from the kitchen projectile vomiting towards the bathroom. It was so sudden. She was screaming. By the time I got to her I could see the hives covering her arms, legs and face. I gave her benadryl and opened her epi-pen.

I knew if her airways started to close I needed to administer it. I knew what to look for. I had no idea what happened, why this was going on or what the next few minutes would bring…

All I knew in that moment was…

My child could die if this got worse.

The arguments we had didn’t seem that bad anymore. The mess in her room that always bothered me were insignificant. Her attitude was something I hoped I’d get again by the end of the day. The recent defiance was now seen in the light of her first steps in being a strong, independent woman…

Holy shit. What if she doesn’t live to be that woman?

When I thought that… well, I honestly cannot explain the pain, fear and rage I felt.

The swelling was minimal, the hives slowly started to fade, her vomiting ceased and she was finally able to tell me what happened.

She had a taste of pudding that she knew had milk in it. Like literally the amount that she picked up on the tip of her finger. Her milk allergy is off the charts so much that she is contact sensitive and she knows that!

Why would she do that?

Many reasons. None of them right or wrong. They just were.

She wanted to know how it tasted. She wanted to know if it was different than her pudding. She wanted to know what it was like to be a kid who could just eat anything. She also had wondered how bad it would be if she ate it… she half wondered if her milk allergy wasn’t as bad anymore since so many others have faded.

She knew it was wrong.

She knew it was a risk

She knew what the consequences could be…

But, she did it anyway.

Fortunately it wasn’t as bad as it could have been. We are both thankful for that.

I was angry at her. I was disappointed in myself. I’ve had so many recent moments with her making terrible decisions like stealing money or just being a little crazy person of ultimate defiance!

I had to really process what happened and why. I actually thought about myself a lot as a teenager and the really dumb things I did. I rebelled more than most do in a lifetime but I was fighting against some dark demons of my childhood… which I didn’t know at the time.

I can’t say that I never put myself in a life threatening situation or did things that could have completely ruined my life. I can’t say that I, as a teen, always made the right decisions or more importantly that I never made a decision I knew was bad.

The disconnect for me is that I didn’t have a life threatening health condition I was rebelling against or chronic illness that I was resentful for. I was just a punk ass kid!

I can’t imagine what I would have done had I been dealt those same cards.

My daughter hated her cards. She hated being different. She hated the comments insensitive adults make or the lack of care or concern she has been shown. She hated that she can’t just be like every other kid. She hated that she gets tired, hurts a lot and doesn’t know what her body will do next.

She hated being who she is… and she didn’t know what to do with that. She had a moment of wondering what if she consumed milk and had no reaction?

She would be a normal kid?

And she wanted that more than anything else.

She was wrong.

She knows that now.

She does love the life she has. She appreciates all that I’ve done for her. She knows she has been able to do more than some of her peers because of the adventures I will take her on. She loves me and all that we do. She isn’t ungrateful… quite the opposite.

She was just mad.

Most kids will come home late. They won’t pick up their rooms when asked. Might not turn in some homework or tell lies. They will talk back. They will say bad things about friends or family. Most kids will do normal rebellious things that we all experience.

But, when you have a child who has some serious life threatening health issues or who deals with chronic pain… they will not only do all those normal things but they will also have moments where they just don’t want to be themselves.

I can’t judge her or be angry at her for her decisions. I know its typical development but something most can’t comprehend if they don’t have a child with special needs. It does scare me. It seriously scares the shit out of me to go through that again… and we probably will in many other ways.

She wanted to have hope to have a normal life… and what she ended up discovering is that despite her health issues and life threatening food allergies she has a very full life. One that she loves.

We got through that hurdle and we will both keep learning from each one of them.

We both walked away with a lot more patience, appreciation and strength.

I also walked away with more gray hairs, possible ulcers and the feeling of my heart falling out of my butt.

 

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