Strength

If there is a sentence I hear a lot from family and friends in general is how “strong” I am. Before the stillbirth of my first baby, before the miscarriage, before Nicky’s birth, I somehow thought that strength had something to do with “grin and bear it”, or having somehow the ability to have no qualms or uncertainty of what to do or how to handle a variety of situations. But strength, I found out, has nothing to do with our outward projections of it, nothing to do with muscles, or not showing emotion, and everything to do with allowing ourselves to feel whatever needs to be felt at that moment, let it all out and then dealRead More

A Work In Progress

Every person in the world has known heartache and suffering. Sometimes I think about the children with my son’s condition that live in third world countries, or countries like Syria, ravaged by war. There are so many people on our beloved planet that do not have the basic necessities, water, food, clothing, let alone bandages and medicine. At the core we’re all the same, we all want the same things. From the Quechua woman in Peru to the famous actor in Hollywood, we all want to love, to laugh, to dream, to eat and drink and a roof over our head. We’re more the same than we are different. There are people out there though, that cannot survive on their own,Read More

Nicky’s Life Part 45

September 1997 – I love this picture of 10 month old Nicky with his dad, if only because of those BIG blue eyes! His poor mouth was in bad shape, he had already stopped eating baby food at this point and could only ingest liquids. On occasion he could chew on a cracker, but it was a rare occasion and I would only attempt at giving it to him if his throat looked like it could handle it. Our first trip to the ER for throwing up blood would soon start. I hate EB. More of Nicky’s story in the book… Thank you so much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light,   Post Views: 108 Comments

Speechless

Minnie Driver is probably my favorite actress nowadays. A few years ago she tackled a subject near and dear to my heart by portraying a mother who had a stillborn baby in “Return to Zero“. Her performance was simply phenomenal. She totally nailed it. Her character’s  experience was also fairly close to mine, and there is truly something to be said about watching someone on TV feel what you felt. It’s hypnotizing. I am a very “visual” person anyway, so this movie was truly special for me. Fast forward a few years, and now we have Minnie portraying a Special Need Mom in the new TV show called “Speechless”, in which she is a take-charge mom to a teenage sonRead More

How to Be Kind to a Caregiver

Caregivers are selfless and do what they do because they love the person they care for, most often without monetary compensation. If you know a caregiver and want to show your appreciation, here are some ideas: Encourage him or her to relax by a gift of bubble bath items Pay them a sincere compliment Take his or her kids to the movies or out to the park for the afternoon Don’t compare their life or their loved one they are caring for with so-and-so Invite them out for coffee or lunch Ask them to tell you about their day Give them a day at the spa or mani/pedi Wash their car Never criticize any aspect of their lifeRead More

Nicky’s Life Part 44

December 2008 – Nicky in his Mecca! He was 12 years old in this picture at a GameStop at the Antelope Valley Mall. When Nicky was 4 years old I bought an old SuperNintendo so I could teach him to play Mario Kart; I loved that game! I thought that this is something he could do to entertain himself. Before long he got very good and to make sure he won I used to sit in 2nd place with a bunch of turtles and throw them at anyone that passed me so they could not beat him. 🙂 He would be soooo happy to win! Of course 15 years later, now NIcky is the master of all games.Read More

Blog Quotes Part 8

Feel free to save them and share! To save the bigger version of the image, click on the image first to load it, then right click to save image. But in this lifetime, my purpose is my son. My purpose is to raise awareness for this awful thing we live with every day. “How are you still smiling?” he asked me. I admit I didn’t know how to answer. “Because I don’t want to cry” is what I told him. I don’t know a single EB mom who wouldn’t sell her soul to take their child’s pain away and would surely give up any strength, wisdom and courage gained through their journey to see that happen. Having aRead More

EB Parenting is not for sissies

Can you remember a time in your life when you felt completely helpless? I do. It was the day when a Doctor escorted us into a small room in the hospital after Nicky was born and told us the grim news that not only our newborn son had a rare, extremely painful incurable disorder, but that he would most likely not see his first birthday. I was in shock. Only 19 months earlier I had a baby that was stillborn and I just sat there, numb. Nicky is going to turn 20 years old in two months, and in these two decades I had to learn to be my son’s super-hero, while dodging bullets from all sides. Let’sRead More

A Sense Of Purpose

Almost every day, as I walk by Nicky or get him something, I notice he’s busy watching a “how to” video on how to “cook” something. When he was younger, he would often help me make the cupcake batter or would insist in putting the batter in the cupcake liners or would help putting the sprinklers on. He would be so excited to eat a fresh cupcake, and I would make sure I would make some kind of frosting of his liking and would also make a hole in the cupcake for him to get as much frosting in there as possible so he could eat it. His favorite show is Top Chef or any of those Baking Championships! We wereRead More

Blog Quotes Part 7

Feel free to save them and share! To save the bigger version of the image, click on the image first to load it, then right click to save image. Never bad mouth the mother or father of your children to them. Never use your children against their other parent. NEVER! Be the first to say you’re sorry. Laugh until you cry and Love with all your heart. When you see someone suffering, don’t think for a minute that their life has no value, that their life does not matter. Because it does. So many well-wishers often tell us they hope he’ll be OK soon. They truth is, RDEB is degenerative. It gets worse and worse with age. HeRead More

Nicky’s Life Part 43

October 1998 – This is my dad’s absolute favorite photo with Nicky, taken at the Milan airport in Italy on the day we were flying back home to Phoenix. Nicky was almost 2 years old. I know it may seem bizarre since they are giving us their back, but dad spent a great deal of time teaching Nicky to walk and just loving him and would follow him around everywhere. Til this day he’s extremely fond of him even though he does not see him often and was thrilled to see him this past summer. My dad is 85 and is still one of the most amazing human beings I ever met and I am sincerely humbled toRead More

Throw Kindness Around Like Confetti

One of the big differences I noticed between the me before I was a mom (and a special need mom at that) and after is how I started isolating myself. And how I find myself still doing it. Aside calling my parents once a week, I never call anyone. Ever. Oh yes, I return texts (my favorite mode of communication), but aside that… calling… ugh. It’s like pulling teeth. I dread it like nothing else. I didn’t start to isolate myself willingly, it was a process. At first it was others who would say the most insensitive things to me, leading me to not wanting to call or email them. Not having anyone to talk to that couldRead More

Living in Fear?

It seems to me that every time I turn on the news lately there is someone telling me I should fear something. I ought to fear this, be angry at that and hate the other. I also noticed that the people that buy into this way of thinking are extremely depressed, suffer from anxiety or are somewhat… how shall I say this? A bit egotistical. Everyone is out to “get them”. Just this morning I read the news of a 16 year old boy with RDEB like Nicky that passed away. Let me tell you something. It would take a LOT for me to take the advice of a newscast full of notions of fear, anger and hatred,Read More

It’s Been a Rough Week

I am so glad Nicky and I survived last week because it was exhausting. Monday and Tuesday I drove us to Stanford and back with an overnight stay. One way is 6 hours. I was trying to explain to my parents how amazing but tiring this trip is for us. I love driving, always did. We have our “stops”, our routines. I’ve come to know certain rest areas like the back of my hand, and certain truck stops are very cool and my faves. We love stopping at Casa De Fruta, or Bravo Farms, we know Harris Ranch is close when we smell the cow stench, and I always stop at the San Luis Reservoir to take a photoRead More

Blog Quotes Part 6

Feel free to save them and share! To save the bigger version of the image, click on the image first to load it, then right click to save image. EB is one of those conditions that needs to be SEEN to be understood. I wanted to be known for what I LOVED, not for what I hated. I suppose in this life we need to recognize who cares about us and make sure to spend time with them. Anyone that feels these kids aren’t heroes, I don’t know who their heroes are… It goes without saying that if I had a dollar for every random treatment for EB people have tried to sell me I would be aRead More

Confessions of a Tired Mom

I watch in amazement the Olympics once again this year and I am always blown away. I am not sure if it’s because I’ve never been athletic and anything I see makes me feel fearless or what. I have my own little hero in my house, one that blows me away at every turn. Stuck behind his computer, Nicky can do anything and everything he could never do in real life. Online Gaming and watching videos is part if not his entire life, and in this little world of his, he’s strong, free, he is a warrior, a chef, anything his mind can imagine. This is how he survives. He just doesn’t think about EB. His computer isRead More

I Will Never “Get Over It”

As many bereaved moms know, the grief over the loss of our children is not something we can ever “let go”, “get over”, or “forget about it”. We understand that it may be uncomfortable for people when we mention their name, but the wrong response to hearing our child’s name is not one of these somewhat canned statements that pretty much tell us to stop talking about it. I could not forget holding my dead newborn if I tried, so to tell me his life was so unimportant that he should be forgotten it’s a horrible thing to say, no matter how well meaning or kind you tried to be while saying. It cannot be done, plain and simple.Read More

Healing

I came across this blog this morning and it gave me pause… It spoke about the sacrifices of a special need parent and what’s involved, which include depression and problems with self-worth among others pressing issues, such as isolation and financial problems. I saw myself in this post… the myself of a few years ago, and how low I felt. The lowest low one can ever imagine. I can’t help but feel that special need parents, as a community, don’t get enough attention nor respect in that regard. Nobody can ever say we don’t make sacrifices for our kids! I see family members dropping off their kids for weeks, even months to grandparents or other relatives, while we cannotRead More

It’s All About Family

… and just like that, it’s over… We got back from Italy late last week and I am sitting here pondering how it went so fast. But the truth is, it didn’t. It didn’t feel fast, I can still feel the warmth of my family and the beauty and love that surrounded me. And while the trip was rough on Nicky, he’s glad he went. The flights we took to get there were from Los Angeles to Paris for 11 hours and then Paris to Turin for 90 minutes with Air France, and coming back we took Alitalia from Turin to Rome for less than an hour,  and then Rome to Los Angeles for 12.5 hours. I can’tRead More

Enjoy Life

My trip to Italy with my boys is scheduled for Monday and I couldn’t be more excited. I saved 4 years for this trip! I can’t wait to hug my mom and dad and of course, everyone else! The next few days I will be making sure we get everything we need for our trip. The other day I filled a suitcase with Nicky’s bandages. Not all bandages, mind you, just “some”… well, most. I still need to add somewhere all his g-tube supplies (food, bags, pump, extensions etc), medications and other bandages… and of course, clothes and miscellaneous for all three of us plus all the gifts for my family I bought on the other two suitcases.Read More

Blog Quotes Part 5

Feel free to save them and share! To save the bigger version of the image, click on the image first to load it, then right click to save image. It’s also very important to note that EB is just an umbrella word. A word that throws together all blistering conditions no matter how they are inherited or how they manifest themselves. Back in the late 1800s/early 1900s, when the words Epidermolysis Bullosa first appeared, the Doctors told patients they had EB if they blistered. It’s like if Doctors bunched up together all conditions which feature rashes (eczema, psoriasis, rosacea or shingles) or conditions that feature the progressive deterioration of nerve cells (Tay-Sacks Disease, Parkinson’s & ALS). It’s extremelyRead More

Thank You George R. R. Martin!

It isn’t every day that a TV show surprises me, in a good way, nonetheless. I am a late arrival at the “Game of Thrones” obsession, and the one thing that I cringed about prior to watching the first episode was how they were going to portray their “little” character, Tyrion Lannister. Normally anyone that is different that is cast in a show is there as a “token”, so-to-speak. Having a “different” child has made me very sensitive to this subject so when I sat down to watch the premiere I was impressed immediately when I saw the scene of Tyrion talking with Jon Snow: Tyrion: Let me give you some advice bastard. Never forget what you are. TheRead More

Nicky’s Life Part 42

October 2002 – A fun memory of Disneyland with Nicky, almost 6 years old. We spent the day with a couple of other EB families and it was a blast. It’s fun to remember the good times too. More of Nicky’s story in the book… Thank you so much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light,   Post Views: 81 Comments

Anemia with RDEB

When Nicky was born I was told of anemia being an issue with RDEB (Recessive Dystrophic Epidermolysis Bullosa). With this knowledge I gave him Ferrous Sulfate supplements as suggested by his pediatrician thinking that would fix it, but somehow I was unaware of how serious anemia could really become. It wasn’t until he was 7 years old that he was tested for iron levels and we found out his levels were so low they were “borderline lethal”. Talk about scary. It was then that we started a routine of giving him iron and blood infusions that continues ’till this day. Why blood? Because over time his blood loses the ability to absorb iron so by giving him a freshRead More