In Honor Of...

Early this morning, a little girl named Mylee Grace earned her angel wings at the tender age of five. She suffered complications from chiari and mitochondrial disease. I'd heard about her and seen her lovely smile many times via social media, but I unfortunately never met her. Her mom and I are Facebook friends due to many mutual friends and that shared special needs connection. Unfortunately, this isn't the first death of a child I have heard about in our special needs circles. It won't be the last, but it has made me the saddest. It hit home due to the mito. And it really has made me think. When someone passes away, we try to take a piece of them with us, to honor them, to change our own lives for the better. We say someone touched us or inspired us. How does this work when someone dies who you had never met? I think it's like this: Today I changed fifteen diapers. Fifteen. Fifteen MESSY diapers from my FOUR year old, who should be potty trained, and who is obviously suffering from some sort of intestinal ailment right now. Each time, I wanted to grumble, or be annoyed, or feel sorry for myself. But, I caught myself. Oh sure, I still wasn't jumping up and down about the task at hand, but I thought about how much I would miss every moment, even THOSE moments, if Joshua was no longer with me. I will try harder than ever to take all of it... the diapers, the messy house, the formula spills, the crying, the therapies, the doctor's appointments... in stride. Because if those things were gone, if he was gone, I would miss it all terribly. Mylee, you are pain-free now and I am praying for your family. Thank you for making me more aware of the blessings in my every day tasks. I am wearing my butterfly necklace... and smiling while I change those diapers... because of you.

Reality, Heat and Hope

I love the whole glass half-full concept in life, and I will try to keep up with that as much as I can. I am going to be honest, though, the past couple of weeks have been rough. We've had a change in routine due to school being out for summer, and the heat has been especially hard for Joshua. As much as I want to continue to sugar-coat things, or nod my head with a smile when someone says he is doing "great," I just can't right now. More and more, I see that what we are dealing with is simply NOT normal, and I won't pretend it is. What you see as a good moment can so quickly progress into fatigue and dehydration. Also, a glimpse into our home life would show you what we go through for a chance of him to be even at baseline. Before you see us for a morning playdate at your house, a therapy session or an outing at the movies, a lot of things have already happened. For one, I was likely up til the wee hours with a racing mind, researching, emailing, or (if I am lucky!) reading for fun, just to relax a bit. Joshua has likely crawled into our bed crying and fussing around 3:00 or 4:00 a.m. He may have had leg pains, and stomachache or needed a diaper change. He likely has already had two reflux meds, one supplement, 8 oz of his elemental formula, a motility med and an electrolyte-containing beverage with thickener. He probably has not, however, eaten breakfast, as he usually lacks interest or ability, despite our best efforts. So, the whole time we are out, I am worried about his nutrition and fluid intake as well as how his body is reacting to the heat. I am also observing how he is walking and how tired he seems, to determine if it is a wheelchair day. I am observing any swallowing he does to make sure he isn't aspirating. I am watching his cheeks for signs of redness, his eyes to see if they are swollen, and feeling his skin for cold sweats (hypoglycemia). I am sometimes scared we should not have even left the house, but I try to create as normal a life as I can for him and his two older brothers. I have to carry a huge bag full of stuff just to make an outing safe. I always come home exhausted. On a different note, I am observing listening skills, emotional regulation, speech patterns and socialization, none of which I can claim to be age-appropriate, so that is a whole other avenue to deal with. I realize all parents worry and many parents have so much more on their plates than this. I admire those parents more than I can express. Joshua has done well over time in SO many ways, and for that, we are lucky. I don't want sympathy or- so much worse- pity. I simply want understanding of what families like ours go through on a daily basis, and how that is also amplified by summer heat. Diseases such as Joshua's metabolic/mito dysfunction are similar to lupus or chronic fatigue syndrome in the sense that the patient can look fine in some moments, or even for days at a time. It's both a curse and a blessing to what we refer to as "invisible illnesses." In these cases, a lot of compassion and a desire to learn and spread awareness can go a long way! One of the best things someone said to me recently was, "I don't really understand, but I WANT to!" Thank you for that. I hope many others will follow in your footsteps, with an open mind and heart.

On Eating Out With Special Needs Kids: Why We Still Try

Saturday was Cinco de Mayo, and so I decided I "had" to have some chips and salsa (ok, and a margarita, too). The way the restaurant experience went was pretty typical for us. It wasn't one of our better outings with the kids, but it certainly wasn't the worst, either. We went to a local Mexican restaurant, which took about 15 minutes to drive to. During this time, my 7 and 4 year olds hit each other with a toy drum stick, which of course my husband took away, which then caused more screaming. When we finally arrived, there was a 10 to 15 minute wait for a table. My 4 year old fussed and moaned so much that I finally picked him up, hoping some cuddles would calm him down. Once we got seated, we realized the booth was pretty tight for our family of 5, but we didn't want to wait for another spot to free up, so we decided to make the best of it. Now on to the next challenge... Two of my children and myself have food allergies. This was a restaurant we had been to before, so I knew what I could eat, but it had been a while since the kids went to this particular place with us. I was racking my brain trying to remember what things were ok from the menu. Once I got that figured out and the order was placed, I remained busy trying to keep everyone hydrated and happy. My 4 year old requires thickener in his water, so I luckily had remembered to bring that. Usually when we go out, I also bring some extra snacks such as cereal or fruit chews, plus some baby food and his medical formula. This provides a "safe guard" in case he doesn't feel like eating much from the restaurant (which is often), or, in case the food allergies are too hard to figure out at an establishment. If I am lucky, I also have remembered to pack some form of entertainment, although on this day I really didn't have anything with me that excited anyone! Once the meals came to the table, we checked carefully to make sure they had been prepared to the specifications we need, and then we got busy eating. Well, some of us did. My 4 year old pushed food around on his plate. I think he finally ate one french fry. My older kids did fine. However, they are not immune to table time issues, either. Sometimes they get restless and try to act too silly at the table. Other times, an allergen winds up in my 7 year old's food. (He can't have dairy). Sometimes my 11 year old suffers from swallowing difficulties. Even my husband can struggle with this at times, thanks to a disorder referred to as "EE" or "EoE." We have been in restaurants before when one of my kids had a tantrum, cried about reflux, or worse, vomited at the table. With all of this on board, you might wonder why on earth we don't just stay home all the time. Here is why: I like going out to eat. My kids also, generally, enjoy this change of scenery from our normal life. We have a small house and an even smaller kitchen. It's fun to spread our wings now and again. Aside from that, eating is social! I have two children on the autism spectrum. That, or the food allergies and other digestive issues could scare us off from eating in public, but I think of all the opportunities they would miss if I simply isolated them from meals out, picnics, school carnivals or birthday parties. Almost everything social involves food! I would hate for them to grow up believing it is too hard for them to join in these activities. When they become adults, I want them to feel confident that they can handle a noisy restaurant, and that they can navigate a menu. I want them to accept the invitation to a friend's birthday party, wedding or baby shower. At the very least, they can eat ahead of time and simply go for the sake of supporting friends and mingling. This is what it is really about. If I keep instilling in my kids that they CAN do this, then it will positively impact their future. Until then, though... I might be needing an extra margarita!

Sweetest Valentine

This past week was Valentine's Day, a holiday that I think is fun at my kids' schools, but that I have no major emotional attachment to, or so I thought. That was before I received the most beautiful valentine ever.

My husband took the kids to school that morning and collected paperwork from the teacher, and so it was not until later in the day, when we switched cars back, that I saw a red and purple correspondence lying on the floor of my van. There was some sparkly paper folded up with a heart sticker in the middle. In retrospect, I wish in some ways that I had waited to be with the card-maker (my 3 year old, as it turned out), before opening. But in other ways, I am glad he missed my emotional reaction. I carefully peeled back the sticker, and inside was a small, red construction paper heart with a photo in the middle. The picture was cut jaggedly into a heart-shape also (obviously done by my preschooler with love). The photo showed him sitting in the sand of the playground, looking down contently at a bucket. It summed up the innocence of the age he is at now.

As any mother would, I then thought about how he would not always be this little and sweet, and how time was moving too fast. But then, something else hit me unexpectedly. I got a rush of emotion about his diseases, and it slapped me in the face, more than it ever has before, that I might outlive him. Yes, I have thought of that before, and I have even blogged about it. But this time, in a way that is tough for me to explain in words, it was different. It was the most I have ever faced the enormity of it all. And I realized I don't know how I could ever be on this earth without my son. My heart hurt and I couldn't breathe. His lack of exact lab findings on mitochondrial disease have left me the ability to ignore reality many days, or to assume the best (maybe he doesn't have it!) But the fact of the matter is, he has something metabolic for sure, and also, we know that he has gastroparesis. His stomach has slowed down a lot lately to the point where we are having to search for more and more medicines to get things going, as well as get second and third opinions and consider drastic measures like gastric pacemakers. We now also give him several supplements believed to increase energy. Take a minute to think about that oddity, as I did. He is in preschool. He will be 4 next month. Usually at this age, mothers are chasing their children, and saying they cannot keep up with them! It is common to hear things like, "I sure wish I could bottle that energy!" And here I am, giving my child a "cocktail" of remedies just so he can (sometimes) get off the couch. I have to encourage him to try and play, as do his teachers, where as normally you'd be telling a child this age to slow down or relax!

So, how to take these sad feelings and reality and make them positive? I think the answer is the same as it has always been for me. Don't dwell on the future. Appreciate every day. And, when grief does want to take over, let it come for a while. It's acceptable to grieve normalcy. It's ok to think about how much you will miss someone when they are gone. And then... hug. Cuddle. Say "I love you"- a hundred times. Don't stop believing in the possibility of a cure.

The precious heart card is now in a frame in my family room. I knew I needed to keep it close and make sure it was preserved. It doesn't make me sad to look at now, as it reminds me of all that is good in my life, of all I have to be thankful for, and of love, in it's purest form. Nothing could be better than that.

From The Darkness: On Seeking Help

Recently I have read quite a few blogs in which people have opened up about their struggles with feeling overwhelmed or depressed.

I think about this a lot, as I experience the same feelings sometimes. It's optimal to say we are happy, and to stay as positive as possible, but it is also ok to be sad! I am not a huge advocate of saying I am "fine" if I am not, or posting inspirational quotes when I feel like my world is actually caving in. Sometimes in attempting to look at the bright side, we can, in fact, make our mood better. Still, for the most part, if I am having a hard time, I am going to tell you. I don't really think it benefits anyone for me to be dishonest. If you know me well, you have seen that I feel profoundly hopeless and alone on a down day,and yet luckily this doesn't happen too often anymore. I feel genuinely happy more often than not.

One of the darkest hours I remember, though, was when I was at the end of my pregnancy with my third baby. We were already navigating a new autism diagnosis for my oldest child and a food allergy issue for my other son. The baby I was carrying was not moving much at all, and I was horribly sick with a cough that would not go away. My mothering instinct felt that this third baby had special needs, too (and I was right). When I look back on that period, I remember everything being black. That's how depressed I was. Literally, my images are in black and not color, when I reflect upon that time. I think I very much felt like I was standing on the edge of a dark cliff and that life wanted to push me past the edge.

Despite not feeling social at that time plus being busy, I somehow still became interested in a local high functioning autism support group I had heard about. I remember when I spoke to the woman who started the group, she was in awe of me wanting to get involved right before having another baby. In fact, the first meeting we attended was right after he was born. It was one of the best things I ever did, though. Five minutes in the door, and I knew I had found others who understood me. I didn't yet have a good online support system, and none of my current friends' children had special needs. I almost cried in relief to see other kids accepting my oldest son, not to mention that he enjoyed his time, too! I often look back on this and say that it saved my life. Autism is now our normal. I don't need this support group as desperately I once did, but we still go to the meetings and enjoy the sense of belonging. I have also gotten very involved with another organization that helps children with feeding issues. I will be reaching out to this community for a long time to come, utilizing continued positive connections and giving back of my time, too.

What would have happened if I hadn't pushed myself to seek help when I needed it? If you are having a hard time, I urge you to seek support in the area that concerns you most, or to simply pick up the phone and call a friend who will understand. In addition to that, I believe that we benefit no one when we consistently hide our true feelings. It's ok to tell Facebook that you're sad about something. No one likes "negativity," but we do like honesty. Through opening up, help can almost always be found. May your 2012 be filled with love and light.

Embracing Miracles

It's that time of year again. Christmas is upon us, and it's time to reflect on the past twelve months. It's nice to think about our successes as well as our shortcomings and how we hope the new year will be better. It's a good time to consider what we have learned. Somehow, in the midst of the mundane yet crazy busy year, I have learned to truly believe in miracles. Maybe I always did, though. Maybe this blind faith was always lurking just beneath the surface, but needed something concrete and personal to bring it forth.

Let me explain. My youngest child is now age 3 1/2 and has demonstrated the ability to eat a normal meal only a handful of times. By "normal," I mean an age-appropriate portion or consistency, and I also mean that the meal would take place without gagging, choking, pain, tears or vomit. Actually, just getting him to the table at all is sometimes a feat. The main issue is gastroparesis, a condition that makes it hard for him to take a lot of food in at once, as the stomach doesn't pump efficiently. A recent trip to the nutritionist shed light on the fact that he is getting only half the amount of calories daily that a child his age and size should receive. This is not despite our best efforts, of course. He is still on formula, and it's done well keeping him alive, but he can't drink enough of it or add enough regular food to meet his appropriate caloric intake.

Despite this, he is not losing weight. He is, in fact, gaining. It's very slow, but it has happened. Because of this, he isn't a logical candidate for a feeding tube yet, even though the tube would ease our minds. In fact, his stomach moves so slowly, that if a tube were to be placed, it would go into his intestines instead of stomach, anyhow. That makes me really realize how tough this disease actually is. And yet... somehow... he thrives. Several doctors and therapists have mentioned that they can't explain scientifically how he could be doing as well as he is. In our numbers and facts-obsessed world, this just isn't ordinary.

During another recent appointment, I was told to consider that maybe Joshua simply doesn't even NEED those extra calories the way a typical child would. One theory is that he is often fatigued and therefore not overly active. Still, this thought is hard to feel at peace with. It's asking me to believe in unusual circumstances. It's asking me to trust in things I cannot see or have the knowledge to understand. It's asking me to believe in something that, in some of my darkest days, I have doubted, and that is a higher power.

But, this is what it has come down to. Until we reach a point where something tips the scales the wrong direction or some other decline happens, we have to just trust that all is well. Within that, believing in miracles has really become not an option, but a necessity. On a daily basis, I have learned to coast along on faith. The logical side of me still argues with this idea at times. It is very hard to put your child to bed at night knowing you weren't able to nourish him the way a chart would say you should, and yet trust that he is alright. There are still moments of doubt and tearful calls to the doctors. They question their judgement at times, too. It's a tough situation for all of us to navigate.

However, there always comes the blessing of a new day, with Joshua in his little footed sleeper, smiling and announcing he is ready to cuddle. I am always ready for the challenges we face, even when I feel slightly deflated. His smile and blue eyes inspire me. That, and the chance to look for more miracles. If I have one in my life, there must be more waiting. I look forward to another year of discovering them.

Merry Christmas and Happy 2012!

My Current Top 3 Things That Work

I've been thinking about parenting, and special needs parenting in particular. So much of it is guess work. I am constantly asking myself if I am doing the right thing. There are many decisions I have struggled with. In the end I generally feel good about choices I have made, but at times I could have used assistance from other parents who had been through similar decisions before. Of course every child is different, so what I have so say now may or may not apply to your situation. However, on the off chance that this helps someone, I will write about a few of the best things I have done so far for my youngest child, now age 3. These are the choices that have helped make our daily living easier.

1. Getting a wheelchair.
I realize for some families this is a necessity and not even a choice. According to our orthopedic doctor, we HAD to get one, too, and yet technically Joshua falls into a gray area. He does walk. Sometimes he can even run! But, his gait is clumsy and he tires very easily. We worked around this issue for years by using a baby stroller, of course. However, it started to become apparent that Joshua was not going to outgrow his issues, and that at times the walking even looks worse than it did before. On top of that, he is extremely tall for his age. His head was uncomfortably above the top of his regular stroller. I had the prescription for the wheelchair on my nightstand for quite some time before I could look at it without wanting to cry. Once I made the call to set up an appointment for measurements and choosing a seat, though, I felt more accepting. And when I saw how excited Joshua was, my heart was even happier. I started to see his wheelchair as freedom... for us both. This will enable us to take long walks or go on long family outings comfortably for years. It does resemble a stroller. It's a nice style. It's even "fire engine red" (per a certain 3 year old's request!) We don't use it every day, but I love knowing it is there. If you are on the fence about getting a wheelchair for a child who is mobile yet struggles, my advice is to go for it. I don't think you.ll regret it, ever.

2. Getting a handicapped tag for my car.
This is related to #1. We got our tag quite some time before the wheelchair, though. It came at the perfect moment, right before a trip to California in which, for still unknown reasons, Joshua lost his ability to walk for a few days. I still use it a lot. Like the wheelchair, I don't use it every day, but I love knowing it is there. I don't abuse it. Whenever possible, we try to park close yet save the actual handicapped spots for people who need them more. I do feel good about knowing we can park in handicapped when we need to maneuver the wheelchair, or when Joshua is sick or low energy. At times, he requests to walk, which I hate to deny, and the tag also comes in handy then. He simply cannot comfortably walk on his own from a far away spot. Being able to park in handicapped and then helping him successfully make it to the door helps his self-esteem, rather than him feeling like everything is too difficult for him movement-wise. If your child is mobile and doesn't always "look sick," be prepared for the potential for clueless, rude folks to question your use of the handicapped tag. This is a downfall, and yet it has only happened to us one time. I think the general public is getting a bit more educated that you cannot always SEE a disability clearly. Plus, when you know you are doing what is right for your child's needs, of course it should not matter what others think, anyhow. Handicapped tags or plates are there for those who need them. If your child falls into this category, even mildly, I suggest you get one.

3. Not obsessing about potty training.
This is tough as a parent. There is a lot of pressure from friends and relatives. Like with other delays, I have had to not think about the chronological age of Joshua too much and "what the other kids are doing." He's always gone at his own pace. I do have days where I panic about the time line a little. And, I have even wondered if his stomach issues and weak muscle tone could make full training an impossibility. I will cross that bridge when we come to it. For now, 99 percent of the time, I am able to gently suggest to Joshua that he could try to go potty, but let it go when he can't or won't. I change his diapers without complaining in front of him. He still drinks formula, eats baby food and sleeps in a crib. It therefore shouldn't be shocking that potty training is on the back burner. There are so many other things to work on! I think his little brain is going all the time. He's improved his speech and has become somewhat social at preschool! These are things to cheer about and focus on. I hope I am not still changing diapers when he is in kindergarten, but one day at a time will lead us to whatever outcome is meant to be. If your child is similar, try letting the potty thing go to some extent. Encourage, accept, don't pressure, and see if you both feel a lot more content with each other.

There are other decisions I feel good about, too, but right now these are my top 3. Of course I have my share of mistakes also. (See previous blogs for some of those confessions!) There are so many important things to figure out all the time while raising children. When kids have extra needs beyond the ordinary, life becomes even more confusing, but remembering to relax and ask for help go a long way towards making daily living easier.