In Defense of "Sorry"

Lately I seem to come across a lot of blogs from special needs parents regarding what people should not say to them. Honestly, if I was not a special needs parent myself, I think I would be a little scared at this point to say anything, for fear I would get it wrong. While I do agree with many of the points made, here is one in particular that I don't agree with: apparently, upon sharing news that our kids have a certain diagnosis, it is considered uncool for the person to respond, "I am sorry." The reason for this, (according to several blogs I read), is that "I am sorry" implies that your child isn't a source of joy, but a sad case to feel bad about. But if you come to me, even though I am a special needs parent, or maybe BECAUSE I am one, and you share with me that your child has... autism, mitochondrial disease, cerebral palsy, or whatever, I am still very likely to reply, "I am sorry." And this has nothing to do with not understanding that your child is still an amazing light in the world. You will have more joy at times than you know what to do with.

But I am still sorry. I am sorry because I know this is going to be a harder parenting journey than you bargained for. I am sorry because you will spend countless hours at doctors' and therapists' appointments. I am sorry because you will be saddled with endless amounts of paperwork all the time. I am sorry because you will have to fight tooth and nail to get what your child needs in school. I am sorry because you will spend more days as a special needs parent than a typical parent wondering if you are doing all you can for your kid. I am sorry because there are milestones that will never be met. I am sorry because you will be faced with big, scary decisions regarding medications and surgeries. I am sorry because you will often be lonely, even in a crowded room, even with good friends who try to support you. I am sorry because that joy I mentioned earlier? It may end sooner than your parent heart can bear. I am sorry you even have to consider the sobering thought that you may outlive your child.

Now, I do believe an "I am sorry" comment should be followed by something hopeful and sincere. What do myself and other special  needs parents want to hear, then? Probably a simple, "you're doing a great job" can go a long way. If all else fails, invite us out for margaritas and we'll likely forget any verbal blunders you may have made. :)

About That Cat... and other things.

Ooooh boy, it's been a long time!  And this won't be a fancy or eloquent post. I just want to catch up! Let me confess, aside from being busy, one thing holding me back has been my lack of technical skills. I've wanted to change the URL for my blog because I felt it no longer was a good representation of what I wanted to write about. It was "3 times blessed," and while yes, I still feel fortunate to have my family and know we ARE lucky, the word "blessed" has been over-used in social media to the point of nausea for me. And if we are being honest, I felt like maybe it misled people to think this was a religious blog. If you know me, you know I have faith but that sometimes I question that faith and that all of it is expressed in our family quietly at home. I am not and probably never will be a church-goer, and I am ok with that.

So today not only did I finally figure out how to change the URL, but I also realized it was the perfect opportunity to add in the new addition! I might blog about him a lot. No, I haven't had another baby. But we adopted a cat a little over a month ago. His name is Taffy. I frequently call him "Kit Cat," "El Gato" or just "Hey You." But surprisingly, I love him. I mean, really love him! I have had bunnies before but never a cat. I was a very reluctant cat owner, and now, like so many things we choose to take on, I can't imagine my life any other way anymore! The cat was mostly Joshua's idea. Thankfully, he got the affectionate personality he wanted. They've made fast friends.

I no longer keep up with Caring Bridge. I also don't talk much about Joshua's health stuff on Facebook anymore. Just know that while challenges remain, and are sometimes harder than they even were before, we are ok. My life is: medicine dosing, syringe washing, breathing treatments, therapy appointments, doctors, school drop offs and pick ups, baseball, soccer, swimming... And me, sometimes me. I love to get alone time or time to see friends outside the house. My sanity is kept by the escape of books or movies. No matter what though, I am first and foremost a mother. And just doing the best I can every day. (Just like you are). :)

Holding On A Little Bit Longer

Dear Joshua at age 6,

You're the last baby, so you're allowed to come in our bed in the middle of the night, squish in-between us, steal the blankets and force me to sleep halfway off the mattress edge.

You're the last baby, so you're able to bring your bunny to first grade in your backpack (provided he stays tucked away). Maybe some would say you're too old to be allowed this luxury, but I have the wisdom gained from your brothers before you that tells me this won't last forever.

You're the last baby, so I linger for extra bedtime hugs and kisses. I savor the storybooks, bath toys and cute pajamas. The nightly rituals of early childhood are among life's simplest gifts.

You're the last baby,  so I procrastinate weeding out the blankie and sippy cup collections. When those leave my house, I will never have a reason to replace them, and sometimes that makes me sad.

You're the last baby, so I often forget how big you really are. Your height actually rivals that of your 9 year old brother's.

You're the last baby, so I have gratitude for you being the one to truly teach me patience and multi-tasking.

You're the last baby, so I'll never again be the frazzled mama at big kid school pick up with a fussy toddler on my hip, looking for his pacifier. I didn't know I could ever feel sentimental about moments like that, seemingly so stressful at the time.

You're the last baby, so while I want to keep you little, I know there are joys in watching you grow. I hope for your happiness and health and many fun stages to come.

Love,
Mommy

In The Moment... Again

Living in the moment is a popular notion. There are countless blogs, articles and books created to teach us how to incorporate this way of thinking into our daily lives. I've written about it before, too, finding it essential to my happiness. 

It seems to apply so much to the life of a parent who has a child with an uncertain prognosis. How else can we get up, and do all the tasks required for living in a relatively calm manner, unless we take things one step at a time? 

I feel challenged when I am so stressed that I have to remind myself constantly to stay in the moment. The sweet spot for me occurs when I'm living this way effortlessly. Sometimes I can actually go a few weeks at a time without thinking about the future and making guesses what that may look like. 

It is harsh reality that all my maternal love cannot anchor my child with mitochondrial disease to the earth as long as I want. I am not ultimately in control. I can do all the research, take him to all the right doctors, try all the right medicines, and it still may not be enough. 

But here's the thing, and we often forget it. There are no guarantees any child will make it to adulthood. There are accidents every day. There are fluke illnesses that take the life of an otherwise healthy kid. So I've been spending all this time assuming I'm different than other parents, and I am really not. Likewise, us adults are not invincible, either. Even those of us who are relatively young still and healthy have no guarantees on this earth. 

We ALL have to live in the moment. It is truly all we have. We should take that trip, call that old friend, let our sons or daughters stay up just a little longer, and hug a bit tighter. I think those moments make us lucky, whether we get 1000 more of them still or just one.  The fragility of life is best seen as creating our experiences' beauty rather than tainting it. 

What I Want You to Know About Mitochondrial Disease

As we begin Mitochondrial Disease Awareness week, I am finding myself tempted to share statistics or re-post articles that have me nodding my head. I still may do these things. More importantly, I wanted to try and describe my personal experience with mitochondrial disease and how it affects my family.

This is what I wish for you to know, and to understand:

1. Mitochondrial disease can affect anyone at any age. It can be quite obvious, or very subtle. Patients can manage to participate in sports, or can be confined to wheelchairs. In our case, Joshua falls somewhere in the middle. He has exercise intolerance, but he can walk short distances. He uses a wheelchair for longer walks. Sometimes he rides for shorter ventures if he is just having a bad fatigue day. We are thankful to have the wheelchair. We are also grateful he does not, at this time, need it constantly. But it still sometimes makes my heart ache that we even need one at all.

2. Many physicians have been involved in the diagnosis and care of Joshua. We still lack a specific diagnosis for his health problems, (despite all their expertise), therefore, they say he has "unspecified mitochondrial disease." It is common to spend years to even get this generalized diagnosis, much less a specific one. Even the newer, more sophisticated methods of "combing through" all the DNA will not find EVERY type of mito defect out there. We are currently waiting for results of a whole exome sequencing test from TGen that makes us feel hopeful. This has not been an easy road, seeking answers. It makes me upset when someone says that they would stop looking and "relax" if it were their child. You would? You would not want to know what affected your child's daily life in such a dramatic way, or what it meant for their siblings or future generations? Think about this for a minute.

3. There are many issues Joshua has that are considered secondary to his mitochondrial disease, which include: gastroparesis, GERD, hypotonia, autonomic dysfunction, asthma, food allergies, tachycardia, neurogenic bladder, immune deficiencies, dysphagia, heat intolerance, hip dysplagia, cerebral palsy, autism spectrum disorder, visceral hyperalgesia, convergence insufficiency, etc. Even dealing with just ONE of these problems can be hard. So we juggle them all, like a crazy, multi-ring circus! We are constantly adding new issues to the mix, and trying to figure out how to manage them.

4. In many moments, on a good day, Joshua can appear pretty typical. What a blessing! However, I am aware that people also do not take into account all that we go through to make this so. Before leaving the house for school, for example, we give him his medical formula, four medications and a supplement. He takes three additional meds in the afternoon, and he needs approximately ten interventions or meds before bed, depending on his status. There is no cure for mitochondrial disease. There are only meds to help the secondary issues mentioned above, and supplements that are believed to aid in mito function. Almost every thing is a shot in the dark, all the time. We give things, often paying out of pocket, in hopes that they provide some benefit.

5. I have encountered a vast support system of other mito parents online, and some in person here in Phoenix. I am thankful for their support, and I hope sometimes I can help them as well. We share advise and experiences. We have each other to vent to when no one else gets it. Some of them have children who are no longer living. But they still come on the Facebook groups to offer support to the others. These are incredible human beings. Never can I express enough my sorrow for their losses, or my appreciation that they still fight for the other mito kids.

6. I am a pretty positive person, but I have tough days. Sometimes I worry a lot about my other children. I worry about my own health issues. I worry about Joshua's future. I enjoy posting on Facebook and texting my friends, or going out, but there are times I feel I cannot be completely honest about the difficulties I am facing, and therefore I withdraw into my own world for a while. I cry more often than I like to admit. On the flipside, there is love. So much love. I do not take much for granted. I am determined to be an advocate for my child. One of the ways I can do this is by allowing myself to open up at times like this and do my part to make mitochondrial disease a household word. If you would like to find out more, please consider checking out www.mitoaction.org

Dear Phoenix (A Love Letter)

Dear Phoenix,

I have been in love with you since I was 10 years old, and I came to visit with my parents. I never wanted to leave. When I was told several months later, (sitting at our kitchen table on a cold Illinois day), that we would be moving here, I cried tears of happiness.

I enjoyed growing up here. I feel like you grew up with me, from a baby city to a sprawling metropolitin area. I only abandoned you when I went to college in Colorado for four years. Colorado is an inarguably pretty state, yet it only left me missing you. I craved returning to your cool winter nights, sitting outside by a fire, and your warm spring days with a desert in bloom. I even missed the summer sun, and the relief that nightswimming or monsoon storms can bring.

I do not think I love you in spite of your imperfections, but because of them. The desert can, at times, be a harsh environment... a little too hot, or a little too dry and plain-looking. That means I have to look harder for your beauty on certain days, but it doesn't take long. It is always there. A brown, seemingly dull landscape, will generally hide an interestingly-shaped cactus, or a desert plant with flowers. You may not have green, rolling hills and forests of tall trees some people have come to associate with beauty, but you radiate all the same.

Some people may connect their home with a traditional smell such as honeysuckle or roses. I desire only the smell of your creosote  after it rains. There is nothing else that can calm me like this, or remind me I am where I belong.

Thank you for your magnificence.

Forever Yours,
Debbie

6th Grade, Autism and Life Wishes

Tomorrow my oldest son starts 6th grade. 6th grade!!! It is his last year of elementary school, in a self-contained twice exceptional program I fought hard for him to be a part of. It has also been six years since his autism diagnosis shook our world and changed everything we thought we knew. (The photo is from right after we found out, though there's nothing in that smile that indicates anything was amiss!) A lot of times I still see the immature aspects of him versus his peers. I have to repeat things a lot. Every night I can tell him to do "xyz" in the morning, and nine times out of ten, it doesn't happen. He has meltdowns comparable to a toddler, and yet more violent in nature. He obsesses about his interests and will talk endlessly about them to anyone who will (even remotely) listen. He struggles with eye contact. He needs an enormous amount of help organizing and being motivated to do any homework. He still attends weekly OT and speech appointments. It's all part of the gig... the autism gig... the one I did not sign up for but took on as a labor of love, the way all parents of kids on the spectrum do. Despite the fact that some things are stagnant and we have rough days often, we have still come so far! No accomplishment is small, in my eyes. Every step forward has been hard won! It is interesting at the start of a school year to see what parents of typical children worry about for their kids compared to special needs parents. (One of my kids IS typical, so I feel I am in a reliable position to make this observation!) There is a lot of chatter about which teacher is best, what test scores a child might have, how the grades will be, how the child might do in sports, etc. I want those things to work well for my autistic child, also. However, it isn't my focus. Those things would be icing on the cake. All I really want is for him to be happy. I don't just mean in school, but even afterwards, in life. I want him to find a job he is comfortable with and that doesn't stress him out too much. I want him to be able to care for himself by shopping, cooking or doing laundry. I want him to have a friend (more than one would be nice, but even just one really good friend would be fabulous). I want him to be a respectful son and brother. I hope he will learn to find joys in little things... the relaxation of a rainy afternoon, the discovery of a new hiking trail, the satisfaction in finishing a good book, the fun of getting lost in a great movie. I want him to realize he is an amazing human being. I am sure there will be some ups and downs in 6th grade, as there will be later in life, too. Experience tells me that we can weather any storms together. Sometimes solutions in autism resemble a complex maze rather than a straight and easy path, but we find our destinations eventually.