The daily grind

I find myself counting down the days until the end of summer. I never want to wish time away, but the heat, the end of the pregnancy, the lack of structure and long days seem to be dragging on and on. I most certainly didn't pick the ideal place to live given that I prefer a cooler climate, but in many ways Texas has become home to me, even though I still miss Atlanta from time to time.

Home is no longer where I come from, but now is who I have become. The life Bryan and I have created is precious, and though in many ways this life is not what we would have chosen or expected, we cherish it nonetheless, and are trying like hell to make the most of it.

Since the time my life has been forever altered by my beautiful daughter's disease and disability, I have been working really hard to focus more on the "big picture" and not the daily struggles. I write about the big picture all the time. When I speak of gratitude, abundance, perspective, and even grace... I am able to see beyond the daily grind, passing frustrations, moments of overwhelming sadness and helplessness, and see the beauty in the life I lead. The beauty in disability. The beauty in relationships, and the joy resulting from heartache. This focus has enabled me to cope, and find meaning and purpose... but it doesn't mean I don't still lose it from time to time.

Afterall, I spent 30 year or so projecting my future and living for tomorrow... so learning to live for today, not borrow trouble, and give up trying to control the unknown is a hard habit to break.

The only thing I know for sure is that I don't know much at all. I can live and grow and learn from my experiences, and for the most part, I can choose my attitude. I can try again and again and again if I don't get things right, and I can create hope and live in peace as long as I keep my perspective in check. The struggles my daughter and I face, and will continue to face will surely be there to meet us, and I can keep going, or give up. For her sake, I will not give up. I don't have all the answers. I don't even know all the right questions to ask. I don't know how to rid my anxious mind of worry, doubt and sadness... but I will keep trying to replace it with the lessons bestowed in the "big picture."

Not all our days are good ones. In fact, it seems lately everywhere we go we get more stares and glares. Avery now outwardly appears different and disabled to all who encounter her, and that has been a little tough to swallow. But day by day I am learning not to let the small stuff... or the "what she can't do's" ruin my precious time as her mother. I suppose in many ways this is all part of acceptance. I accept that Avery has many limitations... but I also accept and love her no matter what the day has been like. Whether she has moved forward or backwards. Whether she has suffered from another unexplained fever, had puzzling lab results from bloodwork, is covered in "spots" or mastocytomas for some unknown reason or not. I can't control it. I can only work hard to maintain sanity, search for answers, and love my family with my whole heart and soul.

So as the summer days drag on, I am optimistic that within them I will share thousands of precious moments with my two daughters, before they become three. I stay so busy at times I can hardly see straight, but within the daily grind there is always time to be grateful for the positives. I spend far too much time worrying that I am not doing enough for my girls... and my mission for the next few weeks before our family expands is to try to let that go, and just continue to do the best I can and let it go at that. It's harder than it looks, but surely I can do it.

So this is Motherhood

We had the privledge of traveling to Atlanta for Mother's Day this year. It was lovely to spend the weekend with my mom, who happens to absolutely adore my children. It is fantastic to see the girls light up when Grammy comes around. She has made MORE effort than I ever imagined a long distant grandparent could make, and she manages to find a way to see them about every 4 to 6 weeks, so they know her well and the joy and comfort they demonstrate in her presence is obvious. We are surely blessed and lucky to have such support and family involvement. It can certainly make the world of special needs and disability easier to bear.

My mother, like me and so many women I know and love has redefined herself in her role as a parent, and now as a grandparent. When deciding to have a child, or in my case THREE, I am not sure we truly grasp the total impact these little beings will have on OUR life, on OUR priorities, and on OUR overall character and purpose.

I love my children, but sometimes I don't exactly have the same level of awe for the person that I am after having them. For most of us, the daily grind of caretaking will get easier as they age and become more independent. But for others of us, whose children will likely need a lifetime of care and assistance with the most seemingly simple of tasks, the role of motherhood shapes into something even more all-consuming and overwhelming. And as hard as we work to make sure our child(ren) is not defined by his or her disability, in the meantime, we too can easily come to be defined by our role as a parent of a child with a disability.

I still find myself saying all the time... "I never imagined I would have to ever do this" when I do things like get a handicapped parking pass, fill out forms for the state based medically dependent children's program, or still change the poopy diapers of my four year old. You would think that two years after diagnosis I would be used to it... but as our children age, their needs become less managable for one family to cope with and afford. So from time to time I can't help but see women my same age, out in the work force, going out for martinis and taking care of their pet fish... and I am admittingly a little bit envious. Even though I can fully admit that Avery (and Kaylin too for that matter) are my whole world and that all and all I am a much more authentic, aware, and true version of myself because of them.

Still... the me before them... the me who traveled and studied and read all kinds of fascinating books and lived on my own agenda... that me was pretty cool too... and every now and then I miss her. Just a little bit. And it's NOT that I am ungrateful or overly negative... maybe just a bit of a realist. God knows that I more than most can find beauty in even the most dire of circumstances.

So this mother's day more than ever I remain inspired by all the women who take on this role with grace. Inspired by those who work, who do it alone, who stay at home, who have perfectly healthy children and who have children who need a little (or a lot)of extra care... because regardless, it changes you. When you become someone's mother your life is forever different... and like anything, you can do it well, or you can fail. For MOST of us, it's probably not exactly what we expected. I am not sure you can even explain to an expecting mother how much she will love her child. It's a completely redefining kind of love. My hope is that somehow within the whole lifelong experience we can hold on to who we are... to what makes us awesome as individuals, and take some time out and away to connect with our own beauty. Because it's still there, even amidst the daily grind of carpools, lunch-making, diaper changes, potty breaks, spilled drinks, laundry, tantrums and cartoons... it's still within us. I know it is.

Connected at the Heart

One of the most attractive qualities I seek in other adults is self awareness. Being able to see, love and appreciate your authentic inner beauty while at the same time recognizing your flaws and idiosyncrasies. I love people who can laugh at themselves... and whose character is not a secret, but is out in the open for all to enjoy, and critique as they always do.

For the most part, I have been extraordinarily blessed to have found a few fantastic women to share my soul with. Women who don't judge me (at least I don't think they do) and who exude patience and encouragement towards me as I travel my own personal journey of revelation, joy, heartache, and transformation. Relationships are food to my inner peace, and I am so grateful to have some pretty outstanding individuals to call my friends.

The daily grind of motherhood... especially motherhood involving a special needs child, can be overwhelming and depressing to say the least. Feeling isolated and completely redefined doesn't help... and as I try to figure out who I really am and how I want to be defined in my sometimes chosen path is much more tolerable when you have someone who stands beside you, and holds your hand from time to time. If you bother to read this blog, you are likely one of those people who helps me feel sane, who reconnects me to the world beyond my own selfish interests, who shares in my life, if even only via internet. Everyone of you has a place in my heart, and I am so grateful to be able to acknowledge and appreciate you in some way, though I am sure it will never be enough.

Perhaps the greatest tragedy surrounding my daughter's diagnoses is that given the nature of her disorder(s), she may never be able to have the self awareness I speak of, or connect with others and feel the utter joy of sharing in someone else's ups, downs, and learn from someones experience other than her own. Autism is such an isolating disorder, and it saddens me beyond measure that she has no idea how much we love her, how important she is and how her presence has changed us, in every way, and made us better. I have written of permanence before, and that is such a tough concept to swallow. That she may indeed one day speak, and will likely make progress, but that she will almost certainly always be handicapped by her disability, handicapped in a way that socially inhibits her from realizing the abundance I write about when I acknowledge the relationships that make me whole. It is so difficult to wrap my head around... so I try very hard to live in the moment, and not borrow trouble that is most likely waiting for us around the corner.

Like each one of you, I KNOW that in some special way, my daughter has a purpose. She, if nothing more, teaches those of us whose minds DO work properly to have more patience, to stop placing unreasonable expectations on others, and to love in a way that is truly and completely without conditions. You see, she cannot tell me, and even has a hard time showing me, that she loves me and is connected to me. So I have become a master at finding even the smallest way to connect to her. Not with my eyes, or with my words, but with my touch, and with my heart. So though she may always be disabled in connecting with others, it is OUR job to learn from her. To learn how to love in the most simple of ways. She may not be able to speak of love... but to me and her Dad, she IS love. I wish for all of you, my dear friends and family, to one day see how beautiful that really is.

A little bit Crazy

Pregnancy doesn't exactly agree with me. Don't get me wrong, I KNOW this is a blessing, and that we certainly want three children... I just feel like a sick, anxiety ridden, over-reactive, not to mention fat version of my former (fairly sane and put together) self. Thank GOD this is a temporary state... I am already counting down the days till I can resume normal coping meds and the nightly glass of wine to ease my stress! I can assure you that my husband and children probably are too! The overabundance of hormones in my system have taken over. So I guess you could say, at least for the next few months, that I have gone a little bit crazy... so I apologize in advance for anything I might do or say that seems a little over the top. Again, thank GOD this is temporary. I like the normal me much better, but I remain extraordinarily grateful.

Grateful for my husband who tolerates my moods and my anxiety, grateful for my two cool kiddos... disability and all! And grateful for my extended family and amazing network of friends who "get me" and can laugh and cry and share in my life however crazy it may be. I found a quote that I love describing gratitude and it's power. It is as follows:

"Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow." (Melody Beattie)

Of all the attributes one can acquire, perhaps the most important when dealing with a sick child, a bad day, disability, and even death of a loved one is gratitude. Like anyone in a situation similar to mine, I have days when I see friends who seem to have it all (healthy kids, steady finances, support, attractiveness and so on)and wonder why MY life has to be so hard in comparison. My competitive nature has NOT been a benefit in the last few years, so I have worked really hard to let it go... and instead adopt an attitude of gratitude.

I am so thankful for the gifts in my life. Even the ones that may not seem like gifts at all. Maybe not in a moment where I am a little bit crazy... but for the most part, Avery has given me clarity. One more gift from my sweet little non-verbal miracle. So at the end of a particularly difficult day, or hour... I try really hard to close my eyes and step back for just a second, take a deep breath and remember to be grateful. Grateful for GRACE, JOY and soon to be HOPE in my life. This pregnancy is a means to an end... and at it's finale... we will have a third beautiful daughter who will add so much love to our growing family... and not to mention HOPE.

Celebrate

Yesterday our sweet Avery Grace turned four. This year we made a great effort to keep it simple, and celebrate Avery for all that she is and for what she CAN do... and for all the love, wisdom, joy and grace she brings to our lives. I spend quite a bit of time on this blog documenting my journey with coping and acceptance. I initially intended to be writing about the great strides Avery would surely make in overcoming the challenges of Autism and mastocytosis, but the journey never quite goes as planned, and ours has been a struggle I never imagined would be so arduous. But yesterday, even if it was just for a moment, we were able to put aside our heartache and worry, and celebrate our precious daughter... just as she is.

At four years old, Avery is still doing great on the potty. She is not 100% yet, and can't initiate that she needs to go, but as long as we put her on there every 45 minutes or so, she does an excellent job, and is even learning to pull up and down her pants! She is a wiz at her iTouch, and it has been an extraordinary vehicle in her success in communicating and showing us what she knows. Avery is pretty good at puzzles, and loves to hold hands and is gaining motor strength all the time. She can almost climb stairs without assistance and loves to climb all over the furniture in the house! Avery can use a spoon! She loves to eat and is becoming much more independent at feeding herself. Avery seems to really enjoy going to school. She has amazing teachers and therapists who enrich our lives and have opened their hearts to Avery and our family. Avery has a precious disposition. She is happy and content most all of the time, and perhaps most importantly, she brings awareness and hope to those who know and love her.

Whoever dreamed that my most influential teacher would be a sweet, disabled, little girl who has no idea of her impact? Who may never know how she gave me purpose and brought meaning to my life. There is alot that Avery cannot do... and may never be able to do... and that is hard..... very very hard... to wrap your mind around. BUT, through gratitude, love, acceptance and awareness, I can see Avery for the amazing little girl she is. I hope you can too... I hope that her life and her story brings you awareness, perspective and most of all hope.

Happy birthday to our precious angel. We love you always and forever.... and to the moon and back again.

Permanent: Coping

It may be the first time in a month that I have a completely quiet moment to myself. It is early in the morning, and the rain is softly drumming the roof, and all in my house are sleeping, except for me and the dogs.

Kaylin will likely be up any moment, and when she is awake, there is never a dull moment. She always has something to say, and amazes me daily at her ability to communicate and understand. The blessing of a first born who has a disability is perhaps having the awareness to really appreciate and value what comes naturally to most children. I take none of it for granted.

Avery and Bryan will hopefully sleep in. Avery has had a very hard time sleeping lately... a common occurrence with children on the Autism spectrum. Even though she is medicated, her neurotransmitters just don't work the way yours and mine do, resulting in crazy sleep cycles and many restless nights. Bryan took over last night and they didn't get settled until after 3 am. So I am on Kaylin duty this morning as soon as she awakes.

Our day to day life has been very routine lately, and as I am now into my second trimester, I have a little more energy and am maybe a little less sad and overwhelmed. We had a level 2 sono of the new baby as well, who so far looks healthy thank god, and who the doctor thinks is a boy. All good news.... Uh oh, Kaylin woke up... which means I may get in one sentence per hour today. :)

I'm back... but it's another day all together! Oh well... ANYWAY...

Lately my thoughts have been circulating around the idea of permanence and how it relates to our journey with Autism. Most things in life are not "permanent." The great reality of the human experience exists in the unique ability we have as individuals to change our circumstances. Sure, that is not always the case, but more often than not, "permanent" is not really something we have to deal with all that often. Even for us, though Autism is "permanent" the challenges we face related to it and it's hold on our family as a whole and our little girls' beautiful mind, are likely to be ever changing. The whole journey has evolved for me personally, into something I hoped was "mild" and only really "hard" initially, to something I now understand to be quite severe and likely, difficult (though changing) for the rest of our lives. I don't think I could have wrapped my head around that in the beginning. But over time, my understanding of how Autism effects Avery specifically, and even our family, has become something I am learning to cope with daily, if not hourly. And if there is one thing I am sure of, it is that the hard parts are no where near "over."

Every week or so, I read another story of some miraculous child who beat the odds and has become "almost indistinguishable from his or her peers" or has all but "recovered" from Autism. Frankly, I am sick of such stories. I guess they didn't have the kind of Autism Avery has... because if there was a way to treat/recover her, I promise you by now I would have found it. Surely. Not that I have completely given up hope. I still believe in the possibility of medical or even holistic breakthroughs, and I remain optimistic that one day, Avery will be able to function at a much higher level than she does now... but as we are weeks away from her 4th birthday, and she is still non-verbal and very very very disabled in every way... my initial hopes of "recovery" are long gone. It saddens me beyond anything you can ever imagine, but I fear it is our reality, and that Autism is one permanent factor in my life that I cannot change. The guilt is overwhelming. My words could never even begin to describe it.

Which brings me to my purpose. Not the purpose of this particular blog entry, but my overall purpose... at least for the moment. How can I turn something so devastating, so completely maddening and life changing into something at all positive or productive? I can do this. I can use our story and share it with people who may need to hear it. I had a great opportunity a few weeks ago to speak at a few mom's groups in the area about sensitivity to friends and family who may have a child with a disability and about what it's really like when it happens to you, or your friend, or someone in your family. It was very therapeutic to me... much like this blog is, and like my job which includes helping parents through the hardest time in their lives... I feel that providing that support and spreading my own message may just be my purpose. My life purpose.

So what else can I do? I can talk to other mom's going through diagnosis, I can unite them and more weathered mom's together in well deserved "mom's night outs" and I can spread awareness, and hope, and share sorrow and pain. Better mom's than me are out there lobbying for insurance coverage, are trying to change laws to better our disabled children, and are really attacking some of the bigger issues... but here at home with my soon to be three small children, I have to find a way to bring some sort of meaning to my situation. To create a silver lining, and to make Avery's life and existence valuable and important. I am her voice after all... and it is up to me to make sure that her message, whatever it may be, is heard.

I am trying to figure out, little at a time, how to do that. How to somehow make lemonade out of rotten lemons. I may spend a lifetime trying, but since I can't escape our permanent circumstance, I guess I have a lifetime to keep at it.

Now for the positive spin.

Autism may be "permanent" for us, and it's resulting challenges ongoing and ever changing... but also permanent are my deeply rooted feelings of devotion, love, respect, adoration, and passion for my child who may never be able to show me any of those things in return. I am forever committed to her. To help her be all that she can be, and to provide her with every opportunity I can, including a family who loves and supports her... no matter what. I am permanently committed to protect and adore her, until the day I die. And find some way to provide for her even after that. Another life purpose.

I always felt like I was made to be a mom. I never knew how hard that would become, or how much I would actually love my children, but I knew it was meant to be. I can't say the same for Autism. Our kind of Autism is devastating. But I'm trying. I will never give up. That is permanent too.

Big News

I've written a dozen blogs in my head over the last month, but have failed miserably at trying to actually sit down and document my thoughts. I am swirling with emotion at this time in my life, and frankly, have been a little down in the dumps, which doesn't make for much of an uplifting read... but it's the truth. I have gotten a fair amount of acclamation from friends and family, and even a few strangers, for my strength amidst adversity... so when I feel weaker than usual, I am admittedly a bit hesitant to be the open book that I normally am. But this is life. We all have our moments, and maybe now more than ever I NEED to post on here. If for nothing more than free therapy.

Part of my mixed emotion comes from the fact that in 6 short months, Bryan and I will welcome a new sweet baby into our home and hearts. Some of you may think we are just plain crazy, or glutton for punishment... but we actually WANT this blessing... even though the timing may be a bit sooner than we anticipated.

It's not that our life isn't hard enough at this very moment with our very disabled, precious almost 4 year old, and our spunky, free spirited, totally typical almost two year old. Trust me, it's challenging. It's more of a "big picture" wish.

Even before I had a child with special needs, I wanted a big family. But once we became aware of her disability, and accepted the fact that she will likely always live with us and need special care... I wanted even more to surround her with the unconditional love that sometimes only family can provide. Siblings who will love her no matter what, and hopefully be there for her in ways and times that I can't. It is one of my many hopes for her, and for us as a family. I also didn't want Kaylin to feel the burden all by herself... I didn't want her to one day be making decisions about Avery alone. She deserves support too.

So though I KNOW we will have several difficult, chaotic years ahead... in the big picture, I also KNOW that this is the right thing for our family. That we will love and adore this baby no matter what... just as we do our two very different, very special little girls.

As you can now see, my plate is full. I have another two years or so to panic about autism again, and don't think I will be able to take a deep breath until this baby is two and hasn't shown any sort of regression. During my pregnancy with Kaylin, I was only just beginning to learn of Avery's struggles... and I can say with certainty that it was THE hardest time in my life.... so this time around, which will more than likely be my last... I am hoping for a little less anxiety and stress.... but the jury is still out on that one.

Most of the time I am able to cope in a pretty healthy way. I am able to see our difficulties through a lens of positivity, and have become fairly adept at living in the moment. But for now, when I feel nauseated every minute of every day, and I can't sleep because Avery still wakes up almost every single night, and my hormones are out of control and I am getting fatter by the second... I am having a hard time with my perspective. I am exceptionally sad about things that I have long ago learned to "deal" with. And the worst part is... I am not enjoying any of it yet. I feel too crappy, and can't take anything to take the edge off for fear of damaging my unborn baby.

I know "this too shall pass." I get that. Thank god. But, the only thing that I am certain will pass is my perspective, my nausea, and my pregnancy... I am NOT one who actually likes to BE pregnant. The babies I LOVE... getting there, not so much. What won't pass is our journey with Autism and mastocytosis. Our constantly evolving issues, hours of therapy, and struggle with disability. It is lifelong. And at times, when I really feel like shit, that seems almost unbearable to me. Still. I guess I am NOT over it. I don't know if I ever will be.

So what now? We march onward. I suck it up, and try my hardest to focus on the happy moments. I go back and read my previous posts of gratitude. I remember my MANY blessings, and simply cope. Thankfully, I have an exceptionally supportive husband, amazing friends and an outstanding extended family. See. I feel better already. Free therapy I tell you. Writing this blog is free therapy.

2010

How we measure success depends largely on our own upbringing, our own place in various sociological races, our temperment, our personal outlook, and so on. For most of my life, I have thrived in a world of competition, stayed the course, been rewarded for hard work, years of study, and perseverance. As my Dad would say, most of my life had been pretty "charmed." He doesn't say that much anymore, but I would venture to bet that he knows that in many ways, it still is.

So, from year to year, I would look back and be proud of various accomplishments, and look forward to the year ahead with eager dreams. Always knowing without a doubt, that if I worked hard enough, surely I would reach my goals... no matter how lofty. Call it arrogance. Call it blind naivety, immaturity, whatever... but it was a nice place to be. A place where no matter how difficult the obstacle... success was sure to be found.

Though I don't live in that place anymore, I do reside in a much more real, raw, and bittersweet location. Maybe motherhood in and of itself would have paved the way, but the real vehicle for the transformation has been having a child with a debilitating disease and a significant disability. It has changed the way I live, the way I see, and the way I perceive almost everything. It has colored every aspect of my life, and every single day I am reminded of how incredibly hard, yet lovely, life is when you have a child who is challenged in almost every way.

The last few years have brought me wisdom beyond that which I ever imagined, strength I never dreamed I could have found, and love that sees beyond words, gestures, and literal meaning. It wasn't my "plan," but it has become my purpose. I have lost my competitive edge, and certainly don't sweat the small stuff. But I am happier for it, and certainly more evolved.

So now, as we start a new year fresh... I am learning to let go of the hopes of years past that fell short. The goals yet to be achieved and the dreams that fade a little each passing year. My life, my husband, my children, my family and my friends are what matter, and the lessons they bestow upon us when we are graced with their presence. Perfection is not the goal, and neither is "progress" or whatever that means. Moment to moment living...coping, realizing your blessings, and understanding your own personal purpose. That is my new dream. To never quit learning, evolving, and finding new, breathtaking moments within the struggle.

It's not that I have lost hope. Rather, I see hope in a different way. I will remain relentless in finding ways to help my child... but I won't let her progress or lack there of determine my happiness or shape my attitude. I can't. I won't survive this if I did. And it's not as though she hasn't improved in some ways. Every month I feel like we have broken through just a little bit more.... but it still burns that my child has yet to regain most of the skills she had as a 12 month old. She is almost 4 after all. But in between the difficult moments... there is peace. So I will keep my focus on that... and move on.

As we enter this brand new year, it is my prayer that it will be full of blessings. Progress will certainly come, and we will be grateful, but my happiness and contentment surely won't depend on it. So cheers to 2010. May it bring you love. May it bring you joy. May it bring you truth... and best of all, may it bring you peace.

Our 2009 Holiday Letter

Peace. It does not mean to be in a place with no noise, trouble or hard work. It means to be in the midst of all of those things, and still be calm in your heart.

I choose to think of it as another year wiser, or another year stronger rather than just another year older. Thankfully, this year, we are also another year calmer. More at peace, and more open to what life has enabled us to behold. Ours is a life that in many ways I wouldn’t wish on anyone, but it is also a life I cherish, and wouldn’t trade with the luckiest of families. Lot’s of people face illness, disability, financial woes, emotional hardships, lost dreams and difficult hours. We are learning to face our trouble with peace... and with a new perspective given to us by two very special little girls. One whose life will be harder than most, who has yet to find her sweet voice, and who fights illness and disability every day of her life with a smile on her face and a longing to hold hands and give hugs. The other whose voice adds a new beat to our melody, and whose spunky, feisty and fun personality brings us joy beyond measure.

It has been a year of mountains and valleys. A year of arduous realizations, and a year of awakening to new possibilities. We can say with confidence that Kaylin is healthy and neurotypical. She speaks in sentences and can relate to others beautifully. She can run and dance and laugh at jokes. It seems miraculous to us. We also understand now better than ever how mastocytosis and autism have impaired Avery’s brain development. But Avery will not be defined by her disability. And her presence can be felt in the hearts of many, as her story of grace and inspiration ricochet throughout our community. She is a constant source of rhapsody and joy, and has enabled many to see beyond language to find unconditional love through simple, pure human connection.

It has also been a year of gratitude. Our extended family and friends continue to astound us with their support and encouragement, and we are blessed to be able to be the parents we need to be to our children because of their benefit and guidance. Avery spends 25 hours a week in school and 15 extra hours a week in therapy... and it is because of the compassion of others that she has made progress at her own pace... and in ways we may never have been able to provide.

And finally, we are at peace. Though we may never “get over” some of the hardships we are blessed to endure, we can also see the beauty only found within the element of adversity... and we are better because of it.

We wish you all a magical holiday season and an abundant 2010. May you all find happiness within, and live in peace as you travel your journey.

What really doesn't matter.

In the early days of "what the hell is wrong with my kid" I started to withdraw a bit from social activities where my friends kids would all be laughing, playing appropriately, acknowledging others, talking, and so on. Every time we would go, it was like a dagger to the heart, and I would usually leave a bit early feeling a little more sad and afraid than I did when I got there... so naturally, it got easier to avoid the get-togethers than to drudge through them with a fake smile and less than believable positive attitude. In some ways, time and more time have made such gatherings easier to bear, and certainly, having Kaylin to bring along makes the hard moments with Avery a little more tolerable. Some friends may have gotten sick of having to edit their conversations with me, and censor their bragging rights as parents, but more friends than I would have thought stuck in there with us, and weathered the storm.... often holding the umbrella or at least giving me a dry place to escape to every now and then. It has been one amazing lesson in relationships for me and many around me I must admit.

Which brings me to the point of this post. For a long time I felt utterly alone. Like no one could possibly understand how it felt to lose your beloved child into a neurological disorder. To see her developmental milestones drift away one by one... along with most of the early abilities she had to relate and communicate. To really share experiences with others. To be left with a puzzle that keeps getting harder and harder to solve... with no one who really "gets" what is like to live in such uncertainty and with such a seemingly severe disability. Sure, along the journey I have met a few mom's who have kids with special needs, all with varying degrees of severity, but even then, my kid always seemed the MOST impacted. The most difficult to figure out, and the one kid who couldn't seem to make progress. So even then, I felt alone.

But the truth is, I am not alone. Just because someone else hasn't walked in my shoes, does not mean that they can't find a way to relate to me. The even BIGGER truth I had to realize, is that I have to find a way to relate to them. If I am to be a true friend in return to those who have stuck by me through thick and thin, I have to figure out a way to overcome my own issues... and learn to celebrate their lives, their kids, their triumphs and their milestones.

Sure, some days it may be easier to stay home. To avoid the obvious differences between my significantly disabled child and your perfectly normal, or slightly ADHD, or vision impaired, or whatever child. But I am going to try to make it work... because you have tried so hard to make it work with us. It really doesn't matter that my kid can't do what your kid can do. She is a blessing. We adore her for all that she is. Right now. There are moments that are really hard for us, and I may need to skip a few events, but we will keep trying. Everybody will have "stuff"happen in their life that they didn't plan for. Didn't expect. Didn't ever dream they could handle. Our "stuff" just happens to be lifelong... and happening at this moment. So thank you for your patience. For your perseverance. And mostly, for your compassion. Because when it comes down to it... we are more alike than you may think. And when your storm comes, I may just be there to hold an umbrella for you.

My Dad sent me this today:

Heaven's Very Special Child
Copyright © 1981 by Edna Massimilla

A meeting was held quite far from Earth
It was time again for another birth,
Said the Angels to the Lord above-
This special child will need much love,
Her progress may be very slow,
Accomplishment she may not show,
And she'll require extra care,
From the folks she meets down there,
She may not run or laugh or play,
Her thoughts may seem quite far away,
So many times she will be labeled,
different, helpless and disabled,
So, let's be careful where she's sent,
We want her life to be content,
Please,Lord, find the parents who,
Will do a special job for You,
They will not realize right away
The leading role they are asked to play,
But with this child sent from above,
Comes stronger faith and richer love,
And soon they'll know the privilege given,
In caring for their gift from heaven,
Their precious charge, so meek and mild,
Is heaven's very special child.

Love.....Dad

Why not?

Even in the worst moments of fear and desperation in our journey over the last two years, I have always been able to pinpoint the positive. To share my overwhelmingly intense feelings of love and adoration towards my family and even my circumstances. Sure, there are several times a day when my heart beats a little bit faster, and my teeth clinch at the thoughts of the unknown... but we march on. What choice do we have? When life starts spinning out of our control, many people will turn to anger, sadness, resentment, pity, fear, and depression. All feelings I have certainly dabbled in over the course of this experience. The experience of having a sick and disabled child. My firstborn, and so by definition the center of my universe for quite a while. But how can we see through these feelings, overcome them, live in hope while at the same time accepting life as it is right now, and embrace it? I wish I had the answers, and for me, this blog has been the most therapeutic part of the journey, because it affords me the opportunity to sit down for a minute and reflect, then pause before moving on. So for that opportunity it has lended, I am forever grateful.

Now that Kaylin is 19 months old, and doing all of the things neuro typical children do, it is even more blatently obvious how severely impacted Avery is in every way you can imagine. I don't resent Kaylin, and in fact, I am over the moon elated that she is so healthy and "normal." It just paints a clearer picture, and again makes me so thankful for BOTH of my lovely daughters and the lessons they bestow on me daily... if not hourly.

But as I watch Kaylin desperately try to win her sister's attention (a virtually impossible task) and give her kisses and tell her she loves her.... (despite nothing in return) I must admit I have a few moments when I let the forbidden words "why us" eek in and steal my serenity for a moment.

Why do we have to watch our daughter's suffer because of Autism and mastocytosis? Why do we have to go broke looking for new treatments, medications, and alternative approaches? Why do I have to stay up at night on the internet for hours at a time doing research on how to help her, why do we spend all our free time driving to and from therapy, special school, and doctors appointments? Why can't we just do playdates, go shopping, bake cookies and read books? Why do we have to listen to screaming and crying in the middle of the night, and not have any clue as to how to help? Why? Why? Why?

Well, why not? Why not me? What makes me and my family so much better than everyone else that we wouldn't have hardships, tearful nights, and gripping anxiety? I am as equipped as any, if not more so given my education and training. But sometimes, just sometimes, I find it hard to be grateful. But it only takes a moment. A brief second to snap me back to optimism. And even when I am not looking for it, I can see the beauty in a stolen glance, and in an excited smile when I lay in bed with Avery or pick her up from school.

So I remember. I remember that within her diseased body and damaged brain there is a beautiful, loving, sweet, happy little girl. My little girl, my first born, who I would walk through fire for. I remember that through this circumstance, I am stronger, better, more driven, have more purpose, and more joy in the simple things than I EVER would have been able to without all of this. So then I am thankful. Thankful for all of it. I am blessed to be Avery and Kaylin's mom. I have so much to be grateful for, and I learn more about the countless reasons every single day.