Thursday, October 30, 2014

Sometimes reality bites

There have been so many unpleasant realities hitting us lately, and it's just a constant reminder that although Avery has been physically healthy for over a year now, the day-to-day continues to challenge us.  Very sweet people often tell me, "I don't know how you do this, I'd be a wreck."  But it's just something that we do, without thinking, because we love our daughter and this is the set of circumstances we have.  It's when I do think about it, on sleepless nights, or during moments in the doctor's office, that it gets hard to bear.  Being hit with many realities in a short time, and having time to "think" is trouble, so I often try to focus on the current day, keep moving forward and not get sucked into the trap of thinking of the "what-if's" and the "what-that-other-kid-is-doing."  Comparison is my mind's worst enemy, and truly one of the biggest no-no's of being a parent.  But we all do it.

We had Avery's annual IEP (individualized education plan) meeting at school a few weeks ago, and if you haven't had the pleasure of participating in one of these, let me tell you, they are quite overwhelming.  A team of your child's teachers and therapists, which in Avery's case, consists of around 8 people, get together to discuss their progress, shortcomings and goals.  We are so lucky to have an exceptional team helping Avery.  So exceptional, that I'm already in tears thinking of the day we have to leave Addams ECSE.  But it doesn't matter how wonderful the team is, it is never easy to hear some of the things they have to say.  Avery has come so far since last year at this time, but her struggles are ongoing and these meetings remind me that every single day counts in helping her progress.  I'm going to break the parenting rules for a minute and "compare" my child to another child.  I've been around many four-year-olds, and Avery is nowhere near their level in terms of comprehension, social skills and communication.  I'm not saying this because I'm disappointed in her, I'm saying it because it's a reality, and one that many people often do not see outright because Avery isn't always obviously "different-looking."  But in most ways, she operates at the same level as a two-year-old.  And while we can remind ourselves daily that this is a blessing, and Avery could be in a much worse place, it's still difficult to see a typical 4-year-old girl, speaking to her mom in complex sentences, understanding concepts with no problem, playing house with her friends, and knowing that my 4-year-old cannot do these things yet.  Once your child is in a group of their peers at school, it's almost impossible not to measure their progress against the next kid.  For example, in addition to the IEP meeting, we were asked several questions and given forms to fill out about Avery.  Here are some of the questions:

"Can your child jump over a number of objects in their path without stopping?"  No.

"Does your child take off their shirt/shoes/pants without help?"  No.

"Does your child look for a toy that is covered at least 2 feet away?"  No.

"Does your child show awareness of how others feel by saying things like "he is mad," "you are cranky"?  No.

"Does your child like to play alongside other children instead of playing alone?"  No.

"When an adult points to something, does your child look where the adult pointed?"  No.

And on and on... We answered, "no" more than "yes."  It broke my heart.  I realize this is a rigid set of questions to evaluate the typical development of a child, but I also see that Lucy is on track for all the questions in her range and even a little beyond.  The things that Avery deals with physically have incurred serious delays in comprehension, motor skills and social-emotional progress.  And it's so much more apparent and in-our-faces now that Lucy is growing and doing things with no effort.  It is definitely okay that Avery is taking longer to learn and do things, and okay that we have to put forth more effort to help her, but every so often, we stop and think about this reality and get a little sad.  And that's okay too.  So often we hear, "she's doing so well," and that makes us feel great, but many people don't see how difficult and different it really is.  There are constant therapies, doctor visits and work at home going into her progress.  Avery still needs assistance on basically every task that she completes throughout the day: dressing, going to the potty, walking down the stairs, using a spoon and fork, putting on her shoes, finding toys that she wants, and communicating her needs.  And I know a lot of 4-year-olds who do all of those things on their own.  It doesn't bother me until I hear about it, or am forced to evaluate her current level.  And I'm working on not letting that bother me, but it's easier said than done.

The other big reality bothering me lately is one that's difficult to explain.  When people comment on Lucy's gorgeous, big eyes, I am proud and grateful, but I'm also very, very sad.  Avery will never have typically "beautiful" eyes.  She has eyes that we treasure, love and think are beautiful because they are hers (and we know what they've been through), but to the stranger on the street, or to a boy that she has a crush on someday, they may not be considered "beautiful."  And someday, she's going to hear her sister get compliments and feel that sadness that we feel for her now.  (Side note:  please never feel bad to compliment Lucy's eyes - that is not my intention!)
Similarly, when we're out running errands, and a stranger asks how old she is, and then asks her questions like, "what are you being for Halloween?" and she just stares off into space, it's hard to have to explain why.  The expectation is that she would answer a simple question like that.  I'm just happy she can answer, "how are you?"  And the newest button for me, is the constant comments about her small size.  When she was younger, it wasn't so hard, but at 4.5, it seems much more apparent.  The people in our close circle - family, friends, Avery's doctors and teachers, all know why Avery is small, and their talking about it is never malicious.  But from everyone else, this is a sensitive subject.  I think I can speak for every parent, special needs or not, when I say that no one wants to hear the comment; "she's so small!!"  You wouldn't tell someone that their child is "so fat," so why would you tell them the opposite?  I'm not the type of mom to stop and explain to a total stranger why Avery is so small, so I just have to grit my teeth, say, "yep, she is!" and walk away.  All.the.time.  Then there's the super fun comments (which usually come from older men in Meijer); "you should start feeding that kid more!"  How many times have I wanted to go off on someone in the check-out lane?  Too many to count.  
We're not totally sure of the cause of Avery's small size, but are confident it's related to her medical issues.  People born with Peter's Anomaly are often short statured, so that's a possibility.  She also didn't eat properly for the first four months of her life, which is a critical time for gaining weight, so that could carry on for the rest of her life.  Regardless, we're on it.  We're having her tested for all kinds of things, which included having her poked and 6 tubes of blood drawn, and exposed to yet another x-ray to find out her bone age.  We put these off as long as possible, but don't see the issue getting better, and need to rule out something serious.  She eats very well, and (knock on wood), hasn't been sick this year, so we know she's healthy overall.  So to that stranger on the street who wants to point out the obvious and tell me my daughter is "so tiny," please replace that with "so cute."  I know you don't mean harm, but that comment hurts.

Regardless of what others say, and what other kids are doing, our day-to-day work will continue, and I will continue to work on my strength as her mom.  Because she needs me to be her rock, and to teach her to take everyone's comments in stride.  We are working hard on Avery's tolerance of tasks that she doesn't like to do, like dressing herself, using her fork, coloring with crayons, etc. because we know she can do anything with a lot of practice.  The potty training is progressing, slowly, but surely.  There are good and bad days, but we're leaps and bounds from the summer in that department.  We are teaching her so much that I often want to give her breaks, and do things for her, which is okay once and awhile, but not as often as I have been.  It's hard to see your child struggle with anything, even something as simple as using a fork, but I am learning that some struggling is good.  I'm also learning patience.  A quality that I've never been good at, but a critical one to have.  We recently relived Avery's journey for our interview with Children's Hospital (that special is airing on WDIV-4 in Detroit immediately following the Thanksgiving Day parade, and I will share online after as well).  It is hard to resurface the pain of events we have endured, but it's a reminder of what we've learned and how far we've come.  I was a fragile, sensitive, thin-skinned mom four years ago, but now, I'm much tougher and more experienced, but I'll never be immune to all of the pain.
As always, we appreciate everyone's thoughts, prayers and support.  Especially the support of the other special needs parents who walk in our shoes and cry the same tears.  We cannot do this without you!

Wednesday, October 1, 2014

Auntie Kathy

One thing that we've been sure of throughout our journey with Avery is that we have an amazing support system of family and friends helping us through it.  We are so grateful for this and never take it for granted.
About two weeks ago, we got a phone call from one of our biggest supporters, John's sister, Kathy, that completely took us by surprise.  She was calling to tell us that she has breast cancer.  I still can't believe it, and every time we've talked since then, I'm thinking the whole time, "are we really having this conversation?!"  Hearing Kathy say things like "chemo," and "mastectomy" are too bizarre a concept, and after all I've been through in my own life, I didn't think anything could shock me, but was wrong.  You truly never think cancer will strike in your own family, but then it does, and it turns everything upside down.  The real shock was the timing of this awful news.  Exactly one month before her wedding day.  I can't help but think (as I know she is), "it's just not fair."  I know these words ran through my head many a time, so I expect she's thinking them too, as she's entitled to.  There is never a good time to find out you have cancer, but Kathy has waited a long time to meet her Prince Charming, and has spent this whole year planning a beautiful event to celebrate it, so being blindsided with this news RIGHT NOW really sucks.  Thoughts of seating charts, wedding hair and make-up have shifted to thoughts of surgery and scars and cancer treatment.  These should be the happiest days of her life, and I'm sorry that some of that joy has been taken from her, as she inevitably is scared for what's ahead of her.  She's walked the Komen 3-Day for six years, raising money and awareness for a cancer she never imagined she'd one day get.  It really isn't fair.  But in giving it more thought, I realize she now has a support system from all those walks, and she has the love and support of her fiancĂ© to get her through this, and no matter when she found it out, it would still really suck.  While my heart breaks for her and what I can only imagine she's feeling, I know she will face this bravely and beat cancer's butt!
 
Kathy is no stranger to devastating health news being in our family - her dad has been through several surgeries and health scares, and of course she's been by our side with Avery's issues.  But this is her first personal battle, and she knows it's not going to be easy.  We, her family, will be behind her all the way, just as she's been for us.  I've been lucky enough to get very close with Kathy over the years; she's someone I confide in, and visa versa, she was in my wedding, as I will be in hers.  We have been with each other through many big events, both happy and sad, and like every good family, we support each other.  
This news has me reflecting back to our early days with Avery, and how Kathy was there for so many of the big, awful, scary moments.  She was there for Avery's first surgery to remove her brain cyst at 5 weeks old.  Kathy came up with my in-laws and she sat with us in that waiting room and distracted me with any and every subject that wasn't brain surgery.  She was there the day our pediatrician told me to take Avery into the ER for a spinal tap for meningitis.  She had literally just arrived at our door step to help us out for a few days, and we left her with our dog while we took Avery to the hospital.  And I will never forget that she was the only person in the room with me, giving me a hug when I asked the doctor if Avery would pull through that infection, and he said, "I don't know."  Since those early days, she's been one of our biggest supporters, spreading awareness about Avery's disorders and helping us with fundraising for Hydrocephalus Association.  If she can't be here in person, she sends encouraging notes and texts, and always checks in on updates.  If you are ever in a bad situation, no matter how little or well Kathy knows you, she will be there for you.  She's just that kind of person.  She's always been one of the most thoughtful, generous and caring people I have known, and I know that she will see that all come back to her now that she is the one who needs it.
So this entry is to let her know how much she is loved, appreciated and thought of.  Her support over the years has not gone unnoticed, and although it's sad that it takes news like this to really bring to light how much we appreciate someone, it's a good reminder to cherish our loved ones.  We are so sorry that you have to battle breast cancer, and although we're not sure what your journey will be like, we are sure of the fact that we are here to support you through it.  We will be sending out prayers and happy thoughts as you begin your battle tomorrow, and we will be celebrating huge with you in 18 days when you get married!  We love you, Kathy/Auntie Kathy!!
If you would like to follow Kathy's battle with breast cancer, please visit her page at: www.caringbridge.org/visit/kathysfight3