A busy time of year.

It has been quite a while since I have blogged, it has just been so busy over here. I'm fairly certain I've fallen asleep each night when the kids are in bed. In fact, I'm pretty sure Kennedy outlasts me on most nights. We just celebrated Molly's 6th birthday and are getting ready to celebrate Kennedy's 3rd birthday. Thanksgiving was celebrated and soon Christmas will be too. The girls are at such wonderful ages for these exciting times.

Molly is still battling her unknown and undiagnosed issue. Most days are spent on the couch, although we've been pushing her to go to school. I do get called to pick her up more often then I'd hope for, but her para is so good at recognizing the signs of Molly going down - that I don't argue at all. I would rather Molly fall apart and meltdown at home. She seems to get very zoney, pale, blows repetitive spit bubbles, and can't focus at all. She'll say she doesn't feel good or that she needs to go to the hospital. The last comment is most disconcerting because she is so insistent that she needs to go. She actually told me she needed to go for a week to rest. She's just so very tired. Today she went to school and made it all day, but when I picked her up I could see the dark circles under eyes and the zoney look on her face. We came home, and she couldn't climb the stairs without help, then I had to physically change her pants for her into "comfy pants". She then curled up on the couch with a drink and a small snack. There my pale little girl stayed until I coaxed her off the couch for dinner and there she returned as soon as dinner was over. She slept 11.5 hours last night. It's all very frustrating. Right now the debate seems to be whether it's and actual physical illness or if it's more behavioral/developmental. I've seen the symptoms before although never this prolonged or severe and they always mean something is physically wrong. I guess time will tell, but I wish I new how to better help her at this point - I feel helpless.

Kennedy, however, is doing so well. She went to the dentist for the first time today and put up minimal fuss - they were very impressed with her and able to clean all her teeth. She was all smiles and greetings and hugs at her birthday party and even helped to greet unfamiliar guests in a relatively unfamiliar environment for Thanksgiving. She was quite impressive. She still has her peer issues and some major sensory and motor development issues, but she has come SO FAR in the last year. Birth to 3 has been a phenomenal help in this. Unfortunately Kennedy has had a lingering respiratory virus for the last month, just as she seems to get better the nose and cough start up again. This is a kid who's never really been sick, it's kind of weird to be worrying about her with illnesses. She seems to go croupy and get the stridor type breathing very easily. She also has a continuous and progressive rash on her face, arms and legs - always has had it. I guess it's a good thing both girls have well visits with our beloved pediatrician next week!

And because we didn't feel like our lives were busy enough, we are expecting our 3rd baby at the end of May. We decided at the end of the summer, that one more child would just complete our family and that if it was meant to be it would happen. Well it happened very quickly and we couldn't be more excited! It does amaze me how easy it is to forget how difficult pregnancy can be. I am not one of those lucky women who breeze through with few symptoms. I'm wiped out all the time, spent the first trimester nauseous and now that I'm in the second trimester I'm sick like every morning (gross right?). There are more things I could complain about, but all I have to do is remember the day my girls were born. Molly's rather traumatic but nevertheless remarkable birth and the amazing day Kennedy was born. Seeing this beautiful baby girl for the first time and just feeling instantly connected. Perhaps my pregnancies prepare me for the challenges my kids will throw at me, or perhaps it's payback ( my Mom was sick with all three of us too). Whatever it is, I know when this one is born, it will once again be a miracle.

So, it's a busy time of year for sure. There is plenty of shopping, cooking, driving and cleaning to do. But there are also all these special moments to enjoy. Kennedy's first day of school is next week, we will go visit Santa soon, and the girls each spent time decorating their own small trees in their rooms. We will buy presents for the less fortunate and make gifts for those we love. We will rejoice in all that we have and say thank you that we are so blessed each day. We will also enjoy the light in the girls' eyes as their Christmas wishes are fulfilled and we will plan for growing family with excitement and anticipation.

This really is the most wonderful time of the year!

detective mommy on the case

Do you know that gut-wrenching feeling when you know that something is wrong, but you just don't know what it is? I've even heard myself say, if only she had a fever then it would make sense. Looking at your child, and knowing that she just doesn't look right, but having no acute symptoms to fall back on, seems to be one of the hallmarks of my Molly.

I took her to the doctor on Wednesday, and I am going to praise him for a moment (not just because he might read this) because he knows me and Molly well enough to know that we're not making it up - there really is something going on. She had vague symptoms. Swollen glands, fatigue, paleness, and complaints of a belly ache with increased (but not febrile) temperatures. She's eating, but not like she normally does. She's having multiple zone-outs a day, whether these are all seizures or not, we aren't sure and she's internalizing (talking to herself and running in repeated patterns) much more frequently then normal. Her doctor spent so much time with her, and really checked her over. He did see some sores on her throat, but her strep test was negative. He gave me the best advice he could: watch her and wait, keep her hydrated and comfortable, and let her rest - check back in on Monday if she's worse.

Well, here it is Sunday. She has asked me to take her to the hospital today. In one moment she's lying down, moaning and saying her belly hurts and pressing on the lower right area. In the next moment, she's doing her stimming thing. Overall though, she's been very lethargic today. Lying on the couch, on the floor, in her bed, and in my lap. She's not sleeping, but she has dark circles under her eyes and she is pale as snow. The glands in her neck are swollen again this evening and the belly pain seems to come and go throughout the day. She's still eating and her temperature has taken a dip. She's still zoning out, A LOT. It looks like clusters of absence seizures, but it's so hard to tell. Chris and I really quite concerned about her, but we don't want to over-react, or under-react - it's a tough situation to be in.

As it stands right now, I think we're going to keep her home from school tomorrow and take her back to the doctors. Something is just not right. It's very hard with Molly because she has an incredibly high threshold for pain, and very rarely complains about things hurting even when you can tell they do. It's horrible to even say, but because she's been sick so much, I'm not even sure she knows the difference between feeling lousy and healthy. She climbed in my lap today, and just let out a big sigh and asked for a hug. I said, you just don't feel good do you baby? And she replied, no mommy I don't....

I guess we'll see, but I can tell you - don't google the symptoms she's experiencing, leave it to the pros, because the internet has a lot of scary information out there for her very vague symptoms! Tonight will be a night of watching and seeing and waiting and comforting. I'll give her a hug and just hold her - it's the only medicine I can dispense at this point!

Umbrellas

Umbrellas are a perfectly innocent object for most kids. My girls, like all other kids, love to burst out their brand new character designed umbrellas when the rain is pouring. Heck, Kennedy likes to pull out the umbrella any time any day, rain or shine. It's been raining for what feels like days or weeks, and it's too warm for jackets.

I dread the days of rain and umbrellas. My kids are difficult enough to wrangle with bright sunny weather. Put umbrellas in their hands and the wrangling becomes so much harder. First there is little Kennedy whose umbrella hits me in the knees and prevents me from reaching a hand to hold. Not holding Kennedy's hand is a dangerous prospect, especially when parking lots and buses are involved! I'm sitting here, hoping the rain is going to stop before it's time to pick Molly up from school.

How can something as simple as umbrellas make the day so much harder? I see all these other kids walking around, holding their character umbrellas, perfectly above their heads - walking carefully and then I see my crazy self desperately trying to maintain safety for my girls and know they aren't going to run away from me!

Oh well, there are definitely worse things - I just wish it would stop raining!

Loss, grief and growing up

Perhaps I am so reflective because of today's date. It's 9/11. It's the 10 year anniversary of an event that shook the core of our nation. It's a day I will never forget, because it completely burst through the shell of safety I had built around myself and introduced me to real pain and loss. I was fortunate that I didn't lose anybody directly in the 9/11 attacks, but I carry in my heart the loss of the nation. Listening to Amazing Grace this morning during one of the tributes brought tears to my eyes and then streaming down my face. The song has been sung time and time again at moments when I am saying a final goodbye to those I love, and each time I hear it - I feel all those loved ones surrounding me and the emotions are just overwhelming.

I was 21 years old the day the towers fell. It's only been 10 years since I was so abruptly thrust into adulthood, but it truly feels like a lifetime. Lately, it feels like every time I turn around somebody is suffering from the loss of a loved one. Whether it be a grandparent who lived a full life, but whose loss and absence is so distinctly felt or if it's a child whose time has been dramatically cut short - it's so hard to make sense of the loss.

With my grandmothers both recently passing - I can make some sense of it. They both lived into their 80s, had children, grand-children, and great-grand-children. They saw a world war, multiple natural disasters, and technology changes beyond their greatest imaginations. They had so much love and so many experiences, that although I feel their absence daily - I know they are in my heart and I have learned from the lives they lead.

Then we lost our dear friends in a tragic motor cycle accident. A young couple who had not quite reached middle age, who had banked on living the remainder of their life together playing with their grandchild and going on adventures. To justify their death seems insensitive. Not a day goes by where we don't reference them or their memory. We lost best friends, their children lost both of their parents and they never did get to see the beautiful face of their newest grandson. But, in spite of this tragic loss the goodness of their lives is not forgotten. The spirit of kindness and gratitude they brought to everyone around them lives on in us all. It has been over a year, and although the grieving process continues daily so does life. Their family is strong, and you can feel the love radiating when they are all together. We miss them, but they too live in our hearts.

And now a more difficult subject for me to think of. The loss of a child, someone so young and so vulnerable. A life which the parents had planned out in great detail. Whether it be the baseball games or the dance recitals, the proms, the graduations, all of the first experiences - it gets dramatically taken away, it seems so unfair and we are all left floundering for the right words of comfort and the right expressions of love.

A little boy passed away last week after he wandered out the back door of his house and drowned in a neighbors swimming pool. He was four years old. Immediately people seem to justify his death by blaming the parents for their negligence - but then you hear the full story. The sweet little boy had Dravet syndrome and although he was four years old physically, mentally he was 18 months old. Imagine the impulsive behaviors of an infant in the body of a preschooler - it's nearly impossible to keep an eye on them every second of every day. This is especially true when you are the primary care provider working to pay the expenses of a child with special needs and you hire a babysitter for the day. And then all the rest of the pieces of the 1 in a million chances align and tragedy strikes. What amazes me about this story is that the mother, through her grief, has said she believes that her baby is in heaven with his grandfather who passed away 3 days later and that he is taken care of. She is committed to helping researches find a way to obliterate this terrible disease.

Last night I visited friends and  their baby in the hospital. The baby has been there for almost a month. She went in originally to get a feeding tube, but has steadily declined since and is now having extreme respiratory problems. She has SMA type 1, the prognosis is not good, but she was doing so well - everyone was optimistic. As I sat with my friends, we talked about their baby and about what they are feeling. I can see the struggle in their faces. They so badly want to hope for a miracle for their beautiful little girl and they need that hope - but they are also facing the reality of the situation. Regardless of how things turn out, their lives have changed forever. The dreams they had for her have changed, and they now dream of her smiling again tomorrow. They too have found comfort in raising awareness of a terrible syndrome and of trying to find away to prevent this from happening to another baby and another family.

The stages of grief are different for us all. Our struggles are different too. We are each given a path in life to walk, and the people who come into our lives are there to enhance our experiences. To love and open your heart to someone does sometimes mean getting hurt - but it also means to know love. Growing up seems to mean that these feelings of love and loss and grief intensify. I have to constantly remind myself that it is okay to feel them. It is okay to be happy and it is okay to be sad. It is okay to look forward to tomorrow and to rejoice in the gifts of today.

I know I haven't been dealt an easy deck in life, but I am also beginning to see that the experiences I've had within my own life and especially with my children - have made me the person that I am. I want to make a difference. I want to help families so they don't have to go through the pain of losing a child. I want to help families to celebrate the lives of the children they do have. I want to inspire my own children to be kind and loving people who will make a difference in this world. Each of our lives has a path, but we can choose whether we embrace our destiny or ignore it. Since I've embraced what I've been given, I've found the joy in the little things. This is not to say that when I lose someone I love and care about I'm not sad- I am, but I will also strive to be better and do more in their memory, with their love in my heart.

Perhaps today is just stirring up a lot of emotions, or perhaps it's the path I've been walking lately - but I'm feeling things so intensely. In church Friday night, I was praying for my friend's baby - and my skin started to buzz. I've gotten goosebumps before, but never this feeling. I felt like I was connected, like God was listening. I asked him to help the family and make sure that baby was comfortable and to give them whatever they needed and to in turn show me how I could best be there for them too. 

Growing up is not easy, it's a challenge. Life is certainly a blessed gift, and I will not take any of the gifts I have for granted. I will keep striving to find the good in situations, or as a dear friend said - "to find the joy, as it is most difficult to do when finding the negative is so much easier".

Back to Routine

Thank Goodness school has started and was only postponed by one day due to the influences of Irene. We were very lucky and we are extremely thankful for that. We didn't lose power, and all the old trees in our yard remained upright and rooted! I cannot give thanks enough for the blessings and the devastation we were spared that so many others faced.

So, school started for Miss Molly on Thursday 9/1. Her very first day of the first grade. We received a call at dinner time on Wednesday night from the principal letting us know many things had shifted over the past few weeks. We learned that Molly's beloved para, who had been moved to another school due to union/political bologna, would be returned to my daughter's side. We were thrilled. As Molly's parents, it takes every ounce of trust and faith we have to drop her off at school each day. It is hard enough to pick up on some of the subtleties of Molly's seizures and issues when you are one-on-one, never mind when you are in a class of 27 children. We thought we faced the year with nobody who knew our daughter and the complex make-up of her myriad of issues. Then we found out our para, who does know Molly and does understand that everything is not black and white - had been returned to her side. That prayer was answered in such a direct manner, it truly must be the perfect match to help Molly's education!

Molly seems to love school. She is smiling as we walk in the morning. She proudly holds her brand new "Hello Kitty" lunch box and stands in line to enter the building. She is doing everything right and we couldn't be prouder. The first day went well, she was definitely tired - but it's a long day and all the kids looked wiped out! The second day went pretty well too, from what I can gather. I often feel like I'm peering through a foggy window trying to make sense of the day's events. The usual answer is "I liked snack and lunch" or "we had gym".

Yesterday, when Molly came home - something was off. She was very zoney and quite "out of it". It was hard to tell at first if she was just tired or if something was coming. She sat down to do her homework and her whole body seemed to freeze at the bottom of the "M" in her name. She had a blank look on her face and was just not there - a seizure. It was over pretty quickly and then happened only once more. However, from that moment on for the next hour - her complexion was very pale, almost grey and her lips were so blanched they looked gray too. Her hands and her feet were as cold as ice but her body temperature was 99. She was talking and playing Wii but was unfocused and her eyes kept zoning out. Needless to say we were on edge. After about an hour, her color seemed to return a little and her hands and feet were now just clammy. These episodes freak me out, because we don't know what they are. I've learned not to scoop her up to the doctor because it usually ends before we can get there. She made it through the rest of the night and slept for about 10 hours - but she's still looking wiped out today.

I did find out that school was very overstimulating (at least to Molly) yesterday. A full, loud lunch room; 120 kids on the playground; art class and then gym class with 50 kids; and a whole bunch of new things to look at. I wonder if her brain just couldn't process it all? And then I wonder what I should do next. Her epilepsy doctor returns on the 7th and I think that is where I will start.

As scary as some of these things are, she's here today - playing dress-up with Kennedy and planning a family dinner that includes Unkl Tubz. She gave me a hug and a smile - and I'll take that for sure! I have to remember that this is a new routine. Once we get into it - I'm hoping things will calm down and be smoother - or, perhaps, we're just starting a new chapter in Molly's life. Time will tell!

It's hard to believe she's already in first grade, let alone that she'll be 6 years old in just a few months.

UGH - IGNORANCE!!

So I follow Parents Magazine and their facebook posts. They posted a link to a recent article about the rates of autism in second children if the older child has an autism spectrum disorder. Then people are able to comment below. It's amazing to me the ignorance of people. Here are just a few of the comments.

1. I think Autism, ADD and all the other "disorders" are over diagnosed, yes I believe some kids suffer from them, but I believe that some kids just need a good kick in the ass...some discipline, manners ect. When I was in school there was not a single person with ADD or Autism, now my kids are in school, every other kid got some disorder...and there is a medicine for it...and diet does play a role, what people think is Autism and ADD could be a food allergy.

2. Completely agree with u Dewi! I think a lot, NOT ALL, diagnosis of ADD, autism, etc. is just a cop-out for parents that don't wanna be parents. Absolutely its much easier to parent a medicated child than to step up and parent a rambunxious one. 

3.When I think of the Autism I think of the guy that said vaccines caused it and parents believed him..and we know how that story ends.. 

and my favorite:
4.  Where was ADD 20 years ago?  

1, 2 and 4 were all written by the same person.

I felt my blood boil. It is hard enough to wrap your head around your child being on the Autism Spectrum, then you have to read things from people like this who think they know what they are talking about - but realistically speaking, they are clearly displaying their ignorance for all of facebook to read. I couldn't help myself, I had to respond.


Here is what I wrote:

Perhaps we should consider the amount of research that has been done in recent years about Autism Spectrum Disorders and ADHD. I think that because we know so much more about these disorders doctors are able to better diagnose children. We've been told there is most likely a genetic link in our girls. Autism runs on a spectrum, and to be diagnosed, children go through rather lengthy evaluations. My 5 year old has a PDD diagnosis, because she meets the criteria of an ASD. My 2 year old has also received the diagnosis - but both girls present in a very different manner. Neither is what the movies have made autism out to be. They are both sweet little girls who need extra help navigating the world around them. My older daughter also has an ADHD diagnosis as well as seizures and developmental coordination disorder. I participate in their therapies, work with the school system to provide them an excellent education and try every single day to help them. It's very disheartening to read the accusations of people who clearly don't parent these special children. It's also important to consider the legalities surrounding our school systems and mainstreaming. Perhaps there were no children in your class 20 years ago because they were isolated, and the kids with subtle symptoms were just labeled as trouble-makers or distracted or lazy.

What do you think, should I have just bitten my tongue and let them live in their blissful ignorance? I couldn't help myself, and now I will spend some time fretting if I was polite enough while stating the truth. I am no expert, but I would never pass judgement on the parents of a child with a diagnosis - not when we know the genetic nature of our girls. Are there bad parents out there - of course! I've seen neglect, and reinforcement of bad behaviors more time then not - but what about the rest of us who really try our best day in a day out? I know I'm preaching to the choir here - but I had to put it out there!

Sighing a big old sigh and shaking my head.

here is the link for the article: http://www.parents.com/blogs/red-hot-parenting/2011/08/15/health/rates-of-autism-spectrum-disorder-in-younger-siblings-higher-than-previously-thought-take-home-messages-for-parents/

and here is the link for the fb discussion: http://www.facebook.com/parentsmagazine/posts/260627167281791?notif_t=like

Strength

Last night I went to visit my dear friend at her baby's bedside in the hospital. Her beautiful six-month old baby has recently been diagnosed with Type I SMA (Spinal Muscular Atrophy). The little baby, we'll call her "E", is in the hospital because despite everything her parents and doctors have tried she is not gaining weight. It's too hard for her to suck and the effort seems to burn more calories then she takes in, so she has to get a G-Tube (feeding tube - through the stomach). Unfortunately she is too weak for the invasive procedure at the moment, so the doctor's have had put in an NG tube (through her nose) to see if she can tolerate these feedings and help to get her strength up.

Little E, is so very small, weighing in at just over 10 pounds at 6 months old. She cannot do anything for herself, but boy can she smile. Somehow E seems to sense that her parents and family and all those that love her are hurting and worried. Every time little E goes through a procedure, whether it's an IV or invasive tests, she keeps that beautiful smile on her face. Somehow this little angel baby is emitting strength and love through her smile. It's an amazing site to behold.

My friend and I were talking last night and she was updating me on the newest things they've learned of E's condition and prognosis. No parent ever wants to hear the things they are being told and warned about. I asked my friend if she'd broken down yet, and she said in bits and pieces. Then she made a comment that has stuck with me, she said: "I don't know where I'm getting this strength or where I'm finding it". I considered this. My initial response was: because you have to, because you love her.

I still believe that. In my mind strength is love. We all have our days of tears and pity, but we summon the strength to be there for our children because they are there for us and because we love them. Although the trials that Molly endures are not at the severity of baby E, I see this same sort of strength everyday. Molly seems to have intuitively realized how hard it is to see her helpless in the hospital or suffering from an illness and she rarely blinks an eye when it's time for a doctor visit or a procedure. In fact, even at her sickest, she fools caregivers because she's smiling despite how lousy she feels. She is the ultimate patient and displays unattainable strength. From her strength I gain the strength to help her through it all.

I also firmly believe that each of us has a purpose in our lives, although not everyone opens themselves up to accept their path. Finding strength when Molly first started having issues was very difficult. I was so distraught that my daughter would be different, that she would not be like other kids her age, that she may not get married or go to college, that we may lose her - I couldn't see past that. When I came to accept that those things might be true but realized there was so much more to learn from Molly - I felt my strength grow. And although my friend may not be in this place yet (it took me years) I've seen her strength evolve as she's come to realize and started to accept that baby E's path is going to be very different from what she expected.

None of us can predict the future, nor can we predict tomorrow. Some of us can live in blissful ignorance of the day to day challenges of caring for and loving a medically fragile and/or developmentally challenged child and some of us have to embrace those same things as a part of our world. While you may dream of your daughter going to an Ivy League College, my dreams are smaller. I dream of my daughter waking up happy tomorrow. Part of my strength comes in every tomorrow that I get with my beautiful girls.

I should note I also believe in the power of prayer. There are so many things that could get us down. So many people are hurting out there both physically and emotionally. I pray throughout the day for those people I  know, that they may have the strength to deal with those things they cannot control and to make the right choices for the things that they can. If you have a moment, please consider adding Baby E to your prayers. Thank you!

back to reality

Vacation is over. We arrived back home from my family's cottage on Sunday and it has been a week fraught with transition nightmares! Poor Kennedy is not happy that she has to share Mommy for the next few weeks, since Molly is no longer in summer school and first grade doesn't start until August 31st. Both girls loved being on vacation and having Mommy, Daddy, Goomie, Poppy, The Aunties, and our family friends at their beck and call. The girls seriously flourished in all the attention and we had an amazing vacation!

We did so many amazing things with the girls this year, things we couldn't really do when they were babies. Yes, Kennedy got stung by a Jellyfish and Molly wrench her hip so bad we had to have x-rays when we came back - but those were just minor setbacks to a truly wonderful vacation. It's amazing. We didn't do anything flashy this year. There were no day trips, no carousels, not even a dinner out - but it didn't matter, I would classify this vacation as one of our Top 10! Of course, Molly still asks daily for a return trip to Disney World - and they both love the outings - but we didn't need it. We are seriously trying to conserve our finances. We just keep getting hit with unexpected expenses from all around, mostly medical in nature, unfortunately. So we made the decision to keep this vacation low-key and just about being together as a family.

We swam, we fished, we boated, we built sand castles, we collected sea shells, we tried crabbing, Molly won about 25 games combined of Chutes and Ladders and Candyland (and she didn't cheat!). We cooked real, homemade meals which we sat together as a family and had big family dinners. The girls shared a room and did get to watch part of  a DVD each night before bed. They also had limited Ipad time, especially when the grown-ups were spent or a meal needed prepping. However, they played almost continuously. They "read" stories, they colored pictures, they truly basked in the attention of their loving family.

Waiting for Poppy and the boat

Taking a walk

Dance party!

Chilling on Mommy & Daddy's Bed

Princess Kennedy

Family Cottage

Sisterly Love

Fishing with Poppy

Family Picture at the Pirate Party

Trying our hand at crabbing

Like I said, it was a great vacation, and then we came home. Daddy went back to work on Monday. Goomie and Poppy stayed on the island. The Aunties and the rest of the extended family went back to their day to day lives. And I found myself at home on Monday morning with two sleep deprived little girls, who were not adjusting to the one person cheering section when they had 5 or more all week. I also had one little trooper who couldn't walk and needed to go to the doctors and then for x-rays... It's been an intense week.

We've had therapies almost every day, and excluding an amazing and unusual speech session, all have noticed how rigid Kennedy has become. She's pretty much refusing to walk, calling out "cheerio" which seems to translate to "carry me". Molly's been slightly better in the transition, but has been sobbing at the drop of a hat and even decided to wake up at 2:45am on Wednesday - leaving me baffled as to what's going on with these two!

With all this going on, I decided we needed a break. So, after nap yesterday I packed the 2 kids in the car with a back pack of necessities and headed to Clinton to see my folks. The girls were excited to go back to the cottage and go on the boat and to see their beloved Goomie and Poppy. They were fantastic for the whole ride and helpful when we stopped at the Pie/Corn stand for dinner accompaniments. They had a great time and we got back in the car at about 7:30pm to head home. We were less then a mile from our exit when I heard and felt the tell-tale bump-a-thump-a of a flat tire. The girls don't like traffic and they were both a little freaked out. I was too, but kept my calm, called roadside and settled in for the wait. Thank goodness for the DVD player and the DVDs I had left in the car. The girls had a few little moments of terror, impatience, sleepiness and worry - but overall they were good. Molly managed to lose her 2nd tooth, but handled it like a champ. She also managed to get her arm stuck in her carseat??? We got home about 10:15 and both girls went right to bed.

So here we are - Friday morning. Daddy left early to take the car to the dealership and walk to the train station to get to work. The girls and I are meeting friends and the fabulous Tammy at the playground for a therapy session and then back for nap time. The weather is incredible and I'm hoping that after a week fraught with transition nightmares - we are back into our new normal, at least until school starts and normal takes on a new look!

I don't know how you do it

Let me preface this post by saying that this is not brought on by anybody in my life or in my recent encounters. So, please do not re-examine every interaction you've had with me in the course of your relationship with me. This post comes from the discussions I have been following on various support forums as well as on Facebook posts from the Children's Hospital Boston and Parents Magazine. The posts have centered around the top things parents with special needs or chronically ill children don't want you to say.

Now, we all have to admit there are insensitive and uncaring people out there. There are also people who don't think of the impact of their words before they leave their mouths. They are curious, or they have no filter - I accept that these people exist. I once had a mom who said to me, after working with Molly's class, "Your daughter absolutely needs a 1 on 1 aid, she can't even hold a crayon." Now, I knew this, and I had probably shared this sentiment with friends in a different way. But this mother, with no expertise, just decided to shout it out across a crowd of parents. I have a good friend who still wants to jump her and it happened over a year ago! Insensitivity is one thing, but caring and not knowing how to express it, is clearly another.

I was really put off by the discussions that resulted from these posts. Some of these parents of special needs kids were down right offended by someone saying "I don't know how you do it" or "I don't think I could do it if I were in your shoes". Now, I will admit, I was not a member of the audience to witness the tone of these comments, but the thought that it would be insulting has been bothering me.

Upon hearing my story or a day in my life, or what have you - I get this comment a lot. I've always taken it to mean that they person listening to me or observing me is truly in awe of the struggles that life presents us. They are trying to commiserate, but without having direct experience to draw upon, expressing that is the best they can do. I see it as someone admiring me and what I do daily.

I don't think I'm all that special. I think that just about anybody put in my position would do what I do. I've gotten to know a great deal of parents with special needs kids. It does change you. It changed me for the better. Are there days when I wish I could trade places with the parents of typical children? Sure, but only for about 5 minutes. Some of the quirks that make Molly and Kennedy "special" are also what make them Molly and Kennedy - and I wouldn't change who they are for a second!

So, my answer to people who express the sentiment of "I don't know how you do it" is, I don't know how I do it either, I just do. This life is my typical. I find my strength in my girls, and in my faith that I've been put here for a purpose. That purpose may not always be clear and the path may not always be easy - but it's our lives and we're thankful for each day we get.

My mom shared with me a sweet story a few years ago after an event that changed me. Molly was probably about 2 1/2 and we had gone through a horrible medication change, where I didn't know who my little girl was. She would meltdown at the drop of a hat. We couldn't go any where in public without her screaming her head off - it was a very difficult time. She was always a taller child (after she outgrew the preemie stage) and looked older anyway. We took her to Friendly's - a kid friendly restaurant. She was tired, she was altered and she was crying. I was trying everything. An older woman in the booth behind us leaned over to Molly and said "you need to be quiet you are hurting my ears". With tears in my eyes, I picked Molly up, told my mom to cancel our orders, apologized to the waiter loud enough so the woman would hear and said, "I'm sorry, she has special needs and she just doesn't understand". I bawled my eyes out. It wasn't that the woman was so callous towards my daughter. It was just that that was the first time I realized this was my new world and my life. That I wouldn't have those typical excursions that other families were enjoying. Of course, I've come a long way since that day. I've found ways to help the girls cope, I structure excursions around their schedules and not mine, I even utilize technology if they have to wait. We have structured our lives to make them successful in the outside world.

After that moment in my life, my mom told me something along these lines. She had been traveling for work for quite some time and would encounter many families and children on airplanes. Her first instinct at a child throwing a tantrum in the middle of the airport or having a meltdown at a restaurant had always been to judge the parents. What weren't they doing, what were they doing wrong? She told me that since having Molly in her life, she's learned that it isn't always the parents. There are so many kids out there that just can't help it. Now, I'm not excusing every poorly behaved of tantrum-throwing child you encounter, but I do think that before you judge, you should consider the possibility that the child's behavior is out of the parent's control for medical reasons.

Feel free to ask me questions about my girls. When you ask me, I know you are trying to understand our lives and them. You are being my friend and you are showing you care. Just know, not every parent of special needs kids feels this way - a reality check to me! So perhaps instead of "I don't know how you do it", you could instead just ask them how they are doing or how the child is doing. Never worry about what you say to me! I'll always give you a straight forward answer. I'm human, there are bad days and there are amazing days and then there is every other day. One thing never changes though, I do it because of my two very special little girls!

Packing

Remember the days when vacations were relaxing and you hadn't a care in the world? Yeah - not so much anymore! I learned very early on in my life that Mom always must check the bags before leaving on a trip. I am, of course, referencing an unforgettable family trip up north. We were about 4 hours from home when we started questioning my youngest sister on her packing. About a half hour later, she realized she hadn't packed a stitch of underwear. Watching my parents scour the racks of the convenience store for underwear was quite amusing. I think she ended up with designer underwear from one of the premium outlets. From then on, I have ALWAYS packed extra underwear when she travels with us. even if my shapely figure requires more fabric then her slim and toned one!

And so here we are, on the cusp of another vacation, gearing up to pack for a week at the family cottage. A wonderful place where there is limited solar power, and a gas-powered stove and fridge. The storage is limited, the space is small, and it is a boat ride and car ride to any "off-island" activities. And then there is my dad, who can somehow survive the week with one small duffle bag. He somehow forgets that somebody had to bring all the food we eat! But nonetheless, ever the pleaser - I am aiming for compact and consolidated.

I've had my years. There was the year where we brought Molly's dollhouse, all the accessories, multiple baby devices, enough snacks to be stranded for a month. I've definitely earned the scrutiny - but I try. It's so hard to not worry about forgetting something! Thank goodness dad wasn't around when we drove to Florida with a 4 year old and a 13 month old. I'm not even sure how we fit Jen in the back of the van to drop her off at the airport! And so here I am. I try to make a list, and then I add to the list, and then I subtract - it goes on and on.

What do you leave behind? What do you take? Am I making a big gamble by leaving the DVD player at home and only bringing the IPADs? They will both need blankets, sweatshirts, pants - just in case it (hopefully) gets cold. And then there is the changes of clothing - they don't need to be fashion models, but they don't need to be dirty. My kids can literally be within sight of a messy food or drink and be dirty from head to toe. I know, the apple doesn't fall far from the tree on that one! Ok... so then I need the daily meds, but I also need the in case meds. In case there is a seizure, in case there is a fever, and then the grown up meds... It's not so easy to run around the corner to the pharmacy. We'll need snacks, food for 3 meals a day for 8 days, sunscreen, bathing suits, water shoes, "going to town" clothes, batteries... Oh man - I'm up to a car full already and I haven't actually packed anything.

I'm thankful we are leaving on a Sunday this year, it leaves me all day Saturday to get stuff accomplished in between grocery shopping, cleaning up and out the house, entertaining two small children, and maybe putting my feet up?? Vacation used to be relaxing, when my mom took care of all this stuff. When I didn't have to worry about keeping my 2 year old quiet for a few hours every morning so the rest of cottage can sleep until a decent hour, like 7. At least I will have porch-Scrabble to look forward to every morning, I'm up against the beast of the 2-letter words!

Ah packing! You crazy beast - and then there is unpacking, putting everything away for a week and then re-packing. Sure, I'll get it all in bags and boxes and into the van, then out of the van and into the boat, then out of the boat and into the cottage.All the while, I need to make sure Molly and Kennedy stay in their life jackets and don't get buried under stuff, knocked off a boat, or tripped over in the process. So - happy vacation! Hopefully the 2 kids on the verge of sickness swing back to healthy instead of getting worse and we have a wonderful time at the cottage!

Seriously, what would he have done without the rain gear?

View from the boat on the way over

Dad and Molly on a garbage run.

Using the DVD player

There she is - our home by the sea!

The best laid plans..

Last night I went to bed with fantastic plans for today. Kennedy and I were going to drop Molly off at school and then meet up with a good friend to do a little scouting around for an end of summer school project for Molly's class. With 8 kids, all with different allergies & sensitivities, we really can't send in a food treat. And with the rules regarding food anyway.... let's just say I've sent in donuts (by request) masqueraded as breakfast buns, and cupcakes as muffins. I've also done an entire preschool birthday celebration with sugar-free pudding and SNACKWELL cookies. But I digress, we were going to look for an easy tangible craft the kids could take home to remember the summer. Then we were going to get coffee. It was going to be a wonderful and relaxing day.

Instead, Molly woke up at 4am and was in my bed by 5am. There was nothing wrong that I could tell except she seemed agitated and she has a rash. Little red dots spotted her chest, belly and entire back. "Great" I sleepily thought to myself, plans changed again.... By 7:30am, Molly's morning "nap" was over and she was in full agitation mode. If you've never seen this, it's something to behold, and it's the biggest clue I have to something being "off" with her, since she can't tell me. A lot of kids on the autistic spectrum do something called stimming. It's often seen in hand flaps, or hand ringing, or body rocking etc. Molly's stimming, like her cognitive abilities, is much more complex and involved. She talks about a mile a minute weaving complex themes of various stories she's heard or seen while walking in very fast circles or back and forth from her bedroom to the couch. The doctor has actually seen her do this, it can go on for a little as 10 minutes or for hours. The only way I've found to break it, is to give her a tangible electronic distraction (read: Ipad). This will calm her. We haven't seen this stimming in quite a while. We usually see it prior to an illness or when she feels just yucky enough but not full blown sick. This pattern started yesterday, she walked so fast, she fell on the Strawberry Shortcake car...

So, Dr. Mom put the stimming together with the horrible sleep with the rash and made the executive decision to call the actual doctor before taking her to school. We were bounced around from appointment to appointment because they insisted we see Molly's pediatrician, who didn't have an opening until late afternoon.... boo! Molly was not happy to miss school and the trip to the computer lab. She was actually angry with me - she told me so! I diffused the anger with the promise of a trip to Target (I needed bread anyway) where we picked out new nail polish colors for our summer toes. So my new plans took shape.

During all this planning I realized we'd hit that point in the month where the $30 co-pay would have to come from somewhere else. Ever resourceful, I told the girls we were going on a treasure hunt to turn all our coins to dollars. They were very excited to visit the coinstar machine (where we turned our coins into $62!). The girls were so good today - even with the plans sprung on them. We handled the post office, the coinstar machine, and target before coming home. They played, they ate lunch, Kennedy went down for a nap and we pretended Molly's room was a computer lab. We had to leave at 2:30pm to get to the doctor on time. Kennedy woke from her nap on her own, which was odd and then I noticed the very distinct sounds of a swollen windpipe - there is no mistaking the bark of croup. She's not coughing much, but if she starts - it's going to be a long night - and of course the doctor appointment wasn't for her!

We went to the doctor. I do love him, if I haven't said that before! He thinks Molly's rash is brought on by sweat, or wet skin and rubbing of fabrics, but he wasn't sure - it wasn't a clear-cut answer. He agreed to test her for strep (which was negative thankfully!) even though we didn't think that's what it was (she's had just the rash and strep before). I don't think it's just a skin rash, I think it's a viral symptom and Molly and Kennedy are both processing the same cold or virus in different manners. So now, my plans for the rest of the week are up in the air!

The girls were so good at the doctor that when Molly asked for a smoothie, I took our Rita's coupon and agreed to go there. She was very excited to order a mango-smoothie. She was not so excited when I told her it was shower night. Instead of forcing her to shower (which I've had to do before) I made a plan. How about we eat our Rita's, then shower and get in our jammies. Then I would spread a big blanket out and we could have PJ Picnic dinner - She thought this was great! The evening progressed and we are happily finishing up the Strawberry Shortcake Movie with varying degrees of stuffy noses and sleepy faces. Bedtime is soon!

After all this time, I still get sad when plans get changed. It's part of it all. I strongly dislike this waiting stage - waiting to see if their going to get sicker, waiting to see if a seizure is coming, just not knowing.... I can handle things much better when I know what I'm dealing with - the unknown is frightening and full of too many possibilities! My plans changed and developed by the minute today, but when I forced myself to make my errands center around the kid's involvement, the day went pretty well. I hope my brain can keep up for tomorrow's plans!

Baking with kids

 My Meme made it look so easy. She used to gather 2 or 3 of us at a time for a festival of Christmas cookie baking and decorating. I'm sure her kitchen was covered in cookie dough and unmentionable frosting colors - but I don't remember any of that. All I remember is her loving smile as she encouraged us to make beautiful cookies in literally every shade imaginable. Cookie baking day is one of my favorite memories growing up, such a beloved tradition that we prodded Meme along well into her 70s hosting cookie day.

Then the time came to make cookies of my own. Of course, I had to call her up to get recipes and hints - nobody's cut-outs tasted quite like hers. The thing of it is, she really didn't love cooking and baking - but she loved being with us. And so I went a few years baking cookies on my own and with my sisters, trying to recreate those beloved days. The cookies were good, the memories cherished, but it wasn't the same. Meme's cookie day was just something unique!

These days, I can't call her on the phone anymore to ask for the perfect recipe or to wonder out loud to her how she didn't throw in the towel when cookie dough was clearly caked over everything. She can't answer the phone, so I call her in my head. I often find myself stopping and saying a silent prayer to my beloved grandmother to give me the strength and patience to bake with kids. I guarantee she watches us during the moments getting a pretty good chuckle at my attempts!

I tried to recreate cookie day past Christmas with my girls. With the over-zealousness that often decorates my plans and ideas, I sat Molly and Kennedy at the kitchen table. I let them help me roll the dough flat and cut out the cookies, but I only had 2 hands, and while I worked with one girl the other (usually Kennedy) was throwing dough about the room or painting themselves with flower. The 15 minute cookie cutting session resulted in a half-hour clean up, the 2 of them soaking in a bubble bath while I rushed around to clean up everything they could possibly get into again from the table, the chairs, the wall, the floor, my clothes...etc... I prayed pretty hard to Meme, and didn't lose my cool - but vowed to do it different next time. Those cookies never saw frosting from the kiddos!

It shouldn't be a wonder that I've baked during nap time from that point forward! Until today that is. Molly and I had decided to turn our extra blueberries into a blueberry cake. She was so excited to help. And so I said a little prayer to Meme, pulled out the Kitchen-Aid and got started. I divided up the jobs on the spot. Molly could handle "put this in the garbage", "get the  milk (nearly empty) from the fridge", or "help me scoop and pour 3 times". Kennedy was instrumental in moving the Vanilla extract from one spot to another and in scooping some sugar. The girls were happy because they were included and I was happy because clean-up only took 5 minutes.

What I learned from Meme was patience and just enjoying being with the kids. What I learned from my kids was to keep the tasks within their reach, and not to expect them to suddenly be the neatest kids ever when messiness is right at their fingertips. When I made things tangible and well within their grasp - the results were so much more calming! The Blueberry cake is now in the oven, we'll see how it turns out, but it doesn't really matter. The kids are smiling, they had fun and of course they are clambering for some dinner!

Cookie Baking - Christmas 2010

 

 

 

To work or not to work

There was a study posted on NBC Connecticut yesterday talking of the studies linked to stay at home mom's versus working moms and the impact it has on the children. Just like all the studies out there for some people the results will hold true and for some they won't. I, personally believe, that the family structure and responsibilities should be determined by the individual family, and not a study.

When Molly was born 6 weeks prematurely, it never crossed my mind that I would be a stay at home mom. Chris was working his way up the cooperate ladder, but had just changed jobs to open himself up to more opportunities for growth. I had found a home day care for Molly to attend, and had planned to take the 8 paid weeks allotted to me for my c-section delivery. When she was so small and in need of so much, I decided to use my FMLA and extended my leave to 12 weeks. Molly entered the world of day care at 3 months old and weighing less then 10 lbs. It was a heart wrenching decision to leave her, I actually felt guilty. I wanted to work, I thrived from working. Being alone with a newborn who depended solely on me scared the crap out of me! Then Molly started getting sick a lot and we in turn got sick. All these new germs were invading our house - yuck! The home daycare was a loving place, but she confirmed what I already knew - Molly was a handful. And I was, essentially, a single mom during the day. I had all the love and support that I needed, without a doubt, but I only had 2 hands and was by myself - and it terrified me!

When Molly was 6 months old, the home daycare closed and we had to find a place. I decided I wanted her in a small center that would both nurture her and teach her. Somewhere where she could interact with other children her age, but also get plenty of attention. We found a great daycare, right on the way to my job. She transitioned (eventually) and life moved forward. She still got sick a lot, but she was well cared for! Then December 4, 2006 happened. She had her first seizure at daycare, she scared them senseless, and the thought of losing her snapped me out of the timid new mommy-ness I had been experiencing. I grew-up that day. There is something about holding Oxygen over your child's mouth in the ER, and then watching helplessly as doctors administer medication after medication and run test after test.... I just knew that I would do ANYTHING for my baby. From that moment on my life changed.

I continued to work, but my teaching career suddenly didn't hold the passion it once did. My passion was in helping Molly, in finding out what was wrong and how to fix it. I was rushing to therapy sessions scheduled right after school, so I could be a part of them. My heart was torn. I was so devoted to my students, and to giving them a wonderful musical and theatrical experience - but I could no longer be the teacher I wanted to be. But, we had medical benefits with my job, and at that point, that could not be matched.

In 2008 we found out we'd be expecting Kennedy. Chris and I had a long talk and made a decision. The cost of 2 daycare tuition payments compared to my salary, meant I was working for less the $8,000 a year. He and I concluded together that the stress of scrambling for sick days, doctors appointments, therapy appointments, school meetings, etc - was not worth $8,000. We would stop going out to eat, we would cut back on the expendables and we would make it work. The day we made that decision, it was like the weight of the world had been lifted from my shoulders.

Kennedy turned out to be an equally, if not more so, challenging baby. She would scream for hours on end, in pain from reflux. Her spells looked like seizures and we were terrified. Molly was 3 when Kennedy was born, but unlike most 3 year old children, Molly, at the time, was like a very large 18-24month old. She had little language, trouble getting about, couldn't use the bathroom, and did very little for herself. I had my hands full! Over time, we got into a routine, largely dictated by Molly's school schedule. She had started an integrated preschool program 3 weeks before Kennedy was born. Life progressed in a whirlwind of good days and sick days - but we kept moving forward.

Our days are still dictated by school schedules and routines. Kennedy's birth to 3 therapists come out 3 times a week, and we schedule play dates to encourage her interactions with other children. I started working, volunteer, on the board for the Dravet Syndrome Foundation, and I take care of our house as well as being a room-mom for Molly's class. I can't believe I ever thought I'd be bored as a stay at home mom.

This is the life style that works for us. It doesn't work for everyone. I don't know what the future has in store for us. I have many ideas out there on the horizon of things I still want to accomplish, but right now - I'm happy being where I am!

March 2009

Just another morning

Our day starts well before my ideal 7am wake-up time. Chris has to be out of the house by 6:40am, at the latest most days. Kennedy senses that she needs to see her Daddy and often graces us with her sweet sounds somewhere between 5am and 5:30am. Luckily we've now trained her that if Daddy comes in she's getting a new diaper, a cup and her music turned on. Then her door is shut and it's up to us how loud the monitor is on. She's in a toddler bed, so she could get out and play with the plethora of toys in her bedroom, but most of the time she prefers to nestle in her bed with 10 various stuffed things and a few books. Guessing Molly's wake-up time is like playing the lottery - you never know. She could sleep through the atomic bomb at some points of the night, but I often hear her moving about her bed and find her in some of the strangest positions. Because of their various issues we have video monitors trained on both of them and we see some of the silliest things! Anyway, back to our day.

I've usually spent my night with one eye or one ear open, and the deep sleep is often hard to come by. It is even harder to come out of! By about 6:30am I am prying my eyes open and wiping away the sleep to see what Bob Maxon has in store for our weather. This helps me determine clothing, if I should fill the kids pools, or if we could possibly venture out to a zoo. I drag myself from my rather comfy bed and try to get a shower - more to train my massive head of hair and to make sure I don't stink too bad then for any other reason! Molly is often greeting me at the end of my shower and off we go.

This morning I said, Molly find your Thursday underpants. This has been a great way to teach the days of the week and help her know what day it is. She's also insistent that she wear the correct day. Anyway, I asked her to get her underpants. She headed in the wrong direction. I asked again. She responded something about Pirates. Figuring the third time was the charm, I asked again - she told me today was music day at school. I gave up at this point and dug out the Thursday underpants myself. I helped her with the bathroom and brushing her teeth. Then I went and prepped her meds - a sprinkle cap opened on a spoon of whipped cream - and got her the requested cup of Orange Juice (95% water in the cup then a splash of juice - she loves it and it makes the very expensive OJ last much longer!). By this time it's about 7:15am. We got her dressed quickly. She's requested a skirt, so we choose a pink skirt and tank top. I help her with every article of clothing and leave her socks on the couch next to her with instructions to put her socks on.

I run to get dressed, since I can't possibly complete any more tasks with heavy wet hair and a bath towel for my stylish clothes. By this time, my poor neglected Kennedy has reached the end of her music CD, is done reading books and ready to be mobile. I open her door and am greeted by a smiling little girl. She bolts out of bed to find her sister. I catch up to discover that Molly's socks are where I have left them and Molly is lying on the couch next to them and Kennedy is already running asking for "mink". I get her cup ready and Molly is requesting breakfast. We negotiate a bit, I swear she thinks this is a restaurant, and she agrees to eggs with cheese, toast and banana. This is quite a hefty order compared to the usual bowl of cereal - but I figure the protein is good. Kennedy won't eat eggs so I make her some toast and decide I might as well make me some too - since yesterday there was no breakfast until lunch time.

While I make breakfast, Kennedy has scurried underfoot at least a dozen times. I check on Molly while the eggs cook and the toast, well toasts. The socks are still next to her. I give up and put them on her feet. I can see the zoney look in her eyes - she's on another wavelength today and I need her to catch-up to my speed. Alas, I must adjust to hers.

I get breakfast on the table and the girls converge like people who have never seen food before. I find myself running a continuous stream of "chew", "not so much" , "no peanut butter in your hair", and "don't throw that at your sister". Normally I would like to sit with the girls and plan the day as we eat breakfast, but there is too much to get accomplished. I eat my toast and drink my keurig cup of coffee, which gets spit out because I stirred it with a dirty spoon and get a chunk of something in a sip, while I stand and prepare Molly's lunch. She refuses to eat the free lunches that come as part of the summer school program and she refuses sandwiches. So I try to create a balanced lunch with things she'll eat. In goes a yogurt, a cheese stick, some fresh fruit in a cup, a water-juice box (love those!), pretzels, an ice pack, fork and spoon. I pat myself on the back - I didn't forget an item today - the cheese stick was left out accidentally last week - and the admonishment I got from my five year old was rather pointed! I will not forget again! Now my vacuum-eater daughters have finished their breakfasts. A mixture of crumbs and goo adorn their faces, hands and clothes. I clean them up and strip Kennedy. I've picked out her outfit, which she stubbornly refuses and insists upon a dress. I don't even fight it - she picks a dress and I fix her hair and then fix Molly's hair.

It's now 8:15am. I've remembered our play date scheduled for after we drop Molly off, but only just remembered the peanut allergy and the fact that Keddy had Peanut Butter for breakfast. I break out the cleaning supplies and scrub and vacuum the kitchen, the chairs and the table. The girls have since taken out multiple toys.and are well into their elaborate play schemes. We need to leave our front door at 8:40am to have enough time to get in the car and make it across town for summer school. At 8:30am I ask Molly if she has to use the bathroom, she declines but my detective nose knows that Kennedy has a gift for the diaper fairy (if only!). I scoop her up and head to the changing table while instructing Molly to find her shoes. She actually hears me, but pulls out her Sketchers, which she knows she can't wear to school. She asks, I remind her, she replaces the shoes but doesn't get another pair - my bad, I wasn't specific enough. I ask her again to find shoes, but now she's sitting on the floor of Kennedy's room playing dollhouse. I break the play with a reminder that it is not time to play, but time for shoes. She finally goes to get them, I sit her down to help get them on and ask Kennedy to get my shoes. Keddy picks out brown flip flops, I put them on, but would much prefer my broken in pair. While she's not looking, I switch my shoes and help her into her purple flip flops. Kennedy, of course, notices I've changed my shoes and yells at me. I cave and change my shoes. It's 8:40am

I grab the bag, and the keys and then remember to sunscreen Molly. I grab everything again and direct the kids to the door. Their both distracted by something again. Finally at 8:42 we are out our front door. Now I just have to get them down the stairs (Molly an unstable walker and Kennedy new to the whole climbing thing, and fiercely independent), in to the car (both insist they have to be first), make sure the air conditioner is cranked up high enough so Molly is ok, get them in their car seats (which neither can buckle once they are in them), and drive to school. The minute my car is on the street I feel my whole body relax. Another morning routine conquered and a 20 minute break in the car (10 mins there, 10 back) before the day time routines begin.

Only about 11hours until Chris is home and the girls are snug in their beds.... It's hectic, but it's my reality and I really think I like it!

The Scary "A" word

You know the book the Scarlet Letter? Well, guess what, if every child diagnosed with an Autism Spectrum Disorder walked around with a Giant "A" on their chest - I think people's jaws would drop. We've all been educated by the media of what "classic autism" looks like (ex: Rainman) and I must say, NBC's Parenthood is doing a great job of bringing Asperger's (very high functioning autism with certain characteristics) into the public's eye. But, I find myself thinking, where do my girls fit in with these pictures?

The truth is, the don't. But they have Autism Spectrum Disorder. Both were tested, by 2 different organizations, and both had a resulting diagnosis of PDD-NOS. In layman's terms it means they have enough autistic characteristics but don't fit into any of the other categories. According to Molly's doctor, fairly soon the DSM (diagnostic and Statistical Manual of Mental Disorders) will release another update. The confusing sub-classes of Autism such as PDD-NOS will be taken out and all will be classified as Autism Spectrum Disorders.

We met with Molly's doctors yesterday up in Boston. Molly was a gem. She was polite, she coped with all the traffic "jelly" as my father has taught her to say and even found some "traffic peanut butter". She observed the red roofs and the river and asked if we were close to China. Molly had an hour and a half development appointment, a half hour neuro appointment and then had to have blood work done. She's been complaining of belly pain, and with her high pain threshold and usual lack of complaint, we thought it best to test her pancreatic functions as well as her liver, depakote level, CBC and the rest of the routine set. We'll see what that says. The phlebotomy techs were blown away by Molly. She sat in the chair extended her arm, didn't make a peep. They putt on the tourniquet, and cleaned her arm. She looks at them, says "I'm ready" I say "like a statue Molly" she holds still and blows out her birthday candle as the tech inserts the needle. No tears, no fuss - just awe at the band aid they place in the crook of her arm.

The biggest thing at her appointments yesterday was the doc's decision to remove the provisional from Molly's autism diagnosis and to make her main diagnosis (in combination with seizure disorder) followed by the ADHD and the Dev. coordination disorder. Yikes - right? It's not that I didn't see it coming. I know Molly's play skills are very immature, her eye contact difficult to obtain, her attention in left field, her days driven by routine, her speech patterns questionable and her desire to retreat into technology high - but it still takes a minute to digest that we are going with the official diagnosis.

Over the years we've been able to process all of this and we know Molly is so much more then a diagnosis. She's a complex kid both medically and developmentally. She doesn't fit into a mold, it's more like she's created a new one and Kennedy fits into a lot of it. Which brings about our interesting conversation. Our neuro is both a practicing epileptologist/pedi neurologist and a researcher. It turns out there is a new technology to sequence something like 20,000 of our genes and pull out all the ones that have atypical variants. They will then be able to look at the variants, and which ones they know cause certain disorders. Then they can compare the similarities in the girl's variants. This is a major step in figuring out what's going on with the girls. We can almost guarantee that it's something genetic and it's something - but since I developed normally (despite my 3 febrile seizures - very common) there isn't a real tie into the girl's development issues.

I feel like I have to learn a brand new language every time we go to a doctor's appointment. It's fascinating but even if we had a reason, it wouldn't change treatment at this point. It may give us an idea of what the future holds, but no certainty. In the back of our minds is always the risk that Molly might lose the decent seizure control she has or that Kennedy could start having seizures. And so, we embrace the "A" word, and like Lord Voldemort, we say it out loud - AUTISM. It doesn't seem so scary any more. You see, it's still just Molly and Kennedy. Two little princesses trying their hardest in this world!

photo by Athina Loveland Photography www.athinaloveland.com

My husband, my partner

As yesterday was our 7 year anniversary - I feel it's only appropriate to spend a blog on my other half. Chris and I met in college. He was directing Shakespeare, I signed on to assist him. We dated, we didn't date, we dated again and then the May of my graduation we went to Disneyworld together with a group of friends. Since he was a year ahead of me, and lived in NJ while I was in CT - we only saw each other on weekends, spoke through emails and phone calls and tried our hardest to navigate his first grown-up job and my student teaching. When we went to Disney, we spent an entire, un-interrupted week together for the first time. I swear, I fell in love with him on a completely new level and I knew we would spend the rest of our lives together (with multiple trips to Disney!) He proposed on Christmas Eve of that year and a rather lengthy 19 months later, we were married.

Our wedding was an event to remember. And I do remember it. Chris and I decided that we would not drink, we wanted to enjoy ourselves and not regret anything in the morning! I don't think our dance floor was ever empty. I enjoyed every minute of my wedding day from my 7am breakfast with the bridesmaids, to relaxing with a small group of friends in the living room of our suite until 2am. Our honeymoon was glorious - First to Disney and a stay and the luxurious Grand Floridian and then to Hawaii. And then we came home, and real life began. We had an adorable little first floor apartment across from the train station in Fairfield. Chris commuted to NYC and I finished up the last few weeks of summer vacation. That winter we decided to look for a house. We moved at the end of February and found out we were having Molly in April.

To say life has taken us on a roller coaster ride, is, quite frankly, an understatement. We were kids when we got married. Boy, did we grow up fast. Through it all though, Chris has remained my constant. I loved him when we got engaged, I loved him on a whole new level when we got married, and then the love deepened again the first time I consciously saw him hold our daughter. She was so small, and he was so gentle. You could see the love radiating from him.

Marriage is not easy. It's not the stylish thing to do. It's a commitment. There will be hard times. Times like now when the purse strings barely stretch to fit the ever growing pile of bills. Times where you watch your child unconscious in the ER and anger fills ever part of you. Times where the garbage is overflowing and the clothes are folded wrong and the toilet seat is up. Times that I have yet to experience in my relatively young marriage. But, I know, without a shadow of doubt, that Chris will be there - right by my side, working through it as my partner. It's not me against him.

There are times I look for the argument, that he just doesn't want to give. There are times when I am so crabby, even I can't stand to be around me! But, bless his heart and soul - Chris is there. We took our vows. To be there for better and for worse. I know the road ahead of us is not paved and smooth. I know we will encounter challenges we cannot even fathom at this moment. But I look behind me at the road we have already traveled and at the couple smiling their faces off as they took their firsts steps as husband and wife and I know there is something good here. Whether we just got lucky and found our perfect matches, or if we were destined to be - I am thankful for every day I get to be Mrs. Christopher Renz.

I can't help but be a sap when I talk about our relationship, there is a lot of love in our lives and we thank God for that every single day!

Play Dates are Great...

Play dates are Great, but I am tired!

We had a very busy week this week and capped it off with double-decker play dates today! This morning my dear friend Erin (we taught together in the early years at West Shore) brought her 2 little ones over to play with Kennedy. "T" is a 4-year old boy and "I" is a 2-year old girl. Kennedy was unsure at the beginning and hid her face and herself from our guests. She warmed up after we went downstairs to the playroom. She loved "T's" energy and enthusiasm, and seemed entertained by "I". They played with every toy downstairs and then transitioned well for some outdoor fun! I had thought ahead and blown up the spare round pool in addition to the princess castle. The kids frolicked, swam and at munchkins (quite a treat). They then came inside for a light lunch and a little more play. By that time, it was already time to pick Miss Molly up from school. Kennedy seems to really love other kids, and she is definitely around them a lot, but it makes her nervous. I'm not sure if it's sensory overload, but it might be. She definitely seemed to handle things better when she was expelling energy in a rough and playful kind of way. The more she and "T" splashed, bounced, and ran around - the happier and more comfortable she became!

Then, this afternoon, we had FINALLY (Molly asks every day!) scheduled a play date with Molly's beloved Chloe and her twin brother Chris. C&C I will call them! They were as excited as Molly to come to our house. The three big kids and little Kennedy were bouncing as the congregated in the living room. We quickly changed into swim suits and out the door we went. Kennedy stayed to herself and splashed and just took it all in. Molly attempted to twirl a jump rope with C, and then attempted a hide-and-seek game with C&C. This was particularly amusing to watch as Molly hides in the same place every time, and then never checks to make sure somebody is seeking! The kids finished up with outside and went down to the playroom for some dress-up, musical instruments and other toys. By the time they finished, it was 5pm, Daddy was home and we allowed some Wii time. It is important to note that Molly, being the electronic addict that she is, is only allowed to play Wii for less then 1 hour and only on Friday, Saturday, and Sunday. It is also the most prized possession, which she knows she loses if her listening ears are not turned on. "If Mommy (or anybody) counts to 3, Molly loses Wii!". By then pizza was picked up, the kids and the parents settled in for some dinner and then the kids finished the evening up with a little sitting around the fridge for a sing-a-long. It was super cute to see them gathered around the Leap Frog boom box singing. They are so sweet and no one is ever excluded, including the smallest member of their group.

My kids were wiped, as was I. They played a little IPad, played with a few toys and were off to bed, hopefully to sleep through the night! It was another wonderful day, to cap off a wonderful week!