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!