sometimes I'm in awe!

Because I'm your mom, sometimes I'm in awe of my children. I know most parents are proud of their children. They are proud of their accomplishments, that home run, the A+, or the random act of kindness. So, maybe I'm just like every other parent in that I'm proud of my kid, but I'm pretty sure my kid is not like everyone else. I'm not proud of something Molly accomplished, but instead of who she is.

Molly's day today was so rough, if it was me and not her, I would have been rocking in a corner crying. Molly though, was smiling almost the entire day, genuinely greeting people, and sincerely thanking me for a great day. Her soul is so beautiful and she is really just such a brave little girl.


I should preface this by saying I know Molly could have it so much worse, but I'm pretty sure that she would handle just about anything we threw at her.

So, I silently woke Molly girl up at 4:30 this morning. She was very confused as it was very dark. She attempted to get dressed herself, I fixed her and we packed the car and got on our way. We took daddy's car, so I plugged the portable DVD player in to the lighter outlet. Molly snuggled in with some WRECK IT RALPH and I fought to keep my eyes open. We cruised until about Framingham where we found the traffic, but we still made it to the CHB parking garage by 7:45am and got a decent spot and made it across the street without a stroller (whoops - wobbly kid was with me today). We were upstairs before the turned on the lights and in for our EEG hook-up at 8am. Then we made our way down to the lab. It took a while because they had to make sure they had al the assigned vials correct.

In marched Molly, informed them that she wanted them to check her right arm, and bravely sat with her arm extended. Not a tear or sound escaped that brave little girl as they took so many vials of blood, I lost count (i think it was 10 or 12). Then she got to give a urine sample, which she thinks is hilarious because she always pees on my hand. Finally, there was a break and my very hungry little girl (since it was 9:45am) was able to dive into her MAD friendly breakfast. We found a quiet spot out by the playground, and she devoured her bacon and her flour-less pancake thins with peanut butter, as well as half her whipped cream with peanut butter and chocolate. When she'd had enough, she was begging to play on the playground. I didn't have the heart to say no, even though it was still all wet from the rainstorm. So, I let her play for about 10 minutes. I "helped" her across the monkey bars - meaning that I carried her - and let her slide and get her bottom all wet.

She dried and we went back upstairs, this time to the 10th floor to see Dr. Ware. We are so thrilled to be back with this brilliant specialist in developmental behaviors. Our insurance change last year had prevented us being able to see her, but now we can again - and I know good things will come of it. She understands that Molly is a complex kid and doesn't resemble anything you might find in a text book. She is passionate and an advocate and will help us create a program with goals appropriate not only for a child on the spectrum but for Molly. This appointment consisted of me and the doctor talking while Molly played IPad in the hall. It also consisted of some basic testing and play time with Molly. This meant Molly had to work and you could see it tiring her out! Things were running behind schedule already, so Molly sat in the hall while the doctor scored some testing and ate her MAD friendly lunch. She, once again, devoured her lettuce roll-ups with mustard, ham and cheddar, her cucumber and celery sticks, and the remaining choco pb whip with some raspberries. She also discovered that she LOVES the Nestle Pure Life Wildberry Flavored water.

Dr. Ware then practically raced us to see Dr. Poduri as she wanted to tell her that she was extremely relieved to say there had been no cognitive decline associated with the behavioral regression we had seen. And, watching Molly today, I totally saw that she was pretty much on. In fact, I've noticed a subtle change over the past few days as we've initiated the diet - but I don't want to get too excited. We then met with Dr. Poduri who informed us that Molly's bloodwork looked like that of a child who had been in the hospital to initiate the Keto diet and was being discharged on day 5. Her Ketones are in Moderate to High Range, her bicarb is a little low but not dangerously and her blood sugar was 60 which is just high enough. So - overall she looks good. However, we know Molly so we have to continue to check urine ketones and we get more labs drawn next week. The plan is to see what we can tweak and how we can make MAD work best for Molly. We are adding bycitra to her list of meds to help prevent kidney stones. By this point it's 2pm, and Molly is getting punchy! We end up meeting with Dr. Poduri, the nurse practitioner, and 2 other medical doctors. We plan to visit the keto clinic and the nutritionist in May, and then to see Dr. Poduri in July with Zoey in tow. We wobble our way out to the waiting room and let them know we're ready to take her "buttons" off.

Molly, by this point, had been awake about 11 hours, and she was feeling it in addition to how early she awoke this morning. The laid down to have the buttons removed only to have the poor tech find that the guy who hooked her up had actually taped the wrap and hat to her hair. This led to pulling tape out of the poor baby's hair and lots of tears. She didn't flinch, didn't move, but the tears streamed down her face and when the pulling had stopped, the tears didn't. My heart broke because she looked at me and said, "Mommy, I don't know - I have tears!".

I promised a stop at the Disney Store on the ride home, since I had to finish getting some stuff for her cousin and that seemed to negate any hair pulling she had endured. We made our way out of the hospital, set ourselves back up in the car and were on our way by 3pm! Molly passed out for about 20 minutes, and was in really good spirits when we got to the Disney Store. Sweet baby girl bee-lined it to the Wreck-it-Ralph Clearance display! YAY for my wallet! Then she insisted her sisters needed gifts too - another heart warming moment! We paid, got back in the car and did great until we hit that darn merge with 95. We were home by 6:20pm. She got her hot dogs, cheese and some more PB and choco whipping cream. She got a good shower, and then some IPad time. She was tucked into bed a 8pm and probably sound asleep by 8:10!

She is an amazing little girl, so good-natured and truly sweet as pie. I thank GOD every day that she is who she is because she makes these crazy days manageable and almost enjoyable. What's on the horizon? We've got labs next week, Sleep appt in Waltham next week, pulmonology next week, a PPT in the near future (for her and Ked), Cardiology appt in May for Molly and the autonomic issues, Keto clinic and dietician in May, epilepsy in July and development in October. And believe me - I KNOW that is just the outline!

you think I can do it all

Because I am your mom, I do my best to make you think it all works effortlessly. I wipe your noses, tie your shoes, make your food and try to do it with a silly smile all day - but man, in reality I am tired and sometimes the tasks at hand seem to outnumber the minutes in the day to complete them.

Molly is beginning a new medical diet to add to the meds that help control her seizures but that should also help her gain some clarity and attention. It is called the MAD diet (modified atkins diet), and while it mimics the ketogenic diet in many ways there are marked differences. MAD doesn't require that we weigh and measure Molly's foods, but it is a very low carb diet. For now, she can only have 10g of carbs a day. That is not a lot of carbs at all - but she's being an amazing sport about it all.

Yesterday she had a glamour party with her Brownie troop and party of the activity was a giant cupcake as big as her head - for which she didn't fight me at all when we talked about not having one, and just went ahead and had her cup of popcorn. I expected tears but was met by a very grown up girl who just finished a unit about nutrition and is trying to figure out why she can't have grains when that's what gives you energy. So as boggled as I've made my little girl's mind - she's so very trusting of Mommy and is willing to give this a try. We're experimenting together. I discovered that although everyone else liked the mashed cheesey cauliflower - Molly thought it was disgusting. Molly discovered that you can wrap sandwiches in lettuce and that Mommy can make fake bread with eggs and cream cheese. I am FOREVER grateful that Molly is willing to try new foods and pretty easy going as long as it's within her schedule.

That being said - Today was a prep day, it was a Monday, it was a BUSY day! We started it off at about 1am, well Zoey and I did anyway and then again at 2:45am and then for real at 7am. I had to make bacon and eggs for breakfast, pack a lunch and then prepare 3 different dinners. There were bills to pay, FSA requests to organize, and zero carb foods to discover and order. There was a toy store run this morning to reward Kennedy for 4 days without temper tantrums (granted it was out of 6 days). It was an hour long trip since Kennedy had a $15 budget with eyes for everything expensive! But, no temper tantrums! There was also a WHOLE FOODS run to try and find Molly-friendly food that resulted in just fruit and a scone for me and Ked - that place is seriously expensive. Then there is the school drop offs and pick ups, the bank run and fitting in a nap for a very cranky baby who is getting some new and very sharp teeth.

Then it was dinner prep time, convincing Kennedy that she doesn't live next door and that sometimes the amazing boys who are 5+ years older then her cannot always play with her and then getting her to paint instead - give that kid a chance to make a mess and distraction is usually achieved. Of course, Ked's is outside, Molly wants to be in and Zoey just wants a pouch sewn on to my leg so she can come everywhere I go! Somehow dinner got on the table, baths and showers were given, medication was administered, most of the dishes were done,. And then it was time to prep for tomorrow's adventure.

I'm waking Molly up at 4:30am, changing her and throwing her in the car and driving to Boston to get to the hospital for an 8am EEG hook-up. She's being hooked up for a 6 hour ambulatory EEG. We're getting labs drawn, then we have a 10:30 appt with her Developmental Behavioralist and then a 1pm with Dr. Poduri. Then 2pm we get the leads taken off and get the heck out of Boston!. Of course, with starting this new diet, I had to prep all her food for breakfast and lunch - since she has to be fasted for blood work. That was another whole step for tonight's list. There was also prepping Kennedy's clothing for the morning and Molly's. There was also packing our bags for the car ride and time at the hospital.

Yeah - the day was busy. And now, here I sit under a blanket, on my couch, blogging it out. And, I fully admit when I close my computer, play my WORDS WITH FRIENDS game on my phone, I will fall into a deep sleep on the couch for about 40 minutes, and it will probably be the best sleep I get all night since I'll be afraid of missing my close to 4am wake-up. But hey, tomorrow's prep has already started as I bought an extra iced coffee today to grab from the fridge so I don't have to stop tomorrow since dunkin' opens after we leave!

So girls, I hope it looks effortless to you, and I'm truly sorry if I snap when you tell me you're hungry as I'm trying to put 3 different dinners on the table, but because I'm your mom I can promise you - it's HARD work, but I love you, so it's totally worth it!

Clean Up duty (may be gross, tried to keep it clean)

Because I am your mom, I'm usually on clean up duty....

It's hard to say when this illness started, or what exactly this illness is. About 2.5 weeks ago, Ked had a fever and Zoey was super fussy. About 3.5 weeks ago Zoey had a fever. About 2 weeks ago Molly was coughing so hard and complaining of a sore throat. On Saturday Zoey puked, Tuesday morning Daddy puked, Sunday night into Monday Mommy was feeling nauseous and yucky but thought it was a med not working. On Tuesday night Ked puked - but at 6pm and nothing since and now at 2am down goes Molly, who is still so congested it's hard to recognize what's what. The thing is, everyone puked once (so far, knock on so much wood). And every incident had an explanation. Like for Zoey - her persistent ear infection was worse and the antibiotic she was on causes belly upset. We didn't even think stomach bug as she started with lots of diarrhea shortly after starting zithromax. It all matched up.

Unfortunately, poor Zoey is having a rough go. She's not keeping much of anything in and is slightly dehydrated at the moment. We are doing our best to get pedialyte into her at every feed, so fingers crossed! She's turned blue a few times though and is just pretty miserable, but at least she is trying to get restorative sleep.

I sent Daddy away. After his incident, which coincided with bad sleep, heavy shoveling and over exhaustion - he  felt fine and went to work. I pretty much commanded he get a hotel room instead of making the 2+ hour drive again and actually get some rest and some good uninterrupted sleep. He must have been tired - cause he listened.

Thankfully Auntie Jamie had planned to come over today and was here to help as I dragged Zoey back to the doctor and then Kennedy let loose. Now, before Keddy puked she had complained her belly hurt - after she stabbed herself with play scissors. Then I let her play in the tub, which she loves, but being Kennedy, she got a hold of shampoo and somehow ate it, got it in her nose and eyes. It was shortly after this where she had her incident.

And then poor Molly. (Whom I should mention has had a very very junky cough for a few weeks). Well, I kept Keddy on the couch with me, put Zoey in her crib and Molly in bed. I heard Molly rustling at 1, so I checked her, she said she was fine and I put her back to bed. Then I heard the tell tale cough at 2:30 and went running. Molly doesn't understand throwing up and it scared her a lot. Keddy is refluxer and knows to use the bucket, Molly not so much. I tell you, there is nothing like a puking child to get you disinfecting and cleaning your house at 2:30am. I lifted my 53 inch, 62 pound child straight into a warm shower and let her relax there while I stripped, lysoled, filled washing machine, bleached etc... After chanigng her and settling her with puke bucket #2, I continued my clean. Who cares that there is frost on the ground. The windows in our bedroom and the girl's bedroom are open and the doors closed!

You see, I may have said a few times in the last few days, "oh #*%)(!" or "why now?" but I NEVER said I didn't want to be their mom - it's part of the job, it's a yucky part. It's definitely not the hardest thing I've ever done or ever will do - but for whatever reason, puking shoots my anxiety levels through the roof. I think it is also because the gala is this weekend, so in the end, I guess I'm grateful it's happening while I'm home to take care of them.

sicky sick sick sick slumber party

a "me" day

Because I am your mom, sometimes I need a "me" day. These quiet days do not come along very often and realistically speaking they are not very quiet, at least the way that I do them. I am very grateful that Daddy insisted I leave the house yesterday and that Grandma sent me a gift so that I could leave the house. I still got up in the morning and made breakfast and prepared the house for me to be gone for the day. I got my things in order and left to meet a friend for a quick cup of coffee and then it was off to the hair salon.

I haven't had my hair done in such a long time. I think I cut it about six months ago, and I haven't had it professionally colored in about two years. It was just one of those luxuries that had to fall by the weigh-side when I became a full time stay at home mommy. But, alas, upon looking at my reflection in the mirror a few weeks ago I noticed something shiny and silvery sticking up on the top of my head. I know grey hair is distinguishing, and I know I've fully earned the changing color of my locks in my long thirty-two years. But, honestly I'm not ready. Yes, there are days where I am so tired and worn down that I feel about three times my age, but then there are days when I'm running around and playing with you girls and I feel like I'm 18 again. Those moments are usually followed by a night of motrin and sleep, but still - I'm just not ready for grey hair.

Being a Stay-at-home-mom has caused me to sink into the ease of dressing. The clean sweat pants and shirt are usually the quickest things to pull on. The dress clothes and shoes have certainly been traded for slip on UGGS and bleach splattered sweat shirts. And, well, if I have jeans on - watch out I'm dressed to impress! My make-up palette and brushes sit pretty much unused and my straightening iron is collecting dust. These things have no use in my hectic day to day life with three little girls who need me pretty much constantly. However, there is a gala coming in two weeks for which I must dress to impress. And, more importantly, every now and then I need to impress myself and maybe even those around me :o) So, off I went to the salon. We chose caramel highlights and soft flowing layers. I once again have two distinct eyebrows and it feels wonderful! I cherished every minute from having my hair washed to someone else drying it for me. I used my foil time to organize my to-do list for said gala and then I just sat for a few minutes. It's amazing that the task of going to the hair salon can feel like such a piece of heaven, but it's all in our perspective. I sat for 2 hours without being climbed on or yelled to once! It was great, and yet, I texted home three times because I missed them!

When my hair was done I had to high tale it down the highway to the spa an hour away for a pedicure and manicure. My feet have not seen the light of day since about August. This winter has been particularly vicious on my skin. Everything is so dry from repeated washing and sanitizing. I settled myself in to the massaging chair and prepared to relax. Of course, I texted home again to check on the kiddos - I mean they had been sick, and to make sure they hadn't tied Daddy up or pushed him down the stairs. The pedicure and manicure were amazing. My feet felt human again! As requested by Molly, I got purple toe-nails to show my Purple Pride for not only our gala but also the upcoming International Purple Day for Epilepsy (March 26th). And much to Keddy's chagrin, I didn't put pink in my hair, but I did put it on my nails for her. My time was soon over. I had intended to do some outlet shopping, but I was missing my girls and Chris and decided to head home in time to help with dinner.
 

I no sooner walked in the door then I had three little leeches hanging on mama, but their kind words and compliments of my beauty were so heartwarming, I didn't care. I was home for five minutes before I was thinking of the next time I might get pampered, but then I quickly realized that I am truly pampered every day. It may be with love, sloppy kisses and snuggles - but it's a wonderful kind of pampering! So, yes, I enjoyed my "me" day very much - but here, at home is where I belong.

a constant mix of emotions

Because I am your mom, I will ALWAYS try to put on a brave face even when your pain is killing me inside. And I will ALWAYS be proud of whatever milestone you achieve, however big or small! These are two diverse emotions, but the path of motherhood has taught me that sequence and order mean nothing. Being a mom is the hardest and most rewarding job I've ever had. I mean, serving bagels and coffee at BAGELZ back in the day did have its perks, but seriously nothing I've ever done compares with mothering Molly, Kennedy and Zoey. Nothing in life has ever exposed me to the range of raw emotions I feel on a daily basis. And even though I have three girls, they are each so different that parenting them is like starting the level all over again while still simultaneously playing the game in two other ways.

Admittedly, a lot of my focus tends to lay on Molly. She's the oldest, her list of challenges seems to grow daily, and her persona makes you just want to hug her all day. Today, Molly found out she gets to be BELLE 1 (of 2) in her Yale Children's Theater production of BEAUTY and the BEAST. My heart soared when I read the email, because I'm so proud of her. My eyes filled with tears when I read the email, because I'm so proud of her. And I couldn't help but smile when I saw how excited she was to get the part. Of course I'll worry, but I know in my heart she will be great - no matter what she does up there! So, although her days have been challenging and we are headed to our beloved Dr. Carlson tomorrow for some insights - today brought a much needed beam of sunshine for Molly (note: I would have been dancing if she was playing a tree - I'm just so proud of her for wanting to be involved!)


Also admittedly, young Kennedy has learned to quickly pull focus. Whether through death-defying stunts or ear-piercing tantrums - she clearly makes herself known in our day to day lives! Yesterday Kennedy made me so proud as she focused almost completely for the entire 40 minute gymnastics class despite a crowd of lively classmates. Her "apart-together" jumps are coming along nicely, she's conquered the fear of not only walking the balance beam alone but will now turn in circles and walk backwards. Her tumbling is coming along and her pre-cartwheel is really getting there! She also gave me no issues whatsoever about staying with Poppy today so I could take Zoey to her appointment. I am really looking forward to Kennedy's "Big Big Show" and to her Kindergarten registration. She will be undergoing some testing because although we no longer feel she is on the spectrum, we do know there are some missing connections for her. It's interesting because the missing pieces seem to be in a completely different place then her big sister's, but again - 2 totally different kiddos. She is struggling with retaining letters and numbers, even though she clearly wants to know them. And because Chris and I both believe the greatest disservice you can do your children is ignoring their needs, whatever they may be, because you are afraid of a label or embarrassed or scared; we will get her tested and we will get her whatever help she may need!

Thank Goodness for POPPY!

And so, number 3 joins the bunch. She has changed our lives in so many good ways and really completed our family - but I could have never been prepared for what adding a third child to our mix was going to mean. Zoey had a rough first six months. She screamed day in and day out. We were at the doctors, the ER, the GI. We tried elimination breast feeding and hypo allergenic formulas.  We tried different meds and different techniques. To say it was "just colic" is such a gross understatement of the nightmare of pain our child was in, that we won't even acknowledge that "C" word. We pushed and we finally found the combo that worked for her. We figured out what made her symptoms worse and we got through - we knew we would, we'd done it before with Kennedy. But Zoey was different. Her pain threshold seemed either incredibly low or her pain was just that intense. Her startle reflex was and is super sensitive, leaving her literally jumping in her sleep. Tearing aluminum foil is a torture instrument for our sensitive little girl. We also began to notice her lagging in her motor skills and with some discussion had her evaluated by birth to 3. We were right, she was behind in her motor skills and her communication. She qualified for services. They noted a left side weakness/ right side dominance, which should not happen at this young an age. We noticed an abnormal tongue thrust as she tried to eat. They noticed her tongue always coming to the left. We noticed her having weird body jerks and shudders. They were in agreement with our finding of her rigid and jerky body movements. They have been a blessing, because when you have children with special needs already, you start to question if you are over-thinking everything.

You question if she's really behind or you're just sensitive to it. Well meaning friends and family try to assure you she's fine and she'll catch up. But I'm her mom, and I know something is amiss. I don't know what it is, and I don't know if we'll get any solid answers, but I do know where to start. So, since Zoey started seeing Dr. Poduri at 4 months for the startle spells that looked like spasms, I contacted her with all the information. She immediately agreed that an MRI and 24 hr Video EEG were in order. Today was Zoey's MRI. If you've never done this procedure with an infant or small child, allow me to enlighten you! Due to the fact that you must stay completely still for the MRI, the youngest patients must be sedated. At Molly's age many of the kids can lie still themselves or like Molly, just require a local anesthesia, but at Zoey's age medication is injected.

This sedation requires the little ones to fast. This meant Zoey was allowed nothing after 5:30am and her test was not scheduled until 12noon! I woke her at 4:30 and shoved bananas and rice cereal down her throat and managed to coax 2oz of formula into her. She did surprisingly well and was only mildly cranky before the test. I thought she was good to go. She started amoxicilin on Sunday for her 3rd ear infection and hasn't had a temp since Monday night. She had a slightly drippy nose today and coughed once or twice, but seemed in good spirits. She even really crawled forward for the very first time today!

My dear friend Amy accompanied me to Yale while Poppy took the job of taking Kennedy to school and then picking both Molly and Keddy up at the end of the day (my dear husband has to take the next two thurs/fridays off for the VEEG and Butterfly bash).

Zoey had it rough. She apparently has really tiny veins and the extremely experienced NP Jeff (who has sedated Molly many times since she was 1) had a lot of trouble getting the IV in. Poor thing was traumatized as they tried twice in her hand and finally succeeded in her foot. I felt horrible as she screamed and tears ran down her face - there was nothing I could do but kiss her head, sing songs in her ear and wipe tears away. I've gotten too used to being able to reason and explain these procedures away and watch with humbled pride as they are shouldered - but there is no doing that with a 9 month old. Thankfully they administer a pain med and the sedation med as soon as the IV is in place and working. Amy and I put in our ear plugs and leafed through Food Network magazine while keeping an eye on the little feet poking out of the machine. And wouldn't you know those little feet went flying in the air half way through the test. In came Jeff to administer more sleepy meds and the contrast. She settled back down and we were soon transferring her to a gurney and sitting in recovery waiting for her to wake up. She did as they un-taped her ear plugs. She was a dead weight lying in my arms as the meds had robbed her of a lot of muscle control. She took her bottle and I started to notice a worsening cough. We moved her to her carseat and she settled right back down for a nap as we waited for a copy of the MRI on disc for OVER AN HOUR!

The ride home provided us with Zoey's drunken sounds coupled by her increasingly troublesome cough. By the time I got her home and settled and gave her dinner, the cough had me really worried and she now has a temp too. So, needless to say, even though she's in bed, her video monitor is on full volume and constantly within my peripheral vision. She is restless but tired and definitely congested! Good thing she's tagging along to Dr. Carlson's tomorrow!

Poor drugged up baby is ready to go home!

So, needless to say, because I am your mom - I live these tough days with you, but I also get to live the happy moments. My emotions are constantly all over the place, but I seriously think that is what it means to be a mom. Your job is to help your kids grow up to be the best possible person they can, to discover their fullest potential, to keep them safe, to provide for them, to love them unconditionally, and to always just be Mom. Our days are not easy, but they could be harder and most importantly they are always filled with love!

"I'm fine"

Because I am your mom, I know "I'm fine" doesn't mean you are. I expected this to come much later in your life, perhaps in your teenage years, when you truly don't want to share your every waking moment with your mom. But, today, this is different. I looked at your face when  you woke up and I looked into your eyes. You are in there somewhere, but not completely, it's almost like half of yourself forgot to wake up this morning. You literally dragged yourself through your morning routine, and instead of the incessant banter and bouncing, I saw lethargy and fatigue. Your eyes looked heavy, and you complained your leg hurt. But, I sent you to school. I'm not sure what's going on, but as you hugged me good-bye and then stumbled down the path to the 2nd grade door, you called out "I'm okay Mom". And I hugged you one more time, even tighter because I could see the weakness in your body today, that you were having trouble walking in a somewhat straight line.

Because I'm your mom, you're "I'm fine", doesn't cut it. You've been through so much in your short life, that your tolerance for pain and different feelings is way too high. Because I am your mom, I will worry about you all day, more so when you are not in my line of sight! But, because I am your mom, I will send you to school, and I will hope for the very best and be prepared to fly down there at a moment's notice.

I'm not sure what's going on with you, but our loyal Dr. C will check you out on Friday and hopefully he will have some insight. I love you big girl. Please be safe, but know Mommy is right here, to pick you up and kiss away whatever boo-boos I can. And the ones that I can't fix myself? I will never, ever give up trying to find someone who can.

On days like this, it is like sending you to school for the first time all over again. Where I have to trust somebody else to take care of you and to protect you. I know this is what is best for you overall, that I can't give you everything you get in school, but I still wish I could just be with you all day.

feeling like a failure

My first baby

Because I am your mom, sometimes I feel like a failure. Before motherhood, I was a born fixer. I saw a problem, I drafted a solution, and usually I fixed the problem or at the very least, improved the situation. But that isn't the case anymore. Now, some days all I see are problems and I cannot even get to the point to draft a solution!

My sweet Molly, it breaks my heart watching you sink further and further inside yourself. I can see the storm firing inside your head, I can see you unable to stop yourself. It hurts watching you fighting a brain that won't listen. I want to research, I want to ask questions, I want to find you help. But I don't even know where to start or which questions to ask. Are you zoning out? Are you having silent seizures? Are you getting sick? Is this what your personal picture of autism is going to look like? Is this our new normal or just a cycle? Do you need medication? A test? Is there an answer for any of my questions and how do I find them?

I call a doctor, they tell me to call another doctor. They tell me to document, to wait, that we can try this test or that treatment. But what is the right answer? The behavior specialists think seizures, the seizure specialists think behavior and I do not know what the right answer is.

I feel like I have failed you Molly, because we've been in this cycle before. It's a downward spiral where the only thing that calms your body is holding an Ipad, and even then I am watching you mindlessly talking to that Ipad right now. You aren't acutely ill, but you aren't well. You respond to me, but your thoughts are nonsensical and mostly fantasy. It's so hard to watch, because it is not like this all the time. You can't focus, you can't stop moving. You stop mid thought or in the middle of reading a sentence and just stare off unsure of what happened. You're scared of everything. Loud noises, a move we aren't making, being in a show, of traffic and even of death. Some of your fears are fantasy laden and make no sense and some are so real, it's hard to calm you without tears in  my eyes. Before this cycle hit, you were still fixated on theater and plays, but you talked to me and we had conversations. Before this cycle hit you were able to focus long enough to read a story, or learn a new skill. But none of that is happening right now. I feel like you are slipping away from us and that scares me.

So what do we do? I know what we don't do - we don't give up!

I am not one to wallow and I don't let failure keep me down long. I absolutely hate this helpless feeling, so I will reach out to every contact I can think of, every doctor or educated individual and find out what we should do. Because even though I feel like a failure right now, it is also my job as your mom to be your champion. Although I may occasionally fall off the white horse you put me on, I promise to always be there to do everything I can to give you and your sisters the best of everything.

Please know, the best of everything does not mean designer clothes and wildly expensive gifts; it means love, happiness, and self-confidence. It means that if I know something is not right with your health, either physically or mentally, I won't rest until we get answers. It means that you will never know a world where you are not loved and cherished every minute of every day, even when I am banging my head against a wall in frustration.

Sweet Molly, you are my oldest. You have taught me the most and you have paved a path for your sisters to follow. And although I have many worries for your sisters, from Kennedy's behaviors and learning challenges to Zoey's various health and development questions; you are at the forefront of my mind this evening.

Because I am your mom,  I do feel like a failure sometimes. But then I look at your smiles, get a kiss or a hug, or hear you do something that warms my heart and I know I'm not a failure, I'm a Mom. It's my job to feel your pain and heartache and to share in your joy and triumph. So, I just need to keep working!

Because I am your mom, I promise to always love the three of you to pieces and to never give up!