Wednesday, February 29, 2012

Shocking Turn of Events...


A lot has changed since I posted last night's blog entry. I fed the boys early and was planning to put them to bed a little earlier than usual. Miss Sara was on her way to stay with the boys while Ed and I met with the psychologist to discuss our egg donor plans. But our night didn't quite go as we had planned. That is the understatement of the year. If you ever wondered just how quickly things can change overnight around here...grab a snack and a seat and read on.

Gavin ate all of his dinner - the most he had eaten all day as he was very congested with his cold. I brushed his teeth and gave him some homeopathic cold medicine...and turned away to clean up. I glanced back at him and for a second I thought he had fallen asleep right there in his highchair...but my radar went off. Gavin never falls asleep like that. As I looked closer, I realized Gavin was grey. I shook his chest - "GAVIN!" - nothing. I ripped the tray from the highchair and as I grabbed him to pick him up...I really thought he was gone. His body was lifeless and completely dead weight. Ed was working in the basement and Brian was playing in the den. I banged on the basement door and screamed "Something is wrong with Gavin!!" and picked up the phone to call 911. We laid him down on the rug and Ed promptly checked his mouth to be sure he wasn't choking as I talked to the dispatcher. Gavin was struggling for each breath and his heart was beating out of his chest. For a second (or two) I thought, "Well...this is how our story is going to go. I'll have to explain how I inadvertently killed my child by giving him Homeopathic cold medicine."

It seemed like an eternity before the police showed up. And then another eternity before the ambulance arrived. While we were waiting Gavin was unconscious - not responding to anything or anyone. Brian was very nervous and spent the entire time hiding in the other room. Once the paramedics arrived I split my time between talking to them, answering questions and reassuring Brian that his brother (and his Mom and Dad) were okay.

The paramedics quickly determined what I had feared - Gavin was having a seizure. And he was also burning up. Before dinner I had taken his temperature and it was normal, so I was shocked that this fever ambushed me! Gavin never "came to" as they put him on Oxygen and loaded him into the ambulance. I rode in the back with him and they raced us (with police escort) to the closest hospital for emergent care.

This local hospital had NO idea what to do with Gavin. Well, in their defense they did take his temperature (104.9!!) and gave him (eventually!) Tylenol and Motrin to bring it down. After two tries for an IV and vomiting all over himself - I insisted that we be transferred to DuPont, his regular hospital where almost all of his doctors are. They agreed, but said that they would need an IV for transport. So they called two of their NICU nurses to come down. I don't know why I even let them, but two tries later (that's now a total of four sticks) they still couldn't get an IV in. I was done. And so was Gavin.

We were so grateful to see the DuPont transport team. They got an IV in immediately and I lifted Gavin onto their stretcher and buckled him in.
We were on our way for the hour drive to the hospital.
Ed went home and packed clothes and toys and more for me and Gavin. We knew we were going to be a while.

Pulling into DuPont was like pulling into my driveway. We were home...and Gavin knew it. He perked up pretty quickly once we were there.


We were told that Gavin had three long seizures which could have been brought on by the fever. They also could have been a warning sign that Gavin was about to have a fever. Or the two could be totally coincidental. They wanted us to meet with the neurologist and get studies done to be sure. I was reassured - at least ten times last night and ten times today - that the medicine I gave him had nothing to do with his seizures. Thank God. But I will never use that medicine again. Ever.

Gavin was admitted, but there was not a single room in the entire hospital for him. So we settled in to our emergency room (which was pretty awesome, actually!) for the night. Half the night Gavin spent in my arms sitting in a chair or pacing as far as his IV and other leads would let us. The other half he spent in one of their metal cribs. We knew to bring his own blankets so he'd be more comfortable. Lucky for me, he actually fell asleep. Passed out is more like it. But I was too afraid to close my eyes for more than an hour or two. I feared another seizure that never came.

As I paced the floors with him in my arms, I couldn't help but think of what could have been. What if this had happened when Ed and I were romantic runaways this past weekend and it was just Kara and the boys? Or what if this had happened after we left for our meeting with the psychologist and Sara was alone with the boys? There had to have been some divine intervention with the timing of this. It makes me fear ever letting Gavin out of my sight (even when he's sleeping!) but I know that's unreasonable.

Around two thirty in the morning, the nurse noticed that Gavin's IV was leaking. I tried not to panic - losing an IV is a terrible ordeal for Gavin. He's such a hard stick and had already been stuck five times already. Thankfully, the nurse was able to save the IV...but had to pull off all the tape and re-do it which, as you can imagine, was quite traumatic for a very tired Gavin. There were lots and lots of tears.


Morning came and brought with it a new attitude. Gavin was back to "himself" besides a very runny nose and a cough. We met with the neurologist early and agreed that now would be a bad time to do any sedated testing. Gavin doesn't handle sedation well when he's healthy...we sure don't want to sedate him when he's already dealing with some breathing issues. We also agreed that we should wait until he's healthy to do an EEG on his brain. The doctor wanted a true reading of Gavin at "baseline" - without his illness possibly compromising the results.


What he did tell me was this. Gavin may not have had three seizures. He likely had one long seizure...and that seizure was sent to warn us of a very fast rising temperature that I never could have seen coming. Once the fever hit, Gavin developed "rigors" (said like rye-gers) - a new word I learned from the doctor. It's fancy talk for "extreme chills." Rigors can often be mistaken for a seizure which is likely what happened. He assured me that Gavin didn't suffer any type of brain damage from the seizure - something I worried about. He also told me that because of Gavin's underlying neurological condition, he has a higher risk of having a "seizure disorder" from this point on. Basically, we should be prepared for recurring seizures. This was upsetting news! I'll be bringing Gavin back in two weeks or so for the EEG and for a follow up with the neurologist. He didn't see a need to keep Gavin, given he was acting like himself this morning. But he did say we couldn't leave without learning how to give Gavin emergency medication (rectal Diastat) in the event he has a seizure lasting longer than five minutes...and we also had to be refreshed in CPR training.

While I was waiting for Ed to arrive to pick us up, I arranged two more visits from two of our favorite doctors. I emailed Gavin's geneticist to tell her that we were there and she came down with some pretty amazing news. I wrote before that I had asked Dr. Gripp if we could try a brand new genetic test for Gavin called Exome Sequencing. She said she'd look into it and we would maybe start with some preliminary testing in the meantime. Well today she told me that they had received a grant - and asked if we would like to be the very first family at DuPont to try this groundbreaking genetic testing! She warned me that we would be guinea pigs - that they'd never gone through this process before. I felt so honored - and grateful - that she chose Gavin. That she chose our family. We may find out something...we may find out nothing. And as I always say - it won't change anything in our eyes either way. Dr. Gripp and her assistant, Beth, stayed a while to chat and catch up before leaving me with a ton of paperwork to read and fill out. This should be very interesting.

I also called up to Opthalmology to see if Gavin's eye doctor could pay him a visit. We had an appointment set up for this Friday (at 8:30am - ouch!) but I was noticing after Gavin's seizure that his eyes were red. After all he's been through with his eyes, I don't take any chances. She was nice enough to come down with all of her equipment to examine him in the emergency room...saving me a trip this Friday at the crack of dawn.

Everyone is so nice to us at DuPont. We feel so loved and cared for - and really feel like VIPs when we're there, even though I'm sure they treat everyone that way. We drove home today rather freaked out about this seizure business - hoping that we'll feel comfortable enough to leave the house again. Ever. But we also drove home grateful. Grateful that we were home. Grateful for the calm 911 operator, the paramedics, the policemen. Grateful to neighbors that ran over to offer help - one who was even barefoot! Grateful to Miss Sara who was showed up expecting to babysit for a couple hours and ended up staying until midnight...only to come back first thing this morning to care for Brian. Grateful for a wonderful hospital and doctors that know and care for Gavin like he was their own.


And grateful for all of you that are my Facebook friends...who followed this saga every step of the way. Knowing that you were praying for our son - thinking positive thoughts for our family - and offering kind words of encouragement - it helped me more than you can imagine. I always feel overwhelmed by your investment in our little family.

There's just never a dull moment around here...


Tuesday, February 28, 2012

Welcome to the Infirmary...


We are ALL sick. If you've been here for a while, you know I freak out when we get sick. I am a tad bit OCD when it comes to keeping my house healthy and free of germs...so when a germ breaks in and becomes an unwanted houseguest, I am annoyed. Brian is home from school, Gavin will miss a lot of his therapy - it's the pits.

As soon as Miss Sara got here this morning, I took Gavin and we ran to the store for some children's cold medicines (Homeopathic!), some baby Vicks for Gavin's feet tonight and a pre-made dinner for me and Ed. When we got back, I promptly sent Sara home to hopefully protect her from the plague. At least one of us should stay healthy!!

It hit Gavin during the night. I barely slept as I listened to his heavy breathing over the monitor. When I went in to wake him up and he was acting like a rag doll, I knew that it would be a rough day for him. And I was right. Gavin has a much harder time managing mucous than Brian. Typically I need to help him cough by using a cupped hand on the left side of his back and side. He has been listless and cuddly and he even took a short nap! All of which are out of character for him.

Brian was awesome today, quietly playing and reading when I had to tend to his big brother.


He wasn't feeling great either, but he managed to 'erk' out this weak smile when I took his picture.


And Gavin spent some time playing, too...


...but mostly was just 'out of it.'


It will be an early bedtime for both boys. Miss Sara is coming back after they go to sleep so Ed and I can make it to a scheduled appointment. As a requirement of the fertility clinic, we need to see a psychologist before the egg donor process starts. A very wise idea, indeed. She is also the same psychologist that screens all of their egg donors. She may not be able to answer specific questions about our chosen egg donor, but I do have questions about the general screening process. It should be an interesting hour tonight.




Monday, February 27, 2012

Runaways!...



Every once in a while, Ed and I like to slip out of town...telling very few people where we're going...or that we're going at all. It feels a little bit naughty to leave the boys and all of our responsibilities at home for a day or two. But it also feels necessary. Just as Gavin and Brian have their very important therapy sessions - Mommy and Daddy have their own important therapy to tend to. Carving out time for us to spend together - outside of the every day stresses and routines - is like injecting oxygen into our marriage.

This past weekend was no exception. Did you notice we were even gone? *smile* We planned this at the last minute after we realized that it might be our last chance to go anywhere for a while. Once the egg donor process starts...and if I end up getting pregnant...I'll be pretty homebound, by choice.

We feel so grateful that we have three reliable women that love our children that we can call on for times like this. This weekend Miss Kara stayed with the boys. She was our very first helper...joining our family when Brian was born.

The night before we left, I took the boys to the grocery store to get food for the weekend. We picked out a HUGE Elmo balloon to celebrate Brian's potty accomplishments lately. He's definitely showing more interest and has peed several times!


Ed and I had a wonderful weekend together. We rested...I had some spa treatments which were blissful...we ate very, very well...and we talked. All of these activities are pretty rare at home. We snapped some photos of each other...


...and I even wore contacts AND lipstick for the occasion!

I highly recommend this kind of time together whether you have little kids, big kids, special needs kids, a lot of kids, one kid, or just a very stressful life. We came home remembering why we like each other.

The only major bummer? Not even an hour gone, I got a message from home. Brian had pooped on the potty for the very first time. It's something that he's been very resistant to do...and I missed it. I half wanted to turn around and come home! Ha ha!

The other bummer? Brian seems to have caught another bug. He has a very runny nose and is pretty 'out of it'. I didn't notice it this morning when I brought him to school...but it was obvious when I picked him up! I'll be keeping him home tomorrow so he can rest. I definitely want him well by this Thursday - his very first school "Picture Day!!!"

Today has been an extremely busy day. After dropping Brian off at school, I rushed to the fertility doctor for blood work and ultrasound. I handed in all the paperwork, including our final choice of a donor, to officially start this process. We're so super excited!! It won't happen for another two weeks or maybe more. I need to go back for another ultrasound on Friday and then they will formulate a plan.

After the appointment I came home for a few minutes only to leave again to pick Brian up from school. The two of us went from there to see Dr. Trish together! I had a much needed appointment and she worked on Brian. I like taking Brian every so often for a "tune up." I hadn't told Dr. Trish about the recent food sensitivity revelation, but I didn't have to. After the session ended, she said she picked up some G.I. issues that he might be working through. When I told her that he's been on a strict gluten, wheat, egg and peanut butter free diet, she said I was on the right track. It felt to her that his system was clearing itself of everything that had bogged it down. I'm grateful that I'm back for regular treatments again. My arthritis pain is off the charts lately. It was a bummer over the weekend when I could have slept in - but my body wouldn't allow it. I get way too stiff if I stay in bed too long. I basically feel like I have flu-like body aches all day long.

Brian and I got home just in time to greet Miss Carol, Gavin's hearing teacher. It turns out that Carol has been asked to be a part of Gavin's evaluation process for the (possible) transition to Kindergarten. Although he no longer has hearing issues, we still keep a close eye on him. Earlier in the day, in between driving here and there and everywhere, I pulled out his old audiology reports and hearing evaluations to have ready for Carol. And I pulled out a HUGE bag of hearing aid batteries that my Mom wanted to donate to Carol's students...from my Dad. It's almost hard to remember that I had a child with hearing aids at this point. In a chaos filled day like today, it was nice to take a moment to remember Gavin's miracle.


Saturday, February 25, 2012

Author Unknown...

I Will Be A Wonderful Mother - Author Unknown

There are women who become mothers without effort, without thought, without patience or loss, and though they are good mothers and love their children, I know that I will be better.

I will be better not because of genetics or money or because I have read more books, but because I have struggled and toiled for this child. I have longed and waited. I have cried and prayed. I have endured and planned over and over again.

Like most things in life, the people who truly have appreciation are those who have struggled to attain their dreams.

I will notice everything about my child. I will take time to watch my child sleep, explore, and discover. I will marvel at this miracle every day for the rest of my life. I will be happy when I wake in the middle of the night to the sound of my child, knowing that I can comfort, hold, and feed him and that I am not waking to take another temperature, pop another pill, take another shot or cry tears of a broken dream. My dream will be crying for me.

I count myself lucky in this sense; that God has given me this insight, this special vision with which I will look upon my child. Whether I parent a child I actually give birth to or a child that God leads me to, I will not be careless with my love. I will be a better mother for all that I have endured.

Yes, I will be a wonderful mother.

*******************************
I did not write this. Although I don't believe (in any way) that I am, will be, could be a "better Mother"...I love how this writer expressed what's in my heart. Especially the part about waking up in the night. Ask Ed...I used to hope that someone would wake up so I had more time to be with them. Can you tell what's on my mind this weekend? I hope you're enjoying yours.

Thursday, February 23, 2012

Just Another Mommy Guilt Trip...


The other day after dropping Brian off at preschool, Miss Sara and I took Gavin to the YMCA to work on his walker skills. Their big huge gym is a great place to let him practice. And if we time it right - there's an exercise class nearby with fun music for motivation. Apparently, Gavin likes THIS SONG by a group called LMFOA or LAMFO or something like that. In other news...apparently I'm not very hip.

So anywhoo....Gavin is doing great walking. He's investigating every corner of this huge gym. Walking and walking and walking. Watch him in action...

He even had a surprise visit from Miss Janna, his teacher, who was seeing another student in the building!

Sara and I were cheering him on - with her clapping and me walking backward with my camera and my "Woo Hoo's."


After a while, he started to tucker out. We pulled out our secret weapon...the portable DVD player with his favorite "Little Einstein" movie and he got a second wind and followed the show around for a little while longer.


He even attracted the attention of a very nice man who was practicing his juggling nearby. He knelt down and talked to Gavin and started juggling for him...and Gavin stood right up! Check it out...

Gavin was desperate to get down a hallway where the elevator was. We continued to steer him away so he could walk all around the gym...but then we decided to let him try. One of our goals is to get him to steer on his own. So when he walked his walker to the dead end of a brick wall and stood there...we let him stand there. All he had to do was back up a little and turn left to get down that hallway. So we stood there staring at him - silently praying that he'd take those small little steps backwards. A group of older men and women walked by towards the elevator and looked at us quizzically. I'm sure they must have been wondering why two adults weren't helping this poor little boy in a walker who was staring at a brick wall.

And then...the unthinkable. As we stood there staring at Gavin while others were staring at us - he started to fall. In slooooooooowwwwwww motion. We didn't see it coming - but as he went down it killed me to see fear on his face. And then...THUD. The back of his head hit the floor. All the people that were standing and staring gasped and yelled out. Gavin is usually very tough so as I quickly scooped him up I confidently pronounced to our assembled audience "He's fine...he's okay!" And just then Gavin buried his head in my neck and burst into tears - even grabbing his head for extra drama. I felt just terrible.

He was fine very quickly...but I'm sure the crowd walked away looking on their phones for the number for Child Protective Services. Sara and I wanted to tell them - "We're trying to get him to learn how to steer!" And I have relived that moment a thousand times since. Mommy guilt is such a pain in the butt.

I'll be taking a writing hiatus until Monday. I'm going to focus my attention on my husband. Together we'll prepare our hearts for Monday which will be day one of our next adventure. We're coming up on our eighth year of marriage. Boy, have we had a LOT of adventures together.


Wednesday, February 22, 2012

A New Journey...


Ed and I are two very lucky people. We feel lucky to have found each other...and lucky to have created two very beautiful, very happy boys.


Gavin and Brian adore each other. Lately, Brian has been trying so hard to interact with Gavin. He'll take his hand and try to lead Gavin to do what he's doing - and sometimes gets pretty bummed when Gavin doesn't budge. The other day Ed even found Brian attempting to play hide and seek with Gavin. Brian went into the hall closet which has a sliding door...and Gavin crawled up and pushed the door open to reveal Brian in a fit of giggles.


We love having two boys. And as you know, we have tried and tried...and tried...to have a third sibling. Since our wedding day we have endured eight miscarriages and Darcy's tragic stillbirth due to a cord accident at 5 1/2 months. I've written before about how dreadful infertility is. But I've also written about hope. And for some strange reason...I still have hope.



We are embarking on a new journey. And, once again, we are taking all of you along with us.


Ed and I have decided to try one last time for a baby. And we have chosen to use an egg donor. I felt if we were to try again for a pregnancy, this was our only option. My eggs seem to be on the crappy end of the quality scale so it's likely we will keep getting the same, sad result if we use them. But because of the generosity of one woman (who is an anonymous donor) giving us one single cell from her body, we will have a MUCH better chance of getting - and staying! - pregnant. The success rate using a young, healthy woman's eggs are over 50%. We are very excited...but we also decided that if this doesn't work, we will be done. For real this time. And that will be okay.


We have also decided that this will not be a secret. If we are lucky enough to get pregnant, this child will always know about the wonderful angel that lent us a cell from her body. He (or she) will learn that because of that one cell, Mommy was able to grow him in her tummy...nourish him...give birth to him...and love him. Egg donation is a wonderful gift. I hope that you'll pray along with us that we'll be delivering that gift in less than a year.

In other - equally amazing news, Brian peed on the potty tonight!!! He told me he had to go...and he really went! Boy did we have an exciting dance party tonight at our house. For many reasons!!!!

Yay, Brian!



As always, we appreciate your support, prayers and love!

Tuesday, February 21, 2012

A Miraculous Mystery Named Gavin...


It's time for me to get back on track. That, for me, means making sure that Mommy is taking care of herself. And that means - getting back to Dr. Trish. If you're new to this blog, I've written about who Dr. Trish is in previous posts like THIS ONE. She is very special to me...and to our family...and especially to Gavin. I have been suffering with pretty serious blood pressure issues for the last month. I'm on my third medication which is just absurd. The first made me feel so sick for about an hour or so after I took it - and I had to take it three times a day. It was then changed to a long acting medication that I could, thankfully, take once a day - at night. Well, with blood pressure readings of 175/112...it clearly wasn't enough. So I googled a Cardiologist and booked an immediate appointment for myself. He promised me that I'd be okay...allayed my fears that I'd have a stroke at home alone with the boys...and put me on a twice a day beta blocker called Labetalol. And he admonished me for taking my pressure rather obsessively at home. So no more of that fun. The new med makes me feel very sluggish...and kind of out of it. For this...and several other obvious reasons that I haven't been shy about in this journal...I am back to seeing Dr. Trish. I'm also bringing Gavin back for regular visits. If you remember, each week that Gavin would see her he'd make a tremendous gain in one area. I can't wait to see what he does this time. I'll be going twice a week - and Gavin once a week.


Gavin saw Miss Maggie today for his feeding therapy. It's the one area that he has made such slow progress. He just resists eating solid food and we're running out of ways to trick him to do it.

Today was no exception. I try not to get down when Gavin seems to be at a standstill with any of his therapy. He has come such a long, long way. And frankly, so have I as his Mom.

After last week's transition meeting with our school district, I have been sweating over a form I need to fill out for a Psychological evaluation. For Gavin, thank God. A Psychologist would need HAZARD pay to evaluate ME!! This form brings me back to my previous pregnancies and losses...my pregnancy with Gavin...details of his life after he came home from the hospital (Ummm...can I add four extra sheets?)...and tons of other questions that require lots of thought, lots of pen ink and lots of deep, cleansing breaths. I was grateful to have Miss Sara downstairs entertaining Gavin this morning while I hid in my bedroom so I could concentrate on these forms. Pages and pages of questions. But it got me thinking...I wonder what we were doing on this day way back when Gavin was a baby. He would have been five months old. When I went back to what I wrote on this day in 2008, I saw that we were still in the hospital. We were nearing the end of an eight week stay and I was close to the end of my rope. Gavin was being tested for possible Mitochondrial Disease. It turned out that he does not have that, but it was a scary proposition by his doctor. When I re-read this post - it broke my heart. But it also made me feel so, very grateful. We really have overcome so much...and Gavin has surpassed so many expectations. I could never adequately convey in this Psychological evaluation how amazing this child is. Or how much is in store for him in this life.

Enjoy this walk down memory lane...
***********************************

I've always been honest in this journal - so I won't make tonight an exception. I nearly cracked tonight. I wrote my journal entry early because I knew at 6pm the doctor was coming in to do something painful to Gavin and I didn't know how the rest of the night would go down. Well, it didn't go down well.

I'm not going to go into what they are testing for because if it turns out NOT to be this, then nobody will have worried for naught. But, the doctor had to draw arterial blood gases to test for this. If you don't know, they take blood from the artery on the inside of your wrist. And if you've never had it done (I have) it's painful - even for a tough adult. So I prepare the crib and help both hold Gavin down and try to comfort him at the same time as the doctor takes the blood. Gavin screams in terrible pain - it's not coming out so the doctor keeps trying...Gavin is hysterical and it's hard to keep him still...the doctor KEEPS trying....then he gives up. Time to try the other wrist. So I pick him up and try to comfort him - then I lay him back down and hold him down again. The doctor starts to try the other wrist and before he can even get the needle in, Gavin - who is already hysterical - throws up. Then he starts to seemingly choke on it. It is so painful to watch knowing there is nothing I can do. We clean him up and lay him back down...he tries again. Still can't get enough...we'll have to try again tomorrow. The VERY nice doctor and the VERY nice nurse leave the room and I am alone with my son. After a half hour of screaming his stressed body just shuts down in my arms. He's like a zombie and even though I'm holding him, I feel the need to check him constantly to see if he's breathing. I am completely sobbing the entire time. I want to go back to grade school when I didn't have much to worry about. I want to go back to high school - and I HATED high school. I want to go back to being a flight attendant and travel the world. I want to put Gavin in his car seat, tell the nurse I'll be back in a few hours - please watch him - run out of here and drive to Nordstrom and buy an insanely expensive dress to wear nowhere. I want to stop being a Mom...just for the night. Just as quickly as those obviously not really meant fantasies run through my mind, Gavin wakes up crying. And screaming. And moaning. And screaming some more. I try to rock him. I try to bounce him. I need to feed him and he'll have none of it. It's not an option because he needs the calories so it goes in the tube and he cries through it all. After that's done, I put him in his stroller and push him back and forth in the room - pacing like a caged animal. We can't leave the room because he's on isolation precautions from the rotavirus. I try to sing to him, reason with him...not knowing if he can hear me. Quickly realizing that he couldn't hear me over his own screaming. I've never felt so insecure...so helpless...so unsure...so sad. If anyone had come - anyone - and offered to hold him, I would have quickly grabbed my coat and left. And I never do that - ever. I would have driven to Walgreens to buy soap or lightbulbs or milk....nothing, but somehow something I need. I'm clearly losing it. But if anyone had shown up, even Mother Theresa herself, I wouldn't have left. I love this child with a fierceness I have never known. I love this gorgeous boy who now plays with his feet and shows me dimples and makes me smile. I adore my son who is a mystery to all who treat him, an enigma to the best geneticist and best doctor at DuPont. I would give my life, if asked, for this boy with "bilateral sensorineural hearing loss, dysmorphic features and severe reflux". I have been given a child who is a miracle - yet a mystery to everyone but God. I will learn something great from all of this. And tomorrow I will be fine. But tonight I want to quit being a Mom. And that will have to be okay...just for tonight, especially since the night is nearly over. Gavin has finally fallen asleep - so I will go eat my dinner, get in bed, and pray for tomorrows blood draw to go better, for Gavin to be peaceful and for me....for strength.



Monday, February 20, 2012

Chores!...


I decided that the boys should start doing some simple chores. Little things like "Feed Fishie" or "Practice in your walker" or "Give Mommy a massage". Oh wait, that last one is from Ed's chore chart.

Well anyway, I couldn't find any charts online that I liked. Some of them seemed too "old" for the boys. And most were just for one child - not shared by two. So I made my own with poster board, post it letters, scrapbooking stick on bling for the icons, card stock and velcro dots. Oh and a black sharpie to make my pretty uneven squares. What can I say - I'm a chore chart rookie.

I thought Gavin and Brian could each have an "icon" that would represent them on the chart. I chose a smiley face for Gavin - no brainer.
And I chose a cupcake for Brian - pretty obvious as that's one of his favorite things.
I didn't want to make "permanent" chores - so with velcro and some card stock I created chore cards that could easily be switched with new cards down the road. Each day as the boys accomplish their tasks, they place an icon in the square for that day. And I stuck the icons (that come with a sticker on the back already) onto hard cardboard to make it easy for little hands (or big, arthritic hands like mine!) to pull them off the velcro.

Brian gets excited to do his chores because he loves getting to put his little cupcake in the square. And to be honest, Gavin's chores are really our's. It is sometimes easy to forget to work with him each day on the many things we need to do for him. This chart is a daily reminder to make time for putting him in his walker...having him try some solids at a meal...and doing an activity at the table. Today he worked on the iPad...

The chore chart isn't Pinterest Perfect, but I'm pretty proud of how it turned out! It's just how I wanted it for our purposes. Now...I just need to find the perfect place to keep it!

This morning we had a blast. Brian was off from school for President's Day so Miss Sara and I took the boys to the YMCA for Gavin's "Superstars" class! It's held on Mondays and Fridays in a special room that is FILLED with all types of special needs equipment. There's also other things like trampolines, padded gymnastic mats, a ball pit, a jump house, a balance beam and a few slides. They have several people supervising and at least one was a Physical Therapist that is there to help you with anything. We mostly did our own thing and had SO much fun. These are less than HALF of the photos I took. Don't underestimate the difficulty of bouncing on a trampoline and photographing your child at the same time!


Brian's favorite thing was the ball pit - he could have played in there all day!!

And Gavin's favorite activity was the swing. He was so happy and content!
I'm seriously going to look into the possibility of getting one for our house. I'm sure it's unlikely...but it can't hurt to look, right? I mean check out this video and you tell me if you wouldn't feel the same way!!!

Brian loved the swing, too, as you can see...

Gavin even sat up and held onto a swinging 'pony' and tried out a different type of gait trainer while we were there.

And Brian got out a LOT of energy. It really was so much fun.




Sunday, February 19, 2012

This Time Last Year...


On this exact day, one year ago, my oldest niece got married. Emily Grace Vaccaro married Josh Locke in one of the most beautiful weddings I've ever seen. On a snowy day in New Hampshire I cried as her Dad - who has been in our family so long I don't bother with the in law part of brother - walked her down the aisle and gave Josh her hand. Josh is an amazing addition to our family and I wish them a happy, happy first anniversary!!


I remember feeling so grateful, albeit nervous, that my Dad attended the wedding. It's so nice that he was there for at least one of his grandchildren's weddings. I'd like to personally thank Emily and Josh for deciding to get married so young. Ha ha ha.

I haven't written the past few days because I've been a bit down. Big surprise lately, I know. I started remembering what was happening this time last year and when I pulled up the photos I found these...


These photos mean so much to me. They show the type of "Pop" my Dad was to my children. He would always apologize to me - wishing he could do more to help me or more he could do with them. I have to say...I never felt jipped. From my Dad's first stroke - six months before my wedding - when I felt afraid I would lose him - nothing, and I mean NOTHING else mattered. I would have him any way...as long as he was here with me. With all of us. I was so grateful that he was able to meet my children...hold my children...give me parenting advice...cheer Gavin on with his every accomplishment...and play like this with a two year old Brian...


Since my Dad died I've had an interesting, repeating experience. When I mention - or someone finds out - that my Dad has passed away, they often say the same thing. "Was it expected?" or "How old was he?" Both of those questions, in all honesty, drive me crazy. First let me say...I understand the intentions behind the questions. And I can see the social nervousness that would lead to asking that question. Perhaps the person is trying to feel me out - as if my Dad's age of 82 would mean that it might not have been much of a shock for me.

I am here to tell you - if you haven't lost a parent yet (and I hope for most of you that is true) that it is never expected...no matter what. The age doesn't matter. Although sometimes it might feel like a blessing to let them go, it is still just as hard to say goodbye. I cursed like a sailor when my sister called me to say my Dad was in the hospital and I needed to come as soon as possible. I didn't believe her. His massive stroke that night was a shock. We had about three more days with him in the hospital when all of us, truly, prayed for him to let go. But the moment he died...and the moments since...have been so awful. I miss my Dad so much. And I now feel the same social anxiety as the people who ask me "was he old?" "was it expected" with my own Mother. Tiptoeing. Not sure what or how much she needs. Trying not to smother. But also a terrible guilt that I don't see her enough. I barely see my own mailbox at the end of my driveway with our schedule around here...but I still feel such guilt. I'm sure that's natural.

So if you're looking for some advice, try to hold off on the phrases "Was it expected?" or ask how old the person was that passed away. Because you're always a little girl or boy to your Mom and Dad. And them dying, at least to this little girl, is never a good or expected option. It is a profound, profound loss.

This weekend was low key. We casually worked on some potty training - but not much has changed in that department. If I can catch Gavin before goes, he will absolutely go in the toilet. For him it's truly just a response. But for Brian, it's emotional. It's very interesting. I will ask for discipline from Brian - he will have to tell me when he has to go. But it will be ME that will have to be disciplined with Gavin - ever vigilant and expecting when he will need to go until we can teach him how to communicate it to us! Yikes...what a challenge.

I also attended a lovely baby shower! Our neighbor's son and his wife are expecting their first child - a little boy! I was pregnant with Brian at their beautiful Fall wedding in 2008. I love a baby shower. I love giving baby shower gifts - picking out OUR favorite things for their new little one. We just adore our next door neighbors and are so excited for their first Grandchild to arrive. He'll be sneaking onto our swingset before you know it!!!

And today we went on our usual weekend grocery shopping trip. I had Brian and Ed had Gavin. We split the list and met up at the end. Brian has a new obsession with asking me to dance. Well, just about every aisle he looked at me when he heard the piped in music playing...lifted up his arms and wanted to dance. I think the people in the store must have thought I was a bit cookoo. But, in my opinion...ANYWHERE is a good place to dance. And ANYTIME is a good time to dance. Especially when you have your child as a willing partner. So we had a very long shopping trip...dancing through Wegmans and getting lots of looks and laughs. As it turns out, we made a lot of people smile. And we even inspired one couple to dance with us! Brian certainly knows how to boost his Mommy's mood.

Last week there was a little, itty bitty controversy in the comment section of this blog. My response to all of it is this:

I always appreciate comments...good and bad and neutral. And I do appreciate people jumping to my "defense", although it wasn't necessary. I just want to remind you, as readers, that my journal will probably never change. Although you might be entertained when you come here to read what I write...I am not writing to entertain anyone. This has always been my "private journal" that I decided to open to the world. Something that you might find "offensive" may just be the thing that 27 people write to me about - grateful for knowing they aren't alone or finding something that will help them. Something that you may think I'm crazy to admit - may just be the thing that 10 women write to me to say thanks...they thought they were the only one. And something that might seem embarrassing to admit? That might be the thing that 30 women will notice and have one of those "OMG" moments...and then they will make a change in their child's diets or therapy or whatever.

I just write.

You can walk away with what will help you, make you happy, entertain you, make you think, make you feel better or make you realize this blog isn't for you. All of which are okay. I just write. Know why? Because along the way my experiences might make someone feel better...or help them through something or teach someone things I've learned along the way from others. But mostly I write for my children. I have a box of letters (and a head filled with lessons) from my Dad. One day I will be gone...and all that I wrote will be left for my children. Including the post about examining their poop...which is an important job that should not be taken lightly. I jest.

This blog is one, big, huge love letter to them.

I love you, Gavin and Brian.


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