Carpe Diem

Carpe Diem. Seize the day.

I have loved this quote ever since hearing it for the first time in "Newsies", a Disney musical movie I watched in Mrs. Mohs' music class.

I got a free expression from Uppercase Living (vinyl art) and the one I chose was "Carpe Diem." That was well over a year ago. I just found it again. I had envisioned a big project back then, but when I found it I thought differently. I decided it should go into what is now my favorite room of the house. The front sitting room. It is full of sunlight, no TV, no noise and I spent so much of my late pregnancy there working and trying to find calm. It is now my favorite room. Above the big windows I hung "Carpe Diem" in a soft silver. It's a perfect spot as every time I walk by those windows and smile into the sunlight, I look up and see that saying. My goal is to have it be a reminder each day to me and my family.

But I have to say, since I put it up it really has only made me laugh.

Case in point.
Last week I got Cooper signed up in the gym's daycare so that after I took big kids to daycare for the morning I could go work out. I printed the class schedules and highlighted the ones I want to try...Zumba, Bodyflow, Bodypump, etc. After 6 weeks of nothing but no sleep, poopy diapers, sick kids, traveling...not to mention the months before this maternity leave of long pregnancy, hard labor, tons of work both at work and at home...it's time for me to give myself an hour up to three times a week. I want so much to get healthy, take some weight off and hopefully feel better (especially my knees!). Everyone says, "You have to take time for you," and "You have to put your marriage first and take time together." I wonder what kind of world all these people live in. But then, that's another blog topic.

Anyway, so I was poised and ready to attend Step or Bodypump on Monday morning. Actually, I was looking forward to it. And believe it or not, I felt that way BEFORE Kai's grandpa called me "the bigger girl with dark hair" and his grandma poked my tummy and asked, "What's this?" over the weekend.

But alas, all my planning was in vain. Grady has strep throat along with a double ear infection. He has had fevers up to 103 before we get them to come back down. I wonder how far they'd go if we'd let them. But he is simply miserable.

46
That's the number of days between doctor visits for Grady, for the same thing - ear infections that cause complete misery. That doesn't take into account the 2 weeks it took to get him well after the first antibotics (and the week of fevers and sickness before we went in that time too).

As I was getting my baby from his chair to nurse after giving Grady some ibuprofen yesterday afternoon I glanced up at my saying. Carpe Diem. A strange mixture of emotions took over.

Frustration that no matter what or how hard I try, there is no way I can take time for myself. It just doesn't work, and with one more, I expect it will be years.

Sadness that my kids seem to have so many issues all the time. Sadness for them because it's just not fair.

This day, like the many before it since I hung that saying, I had no ability to Carpe Diem.
Can I seize the day with baby puke all over me, and even pee half the time?
Can I seize the day when no matter how many attempts I make I can't get a shower all day?
Can I seize the day when I look at my incredibly long to-do list and know that I may never accomplish half of it?
Can I seize the day when my maternity leave will be coming to a close and I'm wondering how I'm going to add work into this mix, not to mention work while brining my infant with me?

And then I laughed.
Carpe Diem.
That's what I do every day, and always have.

As I wallowed in self-pity for a short time, thankfully that new thought emerged.
I can't seize the day by doing what I want when I want, I can't seize the day by putting myself first, and I can't seize the day by scaling mountains, taking cool trips, or accomplishing huge feats.

But every day, no matter the circumstance, I put my best foot forward. I try to make it the best day I can and I try to keep a positive attitude.

I think that's the real meaning of Carpe Diem.
Seize the day - do the best you can that day with what you have, and be thankful for getting yet another day here with those you love.

Frustration at Its Finest

Tonight I sit at this keyboard on my couch.
I am watching my nearly 4 week old son sleep...then not...then sleep...then not.

I am frustrated.
I am frustrated because I am too tired.

I am frustrated by how hungry my baby is at this time of day, when it is a struggle to get him to be awake enough to nurse both sides all day long. I am frustrated that he is a difficult baby to burp, and therefore he gets tummy aches and pukes...and then needs to eat a bunch more.

I am frustrated with the fact that he needs only me so much. But if I switch to formula to even the care duties and sleep, I feel like a failure and a bad mom for not giving our son my best. I am frustrated by the fact that I am feeling so selfish about this rught now.

I am frustrated by my long list of projects I'd like to do, or we'd like to do, or more so the inability to get anything done these days.

I am frustrated by myself for thinking there would be opportunities to get things done. I knew better.

I am frustrated because our outing at our friends tonight went about as well as it did last year when we tried it. Which, by the way, is not well. I wonder if we will ever get to the point of other families where you don't have to have constant vigilence...

I am frustrated that as the oldest, Kaitlynn so often gets the short end of the stick. I was in her shoes once and it bugs me when she's rightfully discontent.

I am frustrated that I have so much to get out of my head. I want to write so much about Cooper's birth, and what's rattling around in my head about that. Some of it is complete craziness, some of it is fear, some of it is amazement and awe...all of it is very real and my fingers want to unleash it from my brain.

I want to write about my last ever vist to Maida and Jack's Bar - a business my grandparents took over in 1964, with my uncle running it from 1986 until now.

I want to write about saying goodbye to my childhood home - and watching my parents things being sold at auction from our lawn. About the feelings that come with watching a "kid" you used to babysit, along with his wife and one-year-old, wander through "your" empty house as they dream about soon making it "theirs." About the odd serenity of spending one last night in a big, empty house alone...with a fussy baby by your side and a floodgate of memories running through your head.

I want to write about my son, his amazing progress lately despite the Down syndrome, and our incredible "itch" to have him talk. Things are difficult with 3 under age five...when 2 of them don't speak.

I want to write about our first IEP meeting with the school district.

Someday, I hope to be brave enough to write about a dark spot in my life - and what it is like trying to cope with it when others don't understand, and I'm continually forced to "handle it" with grace.

I want to write about all of the "lasts" I've experienced in the past three and a half weeks...my last childbirth, our last child entering our family, our last PT visit with Sharon, my last trip to Maida, my last trip "home..."

I am frustrated because I don't have the time or energy to let everything in my head flow out my fingertips. And so, day by day, more blogging piles into my head. It's like a manuscript of my life as I live it...a narrator droning on in my head.

But even with the exhaustion and frustration, I am grateful. This is my life. And it really is a good one.
I am going to attempt bed now, and I fully expect to wake up on the right side of the bed tomorrow, or probably several times with a hungry baby!

I'm Not Stupid...

I am a rational, competent human being. Over the years, I've learned that medical professionals can make me feel like I'm the complete opposite.

This week has truly been a week from hell. On Sunday, my daughter began having hives. This followed the previous weekend of fever, inscessant coughing and runny nose. She was miserable the weekend before. As we ended the second weekend, she seemed to be feeling better, but then she started with these hives. Monday morning, I wasn't 100% sure what they were and I wanted to make sure she wasn't contagious before she went to daycare with the other kids.

We went to her pediatrician. The one we've had since Kaitlynn was a baby has never had children, up until 2 years ago. She's very black and white, and what she says goes. That's pretty much her attitude, even though she's quite laid back otherwise. I've enjoyed talking to her over the years as I generally felt she made time for us and, for the most part, listened to my concerns. Or rather, her nurse did. I loved her nurse - "Melanie." I'm pretty sure we stuck around for her. She's been gone almost two years now.

On Monday, my daughter's hives looked a little bit more like chicken pox with a few weird thick spots. Her doctor found that she had a double ear infection, and said she had hives. Nothing more we could do for those but to continue the benedryl we'd been giving her since the day before. She put her on an antibiotic for her ears.

By Monday night, they were intense...and Tuesday morning they reached "absolutely ridiculous." They covered her entire body - in between fingers and toes, in her hair, up her lip...and they weren't little. The welts were unbelievable. I continued the benedryl as directed. That day was rough. We dropped Grady off at daycare and a little boy from her class saw her and was freaked out. She stayed home, and even went to work for awhile, with me.

The benedryl wasn't cutting it. We were putting ice packs on her feet because it hurt for her to walk and bend the skin around her feet. It hurt for her to bend her knees (the backs of her knees were covered).

I'm not sure what terminiology I should use for day 4. We woke up Wednesday morning and they were insane. We had started a food journal from the previous Friday on just the night before for her. After having not slept for many nights as I am basically 9 months pregnant, and dealing with my son's respiratory issues - when he gets a cold, it's never just a "little" cold (in fact I just took a break from this blog at 3 a.m. for benedryl-D and an albuterol breathing treatment for him)- waking up to day 4 was about all I could handle.

I had an OB appointment early Wednesday morning, but I called the pediatrician again and left this message, "This is riduculous. She is getting little to no relief. It hurts her to walk. They are covering her entire, and I mean entire, body - obviously the benedryl isn't working and there MUST be something else we can do. Please call me ASAP, I am very concerned and I just don't know what to do."

I was very concerned because I couldn't figure out what was the cause. Many times you just can't figure it out. But they just got worse, and now they were at her mouth. Was she continually reacting to something at our house? Would she eventually end up in anaphylactic shock?

I gave her benedryl. She wanted to go to daycare/preschool as it was library day. But she said to me, "I'm worried. I think they'll be scared of me." Her teacher tried explaining to the kids what was going on, and brave little Kaitlynn stood up and answered their questions really well. My heart broke for her in that she had to deal with all this unwanted attention, and was incredibly proud of her at the same time for her strength and ability to handle the situation.

Kai and I went to the OB appointment. 70% effaced and dilated to 3. Great. Really...any time. And I have two really sick kids. And my pediatrician is NOT calling me back. Perfect.

I lost it. My rationality flew right out the window. My gut was telling me this was no ordinary case of the hives, that I needed to find relief or figure something out for her soon - and I couldn't get the pediatrician to call back. I called and made an appointment with another doctor for 1 p.m.

By close to 11 a.m. the pediatrician's new nurse called back. "I visited with the doctor and she said she had a conversation with you on Monday about how this could last for 6 weeks..."

I knew it. I knew she was going to make me feel like an over-protective, hypochondriac mom. Check her records. She hasn't been in forever, because I'm NOT that mom. I went into bitch mode.

I felt bad for the poor new nurse, Amy. It wasn't her fault. I was annoyed with the doctor. I explained things as detailed as I could and she could hear the anger and frustration in my voice. When I got off the phone, I was glad I was going for a second opinion.

The second opinion was great. We reviewed her allergy information from 2 years ago. We went over everything in the last week. We discussed the antibiotic she was on that I was questioning. He started her on Zyrtec along with benedryl and switched her antibiotic. He told us to go to a bland diet and watch everything. I felt good. We had a plan and he listened.

Then by 2 p.m. nurse Amy called again. "I visited with the doctor again, and she thinks that Kaitlynn should see a dermatologist. I got one to come in early for you tomorrow morning at 8:45."

So I told her we just finished with a second opinion, and he got us all set up to see the allergist in just over a week again for follow up for her. But that I really like the dermatologist option. I wouldn't have been able to get an appointment for 6 months or better, but she got us in the next morning. I think she was taken back by the fact that we had a second opinion, but she knew I was thankful for her effort.

I wasn't sure if we'd go to the dermatologist or not, but I kept the appointment just in case.

I didn't have the baby, and Kaitlynn woke up on day 5 just as bad, if not worse, so we went.

I said, you'll see in her chart this is her 3rd appointment this week. Here are pictures from yesterday morning, here she is this morning with an hour's worth of benedryl under her belt.We covered everything and I ended with, "I just don't know what to do."

I kid you not. These were his words.

"This is what you do. With a case this severe, she obviously needs more help than the standard treatment. You NEED to get this under control for her."

Funny. That's what my gut has been saying all along.

We talked. He's pretty sure it's viral, related to her cold. He upped her Zyrtec and started her on a prescription anahystamine. What do you know...there IS something stronger.

I called nurse Amy and thanked her for her help and told her I thought we were on the right road, finally.

Day 6, a full day into the heavy duty plan - miraculously she's looking and feeling much better.

I hate feeling helpless. And that happens a lot in motherhood. I hate when people don't listen to my rational, competent self - making me feel crazy. And I hate when I have to pull the bitch card.

But I'm a mom. And I guess sometimes that's my job.

Ooooooohhh Baby

It's another sleepless night. I can't even believe I'm typing as my hands are half-numb with random shooting pain up my arms. This has been an interesting journey thus far. From being resigned to the fact that our family would be just a four-some as we moved into fall last year, to now, being just a couple weeks - or even days - away from adding another member to our family...it really seems like a total blur.

It's been a rollercoaster of emotions, at least on the days that I've been able to be aware that I'm pregnant. We're so busy that this pregnancy has just flown by.

It doesn't mean that I haven't had the opprotunity to explore my thoughts and emotions about it from time to time. Each ultrasound (we've had three) has been bittersweet. Each simple, beautiful memory that I reflect upon from Kaitlynn's birth is shadowed by the drama of the memories from Grady's birth. Nothing went "as planned" that night.

Maybe that's why this time it feels good not to have time to dwell on things or try to make a plan. Day by day is how I've moved through this pregnancy.

At my 33 week appointment, I went alone. This is the only appointment I've had to go to by myself this pregnancy. I've purposely scheduled my appointments so Kai and I can go together. He's always wanted to be so involved, something I really appreciate. The one time he missed during my pregnancy with Grady was the time I got the news about the EIF. The "nothing" EIF that actually turned out to be a foreshadow of our drama ahead.

This time at my "alone" appointment, I broke down. I told my doctor that for some reason my anxiety was getting the best of me, and it was. I hope and pray for a smooth and safe delivery, and for a "healthy" baby. A birth scenario not surrounded by drama.

"I know there's nothing I can say," she said to me.

"I can say that everything looks good. The ultrasound looks terrific. Your early testing checks out great."

I nodded as I cried.

"But, I know I said that with Grady."

I nodded as I cried a little harder.

"And I know that until you hold this baby in your arms, see him for the first time, you aren't going to feel just right about anything."

And it's true.

At 37 weeks I am not feeling overwhelmed with anxiety. I know that whatever comes our way, we can handle it - together. I still pray for my "drama-free" and joyous birth.

Last week, the ultrasound estimated this baby to be 7 pounds 6 oz at 36 weeks. My other two were a mere few ounces more than that at birth at 38 weeks (10 days early with each).

They think baby boy is going to be large.

This pregnancy is very different in so many ways from the others. In fact, I was measuring 40 centimeters at 35 weeks. Instead of being stretched too far with amniotic fluid, this time I'm being incredibly stretched by a big baby. My doctor does not want me to go to 40 weeks for fear of the size of this baby.

I haven't been able to breathe well for months now, but I start to see stars now without really doing anything. I've had carpal tunnel since Christmas, although in the last couple of weeks it's really kicked into high gear. I have fluid retention, it just doesn't want to leave. When I sit I often cut off the bloodflow to my legs and my feet turn purple and go numb.

I, by the time of this post you can tell, am really not sleeping. I've actually been awake more than asleep tonight, and it was the same story last night.

I'm already effacing and dilating, cramping with some very strong Braxton hicks contractions.

I wonder if my body is going to even make it another two weeks, and I pray that the grandmas are ready with bags packed to be able to head here at any time of day or night. They both are far enough away to be nervewracking.

But I am excited.

I am excited to meet this little boy, to find out who he is and who he will be. To have him join our family and watch his big brother and sister bond with him, and to watch his dad be amazed and proud of another little life that will complete our crew.

I am excited to be the best mom I can, again, and to feel my heart expand to even greater depths than I've ever known to be possible.

This thing called life never ceases to amaze me.

I am so blessed and lucky to await another miracle.

Winds of Change

I had planned to sleep in this morning. I went to bed early, right after my kids last night because of pure exhaustion. At eight months pregnant, I am tired physically.

I woke up to the sound of the toilet lid slamming shut. I planned to investigate, but by the time I could get myself propped up enough in bed to stand up, the pitter-patter of size 12 girl feet had sounded back to her room. "Good, she's going back to sleep," I thought. "She needs it."

I decided to get up anyway. I walked into the hall and that's when I heard it. Unbelievably loud howling. It's the winds of change barking at my door...again.

Everything around me is evolving, which isn't entirely bad. With change comes so much good. Like the change of seasons. Soon the grass will be green, my flowers will be up, and the sun will be here more often than not. That is good change.

At the same time, my work is in flux. People are retiring, an important program has been stripped, and there is going to need to be restructure, development and a lot of change. I work in communications, so that usually means that I get the job of trying to make sense of what's going on, and then help communicate that so everyone else understands what's going on. I've been doing that nonstop for two weeks and I have to admit I'm a little burned out from it all.

I just found out that my last trip home with the kids last year was actually my last trip home...ever. My parents are having their sale at the end of April, to be out of my childhood home by mid-May. Thanks to an impending birth, I will not be able to assist in any of it, or say goodbye to "my house" as I originally had been planning. I am sad about this, even though it's "just a house."

My husband and I have decided that as this new little one joins our family, that we will be complete. We can't afford, nor do we have enough hands or mental stamina, to take care of any more children at this point! So, as of today, we are making that decision official at a doctor's office. I am glad to be at this point, but it is an interesting turning point in our lives. Suddenly, I feel old.

And the kids. My goodness. Changes every day. I'm so blessed to witness them, but I kind of miss the "Dora" days with Kaitlynn and even sometimes the days before Grady expressed his opinion so boldly! :)

There's so much more going on, but basically the point is, everywhere I turn, change is happening around me. And for once, I'm not the stimulus making the decisions on any of this change. It's generally easier being the change agent.

In the midst of my mind-chaos yesterday, I had a delivery to my desk. I had placed my very first lia sophia order a little while back. A friend at work had a party I couldn't attend, but I saw this beautiful necklace in the catalog. It was small and not expensive, so I decided to treat myself with some of my Scentsy money. It is something I've wanted for a very long time, but just couldn't ever find quite what I was looking for.

Then it arrived yesterday afternoon. My beautiful sparkling silver necklace with a little cross dangling from it. It reminds me a little bit (only shinier) of one my mom used to wear. I put it on immediately.

Because of the timing, I am certain it was a message. As we are in the middle of Easter season, I'm to remember the changes and sacrifices Jesus made for me, and really, HE has my back. I'm not lost in a sea of change - in fact everything is happening the way it should, even if it feels like chaos now. It's several new opportunities for life lessons and I better enjoy the ride because no one knows when that ride comes to an end for themselves.

And as I finish this blog, I am noticing that things have calmed considerably outside...coincidence?

More Than Just "Services"

I first became aware of the world of Early Intervention services when I was in my early twenties as an education reporter for the local NBC affiliate. I learned much about Early Intervention and and the Early Childhood Education Program through our school district. And even though it was my job to learn about these things to tell a good story that helped our viewers understand our community and world a little better, I never could've grasped it all as well as I do now - on the "other side"with a child with special needs. Once again my different "lives" collide and all of that education I received then has come full circle.

I recently wrote this letter to Michelle,OT, and Carrie, Speech/Language, who work with our family through Early Intervention, and have since Grady was just weeks old. Sometimes those early days are nothing more than a fog of a memory, and other days I remember so well the feelings of being completely overwhelmed by it all. And even if Early Intervention was sometimes part of the overwhelming sensation, I am so very thankful it has been part of our lives, and even one step further - that these specific people have been part of our lives.

Letter:

I just wanted to take a moment to thank you for the work you do. Not only to help us figure out how to help Grady and function more effectively as a family unit where special needs are concerned…but for the assistance in advocating for us as well.


You both know how bothered I was by Grady being the only one in his class who didn’t get a choice in the cereal he got to eat a few weeks back. I felt like I should say something, but just left the center in tears instead, with the knowledge that we are going to run into this scenario in many different formats for the rest of our lives. I sometimes have a hard time distinguishing when advocating is most appropriate, and when I should just let my over-emotional self ponder the situation and realize that I can’t fix everything.

Anyway, what I’m trying to get at is that this morning the cereal was in the hall (we were running a bit late). Amy was out there too and as I got Grady’s coat off she asked him if he wanted cereal. He nodded his head, “yes.” I turned to hang up his coat with plans to lift him up to look at the cereal so he could choose which one he wanted.

When I turned back around, Amy was already doing that…asking him which one he wanted. He smiled at them all. I named Kix, Cheerios - didn’t get any further and he emphatically pointed to the Cheerios. She said, “Okay! Cheerios it is. Go in and I’ll bring some to you.” He was so satisfied with himself that he just proudly marched himself over to the table and sat down.

I am 100% certain that this wouldn’t have happened without your gentle encouragement with the staff during your visits there. To have them acknowledge his right and ability to choose was elation for me, but seeing what it did for Grady was some kind of wonderful I couldn’t have anticipated.

Thanks again. What you do makes a HUGE difference in this world.

Michelle,Carrie, and all who dedicate your professional lives (and very much personal, too) to helping us all in a very important and special way, you have my utmost respect and appreciation.

The Label

We are currently at a crossroads with Grady, our son with Down syndrome.

He will turn three at the end of July. This means that although I've finally grown accostomed to (and very, very thankful for) Early Intervention services for Grady, it is coming to an end. The next chapter opens, which means a whole bunch of testing on him and decision making on our part.

The decision making is not easy - mainly because we have no idea what we're doing or what we should be doing. Part of this process is deciding whether or not to continue with developmental disability case management services. There are two very different schools of thought on this, and we didn't know which was the right one to take for our son. Knowing that our case manager hasn't had to be overly involved with us for the past two-and-a-half years makes me think it maybe isn't important for us. But when you talk to other families and think about all the "what ifs," then you think maybe you should look into it.

We did go through with testing to see if he would even qualify at this point. It included an hour of testing with a psychologist whom we met in that moment, in a big, sterile, empty and unfriendly room. The doctor herself was very kind and did the best she could with the task that legislative bodies have handed to her. But it was a frustrating and disappointing hour as Grady refused to cooperate, and much of it was beyond his level of understanding. And with the testing, the child must fail in the same exercise four times before you can move onto the next one. Well, when our stubborn Grady says he isn't going to do something, once is all we need. He was annoyed with the continual push to do these things he already said he wasn't going to do.

After that I got to sit for another hour or so to answer a slew of questions about Grady and his development. It's an emotionally depleting experience, and my favorite question came at the end when the coordinator asked, "What age would you approximate your son to be?" Um...yeah. Two and a half, would be my answer. Developmentally, well...that's hard for me to say, isn't that why I'm here?

Kai and I met with the psychologist on Tuesday night to go over Grady's test results. She places him about two steps behind "average" development...officially giving him the label of "mild mental retardation."


There's so much to say about that. About the inaccurate tests they do, how they really should see him in his own environment, and how there should be tests that measure a more full picutre of the child. According to the psychologist, the wise beings who put law together here say that one can determine before the age of three what "developmental category" Grady falls into and that will be accurate for his life. She doesn't agree with this at all, and neither do we.)

I'm feeling like maybe we should've postponed this "official determination" until the school makes you do it age 8 where it should be more accurate. But at the same time, I don't have a crystal ball to anticipate Grady's future needs. If he is determined to qualify for case management and whatever else comes with that because of this label, it's one less hoop we have to jump through later if unexpected things happen and we don't know where to turn. And it is one less thing that anyone has to deal with should something happen to Kai and me.

As for the DD services, that remains up to a committee. The psychologist recommends continuing them based on his "official label," but we'll see.


I know there is no rule about where Grady will be or what he can accomplish, and that he will have a full and happy life no matter what the future holds because we'll do everything we can to make it so. And it's not like they told us something we don't know. But saddling him with the actual label feels so wrong and as the doctor put it, "really hurts your heart."

This is not easy. Each new phase brings about interesting new challenges. Thank God for Kai. I know this bothers him too, but I appreciate that he thinks a little less with his heart than I do.

I look at other parents that I admire and think, "They've done this. We will be fine." Somedays it just doesn't feel fine, though. And when I have those days, I feel like we're failing Grady. It sometimes feels like when we're faced with decisions and transitions, that no choice is quite "right." I wonder if it will feel like this for the rest of our lives.
 
I'm thankful that these feelings are "sometimes." I'm thankful that these "sometimes" equate to maybe a quarter of the time or less. And I'm actually thankful for these feelings themselves, because it causes me to take stock of where we've been, where we are and where we should be headed. And it reminds me to focus on what's really imporant!