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THE DYNAMIC DUO--HANNA & RACHEL
Karri |
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LETTING MYSELF FEEL
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Oct 20, 2008 02:54pm (EST)
"..... just when I think I'm over it I'm not. It just feels like hell. I have to let myself feel that, then maybe someday it won't hurt so much..." ---- Kevin - character from Brothers & Sisters
Typically when I return from the MOD NVLC, and SU I need at least a week to process all that I've seen, heard, and done. I have to decompress.
Last night while in an attempt to decompress I was watching one of my favorite shows, Brothers & Sisters. Kevin, and his Mom are discussing her marriage, and death of her husband, Kevin's father. As I sat watching this, and Kevin was speaking it struck me. The above phrase that I quoted is as if he were speaking to me.
As I face a future with a special needs child, a result of her premature birth, I have pain I must deal with. I have acceptance that I need to get to. This pain began eight years ago before I could have ever imagined that Prematurity would touch my life, and where it would take me.
Each time I share our story, wether in a large forum, or casual conversation I find healing. Each time I see pictures of my girls in the NICU I feel the pain, but I also have overwhelming pride.
In order to find that healing, I have to let myself feel that pain. The March of Dimes has given me that place. I have found it hear at Share, and through my volunteering at both the local, and national level.
Thank you to all the Staff, and Volunteers of the March of Dimes.
Someday maybe it won't hurt so much.
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Posted by Karri | Comments: (18) | Permalink
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HOW DO YOU SAY GOOD-BYE TO A FRIEND?
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Sep 24, 2008 12:15am (EST)
As a baby Ian was a thumbsucker. This boy came out sucking his thumb, and never looked back. He briefly took a pacifier (that he would regularly spit out, and I'd put back in his mouth). All he wanted was his thumb, and he knew this very early on. By 8 weeks old he was very good at finding and sucking on his thumb. I must add he looked so stinkin' cute with his thumb in his mouth, with his dimpled little hand... I can still picture it.
When Ian was born my sister bought him a pillow pal, made by Ty (think Beanie Babies, but a little bit bigger). It was an orange and yellow stuffed dog we affectionately named "Woofy. Before Ian was 6 months old he was attached to this thing, and would not go to sleep without him. He LOVES his Woofy! Woofy had a purple ribbon (now safely tucked away in his keepsake box - smell and all) around his neck. Ian learned if he looped his fingers through that ribbon he could suck his thumb, and carry Woofy with him where ever he went, AND still have a free hand to play, or carry another object.
For the first two and half years Ian and Woofy were inseparable. He carried Woofy everywhere. We did not leave home without him. If he put him down he knew right where he had left him. Woofy was and is well loved. As we approached Ian's 3rd birthday Kirk and decided it was time to start limiting the amount of time Ian could have Woofy. Our decision was that he would kiss Woofy, and leave him in his bed where Woofy would wait for Ian to go to sleep at night. We convinced him that Woofy needed to sleep all day so he could stay awake to watch over Ian while he slept. Ian took to this idea, and actually separated from his "buddy" quite easily.
From then until now Ian has continued to sleep with Woofy every night, and leave him safely on his pillow in his bed at wake up. Woofy has traveled to many cities, and slept in many homes in his 9 years. He's been from Miami, and to San Diego. He's never missed a trip to Grammy's, or the boys camping weekend. He's a regular fixture at all the neighborhood sleepovers, and is well known by all Ian's friends, and their parents.
As you can imagine Woofy has a distinct smell, even after several washings, to which I can barely tolerate, while Ian thinks is just great. Ian has explained just how he sucks his thumb while rubbing Woofy under his nose to fall asleep. His purple ribbon had to be retired, and as I said is safely tucked away in Ian's keepsake box. It was frayed, snagged, and not really purple anymore, time, and drool have changed it's color a bit. I suppose these all add character to Ian's beloved Woofy.
Two weeks ago Ian had his 6 month visit to the dentist where we were informed (not for the first time, but certainly more forcefully) that Ian must stop sucking his thumb. He has a cross bite due to the way he sucks his thumb (not the typical thumb directly center in behind his top front teeth). The top of his jaw goes to the right, and the bottom of his jaw goes to the left. If he doesn't stop he will definitely need an expander, and braces. We have a small chance of saving things if we can get him to stop in the next 6 months. We have been offered a piece of hardware that can be put in his mouth that will prevent him from sucking his thumb. The downfall is not only does it attach a foreign object into his mouth, it also costs $1,000. Guess I should have gone into Orthodontics, rather than teaching.
The tie in to Woofy, and the dentist you may ask. Well, if we take Woofy away, Ian doesn't suck his thumb. He does not suck his thumb at all during the day, not even when he's hurt, not feeling well, or upset. He ONLY sucks his thumb when he has Woofy. So last Monday we said "see you later" to Woofy, and placed him on a shelf in my room. I was proud of him that he knew his own temptation, and told me if he was on the shelf in his room, he could reach him, and would probably get him off late at night. We've told him he may be able to have Woofy back if he can stop sucking his thumb and not start again. Honestly, that's not something I see happening, but I won't count him out just yet.
I feel like I'm sleep training a baby again, minus some of the crying, though not completely. He's struggling to get to sleep at night, and has had some tears. It's been as late as 10:15 and he's still awake telling us he can't get to sleep. That does not bode well the next day with a child who needs his 11-12 hours a night. He's been grumpy, and whiney nearly every day, especially around dinner time, and beyond.
His behavior has been questionable at best which I do believe is stemming from the lack of sleep, and the stress of breaking a 9 year old habit, and major comfort in his life. I feel sorry for him, but I realize this has to be done, and we'll get through this somehow, someway.
I will say this.. I won't be surprised if he pack Woofy when he heads off to college. And I'm sure some young girl will find it totally endearing!
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Posted by Karri | Comments: (9) | Permalink
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NOT A BANNER DAY
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Sep 12, 2008 03:16am (EST)
This day started off very well. Kids on task, getting through our routine, and everyone was happy... no Grumpy Gus at our house this morning.
The girls are out the door to school, and the boys are here with me as they had dentist appointments. We were nearly out the door, and my cell rings. It's my Mom.. not unusual. I answer it, and can tell immediately by her tone that something is wrong.
Janice, my SIL received a call at 3:30 this morning, from Iraq where my brother Darryl is stationed (he's been there 4 months - 3rd tour with the Air Force). He had a heart attack this morning, and is in the hospital there. As of last word he was sedated, and stable. We're awaiting word of when they will transfer him home, via Germany.
This is has stirred many emotions for our family. He's so far away, we don't know the level of medical care, and we can't talk to him. We're left feeling very powerless, and have to trust in others to care for him.
Just as things are sinking in about Darryl Kirk gets a call from a coworker. Raymond, one of our friends' triplets passed this evening from complications from the infection he was battling. His little body just couldn't fight any longer. Mom and Dad made the difficult decision to stop intervention, and let him go in peace.
It's been an emotional day. Please keep my brother, and Raymond, and his family in your prayers. Thank you.
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Posted by Karri | Comments: (13) | Permalink
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ACCEPTANCE
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Sep 05, 2008 03:19am (EST)
Every step of this "process" (I'll call it that for lack of a better word right now) with Rachel I think to myself.. "okay, I've got a handle on this, and have accepted our life as it is."
And then the next "thing" comes along. For the last year that "thing" has been something different.. but always a part of, or a result of where we started.... The NICU.... a place that is pretty hard to deny.
I would also like to think that I do accept our situation. I don't walk around in denial. I don't act as though Rachel's situation is a result of a delay, and that in "X" amount of time she'll be caught up. We're beyond that. Even her school paperwork has changed her diagnosis and has taken the term "developmentally delayed" off. I know that for most of her life she will be behind her peers... never quite measuring up, and she won't likely ever catch up. This is who she is.. who she was meant to be.. and we love her regardless. Lord knows we love this girl!!!
Last spring, about late April, I came across some literature about the Special Needs PTA in our district. I don't know why I never noticed this before. My thought.. it didn't apply to me.. I didn't have a child with special needs. But then suddenly I realized it did apply. I do have a child with special needs. I read the paperwork that explained their philosophy, their goals ,and their meeting schedule. One meeting left coming up in May. I had a conflict (very minor conflict I admit now). Concluded that I was not able to go, tossed the paper in the trash, and thought.. "maybe next year".
Fast forward to now. Once again, I have gotten two letters home from school with the same information I had gotten last year. And again, I tossed it aside. Last week Kirk and I attended Curriculm night at the school. We visited each classroom, met with all four teachers, and then strolled down the hallway with the PTA table, the Market Day table, and the last table in the hallway was the special needs PTA. I immediately stopped, quickly said to Kirk.. "we can go now", and we headed home. I couldn't even walk up to the table.
That night while lying in bed I realized.. at some level I am in denial. If I actually inquire about this specific PTA, and actually join, and actually attend their monthly meetings (which I think could be very helpful... we all know the power of not feeling alone) I will be admitting to myself that I really do have a special needs child.
What is wrong with me? I do accept my daughter. I accept her, and I love her no matter what. So why is this so hard? Why can't I take this step? She goes to therapy, she has an IEP, she attended ESY, and is "labeled" as Supported Ed. Maybe deep down I do all this, and still hold out that hope that maybe, just maybe it will make a difference, and she'll suddenly be better.
For some strange reason this is consuming me. I can't stop thinking about it, but I can't take the step to go to a meeting.
Maybe some of you can help me understand better, because I just don't get this.
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Posted by Karri | Comments: (7) | Permalink
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A LOOK BACK
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Sep 03, 2008 05:58pm (EST)
I'm one of a few, very fortunate people who can say they've been able to attend every ShareUnion from the beginning. Even before we knew it would become a "reunion".
I will never forget our first year in White Plains/NYC. Frank's very entertaining tour of the national office, or Liza's presentation about the NICU family support program. I realized that day that I still carried a lot of guilt over how Hanna and Rachel's NICU experience impacted Ian. Traveling into the city to be on the Early Show and spread awareness about our mission, and the March of Dimes, on the very large PAM/PAD bus that drove us all over the city that day. The president of Fed Ex bringing down the specially decorated Fed Ex truck for PAM/PAD. Brenda picking us up at the airport, and navigating White Plains in an attempt to get us to the hotel, and getting completely lost! Darcy hunting down a Starbucks once we hit NYC, because there wasn't one in White Plains (to think!). The infamous trip to Cheesecake factory, and Michele, and her fork. Do you have that plate in a safe place, Michele?
We've all said, on many occasions, that we never imagined we'd be a part of an online community. We've all said we never imagined we'd find some of our closets friends through an online community (Well Michele did meet her husband that way.... see she knew something we all didn't). But look at us now. Share has brought so much, to so many. We've all been blessed to have found a lifelong friend, or two as we fought our way out of a fog of pain and grief.
It's no secret that Donna, and I have found incredible friendship through Share. Had we not both logged on, and began sharing and volunteering for the March of Dimes, we likely would have never met (let's face it there are a lot of miles between Chicago & San Diego). Four years later, I can't imagine a day without a text, email, or phone call from her, or to her. When I have something to celebrate, to cry about, or to scream about she's one of the first people I want to get in touch with. Our friendship was easy from the start... it's as if we've known each other forever. This friendship is made easier by the fact that our husbands have definitely been cut from the same cloth. They have the same interests.. in work, in leisure, even in antagonizing the two of us. All these things have taken something Donna and I have, and grown it into something our families have. I firmly believe that God brings people into our lives for reasons we may never know. Maybe Hanna, Rachel, and Ryley were meant to bring us to one another. Whatever the reason, I count Donna, Michael, Ry, Grace, and E as some of my most special blessings.
My time spent at ShareUnion is time I'll never forget. I've met some of the most amazing March of Dime staffers... people with the biggest hearts, some with stories of their own (and some of the best huggers too...Judy!). I've met amazing volunteers from across the country with beautiful children, and angels I feel blessed to know. We may cross paths, but once a year, but we always have the same mission.. helping mothers, and babies!
Each of you are a part of Share, and what Share stands for. Though our NICU stories maybe a bit different.. the common ground is the NICU experience itself. We've all struggled to find healing. Share has been able to bring that to each of us. ShareUnion is just an extension of that healing. I encourage you to come if you can. I'll be waiting to hug you in Houston!
Side note.. the first picture is not technically from a ShareUnion, but it's from the first meeting of Share Moms. It was taken at the National Volunteer Leadership Conference.
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Posted by Karri | Comments: (10) | Permalink
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WHERE DID SUMMER GO??
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Aug 31, 2008 08:43pm (EST)
I can remember being told that once I had children time would really fly. That was NOT an understatement, and has proven especially true this summer.
It's been a whirlwind of fun, adventures, and memories. We spent time swimming, playing and watching baseball, flashlight tag, bonfires, smores, fireworks, and sleepovers. Our adventures included camping, amusement parks, waterparks, bike rides, and a tour of 4 US cities in three different states, two birthday celebrations, oh and more sleepovers.
As much as I miss my babies (and I REALLY do miss those days) we definitely hit a new level of independence with all of our kiddos this summer. And with this independence we could do many new things. We can withstand 3-4 mile bike rides regularly, walking DC for up to 4 hours in one day (honestly we were all tired after that day!), and a whole new level of comfort for me when we were swimming at the neighborhood pool, or in Grammy's pool. Of course, the kids can't be in the pool unsupervised, but if an adult doesn't want to be in the water it's not needed. They all can swim, and have absolutely no fear of water.
It's hard to believe we're back in school. And even more shocking is that this year all my babies are there ALL DAY long! Makes my heart heavy, and the tears flow. The older three started Monday, and Will started Tuesday after an abbreviated day Monday. I avoided my house the first two days. Much to Kirk's chagrin I'm sure, as most of those hours were spent in some type of store, eating establishment, or nail salon. Fortunately I don't have to face this silence alone, as two of my closest friends are facing this same quiet in their homes. We've definitely gotten through this week by leaning on one another.
Thursday was my first day spent at home. I did 7 loads of laundry, and cleaned out the girls' closet for the garage sale coming up at the end of the month. The only time I left the house was to go to lunch with Kirk. I have to admit with him working from home quite frequently these days we will get to do that more often, and it's very nice!
The kids seem to be adjusting well to our new routine. Rachel is having some struggles, but nothing unusual. Any change in routine is hard for her. She's been a bit emotional, and very distracted. She's having trouble with her morning routine, and following directions. At school she's holding her own, but is getting confused frequently. She has many new expectations coming her way along with the routine shift. She'll be fine, it's just going to take some time. We also suspect she has had a few seizures this week, so we're adjusting to some medication increases too. That in itself is adding to everything.
Will is doing great! If you ask him he "loves" Kindergarten. He loves his teacher, and his very best buddy (who happens to live right next door) is in his class. For him life couldn't be any better. He is definitely tired by the end of the day. Six hours is long for any kid, especially a new five year old. He is asleep in less than 5 minutes every night. And he feels so big going off to school with his brother, and sister, and all his friends. He's been waiting a long time to follow everyone into that building.
Ian and Hanna are doing great. Ian is very excited that two of his buddies are in his class, and he got the teacher he wanted. You know gossip spreads fast, and his teacher is the "nicest" and does NOT give homework on the weekends. Two very important items to a 9 year old.
Hanna has said her days are fun, and that her teacher is funny. She has a male teacher this year, and thus far has been a nonissue. She has several friends from last year in her class. This girl tends to like to play with boys, so she always scopes out the familiar boys in her class.
We're home this weekend enjoying the last weekend of summer. Yesterday we did some planting in my new garden, and weeded the rest of the beds that were a mess after being gone for two weeks. Our local Jaycees hold what's called the "Last Fling" all weekend. We're going to take the kids to that tonight for some rides, and games. Gavin DeGraw is there, so it will likely be mobbed. We'll see how long we stay. I'm hoping I can take in a little music.. even as it echos through the trees.
I will blog about our vacation in my next blog. I also have some thoughts weighing on my mind, and this has always proven to be the best place to work things out that are rumbling around in my head. You guys may just get 3 blogs from me this week. Aren't you excited! hehehehe
A family photo from DC.
I hope you are all well!
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Posted by Karri | Comments: (4) | Permalink
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WHAT'S A MOMMA TO DO?
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Aug 04, 2008 03:16pm (EST)
I've been doing this back to school thing for three years now. This will be my fourth year (I'm only counting from the time Ian began Kindergarten - I'm not counting preschool). It has gotten easier with each year. UNTIL NOW!!
I'm sending Ian off to 4th grade. One more year at this school for him, and then he's off to Middle school. Holy Crap!!! And I'm told he will have a ton of homework this year. At least 90 minutes each night, depending on the teacher. So.. all you 4th grade teachers out there.. Is this true? Could be a busy year if he makes swim team, has practice 3 nights a week, and that much homework, along with Religious Ed.
Hanna and Rach are off to 2nd grade. First grade is a transition year.. lots of growing, maturation, and learning happens that year. But in second grade comes the "I'm a cool big kid" year. They already get the rhythm of the building, and all the routines of being there all day. Nothing is new, except the teacher, and some classmates. I have a good idea of who Rach's teacher will be, and couldn't be happier. I don't have a clue of Hanna's teacher, but know we have a strong 2nd grade team so I'm not very worried. She'll have her standard period of adjustment, and coming out of her shell, but she'll do okay.
Will is another story. This is giving me anxiety. Serious, unable to eat, losing sleep, anxiety. I'm not worried about the teacher (though definitely curious), or even Will's ability to adjust to this new situation. He's ready for this.. and he's excited, though I'm sure he's a little uneasy. Who wouldn't be? I know the school, I know the Kindergarten team, and for the most part know how his day is going to play out.
The part I'm struggling with is that all my babies will be gone after this. I'm a Mom. Honestly, that's what defines me. I have a teaching degree that I haven't used since before Ian was born, so I can't really say I'm a teacher. I'm a Mom, and I will not have anyone to "mother" all those hours. Some people aspire to be a doctor, a nurse, a teacher (and I loved it when I did it), but ultimately I always wanted to be a Mommy. I admit it.. I'm feeling a little lost as to what to do with myself. I can vividly remember crying in the grocery check out line buying the things for Ian's first lunch I was going to pack. Knowing that my little lunch buddy Will is going to be having lunch at school too is killing me. He's my baby. Think anyone would notice if I didn't send him?
Family, and friends keep telling me to take some time to enjoy myself. It's been a busy 9 years getting to this point, and I should just take the first few months, and relax. I can see myself doing that..... for about a week. One week, and then I'll be stir crazy. I will have cleaned every thing, reorganized every closet, dresser drawer, and toy bin twice, and still be finished in one week.
This is going to be a big adjustment for everyone. I have a feeling we will all be missing one another, but dare I say.. I'm going to miss them more.
Join us for our Back To School chat. Tuesday, Aug. 5th at 3pm.
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Posted by Karri | Comments: (8) | Permalink
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PRAYERS PLEASE
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Jul 27, 2008 02:56am (EST)
I've shared the story of my girlfriend MaryAnn's niece Meghan who had been battling cancer.. first Kidney, then Lung Cancer. Meghan was given all chemotherapy treatments possible after her initial diagnosis, and surgery to remove her kidney. At one point the cancer in her lungs was no longer responding to the chemo. She'd become chemo resistant. Their last hope was a stem cell transplant. This was performed, and seemed successful as she has had clear scans for the passed year. Her blood levels, and platelets were all stable after a long time. She was doing well, feeling well, her hair had all grow back in and she finished her first year of college this passed May.
On Friday the family was given devastating news. The scan that was done that morning showed growth of the old nodules, and several new nodules in both lungs.
As you can imagine they are deeply saddened by this most recent news.
The plan at this point hasn't been finalized as far as treatment.. but in Meghan's words.. "she beat it not once, but twice.. she's not giving up this time either." She's a very brave young girl, and has a true fighting spirit. She also has a strong believe in God, and that he'll take care of her in his plan. She's asking for a simple request... that others pray for her.
So I'm here tonight to ask for prayers. Prayers for Meghan, her Mom, and Dad, two younger brothers and her entire extended family. This has come as quite a blow for all of them.
Thank you my Share friends. The power of prayers is an amazing thing.
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Posted by Karri | Comments: (9) | Permalink
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