Thursday, September 26, 2013

California or Bust

Last year JJ, Ella and I were lucky enough to be able to attend the National CdLS Conference in Chicago. When I first heard about the Conference I was deep in the pits of my grief/denial/wanting nothing to do with those 4 little letters. I had absolutely no interest in attending. I did not want to admit Ella had this syndrome, and definitely didn't want to meet anyone else who did. But as the months went by and the grief lessened I began to ease out of my shell and talk to other CdLS moms. They encouraged me and inspired me and I realized what an invaluable opportunity attending Conference would be. Even if I didn't want to admit it, even if I still didn't want to be in this club I never asked to join, even if I didn't even get along with any of the other moms in person, I knew it would be good for Ella. It would be good to learn more about what to expect in her future, what things to look out for, how we as parents can provide her with the best life possible. And the opportunity to speak with doctors who had not only heard of CdLS (which are few and far between where we live) but they were experts on it? Totally priceless.

We signed up. We decided not to take the boys with us because we wanted to really be able to focus on Ella and get the most out of the Conference for her, without being distracted by two rambunctious little devils darling boys. We decided to drive since it would be cheaper and it's not that far. (Well.. when you drive at night and everyone's sleeping (myself included) it's not that far. When you drive during the day with a grumpy baby who is not happy about sitting in her car seat for 9 hours and no one is sleeping.. it turns into really far.)

Anyways.. we learned so much at Conference and were able to meet so many wonderful new friends. The opportunity to meet other children with CdLS (who at that time the closest family we knew of lived a hundred mile away) was amazing and learning from other parents who have lived through the same struggles we are facing, who have navigated these waters before, and who just 'get it'.. it's incredible. I left Chicago knowing that even though the city was Illinoing (hee hee--still funny over a year later..) I definitely wanted to return to another Conference in 2 years.

Which is coming up next summer. And which I am totally excited about. And which we would LOVE to bring our boys for them to be able to meet other people with CdLS besides their sister, and be able to make friends with other siblings and to learn and experience people of all differences on a whole new level. And which we would love to be able to talk with experts about Ella again now that she is so much older and changed and facing different obstacles from the last time. And which would be awesome to see our CdLS friends from all over the country that we would otherwise have no opportunity to see. And which this time is located in Costa Mesa, California which is totally awesome.. except which between airline tickets for SIX, hotel rooms, food, transportation.. is going to cost us about a billion dollars.. Or at least it feels like it.

At the beginning of this spring I had such high hopes to start fundraising to help us out. I planned on starting small with a Bake Sale, but couldn't figure out when/where to do it at. Plus, it was a ridiculously cold and rainy spring that there just never felt like there was a good time. Then the summer came and went and I  was so exhausted and unmotivated from being 9 months pregnant that nothing got done. And now I am so busy with 4 kids and a newborn that most days I can barely find time to make the bed. (Okay in all honestly.. I don't try that hard to make the bed, but still.) And by now I've just gotten so gosh darn good at making excuses that I'm wondering how anything will ever happen..

So here's where I stand. I want to do something to help raise money to attend the 2014 Conference. And I'm not scared of work. I'm totally willing to do the hard leg work of whatever it is I decide to do. But the thought of planning/coordinating any kind of event sends a rush of panic through my veins. Planning/coordinating/being in charge of something is not my God given talent. Nor is it a learned talent. In fact, it has NO place in my little world of talents at all.

I think I could handle a bake sale, but where? Just outside a store? Or at an event? It seems like most events already are raising money for something so I'm sure they wouldn't want me butting in. I know I need to get going on this because winter will be setting in soon in these parts, but I am feeling a little anxious about having to take charge and make a decision. I've thought about hosting some kind of dinner or something and I've had people offer to donate items for a raffle, but then there's that paralyzing fear of planning something. On my own. Where do you even start with something big like this? How in the world would I know what to do, how much food to make, where to hold it. See? My heart is racing and my blood pressure is through the roof just thinking about it!

And then there's the fact that asking people for money to help me go to California seems a little ludicrous and makes me more than a little uncomfortable. I mean.. why should people give us money? There's plenty of other amazing organizations out there that are asking for funds. There's sick kids and people battling cancer with unpaid medical bills. There's food programs for hungry people and homes for unwanted children. Why would someone want to help me? (See what a horrible saleswoman I am? I'm already talking people out of helping us before anyone's even signed up to help.. pathetic)

So locals.. if I were to do a bake sale, does anyone have any good recommendations on where to have it at? What kinds of things go over well? CdLS parents-what fundraising ideas have worked for you? Ideas? Everyone else-do you have a talent for planning/coordinating and want to help me plan/coordinate something? Doctors-can I get a dose of one of those anti-anxiety meds to help me make it through this?

Or does anyone just want to shut me up and donate a couple billion dollars to the cause?? Kidding! I would settle for a couple thousand.. ( - :

Tuesday, September 24, 2013


During the past few years I've wasted a lot of time comparing Ella. I've spent countless hours agonizing over other children her age and willing her to be like them. To look like them, to act like them, to hurry and catch up developmentally like them. I would go out in public and stare in shock at what other children her age looked like, how they acted, what they could do, and sadly.. what Ella couldn't. Consequently, I would find myself making a lot of excuses. Well, she was born 3 weeks early. Of course that's why she's so small. or She's spent so much of her life in the hospital, intubated and sedated. Wouldn't you be behind developmentally too? or She has such similar features to our other children. There's no way she has some kind of syndrome. 

When I would observe other children Ella's age and notice the differences in how Ella was not like them, I usually would have one of two responses. The first- overwhelming sadness. We would be at the pool and I would look mournfully at the adorable little pig tailed girl giggling and splashing in the water, running in circles and squealing with delight, while Ella clung tightly to my chest, terrified of even dipping her toe in the foreign substance. I would have to fight back the tears as I held her tight and rocked back and worth, whispering "It's all right.. it's all right," over and over again. Even though in my heart it wasn't all right at all. I would be at the park and watch a 2 year old excitedly race up and down the slide, then run to her mommy and chatter nonstop about her adventures, while I held Ella's hands and slowly, silently wandered around the perimeter of the playground. I would feel depressed, defeated. Like we could never enjoy life the way these other children were, without any of the limits holding them back like they did for my girl.

My other reaction would be denial. I would pull out an outfit for her age, say 12 months when she was a year old. It would be HUGE! No way would a typical 12 month old wear that.. No way.. Was it made for baby sumo wrestlers on some kind of hyped up children's steroid or what? There's no way a "normal" 12 month old could possibly fit into that outfit! It must just be that brand.. But then I would pull out another. And another. And they all appeared to be made for the man-children of Paul Bunyon. What gives? Or I would witness a another child so far ahead of Ella in all areas of development, and I would think, "Whoa.. now that kid is abnormally advanced. Some kind of miniature Albert Einstein for sure. Typical 2 year olds don't do that.. do they?"

I would even compare Ella to other children within our CdLS family. Oh, I'm sure you're not supposed to actually admit to doing this since we're all in this together, but I would. I would look at kids older than her and wonder which one she would be like in a few years. I would watch others her age and study to see if they were doing things she couldn't. I wasn't trying to be, or thinking that we were better than anyone else, I just wanted to see where she was at. How she compared..

Over the past year though, something has started to change. Those differences that used to haunt me every time I left my home? I don't notice them quite so often. I see kids Ella's age all the time. Whether it be a friend's child, a random stranger at the store, or someone on Facebook. I know in my head that they're almost the same age as my child, but somehow it doesn't affect me anymore. It doesn't make me sad. And I don't make excuses for why she is the way she is. I don't compare them. Oh, of course every once in awhile I'll be caught of guard and for a moment my mind will wander to the what if's. "Wow.. so that's what life would be like without CdLS." But for the most part I don't notice. Don't care. Something magical has happened. Even though Ella is not the world's typical "normal", Ella has become my new normal. I actually have no idea what a typical child her age "should" be doing or how big she "should" be or what size clothes or shoes she "should" be wearing. I don't really keep track. I feel no need to. I've stopped comparing my child to others and started to judge how well she is doing by her standards, not others. Ella is doing good for Ella. Even better. Ella is doing awesome for Ella.

And then Hudson was born. After JJ finally moved out of the way and I could actually see the baby I had just given birth to, I realized that our doctor really wasn't going to waltz in and diagnose him with another rare genetic disorder. And I felt fears start to creep in. Now that I had a typical baby, what did that mean for Ella? Would I suddenly see first hand what a typical child can do, is supposed to do, and be reminded on a ever present daily basis of how she is different? Would I compare them and their stages of development? Would it be painful to watch Hudson naturally develop in areas that take so much more work for Ella? Would I feel resentment toward him for living life so easily when it was so hard for her? Would I love her more because I had to fight harder for her? Or would I bond more closely with him because I didn't have to muddle my way through the intense emotions of grief while caring for a newborn? Would I feel more frustrated with Ella as I realized what she 'should' be doing instead of being content with the stage she is in? How would I feel as Hudson, even though he is 2 1/2 years younger, eventually passed Ella up both physically and developmentally?

Hudson is now 7 weeks old. At his one month appointment he had gained over 3 pounds. It took Ella twice as long to gain that much weight. At one month Hudson already weighed close to 12 pounds.  How long did it take Ella to reach 12 pounds? Six months. Hudson is cruising up the ranks of diaper sizes at an astonishing speed. Ella has been stuck in the same size for years. At Hudson's age, Ella had already spent half of her life in the hospital, had an exciting ambulance and emergency middle-of-the-night airplane ride, and was formally acquainted with an entire team of medical professionals. Hudson has barely seen the inside of our family clinic.

Yes, it's no surprise that Ella and Hudson are different. They look different, act different, and are developing differently. But I see now that I had nothing to fear. My love for all my children is equally intense, yet equally differing as well. It makes no difference to me if Hudson walks at 10 months while it took Ella almost 29 months. Or if he catches up to her in size and effortlessly reaches her hard-earned 20 pound mark in a fifth of the time it took her. It doesn't mater when he talks, what he looks like, or what his differing talents and characteristics are. There just is no comparing Ella to Hudson. Or Ella to Nolan. Or Nolan to Charlie. Or Charlie to Hudson. Or any child to any child. Every child is so differently and uniquely created with their own individual sets of strengths and weaknesses-every single one-that there just is no comparing. And why would we want to compare our children to some kind of cookie-cutter mold of who they "should" be. Albert Einstein is quoted as saying "Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid."

I feel so much more appreciation for life since I am not wasting my energy comparing my child to others. I feel so much more freedom in the ability to love my children for who they are instead of trying to fit them into some mold of what they "should" be like that they will just never fit into. And now when I hold Ella tight, rocking back and forth whispering "It's all right.. it's all right," over and over again, I really know deep in my heart that it's true. It really is all right.

Thursday, September 19, 2013

Should I have prayed to deliver a child with special needs?

I think I make it no secret that when Ella was born with Cornelia de Lange Syndrome I was pretty devastated. Okay, completely devastated. There was an indescribable loss of so many hopes and dreams and plans for our future. I mourned the girl who I thought she was, that she would never be. I grieved the daughter I would never have, the sister my boys would never know, and the 'normal' life I thought we were entitled to. I knew there would be many unknowns in our future. I knew a lot of sacrifices were sure to accompany them. And I knew our lives had just changed forever.

I've always wanted a big family. Always dreamed of having at least four kids. A household full of laughter and love, bustling with energy, imperfectly knit together in a beautiful quilt called family. With two young boys and baby #3 on the way our lives were a wonderful mix of chaos and contentedness. And then Ella was born. And we learned about CdLS. And along with so many dreams I had for my daughter that were being ripped away one by one, I wondered if I was going to have to give up one more of my own biggest dreams as well.. my dream of having another child. At the beginning of our journey with Ella we didn't know what her syndrome was, just that 'something might be going on.' And we had so many fears, so many questions. "How did this happen? What caused it? Was it genetic? Passed on from one of us? If we have another child is there a chance they'll have it too? What would Ella's behavior and needs be? Would we be able to emotionally/financially handle another child?" And after Ella spent 2 whole months of her first year of life in the hospital, my fears did nothing but increase. "Will she be medically fragile her whole life? Will we be continually in and out of hospitals, specialists, and therapies? How could I possibly care for her in the hospital with an infant tagging along? Would it even be fair to bring another child into a family where so much care was being devoted to one particular family member?" 

As the months went by and Ella grew it became obvious to me that yes, she was developmentally delayed and had some special needs. Of course for any family in this situation the decision to have another child is highly personal, but for me giving up having more children just because of the minor inconvenience of a rare genetic syndrome in our lives just wasn't something I was very willing to do. Call it stubbornness, call it persistence, call it pure shades-over-my-eyes naivety.. We decided to move along with our plans to grow our family (but not until I was sure Ella was very very close to walking.. I may be crazy, but I'm not that crazy..) 

But even though I knew I wanted more kids, even though I had grown so much in my acceptance of the role of CdLS in our lives, even though I knew I would love another baby no. matter. what. I still had fears. Fears I don't even want to admit. Fears I hate talking about. Fears that something else was going to go 'wrong.' I knew that since CdLS is generally caused by a spontaneous new genetic change our chances of having another child with the syndrome were slim, but still I was worried. More worried than I'd like to admit. 

"What if we have another child with CdLS?" 

I hate that I even had that fear. I mean.. I'm the one who wrote the "Healthy Baby" post. I'm the one who writes ranting blogs about accepting people for the perfect way God made them. I'm the one advocating that Ella is just like any other little girl her age and deserves the same treatment. I'm the one who loves my daughter to the moon and back and wouldn't change a thing about her. And yet.. I'm the one who was worried that I was going to have another baby like her. I tried to pray about it, but what was I supposed to pray for? That we wouldn't have another child with CdLS? That would be a slap in the face to our precious Ella who was created perfectly just the way she is and in direct opposition to everything I've written about the blessing she is to us. What else could I pray? That we would have another child with CdLS? That really wasn't what I wanted either though. Was it okay to admit that?

My fears were part of the reason I held my breath a little at every ultrasound and waited anxiously every time we tried to find the heartbeat. It was why when immediately after Hudson was born and JJ was standing right in the way of me being able to see him, I didn't ask him to move. I was afraid. Afraid of what I would see. Afraid of what the doctor was going to tell me. I laid there on the operating table, my breathing shallow and my pulse quickening while the nurses cleaned him up and checked him over, and I waited. Waited for them to break the news. To tell me what was wrong. Waited for them to call in the specialists. Waited for the devastating news to be delivered so I could officially move on with my grief and shock. It never came.

I can't explain it really.. Why would I still be worried about such a thing after everything I know now? When I know what a blessing Ella is to our lives. When I know all the ways she's changed us for the better and the joy she brings to us every day. When I know and am so thankful for all the amazing people she's brought into our lives. I'm sure it has something to do with our human nature to want things easy-for ourselves and our children. Of course no one wants to see their child in pain, to watch them suffer, and unfortunately there is often much pain and suffering that goes along with CdLS and special needs in general. From the surgeries to the extensive therapies to the unfortunate pain of rejection from peers. My entire pregnancy, I wasn't quite sure how to pray for our unborn child. I mean.. was it okay to pray for their development? To pray they didn't have CdLS? Or should I be praying for a child with CdLS since I'm the one who writes about the blessings that come from it? Shouldn't I want another one?? I knew I would love our child just the way he was made, but I felt so guilty for not necessarily 'wanting' another child with special needs, for being worried, for feeling the urge to pray for the health of our baby. I felt like I couldn't do it. Couldn't pray for the health of our baby, yet at the same time couldn't not pray for it. I felt like by doing so and allowing myself to hope there was nothing 'wrong' with this baby, I was turning my back on Ella, subliminally saying to her "I don't want another child like you." I couldn't do that.

And then I read somewhere that nobody prays to deliver a child with special needs. Just as nobody prays to die, so that they can be brought back to life with a bolt to the heart. Because that is exactly what happens when you have a child with special needs. A piece of you dies, but your heart is reborn. 

So no, I wasn't necessarily praying to deliver another child with special needs. And that's okay. Because ultimately I knew I loved our child.. all of our children.. no matter what. And that's truly all that matters. 

Friday, September 13, 2013

Thursday, September 5, 2013

I Was Wrong

 It's been one month since this sweet little man joined our "fold" 
(as his debut headline in our local paper called it.. lol). 
A month already! How did that happen??

The past month has been so amazingly much better than I anticipated, proving that having overwhelmingly low expectations really is the key to true happiness. I expecting this transition to be rough. Read: I expected this transition with Ella to be rough/awful/entirely unbearable. I foresaw extreme jealousy, temper tantrums, and many many tears. And sometimes the kids might get upset too... I thought maybe we were totally crazy for attempting this. That I would wonder what in the world we were thinking 9 months ago?? I thought I would be laid up in bed, unable to get up and walk, go out in public, make supper, do anything for months and months and months. (Remember those 52 freezer meals?? Very much so a product of my terrified-ness rather than actual preparedness)

But although I don't like to admit this much.. I was wrong. Very very wrong. I was grocery shopping with Hudson 3 days home from the hospital, hanging out laundry a few days later, and making homemade supper and birthday cake after that. (Not that I'm braging.. maybe just a little.) And I totally underestimated Ella. She has grabbed onto this role of big sister and ran with it. She LOVES baby Hudson. Loves rubbing his soft hair, patting his back to help burp him, bringing me his pacifier, helping me give him a bath, watching as I change his dirty diaper every other minute, and even throws them away for me. She rarely minds when I have to feed him (and he is a slooooow eater), but rather either sits by me on the couch hugging and kissing her own baby doll or wanders off and finds something else to play. She entertains herself when I'm busy and hasn't shown any signs of jealousy. Life has been surprisingly breezy for us the past month.. you know.. as long as we don't have to do anything too crazy. Like leave the house. 
I'll say it again.. I. was. wrong.

I am so proud of so many things..
I am proud of this too quickly growing, strong little guy 

and of Ella's role of doting big sister to him.

 I'm proud of his first fish catch 
(See it dangling above his pacifier there?? Talented 2 week old there)

and of his obvious good taste in sports teams.

But I am most proud..

 that this 42 oz party bag of M&M's that JJ bought for me while I was 
having excruciating neck pain in the hospital has lasted an entire month.. 


Whew! I'm off to go celebrate Hudson's 1 month birthday. 
The same way I've celebrated every other day of his life.. 
M&M Party Bag Style.

Whatever shall I snack on tomorrow??