Loving Naomi Kathleen: November 2013

These are pictures of Naomi I downloaded for a post I never finished. I figured since I took the time to downlaod them, I may as well post them. She was between six and seven months old in these pictures. Such a sweetie. I really wish we had not been given a fatal diagnosis when she was so young (a week and a half shy of 4 months old.) It made it really hard, no impossible, to live in the moment and just enjoy her. I tried. Rob did much better with that during this time. But I just cried so much. It is very hard when you have to grieve your child while your child is living. It is the way it is though. Any parent in our situation can tell you the same thing. There's just always this black cloud of doom hanging down over everything. It was hard after the initial trip to Children's. But hope springs eternal (I could write reams on that one) so we had pretty quickly settled in to the idea that she would have a static encephalopathy and be with us for a long long time. We even dreamed that maybe she would learn to walk or crawl, or at least use a walker, and have some means of independent communication. But, yes, it would have been nice if I could have just enjoyed the baby pictured below without all the grief getting in the way. It makes me sad. Sad for us. Sad for her. We missed out on so, so much. It even has made us miss out on Lydia. As a parent you want to do everything possible to help your child so you search, search, search for a diagnosis. But sometimes the diagnosis ends up hurting you and your child, such as when the disease that is diagnosed is untreatable and always fatal. We would have been better off not knowing. We couldn't do anything to help her anyway. You really want to know, until you do, and then you just want to be able to forget it. Interestingly, I have been much more able to handle the difficulties of Naomi's situation recently. For me, having Lydia made it easier to to enjoy knowing Naomi as she is. When Lydia walked, it didn't hurt so much that I never saw Naomi learn to walk. It still hurts me for Naomi's sake, but no longer for mine. Does that make sense? I only have to grieve for what Naomi misses now, whereas before I had to grieve both what she misses and what I missed as a mother. For Rob, though, having Lydia has made dealing with Naomi's condition more difficult, and so he has been having a very difficult time with it all recently. It is sad. Always a shadow. I've said it so many times: I just want to walk in the sun again. We never will, though. That's the other thing that is hard. Rob and I are solidly middled aged now, approaching 40 in fact, and we have both been going through midlife crisis kind of stuff. When you are young you have your whole future spread out in front of you. Unknown. Exciting. So much limitless potential. Bright skies, wide horizons. All that stuff. And you are working hard to get everything all set up...get the education, get the training and experience, save, work, plan, dream. Now, though, the future is here. And it kind of sucks. It's stagnant. Naomi is stagnant. She hasn't regressed, but she hasn't progressed either. And we are thankful that she has not regressed, but it's kind of a shitty thing to have to be thankful for. Ohhh....my daughter hasn't hit a new milestone since she learned to sit at 16 months old. She's 61 months old now. Awesome! And it is! Because she could have lost that skill and she hasn't. But that sucks! Sometimes I get tired of having to be grateful for shitty things when it comes to Naomi.

It's not all bad, though. Naomi and Daddy has a great day today. They did most of their favorite things...horseback riding with Dakota, shopping, swimming.

We had a screened porch at the last house. We spent lots and lots of time out there. She loved it. We are hoping to put a porch on this house this spring.

On the porch again.

Trying to get her to use her hands instead of just her feet to jingle the bell. The paper attached to the tripod has black and white checkerboard printed on it, for visual stimulation. I had that kind of stuff everywhere for her.

Her first eye patch. We still patch. She still doens't like it.

Love her little face. Still love her little face.

On the porch again. We had most all meals out there.

She had learned to windshield wiper her hands over her linking letters.

She loved it! She could finally play. She made a lot of progress with her hands for a long time. Well, for about a year. Then the shit hit the fan.

Love you.

We had nearly daily photoshoots. Because as a first time mother I was enthralled with my baby, and also because I had a frantic need to document her daily.

Smiling to my voice.

She was facing her favorite big windows. She loved them. Sometimes I feel bad that we moved away from that house and the things in that she loved. But it was part of Before and I had such a strong need to get away from all things from Before.

These are some of our favorite pictures from this time. They watched all the Pens games together. Sometimes she still does let Daddy have the Pens game on. Usually after her bath. Baths put her in such a good mood, so she is more tolerant of not getting everything she most prefers.

We have had a big last couple of weeks! Two birthdays, Halloween, and meeting Noah!

Naomi's birthday was 10/22. She turned five this year. We had a low key birthday on the 22nd with Naomi going to school that day.

Naomi in the morning before school on her birthday

Naomi receiving a card from Mommy and Daddy - she clearly has reservations about getting older

The big day was on Sunday October 27! We had a huge party for both girls at our house. On Friday, the people came to set up the tent and the bouncey castle. Preparations were made all weekend for the festivities. We took advantange of having the bouncy castle for a weekend by inviting the cousins over for a sneak preview. We also thought it would be good to try the kids in it without all of chaos of the party. Here are some pictures.

Naomi with Auntie Sarah

Naomi was mostly unimpressed

A polka dotted monster made her way in.

This was right up Lyd's alley

Sunday was the big day. We invited 175 of Naomi and Lydia's closest friends and family for an outdoor birthday bash/fall festival. We wanted to celebrate Naomi making it to 5 years old and celebrate Lydia being here at all and making it to 1. The party started at noon, and the kids (there were over 60 who came) were treated to the bouncy castle; numerous games like corn hole, ring toss, bean bag toss; a minature pumpkin painting center, and a few special events. We also wanted to raise money for Batten's disease and so in lieu of gifts we asked for donations. The food was Oktoberfest style - kielbasa and sauerkraut, meat pies, meat wrapped pickles (sounds gross - super delicious), mac and cheese, soft pretzels, spaetzel, apple crisp, hot chocolate (temp was about 45 and windy), cider, beer. Naomi started her big party by falling asleep

Cousins Grant and Margot playing ladder golf

Grace and Grant at the pumpkin table

Lydia monstering around the yard - We tied a balloon around her to keep tabs on her

In the tent line for food

Lydia moves pretty quick

Naomi's buddy Allen David Garman of Allen David Garman - Beneficiary on Facebook, with Amberly, Julie and Allan Garman

These are the Deckers of A Match Made in Evan on Facebook

Lyds with Cousin Grace - Get older Cousin Grace so you can babysit!

The first big event was the magician. About 30-40 kids gathered around and he performed tricks and made balloon animals

Waiting for the magician

Naomi with Papa. She is not a fan of magic

Lyds is game for anything

Lyds with Aunt Jerry. Jerry was our savior on vacation. She is excellent at wrangling our children

The next big event was the treasure hunt in the hay organized by Nana and Grampy Caughey. They also brought all of the free standing games. It was pure mayhem with the little kids going first and the big kids going second.

Free for all in the hay

The big kids

The last big event was Naomi's favorite. Her best horse friend Dakota came out with his friend Ashley to give the party goers pony rides!

Naomi waiting in her pink helmet.

Naomi getting placed on her good friend Dakota - Where did Daddy's hair go?

Naomi outside

Mommy with Lyds and Katie Cardinal, who is responsible for Mommy and Daddy being married, and therefore also responsible for the existence of Naomi and Lydia.

Lydia was not big enough to ride

We had a great time celebrating the birthdays with our friends and family. The time went so fast. We did not ask for presents, but rather donation to Naomi's foundation and we raised over 3000$ for Batten's disease research.

With the extravaganza in the books, we settled in for some more mundane holiday tasks like pumpkin carving. A funny story - Daddy learned that you cannot keep a jack o lantern on the kitchen table. I carved the pumpkin on 10/28 and thought it looked so nice that I would keep it inside. However, on Halloween we came back from visiting/tricks or treats and I noticed that hair had grown in the jack o lantern's eyes - well it was mold. I gave Naomi a bath and in the 45 minutes I was gone the pumpkin had essentially melted into a puddle on our kitchen table!

Naomi and Lydia helping daddy carve the pumpkin

The girls are ready for Halloween

A few days after the big party we met up with Noah Coughlin in Bedford. Noah just completed his second cross country run to raise awareness for Batten's Disease. It was great meeting someone in person who has such a heart for kids afflicted with this terrible disease. Like all rare diseases, Batten's isn't on anyone's radar except for the families of those suffering from it, and the doctors who are trying to treat them. We need all the awarenes we can get! Awareness brings research dollars and research dollars bring a cure. If you haven't before, please consider sharing our blog with your friends to help us raise awareness. You can also donate to Naomi's foundation through the donate button here on our blog. All money raised goes to fund research and assist the children who are dying from the disease, which is, sadly, still always fatal. Always. We pay all of the administrative costs of the foundation out of pocket, so every dollar you donate goes to the cause. Not too many foundations like around!

Then we had Halloween. Naomi was an angel. And what a pretty, sweet angel she was too. Lydia was a Little Brown Bear, just like Naomi was when she was one. We got some pictures of them separately and then tried to get a picture of them together. Getting a picture of them together has become a more difficult proposition, since Naomi is stationary and Lydia is...not stationary. So Daddy had to try to pin Lydia to the couch. Neither of them was pleased.

Naomi the Angel.

Lydia the Little Brown Bear.

Naomi with stop hand up; Lydia being prevented from bailing off the couch.

Naomi, Lydia, Olivia the Pig and Grant the Power Ranger at Grandma and Poppa's.

Then we went to Grandma and Poppa's to start off our trick or treating. Mommy ate quite a bit of candy at this stop, and the other stops too. Here the girls are with their cousins, Olivia the Pig and Grant the Power Ranger. We also hit our stops in downtown Hollidaysburg, Auntie Laura's house and Uncle Joel's house. Then we went over to Altoona and made our stop at Aunt Jerry's house. We usually trick or treat at Aunt Mary's too, but there was a dual mega meltdown in the car on the way there so we had to head straight home. Next year, Aunt Mary and Gail!

Lastly, Lydia turned one! Yay Lydia. We had a little family party for just Lydia, in addition to the girls' joint party. Really, can there ever be enough celebrating? In case you are wondering, Lydia has made big improvements in her social skills and some improvements in her communication skills, though she is still behind. Her Child Development Specialist is much less worried about autism, though of course, since it can't be reliably diagnosed until around age 2, nothing can be ruled out. Ah, for those of us who have been through the emotional wringer with a firstborn, that is a long time to wait. Not that we spend all day worrying, but we do spend some part of most days worrying, some days more, some days less. It is hard (impossible) not too...and it all just feels so very familiar, which makes it hard to comprehend that it really could all turn out fine, since things with Naomi turned out very much so not fine.

Last part of the week - Lydia's birthday party for family. Everyone came up for the celebration