Thank-full

I am thankful for all the wonderful people in my life. I have an amazing set of family and friends.  I am thankful for every day I have with Aly, thankful that she is here and continues to grow and learn and thrive.

I just want to thank all the people who loved on Aly while she was in the hospital. I want to thank the doctors and nurses, the therapists, the techs, the social workers, lactation consultants, pretty much the entire staff of Primary Children's hospital. There is not a day that goes by that I don't think about it and feel grateful that we live so close to this important place. If you ever need a charity or a cause, Primary's is a solid choice. This place saved my daughter's life and continues to provide services for her recovery.

 

Please be thankful for your children every day even when they drive you crazy and all you want is a moment's peace. Please be thankful now, when you don't need to be. Please snuggle your kids more than you think you need to. You never know when you will wish so hard just to be able to hold your baby. Please give people a break, even when they don't deserve it. That is when they need it more than ever. Don't judge anyone too harshly, you never know when someone is having the worst day of their lives. Be thankful every day! 

Happy Thanksgiving!

GO ALY!

Daddy's Letter

October 21, 2012

Aly/Alex/Alexandra,

                Hi! It's your dad here. I can't believe you are already a whole year old! It seems like just yesterday that you were just a little speck of a person who couldn't even eat. Now you're our big, standing, and scooting baby babooshska!

                I still remember when you were born, the first thing I did was count your fingers and toes while they were still picking you up. Five on each hand and foot, just like there should be! You had a hard time learning how to latch and eat at first and your mom and I were very worried. I finally got you to eat a bottle of formula. I guess it wasn't very good since after that you ate all your mama milk with no problems!

                We love you so much and you have brought such joy to our whole family. You've always been very happy and sweet to everyone. Plus, you were a very healthy baby too! That is, until July. That's when you got very sick and had to go to the hospital. Your mom and I (and everyone else!) were so worried about you and even the doctors weren't sure you'd be ok. It was ok, though, because you are the strongest, bravest person I've ever met. You pulled through and came home in only ten days! I am so proud of you for getting through everything so well. That being said, if you ever scare your mom and I like that again, you are grounded for life! If you ever think your mom and I are being over-protective that is part of the reason. We just love you so much and we appreciate how lucky we are to still have you in our lives!

                Recently, just in the last week or so, you have been a little grumpy. We think you are finally starting to get more than just your bottom two teeth. You still are a sweet girl, but you have been having little crying fits. It's been a bit hard to deal with you screaming all night long, but I know you'll get over it.

                Anyway, I've been staying home with you for about a month now, and I can't tell you how special it's been. Every day you seem to learn something new, whether it's standing up or banging your toys together or, now, starting to crawl. You were a couple months behind on your development when you got out of the hospital, but with all your therapy (with Beth, Dani, and Eunice) and all the work we do, you are totally blossoming. It does my heart good to see your progress every day. You also need to know how amazing your mom has been through all this. It's been very hard for her to go to work everyday while I get to hang out with you. When you get old enough to read and understand this, please thank her for all the sacrifices she has made for you and me. You have an amazing mother and are very, very lucky.

                Mostly, though, I want to thank you. You are truly the best thing that has ever happened not only to me, but our entire family. I've never seen grandparents (and great-grandparents) who love their grandchild as much as you. You have a magic about you and you just make people happy. You are destined for great things, Alexandra. You just need to work hard and believe in yourself! You are only turning one and you have already proven yourself to be brave, strong, kind, smart, inquisitive, and unbelievably adorable! You are here for a purpose and I can't wait to see what it is. Your journey has begun (and is a year into it already!) and I will be here to support you any way I can. I am always in your heart, child. I love you more than I can ever tell you. HAPPY BIRTHDAY ALY!

Love,

Dad

One

Dear Aly,

You are one year old today. I plan on writing your normal 12 months letter where I talk about all the stuff you've done in the last month, and all the stuff that is going on, but this is a special one year old letter. I just wanted to tell you that I love you more than I think you will ever know. At least not until you have a child of your own. Having a baby changes something, I don't know but I feel like its kind of narcissistic to love something you made so much, and yet here we are. I just wanted to tell you Aly, that your mother will always be your biggest fan. I will always be cheering for you, I will always want you to be happy. I will walk backward through hot coals blindfolded for you, I will throw myself into shark infested freezing water if you need me too. I want you to grow up happy, secure, positive, polite, thankful, thoughtful, selfless, but I will take you however you end up. It is my job to raise you right and just know that you are going to be who you are. I will always fight for you my love. I will always have time for you. I will always choose you over anything else.

I do worry Aly, about the future. I worry that you will always be just a little behind. I worry that you will be the weird kid, or labeled a loser, or a loner, or that you will be shy like me and have trouble making friends. I worry that you will have trouble in school. I worry that I won't know how to help you. I worry that I will say the wrong things. I worry that I will hurt your feelings when I try to make you feel better. I worry that I will always worry too much!

While I will worry about you, I want to make sure you get to experience everything good in life. I will let you play outside. I will let you go sledding in deep snow, I will let you play on the swings, and I will become an expert in any sport you wish to try. I won't try to push you into any one thing. I will let you choose your own music, movies, tv shows and even let you have a crush on the next Justin Bieber teen idol that comes along. I will let you make mistakes and I will help you learn from them.

I will make sure you are protected too. I will do everything I can to keep you safe when I can. I will try to understand that you will get hurt, but I will always be there to make it better.

You are an amazing little girl. You have taught me so much in just a year. You have challenged me and rewarded me and shown me so many things I never knew about myself. You are the best thing that ever happened to me. Please know that you are so, so loved. I never knew a baby that was as loved as you are. Never doubt how we feel about you. You have so much more life to live and you have so much more to show us.

There will be bumps in the road, there may be hard times, sad times, we may lose people we love along the way. Just know that you will always have my support. You will always have love, and strength. You may not always think so, but know this: You Are Enough!

Happy birthday my beautiful daughter! Here's to many more years!


Love always, Mom

Eyes Wide Shut

Just wanted to give my loyal readers a quick little update on the “Go-ings of Aly” haha. She is making some progress with her gross motor skills and has mastered the ability to go from laying to sitting. She has also figured out how to stand up in her crib and has freaked out her dad with that trick a couple times lately. She still doesn’t do things like bang toys together or clap, but she likes when you model it for her or make her do it. I’m hoping she’s just on the verge of figuring it out.  (Edit: Daddy just sent me a video of her banging together like a pro!) She also has started babbling like crazy, not just nonsense but more consonants sounds, especially “Da.” I think “Dada” is her first word. Everything is “Dadada” so I don’t feel left out! Although, she seemed like she said, ”Hi” a couple times starting at like 3 months old.

Aly did give us a little bit of scare last Saturday morning. She woke me up crying at 6:30 am. It was not her normal, “I’m up Mama, come get me,” cry, it was more a, “I’m not happy, I need my Mama now!” cry. She was acting really grumpy and not wanting to open her eyes. This is concerning because she is usually in a good mood in the morning. I changed her, fed her, and put her on the floor to play. She kept rubbing her eyes and then crying, but then would act completely normal, so I wasn’t sure what was wrong. I thought maybe she was having an allergic reaction, or possibly a hair or dirt was in her eyes. She just wasn’t acting like her normal sweet self. After texting back and forth with Ben, we decided to call her Doctor. Yes, we are those parents, we are going to end up on a first name basis with the Pediatrician’s office at some point. She has been to the regular Pediatrician 2x since she got out of the hospital, once for not pooping for 6(!) days and then now for this. Turns out she had a pretty good sized scratch on her eye. Dr. Marriott (I know!) put some florescent drops in her eye and held a black light over and we could see it pretty clearly. He said it would heal on its own, but gave us some drops to help keep it clean. Getting the drops in her eyes is a bit tricky, but she seems to be feeling better and is not rubbing her eyes as much. We have cut this girl’s nails but they are still sharp little things! Hopefully she learns not to do that.

So that was fun, a little bit scary for me. I had flashbacks to when she was in the hospital. She looked like a zombie, with her eyes half open, and then she stopped opening her eyes altogether. We never were told exactly what was going on, they thought it might be the pressure in her head holding her eyes closed. Plus, everyone keeps commenting on her eyes and how she always looks cross-eyed and might have a lazy eye. She has had her eyes checked twice already and both times they have been fine. She does have another Ophthalmologist visit at the end of October, so we’ll find out more then.

Right now, a major source of frustration is communication with her Neurologist. We are stuck playing a game of tag with her, we’ll call her, leave a message, then get a message from her, then talk to a receptionist who says a third thing. We were hoping to have a new EEG done to evaluate whether she can wean off her seizure meds, and they keep prolonging the process. I was hoping we could be done with it by the end of the year. Now, we’ll have to wait until January.

I can’t believe my little girl is going to be 1 year old. This has been the hardest year of my life, no doubt. Being a mom is the hardest and yet the easiest thing I have ever done. Having Aly has changed and challenged everything I thought I knew. I am so excited to have her 1^st birthday party and celebrate the first year of her life. She deserves it.

GO ALY!

11 Month Letter

Dear Aly,

Happy 11 Months Baby Baboosh!. Today is also Gr Gr Paul's birthday. You sat in his lap and had cake. You like everything we feed you. Sweet, sour, salty, we haven't tried spicy but I'm sure you would like it too. You are doing so well. You are finally able to push yourself to sitting from laying down. You are getting really close to crawling, you get up on your hands and knees and rock, but you haven't tried to move yet. You can stand with support and you are learning to move from sitting to standing, knees to stand and all kinds of transitions. These are very important things your physical therapist wants you to learn. You are talking a lot, but not saying any actual words. We think you are on the verge of figuring it out. You are doing well with Daddy at home and you are still taking two naps a day and sleeping from about 7 pm to 7 am with 1 or 2 wake-ups per night. You eat about two bottles of milk and then several baby food meals a day. You still wear 9 month clothing and size 3 diapers. On your last neurologist visit you weighed 16.9 pounds and you were just under 28 inches tall. You are always very happy in the mornings. You are very friendly and you suck your thumb whenever you are tired. No more binkies for you. We are trying to get you to start drinking from a sippy cup instead of a bottle. You go to physical and occupational therapy 2x a month, and your therapists love you and say you are one of their favorites. We can't believe in just another month you will be one year old. The time has flown by! You are a miracle baby girl. We are so happy we have you and we love you always and forever

Love,
Mama

Why?

Wish I had something of importance to write about. We're holding steady. Ben has been doing the stay at home dad thing for two weeks now, and I think he's getting the hang of it. I think he is also beginning to understand that Aly is a full time job! He works all weekend and tries to get as many hours as he can, so Aly and I get a lot of one on one time on Saturday and Sunday. Still can't believe how much my life has changed in only a couple of months.

I have bad days here and there. I try to focus on the good, but some days I still have trouble. I think I will need some time to process things. In a way, I feel like I am grieving something, but I'm not sure how to grieve something I'm not sure I lost. There is still so much that is unknown. There is so much I am still worrying and wondering about. I know it's not good to worry about something you can't control, but the way my mind works, is that I only worry about things I can't control.

I still feel that life is too unfair. I still feel that Aly didn't deserve anything that happened to her. I still wish I could find some comfort in something bigger than myself. Once again, I find my faith (or lack thereof) tested. I don't know if I can or if I want to believe in God.

Aly still has physical therapy and occupational twice a month, plus early intervention and she will be seeing her neurologist often and she has some tests coming up. She is still behind. It still stings when I see a baby younger than her doing something she can't do though. I know I focus too much on the stuff around me and what other people are thinking and doing, but I can't help it. I still say why me? Why us? Why Aly?

Someday I hope to move past needing to know why. But today it still bothers me. Today I want to know why and what. Today I worry about the future, even though it may not need worrying about.


GO ALY!

Miracle Child

Yesterday, I started writing an extremely negative post. I was feeling very sorry for myself. Very jealous of other people and their "easy" lives. Aly's doctor visit today brought me back to earth.

I am lucky. I am blessed. My baby is doing much better than expected. Things could be so, so much worse. Instead of wasting my energy being jealous of everyone else and feeling punished, how about I appreciate that my daughter is in the business of making doctors scratch their heads and eat their words.

We found out that another baby had a similar situation at the hospital, with similar symptoms. They were worried an infection was going around. It wasn't an infection. Sounds like the other baby had a much worse outcome than Aly.

This doesn't mean I'm not gonna feel angry, or jealous or like we have been treated unfairly by God. But this does mean that I'm going to try harder to keep things in perspective.

I still have my baby. She is my heart outside of my body. She is happy. She is thriving. She is proving them all wrong. She is amazing. She has such a capacity for love. She trusts so readily. She forgives. She smiles and I swear the entire room lights up. These are the things I need to remember when I am asking, "Why me?"

What a difference a day makes.

When Aly was in the hospital, all I wanted to do was hold my baby. When I am feeling especially low, that's all I need to do, and she reminds me what is really important. That I can still hold my baby. And that means everything.

GO ALY!