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!

Ch-Ch-Changes

This week we have had a little bit of a break. Aly has not had any Doctor or therapy appointments for the entire week. Of course she will make up for it next week by having three. Seems to be the way things work. All or nothing.

Since Aly was 3 months old and I went back to work, she has been going to daycare. Our daycare provider is amazing and we love her. I believe her quick action the day Aly had the first seizure is the reason she is still with us. She visited Aly in the hospital and made sure we had everything we needed. We also love how close she lives to us.

After Aly got out of the hospital we decided to have her stay with her Grandma for a few weeks so she would get some one on one attention while she was still getting re-acclimated to being out of the hospital. The plan was to send her back to daycare the last week of August when her Grandma goes back to school (she's a teacher).

Unfortunately for all involved, we're not going to be able to take her back to daycare. We agonized over the decision, whether to find another daycare or to figure out a way for her to stay home with us. We had some extra stuff to consider, if she would do well in a regular daycare, would one take her, how much more would it cost...etc. Well, we added it all up and something had to give. So Daddy decided his job was the easiest to sacrifice and he will be quitting his full time job to stay home during the day with Aly. He will still work part time on nights and weekends. We did not make this decision lightly. We felt it was in Aly's best interest and that's kind of what it all comes down to. We live in a world where certain college degrees are better to have and while Ben already has a Bachelor's, he is not able to do much with it. He was planning on going back to school next year anyway. So this just all kind of happened in a matter of weeks. It will be an adjustment on all ends.

We are lucky that I have such a good job with good benefits and that we don't have a huge mortgage or loans to pay off. Yes, money is going to be extra super tight. Even though we are saving on daycare, we are still losing an income and we are going to be facing some large medical bills. We also have very supportive family and friends that have been able to step in and help in the mean time. Each Grandma has been on Aly babysitting duty this month and they have been so much help.

We have a busy week coming up. Aly has her much anticipated Neurology follow-up with Dr. Betsy. I have a ton of questions that I need to gather up. She will start having her normal Early Intervention visits a couple times a month but she will be able to space out her physical and occupational therapy visits. She has made a lot of progress since she has been home. I would say she is almost back to where she started. Now she has to work on doing the age-appropriate things a normal 10 month old would do. I have to believe having Daddy home to work with her and take her to her rehab will help her even more.

GO ALY!

10 Months and Other Stuff

The Happy 10 Month-er

Aly turned 10 months on Wednesday. I write her a letter for every month about what is going on. Our lives have changed so much in the last month, I can't believe where we started, where we were then, and where we are now. Next month things will have changed even more. Some days I just hold Aly and laugh and kiss her and marvel that I have a ten month old baby. Some days (like today) I just hold her and cry a little. Then she laughs at me and I forget what I was crying about. Today she has decided measuring cups and spoons are her new favorite toys. She will play with the everyday things like cups and spoons much longer than any fancy baby toy.

Here is the ten month letter:

Dear Aly,

You are ten months old today! I can't believe how fast the time is passing. On your last month birthday you were still in the hospital. Now you are home and doing so well. You are doing PT or OT at least once a week and you have Early Intervention planned for at least once a month as well. You are making progress. You can scoot again like crazy and you can sit up by yourself for longer. They are making sure you don't neglect your left hand. You have some great doctors and therapists working to get you all better. You are finally starting to wear 9 month clothes. You are in size 3 diapers for the most part. You weighed about 15 lbs, 12 oz at your last dr. appointment, so you are gaining some weight back. You are eating lots of solids now, you still like everything. You have been baby sat by Grandma Roxann for a few weeks, and now Grandma Robyn is taking a turn. You are always in a good mood in the mornings. You wake up once a night to eat. Sometimes you won't take your two naps and then we have to deal with a grumpy gina before bed. You had your eyes and ears tested today and both were fine. You had a follow-up MRI a week ago and that went well. People are still sending you presents, thinking about you and cheering for you. You have brought nothing but joy and love to everyone. Mama and Dada love you so much little boosh. We are so happy to be your parents.

Love always,
Mama