Tuesday, December 30, 2008

Life is Good

I am loving having no therapy right now. The freedom of not worrying about getting to, having therapy, and getting home in time for lunch, nap or dinner is wonderful. I love all of our therapist and they do wonderful things for my daughter, but recently it had become so stressful. This little break was a great idea! I think it has been good for the whole family.

We have not had to have such a strict lunch and nap schedule, and that has been fun. We have been able to go out and play and go shopping whenever we want and just relax. Emma has been so relaxed! She has even wanted to be in her walker more and her wheelchair. She has been very active in all she can do!! We have been able to spend so much more time playing at home with her new toys and her old ones too.

She has started talking lots more too. She now says boy, girl, Mickey, bath, bird, and lots more. I think the break has given us all a mental vacation and we can just be.

I will enjoy the rest of the little no therapy vacation, and then next week we will be ready to hit the ground running with all her therapies again. We will be refreshed and ready to go again. I recommended to all parents of special needs children to take a break and just be. I had forgotten what it is like to just be!


Friday, December 26, 2008

The Day After Christmas

It always makes me so sad to see Christmas come and go. I hate to see the tree with no presents under it, and I dread the process of putting my many decorations away. It makes me sad to see the weeks of preparation come and go so fast and it is always a little bit of a let down when the day is done. I guess I spend so much time getting ready, that it is sad to see it go.

Do not get me wrong. I had a great Christmas day with my family! (all my family) Emma was so much fun to watch as she stared in awe of all the presents and new toys. I laughed watching her clean up each piece of wrapping she tore off of packages. I loved making cookies for Santa on Christmas eve and I really enjoyed the fantastic Christmas Eve service at Cross Point. (an interesting side not on church, Jeff Fisher was in attendance and that was cool. Go Titans!)

But then we finally returned home with our car loaded with goodies and one tired little two year old, I sorted through all the presents and put them either out or away for later fun, and then I looked around and it was over. The tree was no longer surround with presents, there was no more looking forward to seeing her face and watching her unwrap, and seeing all my family enjoy what I had lovingly picked out for them. I looked at Daniel and said it was sad to see all the hours of prep work just end so fast. I loved every minute of preparations and I enjoy finding the perfect gift for people. I guess I just need to enjoy the memories from this year and start working on next year and get over that Christmas is only one day a year.

I love Christmas so much!! It was a great year full of fond memories and laughter. 2008 was a great year for my little Family of three. I look forward to next year when she is even older and understands even more. Heck, I already bought two presents for next year today:) I hit one after Christmas sale on the way home from lunch today. I am nuts I know, but that is me. I love Christmas and I love a good deal.

I hope you family had a good Christmas! I know ours did and we will have many hours of fun to look forward to as we play with all the new toys!!

If you want more details of our Christmas you can go to Emma's caringbridge page. She is at caringbridge.org/visit/emmarosezook

I better go and enjoy the quiet before she wakes up from her nap!

Tuesday, December 23, 2008

Twas the night before...

Twas the night before, the night before Christmas
and all through the Meme's house
most of the grandkids were doing holiday crafts,
and one was wrecking the house.

Oh what fun!!!

Had to share as holiday fun abounds at Meme's house in the Kingston Springs!!!

Love to all


Monday, December 22, 2008

Five year wedding anniversary!

As of yesterday I have been married to my wonderful husband. Wow, time sure flies when you are having fun or well when life is crazy might be more like it.

I love my husband but we have never really had great wedding anniversaries. Here is why: on our first year, my grandmother died unexpectedly and Daniel had to drive to my school to tell me on the last day before the holiday break. When I saw him, I thought he came to surprise me, he sure did but not in the way I was thinking. It then snowed really bad and we had her funeral in the dark with no heat. Great memory right. I do remember we keep our dinner reservations, but ate fast because the snow had started.

The second year, was okay. I was five months pregnant and we went to see the Nutcracker. I loved it and we had a great evening. Even if I had to pee three times during the ballet:)

The third year, Emma was in the hospital. We were discharged that day. So, we were wiped out and were dealing with a sick child.

Our Fourth year, Nana kept Emma and we went to a nice dinner and rented a few movies to enjoy alone snuggled on our couch. But the wind knocked out our lights and we ended up going to bed early instead to stay warm.

This year, we slept in, skipped church, and ate breakfast in bed as a family. Then, we braved the very cold wind to meet his parents for lunch. Then, my husband had to go to work. So, Emma and me took a nap and played alone. Not a horrible day but not real special either. Money is too tight to waste so we kept it low key and just hung out together.

So, there you have it. As I said we have not always had the best anniv. But we have a pretty good marriage which is all that really matters. My husband works hard to provide all he can, he helps with household chores, is a great father and mostly an understanding husband during my crazy moments:) I am honored to be married to a wonderful man who I love so very much. Love you Daniel!!!!

Now, I am focused on getting finished with Christmas and enjoying the special little moments. I do not want to miss one little moment of fun and Christmas cheer


Sunday, December 14, 2008

A day for mommy

I actually got to spend all day yesterday by myself at home with nothing that had to be done. I slept late, woke up alone and spent most of the day in my pjs. I wrapped presents and went through Emma's toys to make room for new ones. It was so nice to take my time and not have to worry. I watched a movie and wrapped all day long.

For those who are wondering where my family was, here you go. Daniel left for work at 5 am yesterday morning. He had all new equipment delivered to the YMCA and worked all day to set it up. Emma spent the night Friday with her Nana. Daddy and me went to dinner Friday night and talked adult talk, not toddler talk. It was nice. Then, Saturday, I awoke to a house quiet as can be and all alone.

To some this might not be a nice way to spend the day, but when you spend all day everyday taking care of people, sometimes it is nice to just be alone and not have to worry about running and going all day long. The last month or so has been so full of appointments, therapies, and such that I really need to just be me.

Do not get me wrong I love my daughter and my husband, but mommy really needed Rachel time. i will be a better parent and wife now that I was able to recharge my batteries! Even though I spent the day wrapping presents and going through toys, it will still a day for me. This are two things it is hard to do with a two year old under foot. Plus, I did not have to try to fit it in during a nap or after bed. I took my time and just relaxed.

I was really happy to have my daughter return to me just in time to watch Nemo (her current favorite movie) and eat dinner together. She was so happy to see me and i her. Unfortunately daddy did not get home till much later, but I was thrilled to see him too. i felt happier and more relaxed then I have in a long time. Thanks Nana for the break!

Anyway, Emma is a champ in her new wheels and is really getting good at getting around in it. I am also getting stronger at lifting it and carrying it around. It is heavy though!! I am so proud of her and am loving her face while she is in it. She really likes to have her freedom now. She seems to be better from her second UTI and we will be starting new daily medicine next week to try to keep from getting anymore UTI this year.

Now, I just need to finish my last two Christmas presents shopping and relax and enjoy the holiday. I hope all who read this take a day to themselves soon, it will make you a better person.


Sunday, December 7, 2008

Dreams Rearranged

I have not posted this week for a few reasons. We have been pretty busy and not around a computer, and I have been trying to wrap my head around the newest development with my little Emma. I have ran the gamut of happiness, sadness, optimistic, and mourning over another dream diverted.

We have made the hard decision to get her a wheelchair. We have decided to do this for a few reasons. Number one being Emma needs to be able to get around easier and safer. Her walker is not always the best or safest in all cases. She is very frustrated to not be able to do certain things on her own. She hates being carried nowadays and fusses when she has to be carried. Plus, if we are going to start her in school this spring she needs a better way, then her bottom, to get around the halls or classroom. The process to get a wheelchair takes a few months and she will need to get use to it as well. We are going to get to trick it out and pick colors and all (lighted wheels too)

We are lucky to be able to borrow a wheelchair while we get her's made. She tried one out this week, and she was able to get around with no problems. She was able to do it with no help. She just knew how to do it. It was fun to see her explore at a new height, she could see so much more. She went all over the PT clinic!!

It has been hard to deal with this new development. I guess having another dream diverted in another direction, was more then I could handle. I really wish that something could come easy for her or in the normal way. We are lucky, that the MRI did not show anything to worry about, and we still think she will walk someday, but we are not sure when or if it will be without assistance of some kind. We all just wanted to give her more of a equal footing with others her age, and her in a chair will help due that. I am happy to have her able to move and all, but it was not the route I had planned. In the back of my head I knew it could happen but I prayed she would walk before that. I have spent a lot of time this week reflecting on all of this, and crying a few tears. But in the end it is for the best, and she was so happy to be in the wheelchair, that it makes it really hard to be sad, when she is so happy. I am sure it will take time to get use to the attention she will draw in her tiny wheelchair, but she is so cute in her tiny chair.

I also wanted to share the great memory we made this morning. My husband makes cinnamon rolls before church each week, and brings them to me in bed (yes, he gets up with Emma on the weekends). Emma got in bed with me to eat, and when daddy came back to join us, Emma patted the bed beside her for daddy. So, we all snuggled up in bed and eat! It was so cute and nice to experience such a normal activity as breakfast in bed. No worries, no therapies, no medicines, nothing but family.

Anyway, I will keep you posted on the wheelchair news, as we continue to talk and plan. Now we are working on getting approval from our HOA to put in ramps, and getting a wheelchair pass from our doctor. I continue to pray for peace during this new storm of life. I am not giving up on my dream of her walking, because I know someday she will in some fashion! I will not give up on my strong little fighter.

May Peace come to all who read this,

Saturday, November 29, 2008

What a Wonderful Life

What a tiring day. We have spent the day putting up Christmas trees (not my own), at my grandmother's and my mom's house. My grandmother is 88 and still loves to decorate for Christmas, so we helped put her tree up for her. She was so happy to have it done, and it was the first tree Emma had seen this year. She really loved watching us put it up and plug it in. My Grandmother loved watching Emma help:)

Then, we headed to my mom's to work on her house, and Emma laid down for her nap! It is a lot of work, but worth it in the end. Emma woke up from her nap, and my mom's house was decorated to the hilt with Christmas. My family loves Christmas and has tons and tons of decorations. She was in awe! She just stared and said wow! It was so cute and sweet to watch her look around and take in all the beautiful decorations. Then, she started saying bobobo which if you do not know that is really hohoho!

It made all the hard work of dragging out the tons of boxes my mother has and unpacking them, worth it! Now, we are just watching a Hallmark Christmas movie and laughing at Emma taking apart the Mr. Potatoe Head Santa apart over and over again.

It has been a long day, but worth the hard work. Now, maybe tomorrow I will have the energy to do my own house or maybe it will be next week when I do it. I am sure it will get done at some point soon.

I am loving how much she loves all the Christmas decorations and I am really looking forward to seeing her meet Santa again this year. Last year she cried and screamed. I am hoping that does not happen again this year. But if it does it will be another memory to laugh about in the years to come. I am thrilled to see her look at the lights in the neighborhood and open presents. She is a little bit older then last year and I think it will be even more fun then last year.

My promise to my family is to try to slow down long enough to enjoy the holiday season and all the wonder it brings this year. My charge to you is to do the same. Relax and enjoy the season of Christ's birth. It does not matter in the long run if all the bows are perfect or if every present is found and bought. Relax and enjoy!

love Rachel

Wednesday, November 26, 2008

So Thankful

This year I am so thankful for so much.

First and foremost, I am thankful for my family who loves me no matter what! My family has been such a big help and support as my husband and me continue to care for our little angel. I am not sure what I would do without each and every one of them. I would list them all but you know who you are!!!

I am thankful for my husband who works two jobs to allow me to stay home and take care of Emma. Daniel you are the love of my life and I am lucky to have you as my partner.

I am thankful for every little giggle and smile my Emma gives me. Not to mention all the singing of Mickey Mouse she does too. I have cried many tears over her many illnesses and surgeries, but I am thankful for her little life and her everlasting joy for life and her peeps!! She is my heart and soul for sure. She will always be my angel!

I am thankful for all my friends who support me on the good and the bad days. So many of you know what I need when I need it and just do it. It means the world that you understand how complicated our life is and you do not mind when I go for weeks with no time to talk or get together. Each and everyone of you are dear to me and I would not be able to stay as sane as I still am without your help! YOu all rock!!!

I am thankful for God being so good in the midst of all the craziness and the storms that rage around me. But God is faithful and is always there holding my hand no matter how bad or good things are going.

There is so much I am thankful for, but right now I am thankful for the yummy food i am smelling downstairs, and I am going to go check on my first of two Thanksgiving dinners. One tonight and one at my house in the morning. YUMMO

Love and thanksgiving to all

Monday, November 24, 2008

A moment to vent

I must finally share a situation that has been going in our life for a few weeks. I have not shared this on line, because a friend who reads this blog was not aware of this situation and I did not want to be the one to inform her. (Hi Melinda)

Anyway, we found out in October that Emma's diagnoses of VACTERL was taken off the list of disabilities for her Tennessee Early Intervention. This is the organization that takes care of birth till three and helps them get therapies and schooling before they are old enough to be in the Metro schools. Anyway, when she was referred to the TEIS (short for the Tennessee Early Intervention) she was automatically accepted due to her diagnoses. She did not have to be tested and all of that. Well, this year they cut her diagnoses off the list, and we had to go through more testing to continue with her therapies and such.

I was very angry with this and the undue stress it caused to worry about her qualifying again. Here my child does not walk or talk, and I am being told that she may or may not continue with her therapies. How can the state say that VACTERL children, who are born with so many health problems, do not need help and support. They obviously do not understand how much we deal with everyday and how we could not make it through without the help and support from TEIS.

Emma did have enough delay to stay in TEIS, but now our friend Melinda and her daughter are having to worry about her staying in the program. Melinda is so worried and stressed too. This is just causing undue stress on all! The state needs to wake up and realize that VACTERL is serious and affects children for a long time. I believe I will start a campaign soon to help them understand the stress and heartache we suffer due to VACTERL. It is a rare illness but it is very real to the families who fight it daily.

Okay I am better now that I took a moment to vent.

Ooopps! Emma has dropped her Mickey Mouse and needs some help


Friday, November 21, 2008

Broken Hearted

So, sad to report that in fact the adoption my friend was trying to complete, fell through. The mother decided at the last minute to keep this baby girl.

My heart is breaking for my dear friend and her family as they are trying to cope with this latest heartbreak. They already had a deep love for this little girl, as they had spent time caring for this baby in the hospital and they had spent months getting ready for her at home.

Even though they will not be bringing her home, they will forever love her and pray for her safe keeping.

Please pray for their healing during this very difficult time! Pray that friends and family can find healing words and actions to care for them as they arrive back her in TN. Pray for their beautiful son Owen as he also is mourning the lost of his sister.

Words can not express how sad we all our and how we wish this ended differently for all involved.

With sadness and hope for the future.

Tuesday, November 18, 2008

sad news/breaking heart

It is with a very heavy heart that I share that my friend Adrienne, Jim and their precious two year old Owen, are right now dealing with the very harsh reality that they may long be bringing home their precious baby girl.

The birth mother has had some second thoughts and has decided to take the baby home with her now. We are not sure right now if this is the end for my friend and her family, but they are having to wait and pray hard that this be resolved in the best way for the baby.

I can not imagine what they are going through as they have already spent lots of time with this baby and prepared for weeks for her arrival, and now they do not know what will happen. My heart is breaking as I know how badly they wanted this baby girl. Adrienne has dreamed of her for so long and thought her dream was finally happening. Now she is living a very real and vivid nightmare.

Please pray that they are able to find some peace as they wait and that they are able to explain to their son what is going on. He is a very smart boy and was already in love with is little sister. This will be very hard to explain to such a young child.

I will let you know when I know more details or when a final decision is made by the mom. In the meantime we wait and pray! that is really all we can do.

My heart and love go out to my friends!


Monday, November 17, 2008

Make me smile

Things are looking up this week.

Quick update to the story that follows: The mother who is suppose to give her baby to my friend (read below to learn more) is having second thoughts. Please pray this adoption does go through, as my friend and her family are already attached to this little angel.

Two things are really making me smile right now.

First of all Emma. She has been so silly this weekend. She has been chatty and giggly this weekend. That has really warmed my heart this weekend. She is such a sweet heart and the love of my life!

Second of all, a dear friend of mine is in the process of bringing her soon to be legally adopted newborn baby girl home from the hospital. I can not say much right now, because it is not legal as of yet. My friend Adrienne has had a lot of heartache trying to carry a baby to full term herself, but she and her husband Jim have been blessed to adopt a little boy (almost three now) named Owen last year from Russia. He was a little over one when they adopted him and brought him home. Now, they are being blessed again with their baby girl who was born last Friday.

I am so happy for this family. They are so sweet and so caring. They have been through a lot of sadness, but a lot of happiness with Owen and now this new baby girl too. I am looking forward to meeting this new addition when they return from New Jersey, where she is being born, and sharing their excitement on their growing family.

I wait anxiously everyday to read her blog, and hear all about the time they have spent with the baby in the hospital, meeting the mom and grandmother, and how Owen is loving his new sister. It makes me so happy to share this experience through her blog. They will have great memories to share with the baby when she is older. She is a lucky little girl to have two families who love her so much. One who wanted to give her the best she could, by giving her to a family who will be able to do just that, and one who waited to happily to meet her and take her home as their own.

It has made me reflect back to Emma's birth and how she was born and her story of birth. In the first 24 hours Emma went for a ride in an ambulance and survived her first tornado. Yes, she did! About four hours after birth she was transferred to another hospital, hence the ambulance ride, and then the next day a tornado ripped through Nashville. It did not do too much damage here, but it did go through here. So, she had a lot happen in a short time. I guess everybody has a special birth story. I know Emma does and so will this new addition to my friends family.

Love and I hope to share more when I am able. Just pray that the Fleming family has a smooth transition from a family of three to four, and pray for Jim and Adrienne as they take on the care of another special little child. They are great people for deciding to care for those who need it.


Friday, November 14, 2008

Busy week and a sad mommy

So sorry that I have been MIA this week. We have been busy with therapies this week and trying to get Emma better. They finally got her on a better and stronger medicine late Sunday night and it seems to be working, but making her cranky. We are just praying this does not mean her kidneys are getting worse. That is a one of the warning signs, but we pray it is not. We see her kidney doctor next week, so hopefully he can make me relax about it all. He is good at that. We see him a lot and he is a great doctor who really cares for Emma.

I am having a low week. They happen ever so often. Sometimes it just gets to you when you constantly are dealing with so many doctors and therapist. I feel that I am constantly either heading to an appointment or coming from one. Our days are full and not full of friends and play dates.

Anyway, Daniel and I had a long talk last night and I shared my emotions with him, and I feel better today. I sometimes just get so frustrated that she is not able to walk yet. I dream nightly of her running and dancing around. I am sure that someday this dream will be a reality, but in the mean time it is still hard to watch your child struggle to accomplish simple everyday task like getting to her toys, finding her mom in another room and so on. She is able to get what she needs and all but it is not at the speed or the way others around her do. She gets so mad at her cousin who runs around and leaves her. Not to mention the looks we get when people realize that she is as old as she is and does not walk or if she is in her walker they stare too. I just want to yell what are you looking at!!

I am blessed though to have such a loving daughter who makes me laugh daily even when I am down. She has such a love for Mickey Mouse, outside playing, her family, fish and so much more. She plays with her music and sings all day long. Her sweet little voice could melt any heart.

Anyway, all in all it has been a busy week and Emma is slowly getting better. I am too! Hopefully with a few more talks with my loving husband I will snap out of my down time:)

Friday, November 7, 2008

Doctor Drama

Well, yes Emma does have a UTI. But to find that out was lots of drama. Emma does not have normal anatomy down there, so to get urine for the test is lots of fun! NOT!
The nurse we had yesterday was new to Emma, and had not had to do this yet. So, she set it up and tried not once but twice to cath her. It did not happen. Emma was beside herself with screaming and crying. Tears actually collected in her ears while she laid there. Finally they gave up and asked us who had been successful with her. We told them Pam could always get it. So, they went and got the other nurse. She got it in a heartbeat and Emma peed. Yeah! Pam tried to tell them what to do for the next time. Poor Emma! But it was worth it since she is sick. We do not like to torture her, but when it comes to her kidneys we do not take chances.

Now, we wait and make sure the meds they gave her are correct, if not we change them or head to the hospital to get IV meds. We pray that does not happen since the last time she needed IV meds we were there for 10 days. We do not want to experience that again. It is no fun!

Anyway, just a update on yesterdays drama. My ears are still ringing from the screaming, but she is doing better already.


Thursday, November 6, 2008

Never a dull moment

Well, this morning we woke up and I tried to decide what we should do this morning. Normally we go to story time on Thursday's, but she has a little cold, and I was not sure she should go. So, I decided with Meme that since this was the last of the warm days we are expected to get in the next seven days, we would go to the park and play in the nice fall sun. So, we loaded up and headed down the highway to Meme's house. During the drive I talked to Emma all about the beautiful fall leaves. They are so pretty right now, lots of golds, reds and oranges. Emma just looked out the window admiring the beauty she could see.

Life was so good as we traveled down the road with all the fall leaves falling on our car.

We got to Meme's and Hudson was asleep. So, we sat down and Emma played for a little bit. During this time, Emma got more and more cranky. She has been weird all week, but today is worse. So, we think she might have a UTI. Which, is not good when she already has damaged kidneys. We never want an infection. So, now instead of going to the park, we are heading to the doctor. We canceled a late afternoon eye appointment to head to see our PCP. There goes today's plans of fall fun in the sun!

Like I said never boring, and I should know better then to plan anything. Plans seem to change when Emma's involved.

Frustrated and praying for no infection

Saturday, November 1, 2008

Halloween Fun

Halloween last night was so much fun. Emma loved to wear her little Minnie Mouse outfit, even if she did not like her ears. She was still not too sure about going up to houses, but she liked getting stuff in her bucket. She would not say hello to anyone, but she yelled bye bye to everyone really loud. Emma was really happy to have her new friend Kadence with her in her wagon for trick-or-treating. Then her friend Owen joined us for a few houses too! Emma loved having her peeps with her.

This year was a little different since we stayed home instead of going to Meme's, but we had a blast. We decided to have a few friends come that were her age, and have pizza and then head out to get candy. It worked out pretty well. I got a great workout lifting her in and out of the wagon to go up to houses!! But the wagon was easier then a stroller for sure.

It amazes me how much she has changed with each of the three Halloween's she has been alive for. She was only 6 months old at her first one, and she was a fat little frog. Then, last year she was sitting up and smiling big in her little duck outfit, but this year she looked like such a big girl in her Minnie outfit in her little walker. She was such a big girl, and I started crying when I lined up all three photos (I had printed out a photo from her halloween party at the library this year). I sat in my bedroom crying as I reflected on how much she has changed over the years. She is really starting to look like a big kid. I am not sure if I like that yet or not. But I guess I do not have much choice do I?

Anyway, Emma and the family had a great Halloween. Each year gets more fun as she understands more and more what is going on. Next year she will probably want to eat her candy, instead of letting mom eat it! This year it was just so exciting to cut a pumpkin and wear her costume. She just squealed with delight the whole time. Life was good for all!


Wednesday, October 29, 2008

Dancing with Cinderella

I thought I would share one of my favorite things to do with my sweet little Emma. 

Last night while I was getting Emma ready for bed, we were listening to daddies Steven Curtis Chapman's CD.  It is the one with the song he wrote for his little girl who recently passed away.  It is the sweetest song.  Anyway, I was getting Emma out of the bath when that song came on.  Well, Emma loves to snuggle right after you get her out of the tub.  So, I wrapped her all up in her monkey towel and we danced around the bedroom to the song Dancing with Cinderella.  I was so close to crying.  She is growing up so fast, and listening to the song which talks about the little girl growing up and dancing with her daddy at each stage of life.  It is so sweet!  

So, Emma and me just danced around and around.  She laughed and laughed the whole time.  I held her tight and thought wow were did all the time go.  She is two and half and it just seems like yesterday that she was in the NICU right after birth.  It was such a sweet moment in time with my sweet girl.  But all to soon it ended and we went back to getting ready for bed.

Time flies, so hug your little ones, no matter how big, tonight!!


Sunday, October 26, 2008

Mom's Night In

Friday night I went to a mom's night in at a new friends house.  We had a really good time, hanging out, eating great food, and playing games.  It was really nice to spend time with other moms without the kids in tow.  We could actually talk and hear each other!  Emma spent the night at Meme's and Pop's.  She spent the whole night singing to Pop!!  To cute!!!!

Back to the ladies night.  This group of women get together once a month, and I got added in due to my friend Adrienne who attends.  This was the first night I had  been able to attend.  Most of the women live on the same street, and hang out.  Most of them have kids three and under.  So, they started getting together to spend time away from the kids and recharge.  Which trust me we all need. 

We sat around the table sharing feeding issues, funny stories and tips on safety issues in the house.  It was funny to hear all their stories about thier silly little tots.  I shared a few about Emma too.  

I did have a moment of feeling out of place though.  I was sharing a story about Emma, and I forgot that not all knew her story.  So, I was talking about her not walking, and I got a few strange looks, and I went oops, and just sort-of said she does not walk.  I did not know what else to say.  I am sure they thought what is wrong with this kid, but I did not want to talk about it.  I just wanted to relax and not think of it.  Then, at one point I mentioned her small clothing size, and one mom said I have got to see this kid.  She sounds so small.  I just laughed.  

Later though, it hit me that even in a room full of mom's just like me, I do not totally fit in.  They did not do anything to make me feel that way, but just listening to them talk I know that I am a little bit different.  I am different and my stories about my baby are not the same as theirs.  Mine are tinted with doctors, illnesses and hospital stays and of course therapy sessions.  This does not make me strange just a little bit different I guess.  It use to bother me more, but now I try to remind myself to celebrate my unique little angel and experiences, and not dwell on the other stuff.   

I did have a great time and I am looking forward to next month.  We all need a break, and I need to spend a little time out of the madness of my life.  I am also really looking forward to getting to know the other moms and their kids too.  Our kids have played together and they all love to do it!  They accept that Emma is different and they do not mind!!!  I am gratefully to new friends and old ones too!  They are what helps support me through the hard times and I am so lucky to have wonderful friends and family!


Monday, October 20, 2008

What is under your sink?

Saturday night, I was putting items back under the sink and some of the items struck me as odd.  I guess I should explain why I was putting things back under the sink first.  My father-in-law and my husband spent Saturday doing some chores around our house.  They hung a fan in Emma's room, cleaned our fans in the rest of the house, and they cleaned the pipes under our bathroom sinks out.  (They were icky and slow to drain)  Well, to get to our pipes, they cleaned everything out under the sink and left it laying on the floor.  So, later that night, I was replacing everything back in it's place(you will learn as I blog that I am very OCD about my house).

I sat in our floor neatly placing the random stuff back under our sinks, and I looked down and I was holding sterlized water, gauze pads in sealed packages, Babylax, supositors, a suture kit, and a few other medical type items.  This struck me as so funny.  I went and found Daniel and asked him if he thought anyone else had those things under their sink or were we strange?  He also thought it was funny to see all that medical stuff laying in the bathroom floor.  Then, we started talking about which procedure added what to under the sink.  It is like a scrapbook of Emma's surgeries under our sink.  Most of the items came from one of her many kidney surgeries or from her bottom redo surgery:)  I am not sure why we keep them all, but they might be needed again so we do.

This makes me wonder what is under your bathroom sink?  Are you like us and it all medical "stuff" or is it the normal stuff like lotions, bandaides, and soap?

Love Rachel 

Thursday, October 16, 2008

Why the name a Different Normal?

I am the mom of a beautiful two year old named Emma.  She was born with what is called Vacterl.  (I will post more about that later)  Since the day she was born we have had a life full of doctors offices, hospital stays, medical tests, and medicine.  To us this has become normal in a sense.  To others it would be out of the norm or werid, but to us it is not.  We have embraced our life as a different normal!  

After two years, I have decided that it is time to share with everyone my views and thoughts on raising my special little angel.  She might be different, but she is mine!  I love her to the end of the world and would not change my daughters adventerous spirit for anything.  I would change the pain she has been through if I could.

So, this blog is going to be about my differnt normal life of raising Emma.  I look forward to sharing my story and thoughts on my journey of parenthood.  It is not the journey most parents dream of in the months leading up to giving birth, but it is the journey I am on.  

I will post soon more about Emma and her medical difficulties.

Love and peace to all