Wednesday, December 5, 2012

Month 16...Lord have mercy...

Well month 16 started off with a bang and ended with a bang.  Where should I begin?!
  Toward the end of May, HK was hospitalized due to a severe seizure.  
We spent about 4 days in the hospital in May and missed a beach trip.  Oh she keeps life exciting. 

Then my sister, Mary Margaret, got married June 9!  Harper Kate and I headed to Birmingham on Thursday before the wedding to hang out with Aunt Mae Mae, Cookie, Aunt Kitty & Aunt Carrie.  We all went and got a pedicure while HK stayed with Doc.  Then, we all met Doc to eat Mexican.  It was so much fun.  It was the "original" 6 of us plus HK.  We had fun, laughed, hung out then headed home to detox from our greasy, but yummy food and get ready for the bridesmaid luncheon the next day.  My dad had found wonderful babysitters for Harper Kate for all of the wedding festivities.  Mrs. Jan kept HK for the bridesmaid luncheon and Mrs. Lisa, a nurse from the hospital, kept HK for the rehearsal dinner.  After the wedding, a nurse, Julie, from my father in law's church & her daughters kept HK.  All 5 of these ladies were GOD SENT GIFTS as we celebrated with no worrying.  
  My aunt Sharon hosted the bridesmaid luncheon at her house.  What a beautiful home, and she knows how to host parties, so we all had so much fun celebrating Mary Margaret in the most girly way possible. :)  Friday night, JD's parents hosted a spectacular rehearsal dinner at Birmingham Country Club.  We laughed, cried, told stories about JD & Mary Margaret and the 3 sisters gave a list of "Top 10 Things you need to know about Mary Margaret." I'm sure there weren't many that were surprises. :) 
  Saturday morning we woke up for such an exciting day.  Harper Kate was the flower girl and rode down the aisle lying in a beautiful baby carriage.  She was such a trooper that day.  Earlier in the day, she began throwing up and continued for most of the day.  Jarod was home with her trying to get her ready & himself ready while I was busy taking photos.  Little did we know that the vomitting would send us right back to the hospital when we returned from the wedding. :(  
  The links to that hospital stay & story are here: 

Month 16 held other fun events too.  I took HK to the zoo with some friends for the first time!  She really enjoyed just being outside on such a beautiful day.  We started swimming therapy (which I will blog about more later) and did a couple other fun things in between hospital visits.  Here are the pictures from the month. :) 

Hanging out at the zoo
Mommy & HK at the elephants. 

Pigtails ready for the pool

right after the EEG (hospital stay #1)
after a bath to get the nasty glue out of her hair! (hospital stay #2)

Yippee...We can go home!  

After the hospital stay and no beach trip, we went to Birmingham to be with family

Swim therapy with our therapist
Swim therapy for the first time
Wedding Day!!!  
Isn't she so cute?!
JD with his new sisters!
What a FUN party!!!

beautiful flower girl...the ONE smile of the day!

At the pediatrician's office before our diagnosis...
Day 3..once she felt a little better

While I was there, I must say I mastered my "bed" making skills

No more oxygen!!!
Finally, we can play outside!

After NINE days, we are GOING HOME!!!!

Tuesday, December 4, 2012

The "gift" of suffering

 Back in March of this year, the pastor of the church I went to growing up, and where my family in Birmingham currently attends, asked Jarod and I if we would be willing to share our story.  I have to say that I despise seeing myself on cameras of any kind, and hate hearing my voice on video camera, therefore I was quite hesitant for very selfish reasons.  My husband, ever so gently, reminded me that we agreed that when we had Harper Kate we would do whatever to share our story so that God could be seen in the midst of difficult circumstances.
   Anyway, Tim (the pastor) was speaking on spiritual gifts and the final "gift" in the series was on the gift of suffering.  I think viewing suffering as a gift is perfect.  I choose to view HK as a gift ALWAYS, even though she does at times bring about short moments of "suffering."  I've decided to share the link to the video below & the link to his sermon.  I would encourage you to listen to the sermon and not just watch Jarod and me on the video. :)
   My father-in-law, who is also a pastor, spoke on Job a couple of weeks later and used the video to show at his church as well.  The link to that sermon is below.  I've hesitated for a WHILE to share this online, but once again, all this is for God's glory anyway, so I might as well follow His leading...

Video of our story: 

Link to Tim's sermon:  "The gift of suffering"

Link to Randy's sermon:  "Job"
Note:  You need to scroll down to the sermon on "Job"  Message #8

I promise more blogs are coming...It really drives my sister INSANE that I don't keep my blog up very well.  I'm sorry!!!  I'm working on it.  She reminded me that I will regret not having the small memories day to day if I don't write them down.

Friday, September 14, 2012

Month 15

    This was a pretty exciting month!  In late April we headed to San Antonio, Texas just for the day.  We saw the Alamo, walked down the Riverwalk and enjoyed the beautiful weather while it was raining in Atlanta.  We headed back that night, but really loved our day spent there. 
    Some of our great friends came to visit us in early May.  Chris, Adrianne & Alex came to visit.  We spent Saturday at the pool, having guacamole, chips and enjoying the sunshine.  We didn't do too much except just spend some time together.  We headed to Ted's Montana Grill for dinner Saturday night after a day spent at the pool (which is exactly what Harper Kate wanted to do!)  Sunday morning they had to leave, but it is always so refreshing to have friends come visit us over in Atlanta. 
  Harper Kate also got to brush her teeth for the first time, spent LOTS of time at the pool, picked strawberries with friends, increased her abilities in eating pureed foods, worked on her neck strength by sitting in her high chair LOTS of time during the day and watched the Alabama players as they were drafted in the NFL draft! 
  Enjoy the pictures below.  We are LOVING life with our angel!  We certainly wouldn't change one thing about it. 
HK & Mommy in the pool

Thanks Chris & Adrianne for my new shades!  I LOVE them!

Aunt Adrianne & sweet HK

Naptime at the pool....her favorite!

Not a fan of brushing teeth

I LOVE my sweet potatoes!

Mommy & Daddy got me my own seat this time!  

Drinks at Boudro's Texas Bistro in San Antonio

What a beautiful view from lunch

Lunch at Boudro's Texas Bistro on the Riverwalk 

oh just sitting up like such a big girl

Mommy & HK overlooking the Riverwalk

Daddy & HK at The Alamo

Mommy & HK at the Alamo

Love new experiences with my angel

And...cheering on the Bama players in the NFL Draft first round!

Thursday, September 13, 2012

I've waited to post this article for a while.  I wanted to take some time, think through my thoughts and make sure I communicate clearly and honestly.  Being a parent to a special needs child is different, but it is the most rewarding thing I could ever have experienced.  I wouldn't trade Harper Kate for the world, and I can guarantee none of our family members would either.  As I've said many times before, we have all learned so much from watching Harper Kate and being her parents.  She is not a curse, but a BLESSING.  She can be difficult at times, but her smile makes every moment worth it.  We don't ask you to look at us and feel sorry for us, just look at us rejoicing with who our daughter is and the fact that she is here.  
  My friend, who shared this article originally with me, no longer has her son.  Hayden is living a healthy, fun-filled life in heaven.  That doesn't make she and her husband's life any easier, but it reminds me to cherish each moment I have with Harper Kate here on earth.  Hayden, Lauren & Brent have reminded me to make each moment count.  To not take anything for granted and to rejoice in EVERY SMALL THING!  Thank you Lauren, Brent & especially Hayden for reminding me of this!  
Here is a link to the original article.  I've taken each point the author makes and expanded it myself with my thoughts.  Please don't be offended by anything or feel that I'm calling anyone or anything out.  I'm just being honest with you and myself.  
1.       I AM TIRED.   Isn't every mom tired?  I would never want to play the "compare" game, but my tired I do feel is different.  My child still sleeps in my room.  Does she have to?  No, probably not, but it keeps me from walking in her room 3-4 times each night to check her when she coughs.  Three times a day, I stop whatever I'm doing to administer medicines and prepare her tube feeding.  This isn't difficult or too time consuming, but it's 3 times a day to remind myself that not every mom has to do this.  They can continue with their day and not have specific times they need to be at home, or plan early in the morning on how long they will be gone.  One medicine has to be mixed seperately, then drawn into the syringe.  My day consists of making sure that every moment Harper Kate is doing some sort of therapy.  If she's lying on the floor, she must be surrounded by toys, on a blanket, and I must make sure she isn't lying there too long so her head doesn't get too flat.  If she's sitting, I need to make sure her chair is straight up enough that she is working her neck, but not so straight that her head falls.  Multiple times a day we need to work on grasping and playing with toys.  Then, there's always the important tummy time.  She needs a certain amount of time on her tummy also.  Oh yeah, feeding.  She has to learn to eat.  That takes 30 minutes just to get in a few bites to practice her skill.  I'm a stay at home mom, so there's also dinner, laundry, ironing, errands, play dates with friends, my Bible Study (that I'm really not willing to give up), 4 times a week driving to therapy, keeping up with Harper Kate's medical paperwork, doctor appointments and other fun mother duties.  This might explain the dark circles under my eyes at times, my hair not the cleanest you've ever seen it or the new found freedom of actually NOT putting make- up on.  I know...I never thought I would do that either!  Being tired would probably also explain these extra few pounds you see me carrying around right now.  I don't have much time to work out.  Could I fit it in? Yes, probably.  Would it help me feel better?  Yes, I'm sure it would.  I need to work on it, but sometimes I just want to sit.  I don't want to feel like I need to go work out, but like I said...I'm working on it. :) 
              All that to say, while I'm tired and Harper Kate is involved, a lot of these activities are fun, special time for my daughter & me.  I have such a wonderful relationship with her and I have no doubt that although she can't tell me, she has more love & appreciation for me & her daddy than any other child.  Her smile at the end of the day tells me all I need to know.  
2.       I AM JEALOUS. My friend, Lauren, who shared this article with me put this perfectly.  She said she was "hurt." I think that's the best way to describe it.  While sometimes I wish so bad that Harper Kate could do the many things other children can do, I think I'm just crushed and hurt that she can't have those experiences.  I wish I could take her to a birthday party, have her jump in the inflatable play house or slide that's there.  I wish she could sit in the grocery cart in Publix, rather than having to push her stroller around and have people look at my kinda funny.  I wish she could toddle around getting into everything and smiling at me so mischevious!  So, while there are so many things I wish HK could do, and it hurts me that she can't do them, I can't tell you how blessed we actually are.  
                My 19 month old child would love nothing more than to sit in my lap and look at my face all day long.  What momma can say that?!  Jarod and I plan to give Harper Kate all the experiences we can.  See, Jarod works for Delta which comes with lots of perks.  We can fly for free.  So, we plan on taking our child to DisneyWorld ASAP and as many times as possible!!!  :)  We also have the best family and friends in the WORLD!   Their children treat Harper Kate better than you could ever imagine.  They have tea parties with her, they lie next to her helping her play with toys, they give her hugs, talk to her and think of her absolutely no different than any of their friends.  Can I tell you how much that warms my heart? That my friends and family have taught their children such compassion and love at such a young age?  BRAVO to my Peachtree City and Newnan friends and my family!  You are doing such an amazing job with your children and it BLESSES my heart!  
3.       I feel alone. I do feel alone.  My parents & in-laws do not live here, no aunts/uncles that live here to help out, but once again God has placed friends, that are like family, by us and they are amazing.  I feel alone in that no one can really understand how difficult it is for us to leave her with a babysitter.  Everyone says, just get a babysitter and go out.  You need a break.  You're right, but leaving her with a sitter takes so much preparation and trust.  I feel alone in that no one understands my day and the struggles we go through.  You want to know how I met my friend Lauren?  Through FACEBOOK!  One of our mutual friends connected us and it has been so amazing to share our journey, while so different and yet so similar with her.  Thank the Lord for technology.  I know it seems silly, but without Lauren, and being able to talk to her at times I don't know where I would be.  
4.        I wish you would stop saying, "retarded," "short bus," "as long as it's healthy... 
           This make me furious and I'll be honest.  If I hear you say these words around me, I'll probably look angry.  Personally, I think it's rude, hurtful and incredibly insensitive to say these things.  When I hear a pregnant woman say "as long as it's healthy," basically you are saying you don't want my child because she isn't healthy.  That's fine, I wouldn't trade her, but you don't know what you're missing and how dare you say that to me!  Why don't you just put in your custom order for what you'd like in a child?  Better yet, why don't you be THANKFUL you can have a child?!?!  Guess what, there are women in this world who would give anything to be pregnant with a Harper Kate!  And they would consider her the biggest blessing they've EVER had!   People throw around "retarded" as an insult and making fun of people.   How self-righteous of you to think that you are better than someone and have the freedom to call them whatever you'd like.  I can guarantee you that while Harper Kate cannot outwardly communicate, she understands MOST of what is said to her.  If you ever said anything hurtful in front of my child, you'd better start running because I'd hurt you worse than you could possibly imagine.  Ok...did I get my point across?  I hope so.  I really do apologize for hurting anyone or offending anyone through this paragraph.
5.       I am human.   I'm just going to paraphrase what my friend Lauren posted about this topic.  She phrased my thoughts perfectly.  Thanks Lauren for putting words in my mouth and onto the screen! :) 
        "When God blessed me with Harper Kate, he blessed me with a caring attitude. I hurt for people that are hurting. I want to help everyone in need. I have gained such a love for life. I will continue to take care of my child every day. I will continue to dress her like a doll. I will continue to make each day a special memory. Often, people forget about the moms of the special needs child. Wow what would it be like to go on a dinner date weekly? A pedicure monthly? Hmmm just a shopping spree for an hour. I am human. I am only 30 years old. I still want to have a life. I still have dreams of going on a “2nd honeymoon” for my ten year wedding anniversary. 
6.       I want to talk about my son/It's hard to talk about son. I believe she saved the best for last. I really don't find it hard to talk about Harper Kate.  Anyone who has been around me knows that.  I'll share her story with anyone, I'll open up about our experience with her.  I believe God has given us Harper Kate to share her story and hopefully help other parents cope with difficult pregnancies, or special needs children.  Please don't be afraid to ask me about my child.  The smallest comments mean the most.  I LOVE when my friends comment about her small accomplishments, about her long eyelashes and beautiful eyes, her cute clothes and her hair bows.  I don't mind you asking me how she's doing because you know what?  It lets me know you CARE.  Don't be intimidated to talk to me about her or be afraid to ask.  I LOVE talking about my child.  Do you have enough time to listen and the heart for me to be honest with you?  Sadly, some people don't.  They say, "how are you doing?", but deep down I don't think they really want me to be honest.  Sorry, if it's a bad day, you're going to hear about it....just be ready! ha!  

Once again, Lauren's ending paragraph was perfect!  I've changed the names, and characteristics of our child, but the rest of the paragraph are Lauren's words.  They are exactly the way I feel.  Thank you for loving us, our amazing child, and listening.  
I am so glad that God chose Jarod and me to be the parents to Harper Kate.   Raising a special needs child has its challenges but also huge blessings. We are rewarded with love and happiness daily. We are rewarded with happy tears often. The sounds she makes are worth a million dollars. She looks into our soul with his big brown eyes. We are a family of three. We do not need people to feel sorry for us. We have found a sense of “normal” in our life. We love our life! Yes, we often feel the six statements from the article above. We often feel sad. We often feel crushed. Luckily, the love that we have for our angel outweighs all of the sadness. My life is difficult but I receive more blessings in a week than many people do in a lifetime. That is true for all mothers to special needs angels.  God is good all the time no matter what!

Tuesday, September 11, 2012

Easter Weekend 2012

This year for Easter we headed to Birmingham and went to church with my parents then had lunch at Jarod's grandmother's house.  I know a lot of people wonder why we travel to Birmingham so often, but it is because that is where our family is.  I love being with family on holidays and keeping traditions and so we spend a lot of random weekends in Birmingham getting rejuvenated for the following week.  We loved going to Mountain Brook Community Church and always enjoy showing off Harper Kate.  :)  The Saturday before Easter, we actually were interviewed on video at the church for use in a sermon that would be given in the following weeks.  A blog will follow soon with that interview!  Anyway, then we headed to Memaw's house for yummy food and fun times spent with family.  Here are some pictures from Easter Sunday.  I mean, I certainly think the princess looks like an angel sent from heaven!  Don't you?!  hahaha

Smiley Face

A sleeping angel

looking right at the camera

Rock Star

Hot stuff!

HK loves her Easter basket

Happy girl

Aunt Kitty & HK (and Jake in the background)

Family pic

HK loves Aunt Caprice

HK cuddled with Uncle Jack Jack

Thanks Abby for capturing a pretty good family picture

She adores her daddy!

HK & her great-grandfather, Paw Paw

HK, her Nana and her great grandmother, Grandmaw