Summer has begun

Wow! It's been quite a while since I've blogged. I think I don't do it more often because a) I've been incredibly busy lately and b) it's so emotional for me to sit down and think about my thoughts on things.  Well, the school year is finally over, but my summer will be anything but boring. I have multiple trainings coming up, the Chromosome 18 Conference (whoo-hoo), one daughter getting her tonsils taken out, the other daughter FINALLY having her cleft repaired, and continued therapies and doctor's appointments. On that note, a Kennedy update:

Kennedy has been doing great and making great gains! She is not crawling or walking yet, but she continues to do this butt scooting thing that we all think is just adorable! She definitely gets to where she wants to go.  With increased independence has also come an increase in her attitude and diva-ness! That child has learned to throw a fit, let me tell you!  She actually lies down in the floor kicking and screaming. This fit might be because she wants a drink from of bottled water (she's become quite obsessed with these) or just because she wants to get down in the floor.  She used to be our easy-going child, but alas, this is no more. It really is quite neat to see her finally react to things in such a typical way. She is growing up so fast!  She continues her speech, OT, and PT.
 Medically, Kennedy has been fairly healthy, save for a cold that turned into some kind of rash on her face. Actually, she still has spots on her face from that rash (the dermatologist didn't even know what it was).  She is still scheduled for a cleft repair and her 3rd set of tubes on June 28th.  We are so excited to finally be having this surgery.  We kept being told month after month from the time of Kennedy's birth that she could not have this surgery until she was drinking from a sippy cup.  This made absolutely no since to us because we really didn't understand the connection. We especially didn't understand because due to her cleft palate and low muscle tone, she never developed a suck.  She did not drink out of a regular bottle, she cannot drink out of a straw, and thus, cannot drink out of a sippy cup.  The only thing that saved us with the bottle was the Medela Special Needs Feeder, formerly called the Haberman nipple.  That nipple was a true life saver!  It was the only way Kennedy could drink out of a bottle because it didn't require a suction, just a sort of chew on the nipple.  So, we finally asked for a 2nd opinion about the surgery and her new craniofacial doctor scheduled the surgery right away. Yay! BTW, she does do her version of drinking out of a sippy cup now.  She just munches on the spout like she did her bottle.  This is great for us because that means no more expensive nipples, but not so great in that we have to replace sippy cups at least once or twice a week. :( Oh well!

Emotionally, this special needs thing has been quite a journey for me and my family. I don't know if I've mentioned it before, but I started going to a support group called Mended Hearts. It's been a great experience for me.  I've always thought about starting one in this area, but I'm so glad I've found one.  It is for parents of special needs children of all types. That first meeting really helped me to put things into perspective with Kennedy.  It helped me think about that no matter what I'm going through with Kennedy, it could always be worse. And I can't forget that. And at times this self-awareness has seemed like such a burden and a drain of mental energy.  Always having to be aware can become exhausting.  But, lately I have even been grateful for my self-awareness.  The problem comes in having to take care not to be contemptuous toward others who seem not to be so aware.  But, I have found that even in the difficult times, I am growing in ways I never could have imagined.  I really thought that this journey would make my heart bitter and cynical, but it has just increased in its tenderness and love for mankind.  I am so grateful for that. Grateful to be found worthy.

Giving Thanks

This week as every week, I have much to be thankful for.  For me, it's the little things that make a big difference.  So, this week I am thankful for...

Kennedy had to go to Louisville to The Commission this week to get her hearing and vision checked.  She did not pass her hearing test and they found that she again has lots of fluid in both ears.  Because of this, they are recommending another set of tubes for her. Her vision test found that she does not have difficulty with tracking as we thought, but instead she has false strabismus due to having a wide nasal bridge. The doctor is very hopeful that she will not need surgery on her eyes and she doesn't need glasses at this point. So in this I am thankful that she is able to hear and able to see. Even though she has yet to pass a hearing test completely, they do know that she is able to hear something. She responds in the sound booth very well.  We are very hopeful that speaking is not far behind for her.

I had a dream the other night that Kennedy just got up and took off walking.  It was so real and I barely remember my dreams, but I remember this one so vividly.  I can't wait for that day.  Kennedy is not yet crawling, but by golly she is getting around!  She destroys everything within her reach that is eye level or below.  She does that bottom scooting thing that ruins the butts on all of her pants.  And, even though I really want her to crawl and then walk in the "typical" way of doing things, I am so happy that she has found her way of getting around.  It is so interesting to me what she chooses to do and go after now that she has options. She's hilarious and with that independence is coming a very stubborn little girl!  But right now it's all still hilarious to us. She has such a funny personality. So, in this I am thankful (I pray I will not have to eat my words) for my stubborn little princess.  That will and determination has paid off for her!

I have such a wonderful natural family and church family.  I cannot sing their praises enough.  I was very blessed in that area.  Their help and understanding with my family has been immeasurable.  I hadn't told anyone that I wanted a new stove because my stove is very old and the oven burns everything. But, a couple of weeks ago I was asked if I wanted to buy a stove at a very discounted price.  A couple of minutes later, I was told that I could have that stove. I am so thankful for such loving people that God has placed in our lives.  God's favor is upon our lives and I thank Him for that.  Even during times when I was sure He had forgotten about me.--I wouldn't dare say it, but my heart felt it.--Even in those times, He never left me. I think it's so awesome how He knows what I need.  He considers me in all things and gives me what I need. There are times when I don't feel I have anything of myself left to give and He shows me that I do. I'm so grateful for that. I'm grateful that I am blessed to be a blessing to others.  And then I remember again that I am nothing without Him. Blessed.

New Job

I told myself I was going to write a post at least once a week.  Well, you all see how well that has gone.  It has been HECTIC! at my house!  My husband just got a new job, which I’m very proud of him for.  The only thing is his job is 50 minutes away.  I know, I know, not a big deal to you long-time commuters, but a rather big deal to me.  He’s two weeks in on his job and I must admit that I’m feeling a bit like a single parent these days (no insult to real single parents--I've been there).  Before the new job my husband and I had a great (well, great to me) schedule worked out.  I went to work at 8, taking the two older kids to school and day care.  Then, he kept the twins until 2 when they went to the sitter’s.  He then picked up our son and went to his coaching job until about 6 and I got off at 5, picking up the other 3 kids.  Now, I’m doing all the carting around and picking up of all of the 4 kids and it’s exhausting!  Couple that with coordinating doctor visits in and out of town and therapy appointments--and let me tell ya, this gal ain't organized.  I'm about ready to pull my hair out already.  I know my hubby was in desperate need of some adult interaction during the day and I’m happy that he now gets that.  I know he was in need of that feeling of productivity during the day and contributing to society, and I’m glad he now gets that too.  Now I’m in need of a nanny!  How does everyone else do this? I definitely need some ideas! Also, any ideas to help me get organized would also be appreciated.

We had a great Easter this year. Here are a couple of pics from that.  So great that my car still looks like Easter threw up in it.  I have fake grass and candy everywhere!

On another note, I’m asking for prayer for my family right now. I’ve been in prayer over a situation that is close to my heart and I’d like prayer from you all as well.  It’s nothing major, just something close to my heart.

A special Good Luck to Deak and Jenny Howe on Deak’s Run for Hope.  Click here for info on how to donate or participate.

Hope everyone has a blessed day!

Thankful

I actually have no idea what I'm going to write about today. I just kind of had a goal of writing once more before the month ended. I could write about so many things. Our life these past couple of weeks has been crazy, but blessed. I just feel overwhelmingly thankful right now.

I am thankful that...

My husband and I have been taking a class at another church for a few weeks now. The class is called Wired in that it discusses how each individual is "wired" or made up. On the first day of class we took personality tests, then we had to read about our personality, and then the instructor discusses strengths, weaknesses, and how each personality relates to serving God. It's really a neat class.  But, as neat as it is, it is not really my husband's cup of tea. He has enjoyed learning about the different personalities, but still, not his cup of tea.  So, in this I am thankful that I have a husband who is willing to explore life with me on both our terms.

For those who do not know, I am a PK (preacher's kid). I have attended the same church since my father started pastoring there over 27 years ago. Going from a kid that everyone has watched grow up to a member of that same congregation is not an easy task.  But, I am so thankful that I have a great church family. They love me, they support us, they show genuine concern for my family. The transition was an easy one for me because of my church family. I cannot even begin to name the ways they have blessed me. So, in this I am thankful for a church family that I can actually call family.

For the last couple of weeks, I have been feeling THE GUILT.  You Moms know it. It creeps up when you least expect it, challenging everything you thought you knew as a Mom. How do I know I'm being a good Mom?  How do I know I'm giving my children what they need?  Do I yell too much?  Do they get enough sleep? Etc., etc. Oh yeah, the Mommy Guilt has been showing up in all sorts of areas around my household lately.  It has not been easy to feel confident in my motherly skills lately, especially having 4 children who are all so very different with very different needs.  And the teacher told me the other day that my oldest daughter, Destiny, has been having "Mommyitis" where she tries to get them to call me so that I can pick her up or she asks for me All. Day. So in this, I am thankful that the Lord only gives us one day at a time. :) He knows I can't handle much more than that.

In this strange world of Chromosome 18, one can often feel as though they are stranded on an island. And I'm not talking about the island with the palm trees swaying lightly in the breeze with cabana boys that bring you drinks with fruit while you lie in hammocks and someone fans you with leaves while someone else feeds you grapes. No. Not that island. I'm talking about the Cast Away island like poor Tom Hanks was stranded on for months (BTW, I cry every single time when he loses Wilson). Yeah. That island.  Only its not a deserted island. Its an island full of fun, happy people who get to leave the island and insist on coming back only to tell you of the wonderful tales they've had while away. That's when they've made it clear that they are simply visiting you at your island and they have no intention of staying. So, because of this, I am very thankful for the Internet. Through the Internet I have been able to connect with so many wonderful people.  I just found The Registry's Facebook page this past week and I am so thankful. It helps to take the focus off of me and lets me know that I am not alone. I am also thankful for the many wonderful blogs I have come across. Though, for me the blogs can be intimidating, I am still very thankful for them. While reading them, I am constantly thinking, "How did they know that's what I needed to read this week?"  I can't imagine what this journey would be like without them and I'm glad I don't have to imagine.

Back to Reality

I have a unique life. And don’t get me wrong, I love unique. I love that God made us all so different that on this planet of billions, not one person is alike.  I even love diversity, coming from a small town it was my favorite thing about college.  I’ve always felt quite different, but I SO love that about myself now. But there are days. There are days that I would love to just be. Not to be the mom, the wife, the school psychologist; just be. Not to have people look at me with sad eyes and say, “How’s Kennedy?”  Or a day when people don’t say, “You have 4 kids? I don’t know how you do it.”[insert pity face here] Sheesh! Don’t get me wrong, I love all five of my lovelies. They brighten my life and I wouldn’t want a life without any one of them in it. But just a break from the norm every now and then can be awesome.  I recently got a glimpse of a day like that. I got to celebrate a grad school friend’s birthday with her and some friends.  We laughed, shared old memories, and celebrated new ones. It was pretty great. Here are just a few pics…

But, now I’m back. In reality. Back to being mom, wife, school psychologist--me.  And after a brief break, I realize how much I SO love all of those titles. Wouldn’t be me without them. I can forget that from time to time. I can ignore that from time to time.  But I am so thankful that I have people that help me remember.

Bein' Green

Love this song. Just thought I'd share.

You'd love her anyway

In response to some of the well-meaning, silly things people say when you have a child with a disability, I left this comment on a fellow-mom's Blog the other day: 

I tend to believe the quote: "God doesn't call the qualified, but He qualifies the called."  We're not special, but we're willing, and that's a big deal to God. I was listening to a lady's testimony that had a difficult time getting pregnant and then she FINALLY did, and the baby was born with many, many birth defects and died days later.  In her frustration she asked God "Why?" and she said the answer came, "Because I knew you would love her anyway." That's been more than 10 years ago, but it stuck with me and now I know why.  So, when I'm feeling particularly frustrated and asking God "Why?" I think, "Because He knew I'd love her anyway." He also knew my weaknesses and failures would cause me to run TO Him and not FROM Him and He can't say that for everyone. 

I was thinking about the often OVERUSED quote, "God won't put more on you than you can bear."  It's a quote that's used many times with things that God never put on us.  The loving God I know doesn't go around "putting" things on people, trying to see who can bear the most.  I've thought many times about what that quote means.  As a younger Christian I thought it simply meant, God won't put too much on you. But then I began to think, what is too much? If it were up to us to decide what "too much" meant, we would've cried Uncle! a long time ago.  Does "too much" mean, he won't let it kill you?  I'm sorry folks, but barely living is not good enough for me.  It's not what my life was meant to be about. 


As a more experienced Christian I am inclined to think it means, God will allow you to bear just enough that you will gain wisdom, strength, and the knowledge that you need Him.  I don't despise anything that I've been through because ultimately, it has taught me to cry out to Him more than any pulpit message could ever do.  And your "cry out" point is not necessarily my "cry out" point---Oh, I had a difficult time with this at first. I had a difficult time understanding why it seemed some people got to breeze through live obliviously while others were forced to stumble? I had to let this line of questioning go because I finally learned that some things are beyond human understanding.  Some things aren't even intended for human understanding.  Another lesson I learned was that you don't want to EV-ER try to walk in another man's shoes. Comparing yourself to others will lead you nowhere.  Nobody has their version of easy, because, like I said before, every person's cry out point is different.  Some of the same people that say things to me like, "I don't know how you do it", I look at those people's lives and think the very same thing.  Besides, everything that glitters ain't gold.


I believe He will allow us to go through things that are meant to strengthen our muscles, while drawing us close to Him at the same time.  Unused muscles don't get stronger right?  It's the same in the spiritual sense as well.  We have to know that it is "not by our might, but by His spirit".  That's a BIG lesson I've had to learn the hard way, still learning actually.  We have to willingly give up the wheel because He won't force us to do so.  He also likes to be able to use our lives as testimonies.  I heard Jay-Z say the other day that he has learned so much from failure, but he was still trying to figure out how to learn from success.  I think it's so true that we learn so much from our tests and trials, not when things are going great.  So, even though it is difficult at times, I try to do two things:  Let my life be a living testimony to the goodness, grace, and mercy of God & learn from the times where I failed, stumbled, struggled, or didn't even try.  I hope that's what He's asking of me.  I think it is.  I think it's what He's asking of all of us.  Pray for me in the times when I stumble through it all, as well as the times when it looked like I got it right.  Be blessed.

The Twins are 2

Yesterday was Kennedy & Kadence's birthdays.  They turned 2!!!!!  In some ways it feels like we've been together way longer than two years, but in other ways I know that time is whizzing by.  And oh, what a difference a year makes!  This time last year, we gave both babies the traditional first birthday individual cake for them to play in and make a mess with.  But last year, developmentally, Kennedy was unable to do that.  She was not even eating food yet.  Oh, but this year, we got what we asked for!  She made the biggest mess with just 1 cupcake and some of it even got in her mouth. It was the most adorable mess we've ever seen. She had a great time with it.

Kadence on the other hand is advanced for his age and is already well into his "Terrible Twos" early!  He is now refusing to smile for cameras, so we have to tickle him and trick him to get him to smile.  Here is the end result of that.   That boy is such a stinker!

Funny how time flies isn't it?  I still remember very clearly finding out I was pregnant with twins, being considered a high-risk pregnancy and being put on bed rest, then having the twins at 37 weeks.   It was all a very, very difficult time.  Kennedy spent 3 weeks in the NICU and I was devastated to have to go home without her. We didn't know what was going on with her then, we just knew that every day when we would go visit her, the NICU doctor would tell us about something else they had found "wrong" with her.  I can remember being in the room where they did my C-section and getting to see Kadence right away.  But, when I asked to see Kennedy, all the professionals in the room would get eerily quiet.  The kind of silence that gave me chills.  All the nurses got busy on Kennedy right away as soon as she was born and I didn't even get to hold her until the end of the day.  I can remember feeling like I was watching the scene from floating above my bed.  I knew I had come in with two babies, but I wasn't sure if I was going to get to keep two.  They reassured me several times from my paralyzed (from the waist down) state on the operating table that Kennedy was alright.  "Then, why can't I hold her?  Why can't I see her?"  No one gave me answers.  It's the same feeling I got when the professionals came from Nashville to do my ultrasounds once a month.  You knew there were things they weren't saying. Things they were saying once you left the room.  But, alas, both babies were born whole, and born beautiful I might add.  And I get to keep them both.

KadenceKennedy



We are very very blessed to have come this far.  God touches our lives each and every day.  My life has not been the same since these two were born.  I am a much more thankful and thoughtful person.  I don't have time to slow down and complain about things.  No time for big pity parties (though sometimes I admit, I throw mini ones).  Small gestures go a long way.  And staying close to good friends and family is crucial.  God bless you all!  Happy Birthday Kadence & Kennedy!

Charity

Don’t really know what I’m going to write about today.  Not that my life hasn’t been eventful, it’s just a matter of choosing which events to write about.  Right now, 3 of the 4 kids are under the weather.  Christopher has the flu, Destiny has an ear infection, and Kennedy’s just feeling yucky.  Half the time we don’t really know what’s wrong with her, but we definitely know when she’s not feeling well.  We will be so grateful when she can actually communicate with us and tell us what is hurting her.  Right now we get lots of whining and lots of crying, especially in the middle of the night, when she’s not feeling well.  It’s a guessing game that requires us to cooperate in ways we never imagined.

BTW, Kennedy's surgery went great.  The doctor said that once he “got in there”, the tethering was minor.  The doctors and staff at the hospital were great.  We only had once nurse that didn’t get it, but overall, it was fine. She is recovering well.  Kennedy update:  Her tethered cord release went well.  She was supposed to get tubes in her ears a few weeks ago, but was not feeling well enough for surgery.  She does not get to see her cleft palate doctor until April, which we’re pretty annoyed about since we’ve BEEN ready for the palate to be repaired!  We’re praying that it’s all in God’s timing though.

On a personal note, I am feeling so spiritually full and encouraged!  We have been going through a bit of a revival of sorts at our church lately.  God has been doing awesome things!  I keep getting confirmation after confirmation of His love for me.  I don’t take any of it for granted.  I’m so thankful for the people that He’s placed in our lives.  I read this quote by Maya Angelou:  To be charitable with gestures and words can bring enormous joy and repair injured feelings.  That said a mouthful for me!  Her writing was discussing the difference between philanthropy and charity.  She discussed how philanthropy usually comes in the form of gifts and/or money, but charity can come in all forms.  How it does come in all forms for our family!  From the kind word, to the heartfelt smile, to the offer for babysitting, and even money!  I just pray that I am able to be as charitable, or more, to others as others have been to me.  We know from the Bible that the root of charity is love.  “And now abideth faith, hope, charity, these three; but the greatest of these [is] charity.” –I Corinthians 13:13

Holiday Pictures

 One of the pics from our Christmas card.

 Christmas Eve they got to open their Christmas jammies

 Happy 7th birthday to Christopher whose stuck with a December birthday.

 This is my beautiful family (minus 1 nephew).  The two in the middle are my parents.

 This is my sister and nephew.  Thank God for them!

 Kennie Bug

 Kadence and his mischevious look. Better believe he's plotting something.



My Destiny

I'm so excited about my destiny.  I'm so excited about what the future holds for me and my family that at times it feels as though I will burst.  I was reading a fellow mom's blog when one of the quotes caught my eye.  It said, "Destiny appoints one, but affects many... your destiny will always involve a group of people." (Thanks Allison) To me that line was so awesome!  It reminds me that it's not about me.  MY own journey is not about me and I'm so glad!  I'm so glad to be doing this for others and not just myself.  I've always known that my life would have a great purpose.  I don't say that to be conceited at all, but it's always been a knowing between myself and God that I would do great things for His purpose. Those things may not be on a national scale, but great things in His eyes, nonetheless.

Even from the time I was a small child I felt the difference in me.  I did not always appreciate that difference, but I knew it was there.  I even remember a time as a teenager that I prayed that God would harden my heart, not to the point of cruelty, but just to the point where things wouldn't affect me so deeply.  Just to the point where I wouldn't be so sensitive about things that most people don't even think about.  I was born with such an empathetic heart that it gets exhausting at times.  For my good, but for His glory.  Let's just say a harder heart is not His will concerning me.  I feel so blessed to be in a position that I am finally ready to hear what He has for me to do.  I've been taking care of my own agenda for quite some time now and it's time to reign it in.  I've been humbled to a point where I can do NOTHING but depend on Him.  He knew when He called me that this would not be easy for me.  A strongly independent woman having to depend on others for so much.  A helper having to ask for help.  An inherently shy person being able to share my life and story with others.  But those things are part of the process, I'm sure of it.

My family and I have been so blessed this holiday season.  We all had a great Christmas and everyone was well!  I usually don't ask for anything for Christmas, but this year I asked for a new camera (ok, picked out a camera) and got it.  But, not only did I get that, but I got things that no one but God knew I even wanted.  That's how much my God cares about me.  I'm so very blessed. And the kids were so appreciative of everything, which is something I'm always talking to them about.  Not one complaint on Christmas morning without even being reminded.  That just blessed my soul.  I was able to bless my husband with things he needed as well.  He doesn't ever ask for much.  Actually all he asked for were t-shirts and socks, which made me want to bless him all the more.  We've come a long way as a family.  Having 6 people under one roof can be overwhelming, but I cannot imagine our lives without all 6.