Where Has the Time Gone?

wow!  i think that this is the longest that i have gone without blogging!   so what have we been up to?  lots and lots!   we have spent a lot of time traveling back and forth to pensacola, house searching, as well as just everyday life.   living apart from tim has really taken it's toll on me!  i am one tired mama; fortunately that is all about to come to an end!!!!   a couple of weeks ago, tim said that we had about 3 more weeks before we needed to look into renting our home if it did not sell; UGH!   praise GOD that within the past 2 weeks, our house FINALLY sold, and we have a contract on a new home in pace!  

as happy as i am to be reuniting our family after these LONG 6 months of living apart, it is still a time of great sadness as well.  i am moving away from my hometown; i was born and raised here.  tim and i moved back here when ethan was 3 months old, and he just turned 19!!!!   my parents are here, and are getting older; my sisters are here; our friends are here!    but we know that God provided this opportunity for us, and that HE is in control.  He goes before us, and He has great plans for us (jeremiah 29:11).

i realize that i do not blog when i am feeling blue. that's why it's been 2 months since my last post. but i'm doing my best to get back; this may be more of a journal for the next couple of months about our move, who knows? but i'm SURE that you have missed cute pics of my boys..... wink, wink! so here's a quick pictorial update!   thanks for reading.....
 

one of our favorite traditions, decorating Easter eggs together!

enjoyed a wonderful visit with my bestie susan!!!

forrest had belt promotion.... this was fun!

hanging with my peeps!

field day!!!!  

ethan and i climbed the pensacola lighthouse.....
a favorite thing to do!

the significance of this picture is that this is the first time
i can remember wyatt actually communicating that
he wanted to do something....
everyone else had gone up in marine one, he wanted to as well!!!! 

ethan and wyatt..... he loves his brothers!

all my guys together = 1 happy mama!!!

me and the love of my life!!!  
we are SO ready to live together again full time!!!!

My Friend Geri.....An Interview with Jimmy's Mama!

one of my dear online friends is geri, mother to jimmy (and other children as well!)....  jimmy is a older than most of my friend's children, so geri is a lot further along in this journey of life with Down syndrome than many of us!   she is a blessing and a true encourager to me!    i asked her a few questions a while back, and this is what she shared with me!  enjoy!





jimmy!

Penny:  Did you have a prenatal diagnosis that Jimmy had Ds? If not, how were you told that he had Ds?

Geri:  We did not know that Jimmy was even a boy, much less that he had Down Syndrome. This was 1981 the test that are available now were not available then! The few tests that they did were all fine. I was told the day after he was born that he may have a glandular problem and they had done some tests and had sent blood to be checked. The Doctor casually ask me if I had heard of Down Syndrome. I just shook my head yes, while he said he did not believe that was what he had. I found out when Jimmy was eight days old and I took him to Dr Robert Abney, a pediatrician that was also a cardiologist, that he did have DS.

Penny:  What were your feelings when you were told that he had Ds?

Geri:  I prayed the night before and I knew he had DS, I ask God to please show me the way to do what he wanted me to do. I knew there was a reason why he gave me Jimmy and I was honored as well as a little scared.

Penny:  When Jimmy was born with Ds, did you have a strong support system, either family, friends, church family, etc.?

Geri:  My family was very positive, especially my sister Bab's. She was always there for him and me. There were some family members that refused to believe it at first. They all came around quickly realizing that it was not a bad thing to have DS. I called the health department and asked for any information that they had to be sent to me. I quickly learned what a blessing Jimmy is.

jimmy and his girlfriend heather!

Penny:  What services were available to you when Jimmy was little? we are so blessed with Early Intervention now, i'm just curious as to what types of services you received, if any?

Geri:  He had an AV-Canal repair of his heart at 5 1/2 months. He was sick and in and out of the hospital until he was four. He was still sick a lot but not so sick that he had to be put in the hospital. Hudspeth Center, a state mental health facility, would send therapist to our house every few months to see how he was doing and tell me ways to help him with feeding, etc. When Jimmy was 2 1/2 an Early Intervention program was started at Hudspeth Center. I took Jimmy five days a week (unless he was sick) for speech, physical and play therapies. The director of the program would call me when a new parent and baby would be coming in to meet with him about bringing their child to the program, so Jimmy and I could be there, they could see him and how positive I was and I was the lucky one that got to hold the babies. I loved seeing the new babies and I am still very good friends with some of them. He went to Early Intervention until he was almost seven and started to public school.  His kindergarten teacher was great, but his teacher 1st - 4th was WONDERFUL! She worked us so hard. Homework every night. WORK WORK WORK! It paid off though he can read and write. Math comprehension is not so good, but tell him your phone number and he will call you forever. He is very good at remembering birthdays and anniversaries also. Jimmy is very thoughtful!! He had a great teacher in Jr High, but I have to say high school was not so great. I had to fight with teachers quite a bit. I guess the hardest thing about having a child with DS is other people's ignorance. I was ignorant to what DS really is before I had Jimmy myself. 

Penny:  Is there anything else you would like to share with us?

Geri:  When Jimmy was about four and was SOOOOO sick with pneumonia he had to take medicine that made him try to climb out of his skin. For over a week he did not sleep but for a few minutes at a time, so I did not sleep. Finally I ask Dr Abney if we could skip a dose of this medicine so he could sleep. We skipped the 6pm dose and when the nurse came in at 10pm to give him the medicine I had rocked him to sleep and could not let her do it. I had cried and prayed for that four hours and told God, if this is the way he has to live, I have to let him go. The next morning I was waiting for him to die. The Dr said he may have to go in his lungs and get the fluid out with a huge needle. It was not good at all. One of his teachers from Hudspeth Ctr. came to see us. She said, "Not my Jimmy boy!" She got him up and gave him jello (he had not eaten in days) He came back to life! At five that evening when the Dr. came in Jimmy was running around the room playing, he was so amazed that all he could do was shake his head. He just shook his head several times after that too. I knew that God was showing me he was the one in control.  

jimmy and geri....sweet!

Penny:  What has been the biggest blessing of having a child with Ds? 

Geri:  The biggest blessing has probably been seeing the way Jimmy has changed people. I have watched time after time how people would act almost scared of him at first and then he would show them what love really is. We still see people that he went to school with and they stop him and are always so happy to see him. Several people that we did not know have told us what he meant to them. That always makes me smile. I knew that there was a group of kids from Jr High thru High school that looked out for him, but didn't know all of them.

Penny:  What would you tell parents who have just received a diagnosis of Ds for their baby?

Geri:  I guess the best advice I could give new parents is just enjoy and love your baby, but be ready to fight for them along the way! (Isn't that what we do for all of our children though?)

Forever Friends....



flower girls!

happy birthday to my dear friend amy!   what a blessing to have a lifelong friend of about 40 years!   we met on a dirt pile while our family's home was being built and became fast friends!   our parents even built a wooden bridge over the creek between our homes so that we had easy (and safe) access back and forth!  our parents are still best friends to this day as well!


u.s.s. alabama with our families and my nephew!

 









i have so many memories of our times together.....





big hair was in!

we were flower girls in my sister pam's wedding!  we played with barbie dolls for hours and hours!  we had sleepovers ALL.THE.TIME!  her parents were my second parents, and vice versa!   our families vacationed together a lot.... the great smoky mountains, georgia, alabama....many trips together!  we were in the band together; same instruments (saxophone and oboe), and we were both drum majors in our marching bands!  in high school we even travelled to europe together as members of the all south band!    we "cruised the strip together" here in our hometown of panama city (beach)!  we roomed together in college one year.... and we were maids and matrons of honor in each other's weddings!  

a little older, but don't we look great!!!!  

unfortunately, our families went in vastly different directions for many years (amy and dan travelled the world in the air force)..... and we only kept up with each other sporadically....

tarpon springs, florida.... a wonderful day together!

but the Lord has allowed us to reconnect within the past couple of years and we have reestablished our close friendship!   "friends are friends forever, if the Lord's the Lord of them......"  

i am blessed with my forever friend, amy!

Celebrating Wyatt's Happy Healthy Heart Day!!!!

we must take a break today from all the lovely valentines that said "yes" to wyatt's request to be his valentine!  (don't worry, there are still a couple more!)   

immediately after the surgery.....

today we MUST celebrate the 2nd anniversary of wyatt's completely successful open heart surgery!!!   woo hoo!!!!   we cannot let this day pass by without remembering to be thankful for how God worked through the hands of surgeons, anesthesiologists, and other medical personnel to bring complete healing to his precious heart!  

amazing support!

love this picture of mom and dad with wyatt.....

in some ways it seems like forever since those long days leading up to his surgery, and in some ways it seems like yesterday!  we only had about a month to wait once it was determined it was time to have surgery!   he was 6 1/2 months old when his cardiologist decided to send his records to the surgical team in atlanta for them to assess his ASD and VSD.   to be honest, we were shocked!   we truly thought the holes would heal and he would not need surgery!  




within a week we were called to schedule surgery!   the time just flew by, with all the preparations it required!   we had to make arrangements for our older boys while we would be gone, as well as all the details that surgery entails!   we were so blessed by offers of help, gifts of snacks, restaurant gift cards, notes of encouragement, coins for vending machines, magazines, etc!   our church family really stepped up to bless us during that time!   

putting on a brave front.....

hanging out at the
ronald mcdonald house after dinner!

                                                                       tim's parents drove out from texas, and his dad stayed with our older boys while his mom rode up to atlanta with my parents and best friend susan!   another best friend, kym, drove down to be with us during the surgery as well as our former pastor and his wife, don and sharon, and my childhood friend, nelson.

it was a blessing to be surrounded by our family and friends; especially on his "practice surgery day!"   wyatt's surgery was actually postponed 1 day due to an emergency surgery.   we had already arrived at the hospital and had been taken back when we received word that his surgery would not happen that day.  so we spent the rest of that day visiting with our family and friends.   we were also blessed to stay in the wonderful ronald mcdonald house, which is an amazing charity!

this is it.....the real deal....sleepy juice taken...
waiting to be taken back!!!

and so on february 25, 2010, we handed wyatt over to a virtual stranger to have open heart surgery! his surgery took less than 1 1/2 hours.....  and his repair was complete!  the only problem during surgery was an anaphylactic reaction to an antibiotic.... praise God for an excellent anesthesiologist who handled it!   (we now know that wyatt is allergic to ancef, a cephalosporin...)

the only "problem" we had post surgery was convincing his surgeon to allow him to NURSE quickly!!!    but once we moved to the step-down unit, his nurses allowed us to return to nursing!  we were only at the hospital for 4 days before we drove the 6 hours home....that was scary!!!  taking your baby home (far away from the hospital) just 4 days post surgery!!!   

unless you have experienced handing your baby or child over to a surgeon, knowing that they are going to open his chest, holding his heart in their hands, you can never understand the emotions, the fear that we felt that day.   even though we have a strong faith in our God, it was still such a scary time.    we praise God that all went well, and wyatt's heart is completely fixed!    and we encourage other parents who will have to walk that same path.... we cannot take away their fear, but we can walk alongside, hold their hands, pray for them, and tell them we understand....     

our heart warrior!   2 days post surgery!!!!

Friends....On Facebook and In Real Life!

this past weekend the little boys and i drove over to spend the weekend with the older guys!   in case you didn't know, my hubby tim and our oldest, ethan are now sharing an apartment in pensacola.  tim accepted a new position there in december, and ethan is in college there!   we are in the process of selling our home and all moving over there this summer!  we've been mighty busy around here!


a highlight of our weekend was getting to meet and spend some time with some of my facebook friends who have children with Down syndrome as well.   friday night we were able to have dinner in pace with the wallis family.  we ate at one of their favorite restaurants, la hacienda, which is sure to become one of our favorites as well!   anna, paul and grace met us there and we had a wonderful time visiting and getting to know one another.  anna had found my blog several months back, and we started getting to know each other through our blogs; visit hers here, and facebook.   anna and paul adopted grace from equador about a year ago, when she was 5!  she is completely adorable, and has the most beautiful eyes!   AND she did NOT want me to eat the chips in the basket!   she was quite adamant about it!   and cute as can be!   i am thankful that the Lord has blessed us with new friends who love and serve Him in the same aread we are moving to!  they are strongly encouraging us to live in pace....they love it there!   after today's news report on florida school rankings, i strongly suspect we will be moving there!   the santa rosa school district is ranked #2 in the state, as opposed to the escambia school district being #44! 
 
we were delayed by fog from coming home on sunday as we had planned, and my facebook friend, patti, suggested i stop by crestview for a quick visit on our way home.  so glad she suggested it!  the boys and i met patty and her precious marissa at burger king and had a wonderful visit!  the kids had fun in the playplace, and were so cute together!!!  patti and i actually met last year at our buddy walk, but we did not realize at the time that we were already facebook friends!   so it was neat to see them again!   marissa is recovering from her tonsilectomy, and is now doing great!  she has an infectious smile that melts your heart!   we had fun sharing our Ds "stories" and getting to know each other better.   glad that we will be closer to each other when we get moved over as well!    be sure to come back tomorrow to see more pics of wyatt and marissa!   such cutie pies for wordless wednesday!   you can find patti's family blog here!

i know i say this all the time, but wyatt's Down syndrome has brought so many wonderful people into our lives that we would never have met!   we have been so blessed to meet folks in our Ds community who encourage us as well as who share our Christian faith!   blessings....

I AM NOT SUPERMOM....In Case You Were Wondering....

well, my supermom myth is busted.  although i'm sure that i'm the only person who believed that myth!  it's over.  kaput.  done!   why?   because i thought it was a good idea to take the two younger boys (10 and almost 2) to a conference this weekend BY MYSELF!!!   NOT. A. GOOD. PLAN. AT. ALL!!!!!   this is a brutally honest post......

we love ikea!

so how did this happen?   i was blessed to receive funding through early steps, our early intervention program, to pay for the majority of the trip to the "family cafe" conference, which is an annual disabilities conference in the state of florida.  tim and i were able to attend last year, and we received lots of good information, so when the opportunity presented itself, we thought that i should go, even though tim could not join me this year.   mind you, we BOTH thought it was a good idea; that forrest would be a tremendous help, and all would go smoothly.   i was we were wrong!!!!!   

wyatt enjoying ikea!

the drive to orlando was LONG.... VERY long, with wyatt screaming intermittently for an hour of the 7 hours;  he finally napped for about an hour!   but we made it.  the conference is at one of the walt disney resorts, the coronado springs, and i knew the layout of the resort, so i was familiar with what i was facing.   i did not count on being placed on the second floor, with the elevator being basically 2 buildings away.  it was awful trying to get everything (except the kitchen sink!) up to our room that night.   and then getting setttled, giving wyatt a bath.....at which point he POOPED in the tub.  OH MY GOODNESS......now when this happens at home, we have the tag-team approach; one parent takes the boy, the other cleans the tub, before we start the bathing process again.  and of course the lysol cleaning wipes (which i did think to bring!) were the only thing that i had not brought up to the room.  UGH!!!!   needless to say, i was in tears, and ready to go home....except i had decided that i was NEVER going home because i would have to drive that long trip again alone.   i was thinking that we were going to stay in orlando until someone else could come get us....just kidding of course, kind of!   forrest said, "we'll call dad, he'll come down."  but i had to tell him that dad couldn't come down....or he would be with us already!!!!  it was a long night!   we all finally got to sleep around midnight.  

pool time!

forrest loved the slide!

it was just hard being alone in a hotel with two kids, especially with wyatt.  i expected (unrealistically) more from forrest, for him to instinctively do things i needed done.   and those unrealistic expectations led to a "yelling" mama.  it was not pretty.   i used to be more of a "yelling" mama when ethan was our only child and younger, but i finally grew out of it....i learned better.   i do not like that mama.   i do not want to be that mama again.   ever.   so i did a LOT of apologizing for my raised voice with forrest this weekend.   {guilt here}   and i did a lot of praying.  i was way too concerned about things that i did not need to be concerned with (as my wise husband told me!)  my priorities were out of whack.  GOD first.....family second.....gotta keep my relationship with HIM first and foremost, before anything else will fall into place like it shoudl.....something i know, just got things out of order!  working on that....  and i now know that i can't make a trip like that alone!   just can't do it!   and that's OKAY!  


but we did have fun too!  we went to IKEA....which we love to do!  we ate dinner there!!!  we had a great time at the pool!   we had fun with friends that we have met through the past couple of years through facebook and other conferences.  forrest really enjoyed getting to know them better.  we were able to attend a great early steps playtime session with all kinds of fun things for the kiddos to do!  wyatt and forrest both had a great time...and they got to meet SPIDERMAN!!!   wyatt and spiderman played "chase" for a long time.....and spiderman even read a book to wyatt!  that was super fun!   i got some great ideas during that time for things to do with wyatt!   i'm so glad that we were able to enjoy all that the early steps ladies had worked so hard to prepare for our kiddos to do!  

wyatt loved spiderman!

cool dudes!

playing chase!

i'll blog more about other things i learned at the conference soon.....still recovering from the busy weekend!   needless to say, we did make it home, without ANYONE screaming!  yay!  we survived....

Meet Wyatt's Friend Madison

madison

as i have mentioned before, wyatt's diagnosis of Down syndrome opened my world to so many people that i would never have met had it not been for his Ds.   i was "introduced" online on facebook by a mutual "in real life" friend to my sweet friend april last year.   april and shane have a daughter named madison who is absolutely adorable!   madison is almost 3 1/2 years old and is cute as can be!  

our connection?  madison has a rare genetic disease called Mucolipidosis Type II, also referred to as I-Cell disease. this is a lysosmal disease that affects her enzymes. april told me that early on madison was actually tested for Down syndrome, and after that test came back negative, no other testing was done.  i believe it was after she began missing some developmental milestones that much further testing was done, and they eventually discovered that madison has mucolipidosis type ii.  april and shane were told that madison's life expectancy is 3-8 years.   one statement that april made to me was "i only wish that she had Down syndrome....."   that puts things into perspective, doesn't it?  

april and shane have recently started attending our church, and i am loving getting to know them better.  april is MUCH younger than me, but her faith is AMAZING!   she has such peace, that only comes from completely trusting our Lord and Savior, Jesus Christ!  and madison lights up a room!   everyone at church is drawn to her, as they are drawn to wyatt as well!    she has a little walker that she can scoot around in...you should see her go!   she is just precious!   

this week april and her parents are in birmingham for madison's 6 month checkups; shane stays home to run their family business.  i wanted to share something april said yesterday in her blog, the life of riley: "I can honestly say that this is the first time that I have not been anxious and sick over these appointments.  I was earlier in the week but I knew I could not keep stressing about this.  I have laid all my worries and anxieties at the Lord's feet.  This situation is out of my control and in his.  Please keep our sweet Madison in your prayers this week."  so i join april in asking that you pray for madison this week.  there are a lot of appointments with many specialists...their days are long and exhausting.   pray for good rest for them all, and good reports from the specialists.   pray for april and her parents as they care for madison out of their home environment.  and go visit april's blog.....you'll really enjoy getting to know them better, and you'll see LOTS of cute pictures of precious madison!    peace....

How Long WILL It Take?

i was having lunch yesterday with the small group of ladies that i have truly come to depend on for support in this unexpected journey, and i asked them "when does it really sink in?"   i still feel like there are days that it's just not real that wyatt has Down syndrome, if that makes sense.   these ladies are a little bit further along in the Ds journey than i am, and i asked, "was it when your son started public school, or was it when he started preschool?"    i was thinking that it might be when they are in school setting with other kids and it's more apparent, maybe that's when it "sinks" in.....

my friend kristen told me that the mother of a 37 year old son with Ds told her that there are STILL days that she cries for him.....hmmm,  maybe she cries for how hard life has been, maybe for the fact that she is aging and will leave him behind.....who knows, but i guess i just assumed that one day there will be no more sadness, as we adapt to the new normal that having a child with Ds is.   not to say that we don't KNOW that our kiddos have Ds, but the full realization of it just seems to come in bits and pieces.   hmmmmm....it's probably best that way.   i do agree with the "welcome to holland poem......"  where it says "And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss."   i'm not saying that i will never be happy....i am happy, more days than not!   but it was reassuring to know that it's not just me that has sad days every now and then! 


if we knew everything to expect, and knew exactly how we would deal/cope with it.....would we need God?   i think we would rely more on our own abilities, thinking we could handle everything....instead of HAVING to trust God....each and every step of the way!    day by day, minute by minute......

A Little About Ethan

today is ethan's birthday. my firstborn. there's something kind of different about your relationship with your firstborn, don't you think? especially a mother and son ..... it's hard to explain... it's kind of like i "grew up" with ethan.....changed from young woman to young mother...which brings so very many life changes!

your firstborn are the "guinea pigs" of your parenting. you try different ideas and parenting techniques with them, trying to figure out which one works. you worry about every little thing they do; every sniffle and fever.... so many trips to the doctors and late night phone calls!

ethan was our only child for 8 years. he was a busy little guy...people find that hard to believe now! he was constantly into things...we weren't sure we could handle another child with him... but then we decided we could! being our only child for so long made ethan grow up faster; he's always been like a "little adult." included in most everything we did, he was always with us.

ethan now is quiet and introspective, much like his dad! he is a faithful friend, and he loves God wholeheartedly, for which i am so thankful! he studies the Bible and apologetics, and is a great defender of the truth of Scripture. he is smart and funny, and has a beautiful smile. he is also an excellent student and has never given us any trouble.....ever......really. we are so very proud of the young man that he has become. i love to sit and talk with ethan, he never ceases to amaze me! it's so awesome to hear how God is at work in his life. i even watch his crime scene shows with him.....and there are many!

we know that God has great plans for ethan, and are excited to see him follow those plans! he has been focused on forensics, anthropology and archaeology for some time now; it is his goal to pursue a degree(s) in those fields of study. we are praying for wisdom and discernment as he continues to seek God's direction for his life.....

Precious

what is more heart warming than seeing your 8 year old son on his knees at the front of the church....all by himself...praying for his baby brother's upcoming surgery? nothing. absolutely nothing is more precious than knowing that forrest's faith is THAT real to him, that he knows that God answers prayers, and that he REALLY gets it....AWESOME! a precious sight, i must say...one that makes a mom so proud! wow! we are so blessed with sons who love God, seek to follow Him, and aren't ashamed to tell anyone about Him! PRAISE GOD! and i know that forrest's prayers must please God so much......