Wednesday, December 14, 2011

Ingredients for a Cowgirl's 5th Birthday..

I asked Sofia, who has rarely enjoyed a typical birthday party with friends due to her birthday's timing right before Christmas, just what would make her feel pretty special for a few hours of birthday fun this year? Apparently it comes down to this..

#1. Pink.. everywhere possible!
#2. To become a Cowgirl Princess.. whatever that is?
#3. To ride a real pony... Yikes - tall order.
#4. To share it with her best buddies.

So only a few days before the last possible date slot we pulled together what I think turned out to be a pretty good time. The kids played games, rode ponys and shared some cupcakes and root beer floats. What more could a girl ask for? I felt good about making her feel a little more special on this 5th birthday.

Thursday, December 8, 2011

The secret of a life...

I love that song by Faith Hill..'The Secret of a Life' about the guys sitting around a bar commiserating about finding real satisfaction in life. I am not sure of the full meaning behind the lyrics but it always leaves me thinking about how the secrets in life are really not in the big things.. it's more as they say in another good song by John Lennon (Beautiful Boy) that.. "life is what happens to you while you're busy making other plans." The moments have already passed by the time we take any real appreciation of them and by then we are distracted by the next new thing.

I think the secrets of life are most often in the simple stuff. A few of mine are found in..the giggles, hot coffee, being alone and ..being together, the squeeze of your husband's hand when you both listen to the innocent prayers of your little girls, feeling relief when it all works out, a warm blanket, a hug from a friend, a choir in harmony, shining eyes looking up to you with love, a edding, a birth, a death, a good hard cry, being okay with imperfections, feeling the warm sun on your skin, feeling loved, having a sense of accomplishment after working hard.. and tonight it was the squeal of my baby boy as he proclaimed to the world that he finally did it.

I hope I am getting better at appreciating these moments. Tonight was huge for me. Sam walked. After weekly PT sessions for almost 22 months and agonizing nights and days of worry, prayers, hope and faith about whether he would get to accomplish goals like these one day..and then he did it. I never would have expected what I would feel at seeing Samuel take his first steps as something that could leave me so completely humbled and in awe of what really matters in my life. But the amazement I felt was not really for his actual first fledgling efforts at walking.. something I watched each of the girls do in the normal progression of their development.. and even as long awaited as this all was after being told by so many for so long that it might never happen.. It was actually in the witnessing of the simple and immense joy illuminating my sweet boy's little face as he discovered his accomplishment that I felt God's grace and real praise. I will have to post some videos here of these moments when I can figure out how.. it was in his simple crys of glory, all the while being cheered on by his sisters that made my heart swell.

Why can't we all be so perfectly full of hope and joy at experiencing each new development of our lives in the moment? Why can't we stop and just enjoy them with child-like wonder? To our children, every moment holds some kind of new fascination or appreciation. Very little is taken for granted. In the Faith Hill song, the bartender Sam says "The secret of life is to try not to hurry..But don't wait. Don't wait." This speaks to me so much.. I am always in a rush or conversely..I get too tangled up in looking back that I don't effectively move on and let myself just go with the waves a bit. You can over rush it or defeat yourself before you are even out of the gate. Sam has everything ahead of him but finds special joy in relishing each moment in its own light. For a kid who has been through what I can only call hell on earth.. it has not stolen his innocent joy and curiosity. Sam showed me this tonight as he squealed with excitement and kept bounding back up to try, try again. He was quite tired at the end of it all but the smile seemed permanently glued to his cheeks.

How can we justify hearing adults whining about the inequities and challenges of life or worse..even doing it myself when I see this incredible light coming out of a child, despite experiencing setbacks and struggles we can hardly relate to ourselves?

The secrets of my life are not in the past.. or really too far off in what I want for the future. It is in appreciating the pure and simple beauty of the here and now.. while still moving on towards whatever life has in store ahead.. they may seem fleeting but if I give God the thanks for the richness of each as it happens than it's not really a secret life will be filled as I live it. As they say in the song.. "the secret is nothing at all." God intended for us to be in the middle on life.. not a perfect mess, completely rushed and chaotic with no sense of direction or effort but also not so completely stable, comfortable and micro managed that we don't have areas left to chance.. left to force us to really live in the moment. Because after all, we need Him in order to whether the ups and downs of life.. and He is a jealous God.. who expects to be in the center of it all..for us to meet him part way, and then to trust him on the rest of the ride. SO this post is about rekindling my child-like faith and allowing Him to show me the secrets to a full and satisfying life one experience at a time.

Friday, December 2, 2011

Thanks in the month of November..

I am thankful for all our blessings.. for each new day.. for each lesson learned.. for every challenge and opportunity.. for my family and friends.. for those who helped us through the hard times and those who enriched our lives with good times. I guess most of all I give thanks for the things that have mattered and the discovery of the things that don't. For all of this and so much more, our cup overflows and we were filled with thanks during the Thanksgiving holiday and will continue to be every day.

Recap on the rest of November..

Before leaving for the Alabama trip when my Papaw had a stroke, Samuel had come down with his umpteenth double ear, eye and sinus infection for the year. He started a 10 day run of cefdinir antibiotics and when I returned seemed to be doing better. He slept a ton.. which is already way more than most kids do on his good days but when sick seems absolutely non-stop. Over that week, we had our previous general contractor back in the house to finish some issues from 2 years ago and to make some additional adjustments to the house. It was a little chaotic and the weekend was already looking somewhat overscheduled with activities, so maybe I should have known Sammy would end up feeling the effects of all this activity. Well.. we ended up taking a major downslide after the busy weekend.

This picture above was taken of Sammy after learning to stack these triangle shaped crayons. He was so pleased at himself that he made a sound eerily similar to "I did it!" He now says this same line from time to time when he does something right, much like how he has long enjoyed clapping for himself. Seeing as his only other real words right now are "dad-dy", "mamaamama" and Dad-du (for thank you), I was pretty excited. He is also now whistling and can immitate repetitive sounds that we make for him. Jason comes up with a sequence of sounds and Sam whistles or hums them back in perfect order.. He is actually very musical and seems to have a good "ear" if you know what I mean. He just does not speak out yet as much as we would like. I want to expand his use of sign language.. he understands far more than he performs but at least now he tells us when he wants more food and more play etc...

Busy Weekend

The Saturday after I returned from Alabama included a final soccer game and party for Isabella as well as a birthday party for Sofie to attend. Additionally, Samuel was invited to go watch the local Grace Rides Family Day at a local camp ground where children with special needs would be riding therapy horses, showing their families and friends all they had learned this year. So, to make all this happen at once, we split up some parts in order to conquer everything. Samuel was very quiet in the stroller but seemed happy to be getting out of the house.

Soccer games have been a great outing for our family this fall and I will miss those mornings, even with the hubub of coordinating uniforms and snacks as well as packing up all of Sam's "gear". I love watching the girls be active outdoors in the fresh air and I think Sam gets alot out of the experience as well.

Sofie had a great first season, showing us what we long have suspected that she is quite the athletic child, but we were also excited to see Bella take more interest in the sport this year. Of course I had to laugh when a friend of ours captured Bella running with pure joy and abandon during the last game as she clutched a palm full of wild flowers in her hand.. that's our Bella.. practically prancing along the field!

Samuel had the opportunity to make some new friends at the therapy riding event we attended that afternoon. The little girl on the horse in the picture below is 2 and had suffered a stroke before birth leaving her with many physical challenges. Although she and Sam share a therapist and we actually have mutual friends with her family, we had never met in person before. I remember talking to her mother early on in Sam's life about my G tube questions, and my frustrations that Samuel was missing so many milestones. She seemed so much more experienced with navigating the rough waters of having a medically complex child. It has helped me to know there are other moms experiencing this and coping well.

As I watched this beautiful little girl show her strength atop this horse, using concentrated skill at placing hoops on the pipe in front of her, I thought about how many parents take it for granted that their child will sit up on their own or eat orally or do something like riding a horse. To see this sweet child accomplish her ride and the task of placing the hoops on the pipe, all the while whipping her neck to the side to smile over at her mother was quite an amazing sight.. it sent chill bumps up and down my arms. I was near to tears to see what a positive effect this program has on the participants. I think we had been invited to come see the performance as Samuel may be a candidate one day for this program after turning 2. He is soo small right now though that I can't even envision when I could feel ready for him to take such a big step. He really is about the size of a 9 month old and will be 2 in the spring so it may be awhile for him.

It is so wonderful though to know our area has resources available like this one. Every child that we met was obviously facing completely unique personal challenges but the one thing that they all seemed to share was their determination and I think that is something that we could all stand to learn from watching them. I know I personally feel ashamed at myself when I watch Samuel struggling to stack an object or get a spoon up to his mouth. Nothing comes too easily for him.. but he always keeps at it.

Bath time has become a new area of acheivement. Sam has a special bath chair that he can lay on but in recent weeks, he has been able to hold his core with more strength to stabilize himself while sitting in the bath. Of course we are always ready to grab him if he loses his balance. He really loves this daily bath time, I just wish activities like this were not so taxing for him. It matters not whether his bath follows other activities or is taken right after waking from a nap.. he is always ready to go back down once the bath fun is over. This is much like the PT and DT therapy sessions. He may be able to cruise now but give him 30 minutes of cruising and crawling and you will find him laying down and rolling to his back, ready for a nap. This is a constant reminder that his batterys don't stay charged for very long periods.

Following the busy Saturday of activities, my mom came to stay so I could get her off to the airport at 4 am for her trip to Belgium. That, in of itself was a stressy experience as I worried over all her gate changes and the long day traveling. Luckily, she made it there safely. Since then I have gotten reports of what a great time she is having so I am really happy she made the decision to go.

It was the next day that I noticed Sam sliding a bit in his endurance and overall health. By Tuesday evening, he had taken a full downward slide in his breathing and overall wellness. He was retracting and using accessory muscles to breathe. There had already been a bit of noisy breathing but it was Tuesday night when, of course we had the rare instance of no nursing care, that things took a major turn for the worst with respiratory distress and GI pain. The usual nurse had gone away to see family for the holidays so we were up all night with Sam. He was miserable and fighting every attempt we made to make him more comfortable. He was dropping his O2 saturation levels but would fight the placement of the oxygen cannula in his nose. He was writhing against his GJ tube feeding so we eventually stopped the pump and stuck with pedialyte through his G tube. He was running fever which is unusual for him since even if he feels raging hot to the touch, sometimes the actual reading will come back sub. He is odd that way. The next morning we headed in to see the pediatrician and she could not figure out the main source of his symptoms but started a new round of augmentin antibiotics for another 10 days.

I posted a few videos on our youtube channel of Sammy not feeling so great..these were actually when things were improving and he finally was so tired out that he drifted into sleep. The rough night was far harder to watch. I just hate that paralyzed feeling as a be unable to fix it and just make it all better.

I left the pediatrician's office confused about what they thought had really been the source of this newest setback since apparently the ears and eyes don't seem near as bad as before... what were the antibiotics meant to treat specifically..or do we answer every illness with yet another round of antibiotics and hope it works? I was just thankful that he finally laid down and fell asleep more restfully, albeit labored. He spent the next 3 days sleeping constantly but at least perked up a bit for Thanksgiving day to have a few smiles and some happier, less junky sounding moments visiting with our family.

Thanksgiving was more laid back than usual. We had Jason's parents for dinner, as well as, his sister, her son and Jason's grandpa. The kids enjoyed playing in the backyard and I spent most of the morning cooking, thankful that the nurse was available to watch over Sammy. I could not help recalling this time last year, when amidst the hubbub of planning the meal, Sam had a big brady and later a seizure as well. There is nothing quite like the peace of mind of having someone else there for him on crazy busy days like these so we know his needs and routine won't be disrupted.

After sleeping much of the day, Sammy went on to sleep from 9pm to 12 noon the next day too.. obviously he needed some zzzs. Since then he seems to be getting over whatever attacked him but has had some sporadic unexplained pain moments and junkiness with his breathing.

Over the last few days of this month I discovered our dryer was not drying as it has a bad heating element.. it is only 2 years old but of course I was given the "they don't make em to last these days.." speech and so I guess I just have to suck it up and get it fixed. After just having to replace the pool pump for over $1000 and the whole AC/ heat system this summer for $6000.. I am officially DONE with stuff breaking .. maybe 2012 will be a repair free homeowners year for us having replaced every thing that could possibly fall apart. IS there a replacement available for me though if I fall apart.. that is the question of the hour! HA! I must say I did enjoy a little girl time at the end of this month with my good friend Jenni, who was visiting for the holiday weekend. Nothing can refresh you and get you back in the right attitude like some good old fashioned gal time!

I am happy that I somehow managed to squeeze in the Christmas decorating right after Thanksgiving in hopes that now for December we can just sit back a bit and enjoy the down time. The girls are into some new activities like learning to roller skate and joining a church cheer squad so I am sure we will not be too bored.

As for me and the pregnancy.. (and I guess I will have to find time to snap some belly pictures to show here) I am HUGE. 32 weeks and I still feel pretty good but very tired.. I guess it feels quite different to be pregnant for the 4th time at 32, than how it felt for the 1st time at 25. I had to go do the 1 hour pregnancy glucose testing this month and it was about 2 points over the limit so I then had to go to the hospital for the 3 hour glucose testing which came back fine..I passed. I figured I would as usual but it is such an inconvenience and I HATE the yucky drink stuff. ICK.. I have a high risk appt on Monday in Pensacola right before Sam's cardio appt and scheduled echo. I am praying for no issues or concerns for any of us that day. I really think the hydronephrotic kidneys that they had seen will turn out to be nothing as they have told me but in light of Samuel's scary final trimester and birth, I want to be proactive. The only other thing I am praying about is those pesky blood pressure concerns. I have had a tendancy towards preeclampsia in 2 of the last 3 pregnancies and when I went in the week before last it was elevated on their first take. They asked me to relax (which struck me funny since I was waaay more relaxed than usual) and then retook it after a short period and it was a little lower but since then I have had some "moments" at home (a few floaties in the vision and elevated BP) as well so I am trying to manage my stress and stay calm as a cucumber. Of course I have read that none of that really matters if your placenta is prone to preeclamptic problems as it is already out of your hands completely..I read somewhere that the biological changes of the placenta are ingrained from the getgo and not brought on really by anything you could be doing stress-wise... so praying not to have any of those issues this time...I just want to welcome a healthy baby boy.. 10 fingers and 10 toes and a life free from too much struggle. Is that too much to ask? It seems God also has that one in his hands so I will trust him on this. I am also placing other prayers in his hands..prayers for friends with children who are ill and in the hospital, prayers for my grandfather and grandmother as well, prayers for deployed husbands and families apart for the holidays.

Friday, November 18, 2011

Heart of Dixie

God granted me more blessings than most when he planted my roots into such a beautiful garden of a family. Each member embodys unique characteristics, but all together they are quite balanced and compliment each other. Members of both my mom and dad's sides are filled with such special and unique people. As I look back on my formitive years, each played a role in shaping my life. A few of the flowers in my garden have long stood out in particular.. tall and strong, like sunflowers, these members have set the bar high. My mom's father, my Papaw, has always been one of these figures for me and my sisters.

Although our military life meant growing up all over the world, our family roots were always deeply dug into the characteristic red clay of the Deep South. I have vivid memories of childhood visits to Alabama and Georgia... summers spent running in the fields of home grown veggies, chasing lightening bugs or hiding under the table while listening to older ladies playing bridge and drinking tea. Our life in Northwest Florida certainly mixes in some southern influence with the laid back "beach life" culture, but it is still quite in contrast to the rural "back home" we know exists only a few hours north of us. In recent years I have not been back as often to certain familiar settings that once felt like home. This week, however, my mother and I made a trip back up to the Muscle Shoals area of Alabama to see my grandparents after we got news that my Papaw suffered a stroke and was experiencing other life threatening turns in his health. It was a hard drive as we had such heavy hearts thinking about the impact my grandfather has made in all our lives and how greatly missed he will be when his time here on Earth is through. Yet, I feel some peace knowing how full his life has been and I can only hope he knows how much he is loved and appreciated.

During our stay, my mom was thankful to be there with her sister, her brother, and their parents - all under one roof. They have such beautiful memories and experiences, collectively bonding them together. It is just sad that sometimes it takes difficult circumstances to pull us back together. I was happy to hold my grandfather's hand and feel embraced by the love of their home. I am glad he decided to leave the hospital, stop the invasive procedures and just go home to where he feels comfortable and loved. He is certainly effected by the stroke and other health problems he is suffering but his general demeanor was quite himself during our stay. He could not form very many clear sentences but seemed receptively to understand most of what was being said to him. I was suprised when he was looking at pictures of my children and all of a sudden was able to clearly ask me about Samuel. It was like a cloud lifted for a moment and he had more control of his speech.

We had to return home late yesterday. As we began our drive back I decided to stop for a few pictures of my mom's small hometown and later to capture some of the roadside beauty found along the back roads of Alabama. My first pictures were outside the home of Helen Keller. Helen Keller's birthplace and childhood home is not far down the road from my grandparent's home where my mother grew up. I remember watching outdoor plays of the Helen Keller story portrayed behind the home. I never really thought much about the significance of that small town girl and how she overcame the great personal challenges of her disabilties while inspiring others. I know the significance was not lost on my mother as we pulled up and she pointed out the well where Helen first learned from her teacher how to say the word for water. It made me further thankful for the services and therapy that Samuel has been able to receive. In many ways, this small town Alabama child's life played quite a role in why those services are more readily available now and why there is hope for a quality of life for all children.

Driving home, I was amazed to see so much cotton growing. It is November, afterall and was 34 degrees when we first got on the road after stopping halfway for the night. To glance quickly out the car window at these fields you would think you were seeing snow.. I guess that is about as close as I am going get to snow this year.

Views from Tuscumbia and on the way home..

Overall, I left a big piece of my heart in Dixie today. I am especially thankful for the family up in that area who are always so supportive of my grandparents. I am praying for continued faith and peace for my grandparents while taking life one day at a time. I am also praying for healing for Sam as he is getting over yet another bad double ear, sinus and eye infection. I look forward to Thanksgiving this coming week. We have much to be thankful for this year.