Peaceful Tuesday Drive

Today I drove Vivien down to MUSC to have her lab work drawn. A two hour car ride with my sweet Mae Flower and God. I love driving to Charleston, crazy I know. But, after living there for two years during college I began to grow especially fond of the spirit of Charleston. I love looking to my left and over my right to see the Marsh and all of the Sweet Grass Basket Stands. There is such history and culture in Charleston. Michael and I talk quite candidly about moving to Charleston one day. I could see us rocking on our back porch overlooking the marsh enjoying a good cup of coffee and reminiscing of our youth.

During the drive I received a phone call from my future boss. I am excited to start working for a private organization as an Early Interventionist. I am honored and humbled to have been given this opportunity. After having some of the experiences we have had with Vivien and Early Intervention ourselves, when the job was presented to me, I prayed that God would help me to comfort other families that experience some of the same things we have encountered as a family and be their advocate. I have always reached out to find other families that have similar stories as ours. I feel a community is a place to connect and feel at ease with what is going on. I am excited to embark on this journey. It is only part-time and allows me to work from home 90% of the time in my home office. This will allow me to continue to spend time with my family and still go to all of the routine and maybe not so routine doctors visits with Vivien. I feel as if it is truly an opportunity in which I don't want to pass up. The fact that I get to stay home with my most favorite people and still help others gives me such peace about taking this job opportunity.

Vivien was such a trooper today. We chose to take the 2 hour trek down to Charleston because one of the best lab techs we have ever worked with was willing to draw Vivien's blood. We have had a not-so pleasurable experience with a local lab and thought it would be best if we drove a little farther for better service. Unfortunately, we had to do two sticks because the first vein blew :( I was so proud of her. The first stick she looked up at me and grunted with those beautiful brown eyes of hers and sweet pouty lips. But she held it together, kept her composure and sat through two or three vials. Then, her vein gave way. We then had to lay her down, and well that didn't go over as well. I think it is the crunch of the paper and the fact that she has all those faces looking down at her, a sense of disaccord. We then had to get a urine sample, it took a little while, but we were able to get all we needed and then some ;)

She's my hero. I truly sit and look at her and think of all of the things she has had; many shots, labs, procedures, probes, scopes, and tests and wonder how she can be such a jovial child. She is always laughing and smiling, loves to be loved and loves to give love. For all of her smiles and giggles I am blessed ten fold. I love this little girl and today was such a good day, just her and I.

Food Connoisseur...

Vivien was recently released from BabyNet. She graduated her speech therapy by starting oral feeds (I still have difficulty with this, because the goal was not to orally eat "safely," only to eat orally). Regardless, she has done amazing things recently. Her speech is still limited, she's only mastered a few words; Mama, Dadda & No. Words like; more and please, come out sounding very phonetically impaired. But I know she will get there. She even tries desperately to say things like "how are you doing today?" and "I want that." I have full faith that our sweet girl will get there, time is becoming more of a friend and less of an enemy lately. That is something I can accept :)

About three months ago we started letting her eat organic melt aways to just test the waters. The first few days were a bit rocky, but within a week, she seemed to be choking less and less and wanted them more and more. So, I then allowed her to graduate to the dissolvable puffs (we still broke them into small pieces for her). After about a month of that, I felt we may be able to try Cheerio's. She eagerly took to them and began to want nothing to do with the organic jared food I was giving. I'll take it! Anything to see my girl working those fine motor skills and wanting food. Parents that have encountered oral aversion know the sheer joy we have when our child wants food.

So, just last week I brought out the Goldfish. I would bite them in half, only giving her the other half, just to see how she responded to the texture and consistency in her mouth. Again, I couldn't get them on the tray fast enough for her. She couldn't get enough. I began having such excitement when packing her cooler to take with us out and about. Not only am I now packing a syringe for bolus feedings I am able to include a sippy cup with a stopper & a small container of Goldfish. Amazing how snacks can change my way of thinking. One morning she went to the pantry all on her own and grabbed the bulk size box of Goldfish and held it up with all of her might, signaling she wanted a snack :) I am so happy for her and her accomplishment and pray that she can continue to enjoy food and tolerate more and more textures and consistencies.

Evening before last I made chili for the big kids and thought, why don't I give her a spoon and a few beans to see how well she can coordinate a spoon to her mouth. To my surprise and fascination she did so well. She was accurate and careful in her precision of placing the bean on the spoon in just the right way. She was enjoying having the opportunity to scoop her own food and I could see the pride on her face as she sat beside her older brother and smiled up with the hope that we would commend her for her efforts. And, man-o-man did we?! She was so in-tune with what takes place at the dinner table, that she held out her dirty little palm to proclaim she needed a napkin. As she picked up the pink napkin to wipe her chili bean mustache I couldn't help but apologize to God. I apologized for underestimating all of the things that are possible through him and for ever doubting that a spoon and bowl were impossible for her to master.

She shows me everyday how strong willed she is and how much I underestimate all that she can do. I am grateful for moments when I realize I am wrong and I am the one that needs to just trust and have faith that she can move mountains.

Come And Listen...

"Come to the waters edge all you, who know and fear the Lord. Let me tell you what he, has done for me, done for you, done for us." dc*b

The day I found out I was carrying my first child I was so anxious, excited, but mostly anxious. I was humbled beyond measure that the God of the Universe, would show favor on me and my husband and bless us with the responsibility of raising a child. The moment I heard his heart beat and then held him in my arms, I knew only one prayer to pray...

"God, I promise to give him back to you. I promise to try everything in my power to show him your Love and in my faults, you will still shine bright, so that he will follow you and walk blameless in your sight all the days of his life. Thank you for this gift..."

I have continued that prayer with the birth of our daughters as well. My one and only continual prayer has always been that our children will know and fear the Lord and they will shine bright to surround themselves with people who have the same goal, and they make it their life's mission to share the Word of God with others in their own lives by being the hands and feet of Christ.

September 29, 2011

Isaiah, came downstairs to the office with this particular glow and giddiness to him. His smile was electric and I knew he had something he wanted to say. He started by saying, he was looking at someone who was wearing brown shoes, had red-hair, glasses, jeans & a blue jacket. My response was, well that sounds a lot like me, silly. To that he said, "yep and I love her so much."  I gave him one of those bear hugs that sucks the breath right out of you, as he gasped to come up for air. I gave him a smile and said, "I love you too buddy, more than I could ever show." Then he said something that made me giggle. "You know, I've been baptized?!" I questioned that, seeing as he has not. We felt he had passed the age of being Christened recently and didn't want to confuse him, so we eventually decided to wait for when he was ready. Then, he simply said, "yea, tha shower!" I continued to giggle and said, well not really. "Well, I held my head back." By this point I was on the side of hysteria. I then said, well how are people baptized? (we believe it can be a number of ways; immersion, pouring, or sprinkling). His response was, "well the preacher holds you under the water for like 5 minutes and then brings you back up..." I said, well yea, it's kind of like that. But, why do people get baptized? He said with such a boldness and assurance, "because they have Jesus in their heart and they want other people to know too." I think my heart smiled so big that the hair of my head was in a semi-circle :) I then asked if that was something that he wanted. He again said so boldly "yes ma'am! But I'm a little anxious, all giddy inside like I'm shaking." All, I could do at this point was cry tears of such joy, I had goose-bumps and could only think that the Holy Spirit had found its way into the heart and soul of my precious little boy. It all began to make sense, why he seemed so electric when he placed his elbow on the office desk and gently laid his chin in his palm, smiling with all the Glory of the Holy Spirit. He then proceeded to tell me that "it had been spinning around-&-around in his head for a while" (while holding his finger up to his head and turning it ever so quickly at the joint). So, I asked him if he would like to pray a simple prayer of repentance and acceptance of Jesus Christ. He agreed. So before bed, Michael and I joined by Laura Ellen, laid hands on Isaiah and led him in a simple prayer that held such significance.

In that moment I thanked God for all of the blessings he has so graciously given me and my family. I thanked him for the joy, proclamation, and salvation of our 7 year old. I told a close friend that I never really understood or could even comprehend the promise God had made to Abraham all those years ago until I looked into the face of my first-born. Generations of generations will know the God of the earth and praise the Son of Man and God. I am part of that lineage and my children are too. Humbled and so unworthy I am, we are. 

I continue to pray that he will walk towards a strong relationship with Christ and that he will live a life that will reflect that. I also pray the same prayer for our daughters and know that God is always faithful in his promises.

We are scheduling the baptism of Isaiah soon. He has chosen to be poured and I can't wait for that moment. I discovered what we considered his birth scripture when he was just a baby. His birthday is 6.8.04. Isaiah 6:8 in the Old Testament reads, God said,"Whom shall I send, and who will go for us?" And, I said, "here am I, send me." 

We are not much on superstition or signs, but we do believe in the divinity of God and have always felt there is such meaning in his birth scripture and who he is. 

A baby boy will grow to be big and strong and enter a world full of doubt and uncertainty with the imprint of God on his heart and in his life. This is where his story begins and I feel certain he will one day be able to say, "Come and listen, come to the waters edge all you who know and fear the Lord, let me tell you what he has done for me...for you...for us..."

 

Mitochondrial Disease Awareness Week

This past week was Mitochondrial Disease Awareness Week September 18 - 24. Mitochondrial Disease (Mito for short) is a group of disorders that affect the Mitochondria (Energy Cells) of our body. People with Mito,  are not able to convert food they eat, into viable energy and oxygen their bodies need. The disease is accompanied by a myriad of symptoms that literally do not fit a common mold. Numerous body systems are effected causing different levels of severity in those body systems. The facts of Mito are often grim and difficult to understand. Facts and Stats say:

Every 30 minutes a child is born that will develop Mitochondrial Disease by the time they are 10. Nearly 1,000 - 4,000 children are born a year with Mitochondrial Disease. 80% of children diagnosed with Mito by the age of 5 will not live to see the age of 20. Mitochondrial Disease is as common as all childhood cancers combined and just as deadly.

These are statistics that I can not escape. The thoughts of the last two sentences from the line above haunt me; 80% of children diagnosed with Mito by the age of 5 will not live to see the age of 20, Mito is as common as all childhood cancers combined and just as deadly.

I waxed and wained this week about writing about Mito Awareness and Vivien, because we are not certain this is in fact what she has, but it is a definite possibility and one that has given us a clinical diagnosis thus far. I try to think maybe all of Vivien's symptoms are just a fluke and with time, like many doctors have said, she will "out grow all of her symptoms." She is doing so well now compared to where she has been. However, there is an affirmation that resonates and lingers with me still; Vivien is and never has been like many other children her age. Her fight for life began early and she has fought very hard. As I type this, she is again sick with strep throat and an ear infection, not sleeping well at night and screaming out as if in pain a few times a day. She's restless, cranky & on edge, running around and smiling one minute and crawling in my lap the next.

Two weeks ago we walked into a doctors office to hear words like; uncertain, stable, & progressive. Difficult words to hear, even more difficult to comprehend. Although, as of right now, we are not certain of this diagnosis, I feel the tests will reveal what I have for so long thought was going on with our sweet Vivi Mae.

We stand on the fence. On that fine line of yes or no, certain & uncertain, progressive & stable, confirmed or unconfirmed. We will soon walk over that gray line to find a more black & white picture. Tests will give us answers that will give us more confirmation & more uncertainty.

Reading other blogs by Mother's that live Mito day-to-day with their children, has given me a better sense of how this horrible disease affects the lives of many families, families like; Jack's, Nathan's, Hudson's & Gavin's. More times than often, I feel as if I am reading my own words and experiences. Many families living our day to day and often times under far worse circumstances. For this reason, I knew I needed to write about bringing awareness to Mitochondrial Disease.

Less than 1% of Health Research Funds go towards the research for Mitochondrial Disease. Such a sad and stark reality. Raise awareness, Raise support, Raise your voices to let the adults, children, and families effected by this horrible disease be heard.

I firmly believe, stand for what is right, even if you are standing alone. Alone is where many of these families, ours included feel they are. But, with our support and advocacy, that small voice will rise to the surface causing a rippling effect that will carry on those voices, so that in hope more research can find better treatments and possibly a cure. Visit United Mitochondrial Disease Foundation or MitoAction to learn about ways to give.

Lean On Me...

I am a firm believer that I have some of the most amazing friends in the world. I am blessed with women that surround me with prayers and steadfast love. And I can honestly say, I too, love and pray for them as well. These women have laughed with me, cried with me, held my hand, hugged my shoulders, listened to me vent, fervently prayed for my family. Godly women, that love the Lord God with all of their hearts and represent that love by reaching out, not only to their friends and family, but to the community - to live and love like Jesus. They are whole-heartedly Proverbs 31 women. 

25 She is clothed with strength & dignity; she can laugh at the days to come. 26 She speaks with wisdom, and faithful instruction is on her tongue. 

While keeping a dear friend's little girl last week, another dear friend called. She wanted to check-in and see how things were going, catch-up with the family and chat for a few moments. But more than that, she wanted to call to set up a time to come and visit & asked what I would like for her to pray for, for our family. Humbled and honest, I laid my heart out to her, as I always do when we chat. Love, it's as simple as that, we love one another as if we were created side-by-side. 

Her requests got me contemplating how incredibly fortunate I am to have friends that desire more than just a shallow surface friendship. Friends that call to pray with me and for me and my family. That sort of friendship doesn't come easy in today's cold and self-centered world. I am blessed to be able to call SO many Godly Women my friends, we all have a common goal...Love Jesus with all of our heart and soul and share that love with the world. We all have the same desires in life and that is something that makes our friendships easy.  

30 Charm is deceptive and beauty is fleeting; But a Woman who fears the LORD is worthy to be praised.

I learned how to love ambitiously from my Grandmother, Mother & Sister, as well as the women on my husbands side of the family. Family will never be replaced, the things they have taught me about life have helped me to fair-well in this difficult world. They gave me roots & helped me find my wings. My friends have been the ones to help me soar, being the wind beneath those wings.