Sunday, January 31, 2010
"Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened." (Matt. 7:7-8)
Well, this week has been by far the most difficult week we have faced with Ansley. We have spent hours on our knees, hours crying, struggled with loss of sleep, loss of appetite, and continue to find ourselves in the midst of "battle". This weekend we have been able to see God moving in response to so many of His people praying. Here are some things that we want to praise God for:
1. Her twitching is still present, but has definitely lessened. We are thankful that it has noticeably lessened, and we pray that it will dissappear. Continue to pray for this and pray that Ansley will not have a seizure.
2. Ansley has begun to eat!! She ate three full servings of solids today! It is the most she has eaten in a day ever (by far). We are so proud of her. In the last few days her eating has made so much progress. Thursday, we walked out of our pediatrician appointment with the understanding that we were supposed to come back in two weeks for a final "weight check", and if she still hadn't gained weight sufficiently, we would make the appointment for surgery to install a feeding tube. To be honest, I thought we might as well make the surgery appointment right away because there was no way she wouldn't need one. But, praise the Lord, if she continues to eat like she has this weekend, one might not be needed! Even so, seeing her make the gains she has made eating is so encouraging and takes away a lot of fear (the greatest fear with the feeding tube is the thought of her having one her whole life). Pray that she will eat like she did today ongoing.
3. She has been so much more herself the last two days. We feel like we have our baby girl back! She has been so much happier, interactive, and present. She is just "there" again. There is no other way to say it than that. I can't tell you how much it means to see our sweet baby girl back again. There for a few days it seemed like she was slipping away. Pray that no matter what we go through with our daughter, we will not experience this pain again. This was the hardest, by far, part of the last week. When we see her smiling, giggling, laughing at her brother, and listening to us, we feel like we can keep on keeping on.
4. Her stiffness in her ankles is lessening. We continue to work with her feet, ankles and stance, and are noticing improvement. Keep praying for God to loosen her muscles and joints.
Lastly, we have an appointment with her neurologist tomorrow. This just a regularly scheduled check in. If you get this soon enough, pray for the appointment to be filled with good news!! We have had plenty of bad in her last few appointments. Pray that in the name of Christ, this appointment would go well.
"He answered their prayers because they trusted in Him." (1 Chron. 5:20)
Thursday, January 28, 2010
I write now to tell you the crushing weight of the information we have received in the past 48 hours. We feel beat down, broken and destroyed. There have been moments of heaving sobs, moments of silent numbness and moments of peace, hope and joy. So.. on Wednesday, at Ansley's PT appointment, I mentioned all of our current concerns as well as the fact that her leg stiffness is presenting itself again. Her left foot has always been a little stiff, but it has been more noticeably curling inward. The therapist began massaging Ansley's feet and legs and feeling around. She then informed me that the bones from about mid calf - down are bowed. Not as in bow-legged, but if you are running your hand up Ansley's leg, you can feel it sink in like going downhill and then coming back up a little bit. I listened as she explained the massaging and movements we can do to help with this and the potential need for braces as we try to teach her to walk. I then asked if this was the type of stuff you see in the kids who aren't able to walk and there was a long pause. Too long. As the tears started pouring out onto my cheeks she said, "Not neccessaaaarily.." I heard the 'but' loud and clear. She then explained she would much rather see an issue we can try to work with than see Ansley not interested in the world around her.. because thats the stuff you can't really work with or teach. So.. a choice to look at the positive and FIGHT hard, braces and all if need be, to pray earnestly and teach Ansley to walk. Praying that she will one day, this side of Heaven, scoot up a playground and run and play. That was bomb drop #1.
So, onto bomb drop #2-3. Today, I called our pediatrician to go in and check Ansley's growth and go over all of the things that have so rapidly been piling up with her. She explained that the shaking her head back and forth and the eye squeezing could be just a vision issue, and we need to have vision and hearing checks on her regularly anyway, so to go ahead with that step first. She explained vision problems are common with microcephaly and it would change the way we need to interact with her. Heartache. She then went onto to say what we know.. that it is likely to just be Ansley's brain and what it's capable of. And then the bomb... these words have been swirling in my head like a spinning top all day. She said, "It's not a matter of if, but when her brain is going to max out and simply not be able to go any further, and it's possible she is there." She said she thought that may not be true, but it's possible. There just is simply not a word to explain the ache of that moment. Also, Ansley has not grown in weight, length, or head circumference in almost two months. We have tried everything and exhausted all possibilities to get Ansley to eat and take in more calories. We are going to see a nutritionist next week to evaluate what Ansley's intake is, and if things do not DRASTICALLY change in the next couple of weeks, we are going to be looking at a surgery for Ansley about a month from now, to have a feeding tube put into her stomach and we will be feeding her through a tube coming out of her belly. I can still nurse her and try to spoon feed her, but she will be getting her nutrition through a feeding tube since we can't get her to eat. I understood the verse that speaks of praying in groans that words cannot express as I drove home. No words came out of my mouth, just sounds of such pain and desperation for the Lord to come and save. I couldn't breathe thinking of Ansley's brain going no further and what that means for her life. I felt like my insides were melting thinking about her going through surgery and being fed through a tube. I just kept thinking of John 10:10 "..I have come that they may have life, and have it abundantly."
We thank you, so much, for your prayers on Ansley's behalf and we plead for you to persist on with boldness claiming that abundant life that Jesus Christ came to give. Claiming John 16:33 "But take heart! I have OVERCOME THE WORLD." Claiming Matthew 19:26 "..All things are possible with God." Claiming "Acts 4:5 "Stretch out your hand to heal and perform miraculous signs and wonders in the name of Jesus Christ." We will NEVER grow weary of praying for deliverance, this side of Heaven, for our daughter. We pray according to God's will, praising Him for His goodness and faithfulness, praising Him that He is bigger than this battle, and pleading for Him to come in and save. To stretch out His hand to heal. God is the same as He was when He parted the seas, He is the same as He was when he rained manna from the skies in the middle of a desert and He is the same God who called the dead to life. Pray for protection against seizures.. thank you Jesus for protection thus far!!! We plead for you to approach the throne of grace with confidence for our dear baby girl.
Thank you, thank you, thank you. We love you so much. Thank you!
Wednesday, January 27, 2010
Today is the day of trouble. Me and Jordan are desperate. The last few weeks have been the hardest season of Ansley's life. She is still having a lot of difficulty eating, starting screaming while she is sleeping (and showing other signs of aspiration), and she has begun doing some new things that are really concerning: She has started developing a --I don't know what to call it, a "twitch" sounds too little, but it is not a seizure--. She is shaking her head back and forth, squinting her eyes really tight, and shaking her arms (like a big cold chill). There is no other way to describe it, other than saying that watching her do that is terrifying to us. For the last few days, it seems like Ansley is going backwards. She is has seemed distant in her interactions with us, then the twitching started. It is breaking our hearts. We need prayer now more than ever. We still trust ever so deeply in the Lord, but we feel so broken, empty, and lonely. It has been a really hard month that has really kind of collapsed on us the last few days. We have hit a place where we both feel like continuing on is impossible (we know this isn't true, but it is how we feel). It is hard to put this message out for all to see, but we really have nothing to hide. We need you to join with us in crying out in the day of trouble. I pray so passionately that God will answer and we can hang banners and sing songs of victory over our daughter, but right now we are in the midst of battle. Pray that we will have a renewed strength and the today is the day of the Lord's deliverance from Ansley's recent troubles. Thanks.
Wednesday, January 13, 2010
UPDATE ON ANSWERED PRAYER: Ansley has begun to take huge steps in eating solids! (Still has a ways to go, so keep praying, but we can see huge improvements), She has begun eating more and more and has not (as far as we can tell) had any significant issues with fluid in her lungs! Keep praying for her feeding, her physical and cognitive development, and our protection. We can see God moving in so many ways in her life, and we need you all to keep praying!
Tuesday, January 12, 2010
It has been a little while since we gave you all a "list" of specifics to pray for our daughter. I believe that God has called us show the power of prayer to His people through our tiny little princess, Ansley. We have struggled through some emotional difficulty and discouragement recently and God revealed to me that there is so much of Ansley's situation that I won't let go of. That He is calling to us that we are to let it all go, to lay Ansley's life (and Zachary's for that matter) down before Him. He asks of us:
"Therefore humble yourselves under the mighty hand of God, that He may exalt you at the proper time, casting all your anxiety on Him, because He cares for you." (1 Pet. 5:6-7)
This is challenging, but also liberating. We have found peace, comfort, and refuge but it is a constant struggle to not "pick up our anxiety back up" after casting it on Him. As weird as it sounds, it is humbling to ask for prayer at times. In some ways, it is admitting that things are beyond our control. The further I travel through this journey, the more and more areas of my life I see that I refuse to let go of control. So, as you all pray with us please pray for these 5 items every day for the next two weeks and we will update you how she is doing in regards to what the body has raised up to the Father on her behalf:
1. She is not gaining any weight. She is having difficulty eating (solids and nursing). Pray that she would tip the scale at our next check up.
2. We have begun on solids again. This was delayed because last time she was (best I understand the doc's explanation) getting fluid into her lungs because her windpipe wasn't closing enough when she swallowed. Last time this fluid build up resulted in a mild case of pneumonia (and a trip to chez Children's). She has shown some signs of last times troubles, coughing, choking, some heavy breathing, BUT everything has been significantly milder!! (no waking up in the night screaming!) Pray that Ansley will not aspirate and no fluid will be in her lungs.
3. Ansley has had to see a specialist because her swallowing is incorrect. She has a high palate, sensitive gag reflex, and backwards caving of the tongue. What this means is that the already arduous task to teaching her how to eat is much more difficult. She naturally has a inclination to push food out instead of swallow. In the past week we have been feeding her it has gone well in the fact that we haven't had to take her back to Cildrens and she seems interested and excited about eating; however, at this time she really isn't "getting" that she has to open her mouth and swallow on her own. This is tough emotionally for obvious reasons. Pray that Ansley will learn quickly and correctly how to swallow and eat solids.
4. We are beginning to work on "cognitive development" with Ansley's TEIS specialist. This is a little scarier for us because we can see physical signs, but mental development is a little more "unseeable" and thus a little scarier. Plus, she has always been right on track with the physical development, but her cognitive development is not currently where it should be. Pray we would see signs appropriate to her age such as: reaching for us when we come near, more syllable sounds, holding things with two hands, more recognition of surroundings, stranger anxiety, etc. She has been showing signs of trying to crawl/move forward, but her upper body needs strengthening. Pray that Ansley's cognitive development would be just as full of God's grace and power as her physical development has been for the past 7 months.
5. As always, our faith is in need of prayer. It has been a journey full of trials, ups, downs, and everything else. We are constantly under attack from the enemy for our stand of faith and public hope in God's word. Pray for our spiritual strength and protection. As always your verses, emails, and letters are greatly appreciated. The more that we have believers stand with us in our wholehearted hope in the truth of God's word and the bold confidence that the Lord's power is not bound, the stronger our faith becomes.
"Remember your word to your servant, in which you have made me hope." Ps. 119:49
Thursday, January 7, 2010
How He Loves
The David Crowder Band
If you have not yet heard this song, I would highly recommend listening to it. Everytime I hear this line, it sticks out to me. I long for our afflictions to be so covered by the glory of the Lord, that we are unaware of them. I know this is possible, but my flesh is just so weak. It will only be accomplished through the enabling power of the Holy Spirit. Hopefully, my last post wasn't too much of a downer, but I have to be honest through all of this. I can not share the victories without also sharing the defeats. For the past couple of weeks, I have just had such a daily struggle to push through the pain. I have been relying entirely too much on myself and focusing entirely too much on our circumstances. I was reminded last night of Peter and Jesus walking on the water (Matthew 14:22-33). Whenever Peter took his eyes off Jesus and focused in on the wind crashing around him, he started sinking. But, when his eyes were fixed on Jesus.. he walked on water. This is a perfect example of where my heart has been the past couple of weeks and thankfully, the Lord just yanked me out of it last night with this passage of scripture. I am Ansley's mother, and when I look at the facts of microcephaly, I WILL SINK EVERY SINGLE TIME. If I keep my eyes glued on my King, I will walk on the water. I will be unaware of the afflictions around me. I know it is a possibility that Ansley's brain could just stop growing at any time. I know it is a possibility that her face could become deformed as she grows. Those thoughts are devastating to my heart as her mother, but those thoughts are just fear of the possibilities. She will never be limited to what doctors say is possible for her, because she belongs to a God who's power knows no limitations!!!!!
"Is the Lord's power limited? Now you shall see whether my Word will come true for you or not."
Ansley had her first physical therapy appt yesterday and it didn't exactly go amazingly well. Honestly, if you asked the therapist, I am most confident he would say it went great, but when you watch your child not respond to things the way you know 'developmentally' they should, its not exactly awesome. Walking out to the car, I knew I had two very clear choices and I wanted to cling to the good that came out of it. At her initial evaluation two months ago, she was incredibly stiff in her limbs, wasn't crossing her midline (reaching across her body- right hand to left side), wasn't grabbing her toes and really didn't make an incredible amount of eye contact. (The eye contact thing wasn't neccessarily the PT part, I just threw it in there anyway) Now, she is sitting propped (her hands on knees or floor to support herself) and independently for extended periods of time.
(The Boppy isn't touching or supporting her, it's just there to cushion her in case she tips over)She has not only been grabbing her toes for quite some time, but also putting them in her mouth. She crosses her midline as she should and locks in on any face that is talking to her. She also started responding to her name a lot about a month ago. As far as what is actually going on inside her brain.. her corpus collosum is thinner than it should be, and her cerebral cortex has underdeveloped gyri and sulci lines/patterns. The cerbral cortex, among other things, is responsible for automatic responses. I notice her doing things constantly that she should be doing. She catches herself with her arms when shes falling, leans back when Zachary comes flying in for a kiss, jumps at loud noises, looks for objects that have fallen and etc. I knew coming out of the appt, that no matter how tempting it was to focus on the negative, that I HAD to focus on the positive. I prayed on the drive home and was just telling God that I knew I shouldn't just be seeking Him for my comfort all the time, but that this was what He had written for my day, and I needed Him to give me some peace. I'll admit.. there may have been a touch of frustration in my tone, : ), but I was desperate for Him to give comfort for the trials He was allowing. The words had barely escaped my lips when I heard him speak. He very simply and very clearly said, "I am God." Welp, yea that did it. Immediate peace, immediate comfort, immediate submission. Just three simple words, but there really isn't anything else to say and I could not have possibly imagined a better response. There was no piece of information that I needed to know other than the fact that He is in control of everything that happens in every moment of humanity, and He had the day under control. I stopped whining after that.
Now, I know this will surprise you, but I have a quote from Spurgeon to share with you. Actually, two. Here is the first:
"O child of suffering, be patient; God has not passed you over in His providence. He who is the feeder of sparrows will also furnish you with what you need. Do not sit in despair; hope on, hope ever. ..His heart beats with pity for your woe, and His omnipotent hand shall bring you the needed help. The darkest cloud shall scatter itself in showers of mercy.."
Our faith cannot be grounded on how Ansley is developing, or any other trial that may come our way in this life. It must be grounded on the gospel of truth. It must be grounded on the Son of the Living God! He will never pass us over in His providence. Could there be any greater comfort?
Rob bookmarked the evening of April 25th for me to read this morning. The verse for the day is Revelation 3:20. It says.. "If anyone hears my voice and opens the door, I will come in to Him." Spurgeon goes on to say that.."There is no treasure-house of God that will not open and yield up all its wealth to the soul that lives near to Jesus... Fling wide..the portals of your soul..and..He will come with that love that you long to feel; He will come with that joy into which you cannot work your poor depressed spirit; He will bring the peace that now you do not have; He will come with His flagons of wine and sweet apples of love and will cheer you until you have no other sickness but the overpowering, divine love..
And speaking of love.. though not the divine kind. Here is one of it's most beautiful forms:
Zachary's mind is such a sponge. He soaks up everything we say and do and then repeats it himself. He loves to teach Ansley things, show her colors and shapes and be such a sweet big brother. You can't see the other box in his hand, but he was saying, "Answee gwurl, (thats how it sounds when he says girl and it is adorrrrable) do you see this box? This is little, (switches hands) this is BIIIIIIIIG." At which point, the shout scared her and she started crying, but it was precious up until that point. Haha!
We are still having some issues with Ansley's eating, but literally since Rob posted the prayer request, there has been a significant improvement. No doubt, the power of the body of Christ in prayer for her!
Rob is an incredibly gifted songwriter, and several months ago, he wrote a song for Ansley. He hasn't recorded it yet, but whenever he does, we'll put it up on the blog for you to hear. It doesn't quite do it justice without hearing it, but the words are still beautiful nonetheless.
"Dare to Believe"
The older I get, the more that I find
that people don't want to be wrong
They'd rather play it safe
than walk a hard line
and risk losing it all
But playing it safe, is no way to win a war
Itll barely get you out the door
I got to be honest, life aint worth living
'less you got something your fighting for
We're the ones who dare to believe
There's more to this life than you can see
We're the ones who dare to dream
And living means wearing you heart - on your sleeve
Narrow is the way and few enter in
Wide is the path to sin
Lord, I believe, help my unbelief
I know you died for me
But you didnt just die on Calvary's tree
You rose to set sinners free
So O God my father, I give you my daughter
Wont you please set her free
Set her free
We're the ones who dare to believe
There's more to this life than you can see
We're the ones who dare to dream
Living means wearing you heart - on your sleeve
He said something at our anniversary dinner that I loved. In his writer-esque ways, he said, "The author of the laws of nature has the power to bend them." I immediately text it to my phone so I wouldn't forget it. Haha! That reminds me, we were anonymously provided a wonderful dinner out and movie specifically for our anniversary by someone in the "Count it All Joy" movement and we are SOOOOO grateful to whomever it was. If you are reading this, thank you! We appreciated it so much! And again another thank you to everyone who was a part of that. If I knew who all did it, I would say thank you a million times over, but if you're reading this.. thank you again! You blessed us more than you could ever know!
We are so thankful for your prayers and ask you to continue to boldly go before the Lord asking for mercy and healing for Ansley.
-Praise for no seizures and continued prayer that none ever happen
-Praise that her awareness is improving drastically
-Praise that she is sitting up and hitting every milestone, though there are some noticeable things at times, it could be so much worse and we are so thankful for how gracious God has been to her
-Prayer for her feeding. Pray that she will always get what she needs. (Her evaluation tomorrow may be cancelled because of the snow)
Here are a few of the 'outakes' so to speak of all of my recent Zachary/Ansley photo sessions.
Monday, January 4, 2010
Friday, January 1, 2010
With God ALL things are possible.
Well, I hope you all had a wonderful Christmas. I put Ansley in Zachary's 'first christmas' sleepers this year (even though they didn't have a trace of pink on them) because I thought it was sweet and sentimental. This is Ansley the morning of Christmas Eve Eve (which is actually just as celebrated in my family!).
I didn't move my leg in time because she smiled, so I snapped.. but, she is sitting up so well now, and right on time. When I am struggling (which I have been and will get to that in a minute) the Lord always takes me to Psalm 103 to "forgot not His benefits". Zachary wasn't even sitting up as good as she is by this time.
We enjoyed our first Christmas as a family of four. It is so unbelievably special to share Christmas with your child for the first time. It was neat to explain the Christmas story again this year to Zachary because he understands the 'baby in the belly' stuff a lot better now since Ansleys been born. Though, he did refer to Ansley as baby Jesus a few times so...he'll get it eventually, what matters is that he knows why we celebrate Christmas. Ansley enjoyed all of the Christmas stories as well, if you count trying to rip and chew the pages as enjoying. One amazing blessing was sharing Christmas with Dan (Rob's dad). As most of you know, he was diagnosed with pancreatic cancer last fall. When he got his diagnosis they told him the average life expectancy with his prognosis was 100 days. A few weeks ago Dan hit day 400. 400! What a gracious gift from the Lord. Dan has spoken of conquering the 'last enemy' (1 Cor. 15:26 - death) and has done so with an unwaivering faithfulness to the Lord. He will be the first to boast in the the Lord and tell you it all the strength of Christ. It has been humbling and downright awe inspiring to watch him and Jan walk this road. Never complaining, yet showing they are human and being open with the grief.. clinging so faithfully to the Lord and still encouraging and uplifting others..speaking of Christ and His strength to be their sustenance.. the list goes on and on. I will never forget the day after we got Ansley's MRI results coming home from errands to a bouquet of flowers on our front porch trying to "brighten our day". They were trying to make us feel better and bring us joy even through their own circumstances. The following week was Rob's fall break. We had originally planned a beach trip, but didn't feel up for it, so Dan and Jan offered for us to get a cabin in the mountains to have some time away as a family. I remember Rob and I laying in lawn chairs on the back deck looking at the stars and realizing how BIG the God we serve is. Matthew 19:26 doesn't have any exceptions. There isn't any.."All things are possible, except the things doctors say are impossible.. " It is simply "With God ALL things are possible."
More on that in a minute, but for now I'll get back to a few more Christmas pictures. Zachary was a little more into the opening of presents than he was into what was inside, so it was nice when he took a moment to savor the contents : )
He was so thrilled to get a few Bob the Builder toys. Thanks to my sis-in-law, Holly, since I found out they don't sell Bob the Builder toys anymore because he isn't culturally diverse enough. I mean.. really? Moving right along.. I tried to get a picture of the kids sitting together, looking at the camera, and smiling, but I mean.. that is a LOFTY goal with a 6 month old and 3 and 1/2 year old. Never the less, this was my best shot.
We always have to get our traditional Christmas morning standing in front of the tree picture.
And no, your eyes do not deceive you. Rob is wearing short sleeved shirt. Hes not wearing a t-shirt, so I was happy! In my moms group last year, an older and much more seasoned mom and pastors wife at our church told us to get over harping all over our husbands about what they wear. She said we were willing to date and marry them based on what they wore before we told them what to wear, so let them be grown men and pick out their own clothes. So.. Rob chose short sleeves. Hmm.
I finally got a good picture of me and my girl smiling at the camera. Woo hoo!
We only got a couple of pictures of Zachary is his full on Christmas garb before the Christmas pj's got put back on. Oh well, not really a battle worth fighting there. Here is a sweet picture my Aunt got of Ansley in her Christmas dress.
Ansley loves having Rob's beard grown out because she loves the way it feels. You can find them doing this often.
We love to play on the bed when the sheets are in the washing machine. This particular day the bed was the water and I was the raft. I was stuck like this for quite some time because if I moved, according to Zachary - the inventor/orchestrator of all our games, he and Ansley would fall in the water.
This next week will be super busy. Ansley has her first real physical therapy appt on Wednesday. I am contemplating taking things back to just once a month, because at this point, she just doesn't need it every week. She will also be starting her speech therapy on Friday. It's just the evaluation and Im super excited about the way things worked out. Our pediatrician and Ansley's development specialist both mentioned making it a point to get a therapist trained in swallowing and feeding. She obviously isn't going for literal speech stuff. That might be jumping the gun just a tad : ) When the office called to get her scheduled, she said that the head of the speech department cleared a few appts in her schedule and Ansley got one of them! It's nice to know we will be in very capable and knowledgeable hands. I am so anxious to get this girl on solids! Her weight has been dropping because at this point, she just needs more. My pediatrician recommended starting a supplement of 2 ounces of formula after each feeding just to try to up her calorie intake. I wouldn't expect most of you to know my views on nursing, but I was definately less than excited about giving Ansley formula. A better fitting word might actually be loathe. She has yet to actually swallow any of it, not that I blame her, so not too much happening there. One good thing is that she is still mainting her length growth, which the pediatrician said is more important than weight. She said if she wasn't getting proper nutrition, she wouldn't be growing lengthwise, so the fact that she continues on the same growth curve was great. Not to mention, she is very active when she's awake, so there were no concerns there. Another awesome piece of news to praise God for is that Ansley's head has maintained the same growth curve. Even though its still significantly smaller (to have microcephaly, you are not even registered on the growth chart bc its below the zero percentile. Even a 2%, where it starts, is not considered microcephaly.) her head is growing at a normal pace. She has had the same amount of growth as any other infant, just a smaller head. Even just typing that it is such a struggle to fight off the flaming arrows! I tell you, it is constant! The thoughts that the enemy penetrates my/our minds with are always there. I can choose to take up the 'shield of faith' (Eph 6:16) or chose to believe the lies. I don't remember who said it, or where I heard this, but I remember someone once saying that every opprotunity is a moment to grow closer to God or move further away from him. Satan often tries to convince me when I feel sad or weak in this battle that I should feel guilty. That I have no faith because of sadness over Ansley's diagnosis and potential future, and it is such a lie. There are often people who seem shocked or confused as to how we ever be sad knowing that God is in control. Dan and Jan again have been such a source of comfort in this area and always provide affirmation that it's okay to be sad. They are going through devastating circumstances as well and are always the first to tell us to never let Satan make you feel guilty for sadness. I will be honest with you and just tell you my heart has been so fighting the sadness a lot lately. I know some people can't understand why we could be sad when Ansley is doing so well so let me just explain a little bit. Both Rob and I lay our desires out before the Lord everyday for Ansley, boldly claiming God's word for her and asking for a miracle only His power is capable of, but we must always pray according to His will. I had an incredibly sweet moment on a drive the other day listening to worship music. I was dwelling on who God is, His power, and His greatness and was just so overcome with emotions. It wasn't a new thought by any means, but just thinking about the fact that He just has to speak and her brain will be made new. That's it. His power is so great and so beyond anything we can conceive, that all He has to do is speak and her brain can be made perfect. It wasn't a moment of pleading that He would do so, but simply worshipping Him because He is able to do so. We are not praying for a sickness to go away, an injury to heal, or a daunting surgery to go well. We are praying for something that is earthly impossible to be reversed. It's the knowing that it might not be a part of His sovereign will to do so that is so painful. You just can't know what having all of your dreams shattered in an instant possibly feels like unless you've been there. There is a Casting Crowns song called "At Your Feet" that has just become my anthem. It is so simple and to the point about dwelling at the feet of Jesus. One of the lines in the song says..
"Here at your feet - I lay my future down - All of my dreams - I give to You now - And my soul sings.. You're all I need.."
I think I have yet to make it through the song without tears. There are times when I feel like all of the dreams I have had for our lives have been shattered and taken away. I have dreamed of having a daughter to share a relationship like I have had with my mother my whole life. My heart aches more than I could ever explain to know it is possible that those dreams will not come true. I know that Ansley is one of the greatest joys of my life, but it hurts so bad to think of what her life could be like. We know that whatever the Lord wills is for ours, Zacharys and Ansleys good, but that doesn't mean it won't be difficult. It's so challenging to be around other moms sometimes and hear their complaints about they day/day out stuff of life with young kids in light of our situation. I have joked several times that we need a VIP parking pass at Children's Hospital for how often we are there, but there is often deep pain hiding under the joking. We/she have endured so much in her precious little six months of life, but the glorious part of all of it, and the only thing that matters, is that Ansley's entire life has been about Jesus Christ. Every clear breath, every day that passes and still no seizures, every smile, every laugh, every coo, every milestone reached and each and every precious moment of her life has been about Jesus Christ. I hear Him calling in the moments of crushing sadness that He has chosen her to show His glory through. Seriously, how amazing is that??!! He has chosen my sweet Ansley girl to show His amazing glory in. To show that He is faithful to deliver, to be an ever present help in times of trouble, to be a healer, to be an answerer or prayer...and we pray, to show that He is a God of miracles beyond what our minds can comprehend. The down times are always followed by a strength to never stop fighting for her, never stop boldly praying and laying our requests before the Lord and never stop praying with a faith that can "move mountains"!
-PRAISE that Ansley has hit every milestone, praise that her pneumonia literally disappeared
-Praise that the stiffness that was once present in Ansley's limbs that made physical therapy neccessary in the first place has DISAPPEARED!!!!
-Praise that she has never had a seizure and pray that by the power of the Holy blood of Christ she NEVER does!
-Pray that Ansley continues to hit every milestone and that the Lord calls her brain to life by the power of Christ more and more everyday
- Pray that she will begin to show more focus and attention in her interaction with us and her surroundings. This is a big mental development that we are praying for currently.
Thank you so much for your love and support walking with us through this journey.