Kindess, Goodness...and the heart of a 4 year old little girl

Did you know that Kindess and Goodness walk hand in hand with each other? When we are kind, the goodness follows because of the act, emotion and ownership of kindess. The result (goodness) however, is not because of something we do of our own accord, it is because of our obedience to what God has called us to do. When we are obedient, to what God calls us to do with kindess, the goodness of God shines through....no question about it. And it is HIS goodness that transforms our lives, and the lives of those around us. 

I was reminded of the truth tonight, that even though I may be planting seeds of goodness in the kindness I am showing to those around me, it is not my job to wait around and watch those seed grow into blossoms, When those seeds start blooming, God is the one who comes behind me, and gathers it to Himself.  It is simply my job to plant the seeds, and then continue on the journey God has called me to. I may not get to see the blossoms, but sometimes, God allows me to experience a sweet fragrance of a blossom that has begun to bloom...

I saw this in action the other day. It was something that took my by surprise, but looking back...it really shouldn't have. David hurt his hand on a pointed object on the floor. It was really his 1st "serious" cut, and I had to put ointment and a bandaid on it. With him (my wiggly and very upset almost 2 year old) it was no easy task. I finally put him in his high chair so that I could have more control over the situation. As I was preparing the bandaid and the ointment, David was literally sobbing. I was speaking words of comfort and encouragement to him, when I hear my sweet Abby say "Mama, why is David sad?".  I replied with, "He has an owie on his hand sweetie, and I need to put a bandaid on his hand". And it was in the next moment when I felt my self pause as I heard my daugther (on her own) say, "Oh, David, I am so sorry. ...Dear Jesus, please help baby brother's hand to get better. Amen". I looked at her with tears in my eyes, and a heart that was beating out of my chest. I told her how kind and thoughtful that was to pray for him, and how proud of her I was at that very moment. She looked at me with a huge smile, and returned to her coloring sheet in the living room.  As I finished putting David's bandaid on, I couldn't help but reflect on the many challenges Abby has experienced because of her diagnosis..because of her delays. But at the moment someone needed her, there was no hesitation, there was no delay in what needed to be done. She breathed the truth to her brother...and make a request on his behalf. An act of kindness.....

As a mommy, I often question myself, my abilites, my calling, my discernment, my judgements, my decision making....and if I am making a difference in the life of my children and in my home. With Abby and David, there is a huge amount of extra work and thought that goes into raising them, guiding them and teaching them because of their delays.

For all parents, we find ourselves repeating over and over instructions, life principals, guidlines...and all the while praying that we are instilling in our children the truth, knowledge and understanding of who God is in their life, and what His calling is on their lives. Christian, ("Religious") or not, we all question ourselves in our parenting and if we are making a difference?

God knew that I as a parent, needed some reassurance yesterday when Abby prayed over her brother. That was one of the blossoms from the seeds I have been planting in her life from day one.  Now please don't take that sentence that I "have it all together", or "it is because of ME..." that Abby responded the way she did. It is because of what God is doing in our family through our obedience to Him, that she spoke the truth as she did. We don't always get to see the fruits of our labor,or the "harvest" of our work, but sometimes...just sometimes, God gives us a glimpse of what He sees as He follows behind us and grows the blossoms. 

Tonight, I go to sleep so thankful for the fragrance of the blessings in my life that are a result of God's work...and God's work alone.  Tonight I was reminded by Beth Moore, "Never minimize the implication of what God gives us to do. What we do is something of value...He will strengthen you as you pour yourself out on others".

Isaiah 58:6-11 says (paraphrased)

"If you spend yourself....

* your light will rise in the darkness

* the Lord will guide you always;

* your needs will be satisfied

* your frame will be strengthened

* you will be like well-watered garden, like a spring whose waters never fail"

I may be uncertain of tomorrow, but I can cherish today.......

It’s hard to stand back and realize that God takes our prayers seriously, and that sometimes He will put us (or our loved ones) through some really really hard things. In the end He will be glorified and He will be praised for His faithfulness. 

Here are the realities that I have had to cling during this raging storm in my life. 

a-This has not caught God off guard. Abby was His daughter long before she was ours, and His plan for her life is perfect! Psalm 139 has come to mind so many times over the past 3 weeks! He formed her exactly as He wanted her to be. 

b-Hebrews 12:1- is a verse I learned a long time ago that is applied to my life daily-if not hourly these days. “Faith is being sure of what we hope for, and certain of what we do not see...”. Faith is Abby’s middle name, and it’s a reminder to me that our lives are not predictable, they are not our own, and that every step we take is a step on this journey of faith. We may not be able to see what is directly in front of us, but we know that God has the most amazing and perfect plan for us, so we continue to press forward. 

c-“There is no cure”- This is the doctors words, not necessarily God’s words. It is not over until God says so. Look at how far we have come with technology over the past 10 years? Science has come so far.....what’s to say that there won’t be a cure even in the next 5 years? Watch out, cause I may become one of those moms who jumps into with the med students and professionals to find a cure for my girl!

d-God doesn’t want us to look so far into the future that we miss out on today. The moments of today will never be had again, and I chose to cherish and savor each one. Abby is our gift, miracle and treasure. Someone once said “having a child is like watching your heart walk around the outside of your body”. That is how I feel about both of my children.

There is no easy way to write this, so please forgive me if this is too blunt, but there is no sugar coating this really hard truth and our new reality. This is a very difficult blog for me to write as my heart has been so sad and tormented over the past few weeks. I have had to process so much, but am finally able to put into words what is going on, and to share why this mommy’s heart is breaking into a million pieces. 

5 words have been swirling around in my mind and heart over the past 3 weeks. 

Medical

Diagnosis

Life Changes

Uncertainty

Heartbreak

Medical- About a year ago, Abby’s pediatrician wanted to have a genetic test done on her. One that would hopefully give us insight into the “quirky” things she does, and why she functions the way she does. It would also give us insight into what what going on with her eyes, and her health as a whole. Our insurance denied the procedure and told us that it would be $7000 out of pocket to have it done. We (obviously) couldn’t afford that, so we let it rest. January of this year, we switched health insurance and they didn’t hesitate to cover it! So, it was as easy as a swab to Abby’s mouth and a trip to the post office to mail it off. The results came back, and we got the call that the doctor wanted to meet with us to discuss the results. “A missing chromosome”- 3 words a parent is devastated to hear. Our sweet girl has a missing chromosome. A chromosome that was necessary for certain developmental behaviors, milestones and even physical well being. 

Diagnosis- Abby is a carrier for “Joubert Syndrome”, and the doctor believes (after more tests are done) that we will find out that she does in fact have the disease and is not just a carrier. This disease is found in 1 in 80,000 people. It’s not something many people have heard of, and frankly it is something I wish I had never heard of and something I wish did not exist. It can be passed on by one or both parents, or it can morph into being on it’s own. It’s not a disease that must be passed down through the parents, it can simply develop on it’s own. Right now we know for sure that she is a carrier, which means that she will still experience side effects, and life long results because of this disease, but they won’t be as severe as they could be. IF however, they find her to actually have the disease, her life will forever be changed, as will ours.

Life Changes- “There is no cure”. This is a disease that there is no cure for...YET. Until there is cure (should Abby in fact have the disease), her life will begin to greatly change starting now. As a result of this disease(again should she have it), her kidneys will begin to shut down. There is no time frame given as far as when that would start, but the symptoms from this horrible disease begin to show themselves at 3 years of age. Abby turned 3 this past October. The discussion has been that when her kidneys begin to shutdown, we will have her put on the kidney transplant list and pray for a match. The 2nd major effect on her life will be that anywhere from the age of 10 years old and on, she will begin to lose her eye sight, and will eventually go completely blind. This normally doesn’t happen until the teenage years, but still happens none the less. There is no cure. Nothing can be done to delay it, or stop it, and in the meantime, we have to deal with a very difficult and devastating reality.  Even if she is only a carrier, she will still experiences devastating changes in her life which could include lack of vision in her eyes if not complete blindness.  She will continue to have a lack of control when it comes to muscular reactions in situations. This explains to us why she will randomly hit someone  in close proximity (including us, baby David, strangers in the store, kids in Sunday school or preschool) to her. She is trying to communicate “hello”  or something else but her body can’t cooperate the way ours does. When she realizes she has hurt someone due to this lack of muscular control, you can see how devastated and sorry she is for her actions. It breaks my heart as a mommy to watch her as she looks to me for reassurance when she realizes that she either just hurt someone or someone has scolded her for doing something she has no control over. It is a daily battle for her to control her physical exertions, and her daily mantra to herself is “no hit _______”.

Uncertainty- So, here we are, uncertain of what lies ahead in the life of our daughter who sleeps soundly in her bed, and has no idea of what is coming for her both this week and in the years to come.  We won’t know anything more until they run a couple more tests. Praise the Lord they are happening this week. 

Here is what has happened and what is going to happen:

*3 weeks ago we met with the doctor to discuss the results of her genetic testing. 

*2 weeks ago we took Abby in to Stanford to have her eyes checked, and so far they are looking good. They said that the back of her eyes are “glossy” and that is exactly how they need to be to be healthy! This is very good news! Her lazy eye has gotten worse without her glasses, but with her glasses her eyes stay completely straight (for the most part) and that is a very good thing! We will continue to go back for exams every 6 months to see if the Retinitis Pigmentosa has advanced at all and where we are on that part of this journey.

*2 weeks ago we also had an ultrasound done on her kidneys. There are no cysts as of yet (another Praise the Lord), but she does have some very small kidney stones. Still waiting for those to pass...poor thing. We will most likely go back at least once a year if not twice a year for the ultrasound on her kidneys to see if the Kidney’s have begun to deteriorate.

*This Monday- we meet with the genetics specialists at Stanford. They will do an evaluation of her that will last about 90 minutes. The way I understand what will happen, is that they will do some evaluations of her developmental skills (gross and fine motor skills, speech development, physical capabilities etc) and see where she is on the spectrum. Please pray that they get clear insight and answers to their questions. That they will see what they need to see and we will have clear direction from there of what we can be expecting from her.They may also do a genetic test on Clay and I to see if she possibly received this from one of us. It makes a difference in how they approach it, not to mention will give us insight into the possibility of baby David having it too. 

*This Wednesday Abby will have an MRI done on her brain. It will let us know if there is a “molar tooth appearance” in the midbrain. This will give us a clear and definitive answer as to whether or not she is just a carrier or does in fact have the disease. She will be completely put under for this procedure. It will give us answers and help us be able to proceed with the next steps of life. 

Heartbreak- How do you tell your child, who loves colors, “lift the flap” books, naming shapes, building blocks, throwing and catching the ball, pointing out the leaves on the ground, the clouds, stars and moon in the sky, that she will one day not be able to see those things any more???How do you help her communicate what she is seeing (or not seeing) when she is delayed in her speech development and can’t effectively communicate? How do you explain to strangers in the grocery that when she walks over and pushes their child that it’s not her being mean, but something that she doesn’t have control over, and that what appears to be violence is simply her way of saying “Hello”. How will I know when her eye sight begins to diminish? It will be a gradual thing that will start with her peripheral vision and slowly “close in” until she is completely blind. How do you keep your heart from hurting so much? Every time I look at my girl, or she looks at me and smiles, the hurt in my heart squeezes a bit more.  How many times over the past 3 weeks since we received this news has my heart cried out to the Lord “ Take my eyes Lord!!!! Not hers!!! Let her see the sky, and the ladybugs! Let her see the flowers she loves to smell, and see (not just feel) the rain she loves on her face! Take my kidneys Lord, not hers! Let her thrive in life, not being held back by anything!!”? How many sleepless nights have occurred and how many minutes have passed where I have watched her sleep? How many times have I watched her enjoy life and felt my heart burst with the most amazing love for her? She is our miracle, prayed into this world by our family and friends. A miracle that was prayed over as she was growing in my tummy.  The prayers for her have always been, “Lord, let her life reflect, honor and glorify you. May she be a testimony of your faithfulness”. 

So...where do we go from here? WE PRAY!!

a- We pray and ask God for a miracle! We have seen him do things in the past, and we know He can do it now. We lost 3 babies before He gave us Abby, and now we have 2 little ones! God is so good! Pray that she is completely healed! If not completely healed, that she is just a carrier and not diagnosed with the disease. Pray as well that baby David doesn’t have it either. 

b- Pray that God spares her eyes and allows her to keep her vision (even as a carrier) and that if new kidneys are needed that when the time comes we will find the perfect match. 

c-Please pray that as we move, we find a place that is within our budget, but is still close to her doctors and our family as we need the support right now. In the silicon Valley it is hard to find anything reasonable. But, we need a place that has a lawn area around it as playing outdoors is crucial for her sensory processing issues, and an apartment would not fit into that category. 

d- Pray that we can find a way to keep her in her current special needs preschool as a change right now in her school setting could be beyond difficult for her, but is looking like our only option as we will be moving out of the district. Nothing is available in Saratoga right now to rent :(

e-Pray that God would provide financially as our doctors bills are beginning to accumulate. As much as I want to be a stay at home mommy that may not be possible. We have great insurance but we all know we still have to pay something right ? :) Praise God for my piano students and for my Crazy wrap business which are going to help cover some of the bills. God is always faithful, all the time and has always provided, so we know beyond a shadow of a doubt that He has this covered :)

f- Pray that God gives Clay and I discernment as we make some very difficult decisions over the next few weeks and months. That we would both find rest as there are a million things happening in our lives and my brain never turns off. 

We love and appreciate all of you so much and covet your prayers and your support during this time. This upcoming week is going to be crucial for us as we discover more about our girl and what exactly her diagnosis is. I know this has been a long blog but there is much to be shared, told and prayed for. Thank you for taking the time to read, pray, and praise with us. If you want to know more about Joubert Syndrome, please check out the links below. The information so so difficult to read without weeping, but again, we serve a very faithful and capable God!

Lots of love to each of you....Lotte

http://www.medscape.com/viewarticle/762051_4

http://www.jsrdf.org/PDF/Joubert_Syndrome_Fact_Sheet_06-03-13.pdf

Reality Check

You know, reality is not something that is always easy to deal with. So many times in life, reality can be harsh, difficult, intense, painful and even damaging to our spirits and can leave an imprint on our mind. But, when all is said and done, reality is still a necessity in life. Facing reality is a necessity, cause no matter how much we try to run from it, try to escape it, forget about it...it is still there.

Tonight, I went to visit my granny. She just turned 96 years old on Monday. We call her the energizer bunny, cause whenever she has a set back, or physical challenge that looks like it could take her from us, she bounces back. It seems though that, the energizer bunny is starting to slow down. We know this kind of things happens all the time to elderly people, and to some not so elderly people. I just was in a denial phase that it would ever happen to my granny. That slowing down is not an easy thing to watch, nor is it something that I personally enjoy being a part of. Especially, when it affects those whom I love the most.  Tonight I sat by my granny’s bed. She went to the hospital almost 2 weeks ago, after having seizures. They finally released her and moved her to a skilled nursing facility which is adjacent to her current apartment living location. They were hoping to get her back into her apartment so she could get back to life, but it seems she just doesn’t have the strength. I sat by her bed tonight and watched her fidget, trying get comfortable, mumbling her words, repeatedly touching her face. She briefly opened her eyes and then closed them again. She barely mumbled the word “water” for her parched throat and mouth. But it was still a word I could hear. It stinks that this amazing woman, with so much knowledge, wisdom, and passion for life is lying in a bed, without the ability to take care of her self, without the ability to communicate and really even function. Reality check-watching someone suffer is one of the hardest things we will ever have to do. 

Tonight, I sang to my granny. I sang her favorite hymns, and Christmas carols. I even tried O Tannenbaum (O Christmas tree) in German. Botched a few words,but I don’t think she minded it at all. I watched as her eyes fluttered, and as she struggled to move. I watched as she perked up when she heard my cousin Emily’s voice on the phone. This woman, who used to dance across the dance floor with my grandpa, who made beautiful things come out of her sewing room, who thought that wallpaper with brown flowers on it was beautiful (cause it only cause $1.00 per roll), who made it a point to be at all of my piano recitals, who encouraged me in my music on a regular basis, is laying in a bed, and struggling to hold on to life. I couldn’t help but be reminded of the song “We Shall Behold Him”. It is an incredible song, with wonderful truth in it’s words. But, I think my favorite line in it is “We shall behold Him, then face to face”. Reality check- my granny is going to get that face to face meeting with Jesus soon. She will get to see His face and her faith will become sight. I like to think that she will waltz through those pearly gates with grandpa at her side, and then she will stop and give my Aunt Lotte a big hug and then stop and give my 3 babies (whom I never got to meet) kisses from me, along with all the other babies that my sister, and cousins and I never got to meet due to miscarriages.  She will no longer struggle to walk, chew her food, to hold her head up or to function. She will be in a new body, with no struggles, no pain....she will be free. She will be free to exist, and free from any earthly challenge or struggle. Reality check- the life in heaven is far better than it is here, and why would I want to keep her here to suffer the way she is.  There is a part of me that is jealous. Jealous of the freedom she will soon experience, but jealous that she is going to get to see the face that we as Christians dream of. The world has tried their hand at describing Him, in making him real to us, but the world may have tried to describe him, represent him etc. but nothing will be able to compare to the truth of Jesus when we will see him, face to face.

I grieve for my family, especially my mom. We mom’s and daughters have incredibly special relationships, and I know that over the past 15 years my mom has gone from taking care my grandpa, to taking care of my Aunt Lotte who died of Ovarian Cancer at the age of 53, to having to not only take care of my granny as she has gotten older, but has also helped my granny in dealing with the death of her husband, and the death of her daughter. Over the past 15 years mom and granny have developed something special. Mom has gone over to visit granny almost every single Wed since Granny and Bob (granny’s husband) got married, and in their visits she reads to them, tidies up their apt. and helps them sort the mail, visits, makes sure that Granny’s clothes are holding up and don’t have any holes in them. She even makes sure that granny has enough chocolate boost so that she can have her chocolate fix during the day. OH! And, granny is a huge fan of Marzipan, and she always has at least 1 or more boxes in the cupboard. Every Wed. mom takes 3 pieces out of the box, one for granny, mom and Bob.  She handles granny’s personal issues and is in constant communication with the nurses about what the next best steps are for my granny. Reality Check- when I grow up, I want to be like my mom. And, if I ever have to take care of my mom when she is in her 90’s, I pray that I can do it with as much grace, graciousness, patience and love as my mom.  

So, now I sit here and it’s almost 10pm, and I am so tired, but, my heart aches and feels weighed down by a truth and the hurt. Soon, I will have only my memories to think about when it comes to my granny. I won’t be able to ask her questions and show her how big my kids are getting or, what they are capable of doing now. I won’t get to hear her do her imitation of a cat meowing (which is scarily like the real thing). I won’t get to tell her I love her, or feel her wrinkly skins against my cheek. I won’t be able to look down at her thin and frail hands and remember what wonderful things they have done for so many people. For now, I will simply have my memories. Memories that are priceless, precious and are my personal precious treasures. Reality check-we don’t know the number of our moments, but the moments we are given are completely and totally ours, and the most incredible gift from the Lord. As my Aunt Lotte would say “Savor the moments”, and tonight, that is what did and I intend to continue to do.

I have often heard the phrase “Life is fragile, handle with prayer”. We all know that this is a take off of “item is fragile, handle with care”. I sit hear at my dining room table, reading through the events of my friends lives on facebook, and at this moment I am quite honestly overcome with grief. A 30 year old friend has just suffered a stroke, they found a blood clot in her brain, so she is in surgery.  Another friend of mine’s dad (who is in his late 80‘s) is in open heart surgery to replace a valve, another friend of mine’s friend just lost their baby shortly after she was born and I could go on and on. I think of these mommies and daddies who are blessed with a child, and then (whether as a baby or an adult) certain trials begin to overwhelm and flood their lives. It can start with a simple diagnosis, or start with a major incident. In any case, their lives are never the same. Our lives are never the same. My life is never the same. 

Many people know our story, while others don’t. My little Abigail Faith (3 years old) and my baby David (7months old) are my two miracles. Not a day goes by that I am not reminded of God’s faithfulness. You see, I lost 3 babies before I ever had my children. They were 3 babies (that for whatever reason) God wanted with Him in heaven. I can remember after every miscarriage crying, sobbing and literally not being able to function for a while due to the amount of grief. Many people said things like “Oh, you are still so  young! You can still have another one”. One person even said that I had had an abortion because I had a DNC after we knew the baby had died. So many times I would look at these people and think “you have no idea what I am going through”. I can remember coming home after family events, or church events and looking at pet ads on Craigslist. I was even known for going into pet shops to look at pets. “Why” you might ask? Because my arms ached! They ached to hold my babies that I had lost, and they ached to hold the children that I hoped God had for me. They simply ached to be filled. If you have never gone through a loss of a child or a miscarriage you are blessed and I am grateful for the mercy God has shown you. If you have, then I am sure some of this is echoing your words and thoughts and may sound all too familiar.  

We lost our 1st baby the weekend of our 1st wedding anniversary. We lost our 2nd baby the weekend of our 2nd Anniversary and we lost our 3rd baby the week after Thanksgiving. What were supposed to be incredible and memorable celebrations instead, became a time of grief, sorrow, despair and even anger. We really don’t know what God is doing sometimes as much as we would like answers. I can’t begin to tell you how many times I would drive around aimlessly, trying to figure out what God was doing. And even though I knew He was there, listening and that He would eventually respond, I kept hearing silence. I am not sure what’s worse, silence by the other person in a conversation or them yelling in your ear. I am sure it depends on the situation, but for me , I simply wanted answers, and bottom line...an explanation!! “God, you know how much I want to be a mom, and want to have children, so WHY WHY WHY do you keep allowing the ones I conceived die”. There was still those moments of silence until one day it dawned on me, and it was in a moment of silence. God whispered. Not a whisper that I could literally hear, but a whisper for me. He said, “”Be Still”. Be still???? Be Still?? BE STILL???? REALLY??? Could He give me a better answer than that????Sure He could have, but He didn’t. Why? I honestly (at that moment) couldn’t tell you why. But here I am 3 years later with my answer to why He told me to “Be Still”. You see God doesn’t waste a moment of our lives. He doesn’t waste an event, a heartache, a success, a dream come true, a dream lost. He just doesn’t waste a bit of it. He reminded me of that by telling me to “be still”. You see, it’s that “be still” that is hard in our every busy and busseling world. But if you complete the verse it says “Be still and KNOW that I am God”. See, it’s not until you complete it that it can really have an even deeper meaning. I could have just been still and grieved and cried my eyes out all the time and questioned God during my miscarriages, but if I had not completed what the verse said, then my faith would not have grown, I would not have grown, and I would have missed out on what God had for me, and for what He wanted to teach me. 

To some my thoughts would seem harsh, cruel or even thoughtless, but here is a reality that must be acknowledged. If God hadn’t allowed my 3 babies to be taken into Heaven with Him, I would never have my Abby or my baby David. It’s when I see my children sitting in the back seat laughing together, or hear my daughter pray at night before she goes to bed, or feel my son’s very drooly kisses on my cheek that I am reminded by God’s ever the same voice saying “.... KNOW that I am God”. It seems that my children remind me of God’s unconditional love, faithfulness, and mercy to me. Because of the losses, I cherish the treasures even more. 

So as I read these articles or updates about loved ones of parents or children, I travel back into a time of remembering what happened to my unborn children, and what was happening to me as a parent losing a child, and I weep with those who weep and celebrate with those who have reason to celebrate. See, God is still in the middle of it weaving the moments of the day into the story of your life, your history, your legacy.  You never know what is going to happen down the road and how today is going to impact your tomorrows, but God does and His is the ever perfect plan.