Thursday, December 29, 2011
And then I tossed and turned... until 3 am.
I was bothered and I couldn't quite figure out why. After wrestling with thoughts, I realized exactly what bothered me about my Mega To Do List.
The whole time that we were waiting to hear if Xander had brain tumors or not, my priorities were different. It is no secret that I struggle with perfection.
I've said it before. Really, I have struggled with perfection my entire life.
My four children make consistent perfection pretty far out of reach, but there are times that I really convince myself that if I just work harder, faster, more that I can reach it.
And I have in the past. Except, perfection can't be accomplished in all the areas of my life at the same time without causing me to teeter on the edge of a mental breakdown on my part. It can't be maintained long term with serious repercussions to the relationships in my life.
People matter more than things.
When we were waiting to hear about Xander, I never pushed the children away to complete all the laundry in our home. Let's face it, even if I do get it all done and put away, what happens at the next blow out diaper? Or bathtime? Or even the next morning when we wake up? We make more.
Why didn't I push the children away to finish the laundry? Because I was terrified that our life was going to change in one phone call. I wanted to soak up every single second of each child.
Now that we have good news, that desire to soak up all I can of my children shouldn't disappear. This should be a lesson that I carry with me for the rest of my life.
No matter what, my children are growing.. Their childhood is disappearing right before my very eyes. In 20 years, do I want to remember my house was perfect, my laundry hamper had nothing in it for a few short hours and my to do list was always completed?
Or do I want to remember the feel of Solomon's little chubby arms wrapped around my neck? Do I want to remember Xander laying on the floor under a ceiling fan for close to an hour? Do I want to remember how Lainey looks at the world with an optimism that is hard to find these days? Do I want to remember having conversations with Julianne about our faith?
Yes, I want all of that.
So while I cannot completely ignore the responsibilities of keeping a home, it will not remain an idol in my life. I refuse to let it rob the joy of raising four beautiful, smart, loving children.
So Mr. Mega To Do List, you can taunt me from my unorganized desk. I'm going to make memories.
Wednesday, December 28, 2011
We were blindsided that day by a caring and well meaning doctor. And ever since life has not been the same.
Then we took an unexpected path and to be honest, moving Xander back to formula only felt like a huge boulder that I had to carry... when I was already in survival mode and barely keeping my head above water.
But God has been faithful and extended heaps of grace on us during this time.
Yesterday, we had the sedated MRI done for Xander. It took a ton of arranging between Brandon and I and honestly the whole procedure was a miserable experience for both Xander and I. It was so bad, I will be writing a strongly worded letter to the hospital during naptime today.
After I convinced the nurse that YES, I had a right to get a copy of the MRI to carry to our neurologist (sigh), we finally left and picked up the other three kiddos. When we arrived home all the children went to nap, while I ate and then collapsed for a 30 minute power nap.
Then we loaded everyone back up to go pick up Brandon and drop off the MRI to our neurologist.
Brandon sweet talked the office staff and we were told that Dr. T would be calling us with results between 5:30 and 7:30 last night.
We ran one more errand and then went home to wait for our call.
While I was clock watching, I remember having the most amazing peace wash over me as I flitted around various websites wasting time.
The phone rang, and it was Dr T! He kept his word and was calling with results. And he told us the most beautiful words:
"Xander has no tumors. He has no unidentified bright spots. His scan was unremarkable. The radiologist noted one anomaly... a small abnormal blood vessel, but I cannot see it on my computer, which may be a resolution issue since the radiology department has much better equipment compared to me. I do not feel like he has neurofibromatosis, but I cannot say with certainty that he does not. I see no confirmations though. The next step would be to come retrieve this disk, and take it to genetics."
We asked about the blood vessel and he said that since he cannot see it, he has no medical opinion of it and it may just be an incidental finding. That he just shared the radiologist's findings with us and perhaps that would be a puzzle piece for the geneticist to sort out.
At this point, we do not need to follow up with Dr. T.
We thanked him for his care.. and having mercy on us and getting back to us so quickly! We said we'd pick up the disk this week. And wished him a Happy New Year before we hung up.
And then Brandon and I danced and hugged and jumped around like a bunch of 4 year olds.
Just keeping it real, folks!
Goodbye, weight on our shoulders!
Goodbye, survival mode!
Hello, best sleep we've had in almost a month! We crashed hard.
We still do not have a definite "Xander has x" or "Xander just has tons of cafe au laits." But, we got pretty much the best news we could have hoped for.
And once again, we are thankful for the Lord's goodness!
Monday, December 26, 2011
The scan is expected to take 30-60 minutes and then after he drinks something in recovery he can come home. Handy Manny is going on the field trip too!
Prayers are appreciated. Our day will start around 5:30 am. I'm hoping to hear from our neurologist sometime tomorrow afternoon.
I now have a headcold too. (Guess who got sneezed on repeatedly yesterday? Raises hand!) Hopefully I feel better soon!
Sunday, December 25, 2011
Day 4: (Christmas Day) So far he has only had 2 cups. We are praying that this isn't a downward trend. :( We are hoping that maybe we can get him to drink when he wakes during the night. I spent much of today fighting back tears and a lump in my throat. I know that the extra hormones aren't helping a bit. I think I got a little ahead of myself thinking about the future. For example: it is almost birthday season here. If we are still doing formula only, he will not be able to have birthday cake. Simple things like going out to dinner to celebrate things will be a cruel reminder of what Xander cannot have. I don't know-- maybe I'm just overtired and overstimulated with the holiday. It was just a very hard day for me. I had a little cry and now I feel a little better. Still totally overwhelmed with the unknown but a little better. I am very thankful that he has had no diarrhea and no diaper rash.
We have some new prayer requests today:
1. That Xander drinks at least 24 ounces every day.
2. Tuesday we are to call the allergist with the results of the first 5 days. Pray that we can convey our concerns in a way that is easily understood.
3. Xander has a small case of the sniffles. This could cause the MRI to be cancelled since he has to be sedated. Pray that we get clear answers so that we can prepare ourselves accordingly. We so badly want to know if there is anything found on the scan but we also want his scan to be done safely.
I pray you had an enjoyable day celebrating our Savior's birth. We sure did.
Saturday, December 24, 2011
Day 1: Normally he would wake with a terrible diaper. This time it was different. Not completely normal but much different than what we were used to. He drank 4 cups of his formula today-- 2 Tropical and 2 Chocolate. This evening he had a dirty diaper that was NORMAL! I seriously had to check which son I was changing! Overall today, he wasn't doing his blood curdling scream. He used more words instead of screaming. He looks more relaxed and didn't fight me when I changed his diapers. He actually didn't even ask for food except for when he saw Solomon munching on a pretzel. Part of me wonders if he already realizes that food was hurting him. He only had 2 dirty diapers total today which is a marked difference from 3-7.
Day 2: When he woke up he was only wet. This is a marked change. He only drank 3 cups of his formula today, but I'm not supposed to worry because that is enough to maintain his weight. No blood curdling screaming. He did fuss quite a bit today but I think that is related to him not understanding what is going on. He sat at the table today and colored but he now refuses to sit in his chair. (We took the front bar and crotch bars off of the highchair to make it more like a toddler chair.) I guess he figures if he isn't eating he doesn't need that chair. Before all this though, he was starting to want to sit in the other chairs like his big sisters so maybe I'm reading too much into that. Only one dirty diaper today and not diarrhea. His tummy looks less bloated too. He did not ask to eat at all.
We are not asking him to sit at the table while everyone eats. In fact, I've been taking him in another room and allowing him to watch Handy Manny while he drinks his cup. Making him sit at the table while others eat just seems cruel. By the time Handy Manny is over the children are usually done eating, so he goes to play and I eat my dinner in another room away from him. Again, we are struggling with a lack of normalcy. Mealtimes in the past have been our reconnection times. We used to all sit together and talk about our days.
The formula smells very nasty and is doing a number on my morning/all day sickness. We are going to buy a mixing pitcher and have Brandon mix it at night so that I can just pour cups.
We have a few prayer requests:
1. Neocate Junior costs about $35 a can. That lasts almost two days when he doesn't take the four cups every day. Quick math says that it will be at least $525 a month. This is more than we budget for groceries, or our van payment. Seriously, OUCH! Our doctor is working on having our insurance cover it. Other families have warned us that because he is taking it by mouth, not by tube, that they may reject the claim. We are praying for the claim to go through without a hitch. Our insurance has pleasantly surprised us in the past. We are hoping for that to be the case here too. In the meantime, our doctor gave us samples while she is trying to process our insurance.
2. Xander's MRI appointment has been moved up a little. He was the third case on Tuesday the 27th and one cancelled so we have to be there at 8 am instead of 9. I'll be by myself since Brandon is in training for his new company. Please pray for us. I don't tend to do too well waiting, even when Brandon is with me. I've been warned he may be back for up to an hour. Also a friend of ours is keeping the other three. Please pray that they are well behaved and mind their manners. Also pray I get to where I'm going on time and without getting lost. I'll be living in my van that day between taking Brandon to work, dropping the 3 off and then going across the river to Xander's procedure, then taking the discs to the doctor's office, then picking up the kids and then picking up Brandon.
3. Please pray that we are able to enjoy Christmas. I don't want all of this to eclipse the celebration of Jesus' birth. God is our strength and rock and if anything this trial should magnify Him, not minimize Him.
I pray you are enjoying your Christmas Eve with your family as well.
Wednesday, December 21, 2011
So we did our appointment with Dr. P. He is an amazing health care provider and we greatly respect him. He "gets" the dynamic of our family size. He has 6 children. He "gets" our homeschooling. His wife homeschools their children. He is amazingly easy to talk to and we've never felt judged.
We sort of vented this morning about the merry go round of appointments we've been through. He was very empathetic and said to feel free to call him if there is anything that he can do. He also told us he was praying for us. We greatly appreciated that.
Then we went ate lunch and went to the allergists office. It was a nightmare. Xander screamed the entire time. Dr. G asked a ton of questions to get a thorough medical history and try to fit puzzle pieces together.
We did some skin testing. Xander raged the entire 20 minutes between the testing and the doctor checking the results. He was not supposed to scratch at his back and this drove him absolutely insane. And after all of that, nothing came back. This was incredibly frustrating for us.
Dr. G said that our next step would be to put Xander on a hypoallergenic formula. One that is elemental, meaning that the protein is already broken down into amino acids. She thinks that it is more likely to be an intolerance to the food proteins that we are seeing than true food allergies.
She said that Xander seemed highly agitated from the very beginning of the appointment (before the skin testing) and she thinks that it may be that he is in pain and too young to fully express it to us.
So that is our plan right now. For now, Xander is only taking Neocate Junior-- no table food. Three 8 oz cups of it a day is enough to maintain his current weight and 4 will be enough calories to grow. We will be speaking with Dr. G soon to tell her how his symptoms change if they change at all. If they do change for the better, she will place a prescription through our insurance.
I'm really sad about this. I know that Xander has no idea why he can't have his beloved pretzels that he begged for tonight. I just wish everything didn't have to be so hard for him and I could take his place. I would in about 2 seconds flat. I couldn't even bring myself to eat my dinner until he had gone to bed.
A friend of mine said it so well when she said I had to mourn this. Normalcy as we know it doesn't exist. Almost all of our "free time" is spent in doctors offices. And now something that was so basic-- feeding my child, has changed drastically. I know we will get through this, but this is a road that was completely unexpected...
Monday, December 19, 2011
Sunday, December 18, 2011
However, I've been searching the internet and reading until my eyes are nearly crossed!
Imagine my relief (delight? deliriousness?), when I ran across this:
Legius Syndrome Often Mistaken for Neurofibromatosis Type 1
Did you read it? Did you see this part?
"Legius syndrome typically follows a more benign course and clinical management should primarily focus on developmental and speech delays, learning disabilities, and attention deficit and hyperactivity disorder," Dr. Messiaen said.
I'm printing this article to add to the notebook we take to our appointments.
Legius Syndrome and Neurofibromatosis are two different gene mutations. It is common to have cafe au lait spots as your only physical sign of Legius Syndrome.
Oh please, Lord, let this be!!!!
Friday, December 16, 2011
Thursday, December 15, 2011
It was stressful. The doctor did not reassure us as I hoped.
I'm not 100% sure what Brandon expected when we went but I know what I hoped to hear.
I wanted to be told that our gastroenterologist was overreacting.
I wanted to be told that Xander's birthmarks were not cafe au laits.
I wanted to hear "Nothing concerning here, Mom. Hope you never need my services again."
I didn't hear any of that. I know.. I was in denial.
Instead, our doctor raised his eyebrows and wrote alot as Brandon and I exchanged worried glances at each other. He said he was very concerned but that it wasn't anything to send us through the ER for. (The office is attached to a hospital- if you go throught the ER or are admitted you can have procedures done faster.)
Instead we got more referrals. He is concerned about Xander. He did reassure us that most patients with neurofibromatosis do well though.
Instead, he ordered an MRI and an EEG. He referred us to a pediatric ophthalmologist to have a full exam and an exam with a slit lamp to check for lische nodules. And we got a referral to genetics.
Basically, we are gathering information and then a geneticist will put together pieces. There are a few other conditions that the cafe au lait birthmarks could point to.
He told us that this is going to be a multi-disciplinary, multi-specialty process. He warned us that this may be a long road. He did tell us that he thinks Xander's tummy troubles are completely unrelated. That was reassuring. He urged us to be mindful of our stress level and to take care of ourselves and our marriage. He also reminded us to treat Xander just the same.
Brandon and I had done enough research that we pretty much expected all he said except for the EEG. When we got home, I walked to our bedroom and laid face down on my bed crying. I so badly wanted to be told that there was nothing concerning.
We have no idea how this story will end. We are still hoping for the best. But we'll do whatever he needs.
Now, we are waiting to hear when the MRI and EEG are scheduled. Please pray they are scheduled soon. We've already met our maximum out of pocket for our whole family (this plan started June 1st!) with Brandon's insurance through his current employer, but we will only have coverage through his current company until December 31st. Either way, we know that God is the ultimate provider!!
We were blessed with an appointment with the pediatric ophthalmologist for this afternoon. What a blessing that we only had to wait 2 days.
Wednesday, December 14, 2011
We've had something or multiple somethings to do every day for over a week, on top of parenting our crew and having fun with Auntie Karon and trying to keep my house from getting too trashed. For a homebody like me, that kind of schedule is a big deal. Add in the medical stress and drama and we not only ran a marathon, we ran it in the mountains.
I have alot of posts in the works, but right now, I just need to recover.
The neurologist yesterday said this would be a long term thing with multiple medical appointments and tests. He encouraged us to take care of ourselves and make sure we don't run ourselves too low. I need to heed that advice.
Limping to the recovery station,
Monday, December 12, 2011
Today over lunch, Brandon and I talked about our journey these past few years. God's fingerprints are EVERYWHERE as we look back.
The QV (Quick Version) :
In 2007, Brandon's current company, we'll call it T, announced that they were opening a call center in our hometown. Brandon did similar work for a Company we'll call B, and started some research. We found out that the pay at T was about the same amount as Brandon's base salary, but there would be no commission. Commission pretty much doubled his salary.
So he stayed... and was laid off from B.
Brandon worked for another company in sales for a bit and did very well. But his pay was completely commission. He knew that it most likely wouldn't be sustainable long term.
So, he put in for Company T.
He was hired in July of 2007. He was very successful and eventually we relocated to Virginia to convert a call center here.
I came kicking and screaming. *blush*
During our move here, his company added an adoption benefit.
We started the adoption process.
We started homeschooling due to issues that we encountered here.
And we all know how quickly our Xander joined our family.
I was lonely and really struggled with making new friends. I threw myself into an online moms group.
Shortly after, I found out I was expecting. This was quite a shocker given our infertility struggles.
We moved to a larger apartment.
We struggled to find a church here. We tried over TWENTY churches in 2.5 years.
We visited our church and I *knew* it was home. Brandon and I prayed over it for a few weeks.
We knew we wanted to live closer to our church and since our lease was coming up, we started looking.
We are in a more rural area and there are only a few apartment complexes to choose from and they are much smaller than our large apartment. So we knew we needed to find a house to rent.
We found a house and we have the BEST neighbors we could ask for and we are 9 miles from church.
The church has been balm to our soul. The people are amazing and I've met soooooo many new people.
Shortly after we moved here, I felt settled and told Brandon I couldn't imagine living anywhere else.
Brandon started casually applying for jobs that interested him. One was for a position out of state. It made my stomach hurt to think about relocating again. This was HOME!
This week, Brandon asked me to leave my moms group. And that feels okay because I have such sweet fellowship with my local friends. Some of the women from that group will be Lifers. (Lifetime friends that you are friends with forever.)
Brandon accepted a local position in a different industry and took it. He only has 3.5 shifts left at T. This new company isn't in our home state of Georgia. His commute will be less than half of what it has been. The benefits are amazing and Brandon will have room to grow.
And as I look back and see all of this, I know that we are directly in the center of God's will for our lives. Oh the peace that brings to me!!!!
A new chapter is about to begin... I'm excited to see what the future holds for us.
PS: Xander did well with the endoscopy. That will be tomorow's post. Tomorrow, he has an appointment with a Pediatric Neurologist to discuss his cafe au lait birthmarks. Prayers are appreciated. :)
Saturday, December 10, 2011
Seriously I do! A whole house full. Including Brandon and I.
And oh boy do we have lots of opportunities to learn how to apologize!
I apologize to my children... often. It keeps me humble.
In our house, we apologize by saying what we did wrong. We confess it *all*. We don't cherry pick a the easiest thing to apologize for.
We say how truly sorry we are.
We avoid the word BUT.
For example: I'm truly sorry I yelled at you, but you are annoying!
Yeah.. that doesn't fly.
"But" has a way of undoing everything in front of it.
"I'm so sorry that I didn't discuss this with you when I found out. But you always get short with me when I do discuss this topic with you."
See that shift of blame?
Here's another thing. We don't blame the Enemy.
"I'm sorry you were hurt, Satan caused it. "
Here at the Bee House, we believe in Free Will. Satan may have tempted you, but YOU chose your path or action.
No matter how poorly one apologizes, forgiveness is your responsibility. It doesn't mean that you weren't wronged. It doesn't mean that they apologized the right way. Maybe the person isn't even repentant. But YOUR burden is forgiving. Some times it take time. Sometimes it takes a long, long time. But leave it at the foot of the Cross over and over as many times as you need to. One day you'll realize it stayed there.
A Humble Sinner,
PS: For those that worry, nothing in my home sparked this. Brandon and I are fine and our children are happy little clams. Julianne and Lainey have Christmas programs tomorrow. Something came up among a group of friends and I started thinking about whether or not I'm teaching my children how to apologize correctly. Just thought I'd share. ;)
Friday, December 9, 2011
Thursday, December 8, 2011
So he told us nothing about Xander. What he did tell us was alot of misinformation about Neurofibromatosis.
He told us genetic testing was completely accurate. It is not. If you test positive, then YES you have NF. You can falsely test negative and still have NF. It has to do with where the gene mutation is. So no, the test is NOT completely accurate.
He told us that 6 criteria must be met in order to be diagnosed with neurofibromatosis. And that is false as well.
It was just so ridiculous. But now we know why we had a feeling we should keep both appointments. If it is worth anything, the neurosurgeon today thinks highly of our neurologist we will see on Tuesday.
$27 dollar lesson and a missed naptime times two.
Wednesday, December 7, 2011
Sunday, December 4, 2011
Not only am I bogged down in my thoughts about Xander's upcoming appointments and procedures but Annalise's first birthday is coming up.
In a recent prayer/cryfest I said that all I desire is to is to be found faithful.
That is it!
No matter what this world throws at me... I desire to be found faithful.
No matter how hard life gets... I desire to be found faithful.
No matter how scary things look... I desire to be found faithful.
No matter what I'm asked to do or go... I desire to be found faithful.
Would I like a life without trials? I don't think so. Most of my faith building moments have come out of trials.
Am I begging for a trial? No. I think there will be enough in this world. No need to heap on more!
I have been reminded over and over by fellow believers that God hasn't left us. He loves Xander more than I do.. even though that is hard for me to fathom as his mama! No matter what the tests and procedures say, God is still good and faithful. He still is the Great I Am.
Of course, we are hoping with all of our might that this whole thing can be explained away without having to walk the Neurofibromatosis road. We are still praying for that.
But, if we are sent down this path.. all I desire is to be found faithful.
One day, when I'm called to Glory, I desire to be told, "Well done, good and faithful servant." (Matthew 25:23)
Praying I'm Faithful,
Friday, December 2, 2011
We prayed and looked over the list of pediatric neurologists covered by our insurance and one caught our eye. We decided that we would call that office first thing this morning. But if we couldn't get a decent appointment we'd call them all, if it came to that and/or call our family practitioner to ask him to refer us professionally since that often gets you a closer appointment.
Last night I emailed a very special friend of mine, Maureen, and asked her to look over the list for us. She is a nurse practitioner and a mother of 5 living children (expecting #6 soon!) She gets it. She told us she had heard good things about the same doctor that caught our eyes earlier.
I slept pretty good once I fell asleep. And this morning we called that doctor's office. Brandon asked what their first available appointment was, and the gentleman said "About 4 weeks."
Brandon said we'd take it. (Much sooner than February!) He took our information and Brandon explained our situation. I prayed for favor with this man, and he put Brandon on hold to "double check."
He came back with an appointment in 11 days, on December the 13th. Much sooner than 4 weeks. Brandon thanked him profusely and they hung up.
We sat on our bed amazed at what just happened. I whispered, "Only God, Brandon.." and at that very moment we realized the light was flashing on our house phone, indicating that we had a voicemail.
Brandon called the voicemail and heard wonderful news.
An office he called yesterday was calling to notify us that they had reserved a time for Xander to be seen on December the 8th!
December the 8th, God? Now you are just showing off. *chuckle*
We quickly called back and let them know that we absolutely wanted that appointment and double checked that they do accept our insurance (they aren't on the list that I printed last night) and they do accept it.
So now we hold not only ONE appointment in the next 12 days, but TWO. Only God!
Brandon and I discussed which one to keep and for now we are keeping both. We may need a second opinion and since these appointments were both divinely arranged, we'd hate to give up one and then truly have to wait until February. Of course, if things are satisfactory on the 8th, we will call promptly and cancel the other one, possibly allowing another desperate family to have their child seen as soon as possible.
We also witnessed another show off moment. Two days ago, Brandon took the first available endoscopy procedure date and time.
It could be a coincidence that I asked my aunt to come in December this year instead of November, but I don't believe in coincidences.
She arrives on the 9th and is planning to drive back to Georgia the 13th.
Since my aunt will also be here on the 12th, we do not need to arrange an additional sitter or be placed in a position to decide which parent stays home with the other three children.
We have braced ourselves that Xander will most probably have a sedated MRI scheduled at his neurology appointment on the 8th. Perhaps we can have both the endoscopy AND the MRI done at the same time on the 12th only requiring him to be sedated once.
Also, if we do need that second opinion with the second neurologist on the 13th, my aunt has said that she will extend her visit one more day, so the majority of our childcare will be covered.
We are hoping to have some coverage on the 8th so that Brandon and I can both attend the neurology appointment downtown, without taking all of the children into a hospital during flu season. Could you pray for that childcare need?
Now, I'm off to have my weekly date with Maureen. She comes over every Friday on her lunch break, since we moved down the street from her office. Another not a coincidence. ;)
Thursday, December 1, 2011
Our friends knew right away that things were not alright. I only managed to tell one or two without being overcome with tears and asking Brandon to speak for us.
Eventually I was able to go back and explain more clearly to those first few friends.
I came home exhausted. My eyes burned from crying and I had a pounding headache.
Brandon and I went to bed early (for us.)
This morning I woke up and quickly remembered the news from yesterday. I wanted to pull the covers over my head and hide for the entire day, but eventually managed to drag myself out of bed. I started our morning routine.
Brandon received a call from Dr. V's office saying that he didn't have a preference for a neurologist and that we could check with our insurance and see who was covered or we could go back to our family practitioner and see who he recommended.
Our insurance allows us to self refer. So we got out our list of covered doctors. We don't know of anyone that has used a neurologist here in Richmond, so we will have to trust that God will guide us to the right one. Brandon called the first one and explained our situation and was given an appointment date in February. We found this unacceptable and kept calling around.
Finally, one lady had mercy on us and said she would call us back with a date after Brandon explained that February is a really long time to wait and we were desperate for answers for our oldest son.
So we waited all afternoon for her to call back. That phone call hasn't come.
I packed all the children in the car and went on a mission to find Solomon some shoes because I just could not stand to be home waiting for the phone for another second.
I think the lady at Stride Rite thought I was insane. I felt paralyzed to make a decision and sent a picture of our choices to Brandon's cell phone via text wanting him to tell me what to pick already. Finally I just asked her which ones were available in his size and bought the first two that she listed.
I walked next door to see if they had black leggings at Gymboree for Julianne and the super perky sales associate told me that no, they have every color in the rainbow but not black. I mumbled thanks and walked out.
As I drove home, I missed the exit I needed, twice. "RECALCULATING!" my GPS shouted at me. My head was pounding and I cannot explain the relief that came over me as I pulled into our shared driveway. I practically ran into the house and locked the door behind me.
I changed the boys and put them down for a late nap and then went on the prowl trying to find my Imitrex so I can attempt to fight my migraine.
And here I sit on my bed, wearing mickey mouse pajamas, with a cold glass of sweet tea, trying to keep my mind from wandering to the unknown. I'm wrestling with thoughts of whether or not I should send Xander's birthmom a letter letting her know what is going on... or if that would only serve as torture for her as she waits for us to find out.
I'm desperate to reassure her that everything will be okay. That the family that promised to give him the life she felt she couldn't, is going to make this okay. But I can't. I'm a human mama, not a Supernatural Father.
Days like this make me want to crawl under a rock and hide. Hopefully we get a decent appointment date for Xander's neurology referral soon.
Wednesday, November 30, 2011
We were blindsided today. Today Xander had his pediatric gastroenterology appointment. I figured it would be a general intake appointment... you know.. give medical history, talk about symptoms and dietary habits. And then the doctor would order blood work and testing. So instead of dragging four children to a medical appointment to be crammed into a too small room, and possibly be distracting, I stayed home with Lainey, Julianne and Solomon.
His birthmom made an adoption plan for him instead of aborting him.
He survived his birth and withdrawal.
He was matched with parents that continue to push him instead of using his birth circumstances as excuses for him not to try his best.
He was spared from contracting Hepatitis C.
He has shown NO developmental delays.
God's hand in Xander's life is apparent. And I'm choosing to cling to that as we pray about the journey ahead.
Tuesday, November 29, 2011
I know a lot of people write to Santa this time of year, but I believe in You, not Santa. I've seen You do amazing things and I'm hoping for some extra Christmas cheer this year.
I'm super thankful for my children, but is there anyway that You could give us good news before Christmas? As I watch the days tick by, I've come to grips with the fact that most likely, we will not have a new blessing this year, but could we at least have some news about a match? Or maybe just a glimmer of something so we know that we are still on the right path?
We've continued to inquire about some children without committing ourselves to any one agency and we've not heard much back. I check my voicemail and email like a maniac and nearly had a panic attack when I realized that my cell phone rode in the car with Brandon to work today. And then I overheard a conversation today that was like a knife in my heart.
I love You and I want You to have the glory. In Your most precious Son's name, Amen.
Friday, November 25, 2011
Thursday, November 24, 2011
A- Annalise: She taught me that we are willing to jump whatever hoops it takes for our children. Even if it doesn't work out the way we hoped, Brandon and I jumped and were willing to continue. She opened our eyes to more special needs.
B- Brandon: I am super blessed with a loving husband that extends grace on a regular basis. He knows exactly how to keep me together and somewhat sane. ;)
C- Christ: Years later, I'm still astonished that Jesus Christ died for little ol' me.
D- DeLainey: The one who made me a Mama at nineteen years old. I wasn't sure I was able to be a mom-- or a single mom. But she gave me the strength to persevere a lot and made me realize how strong I could really be.
E- Egg Drop Soup: My old faithful, comfort food. Yum!
F- Friends: I have the best friends a girl could ask for. I'm blessed with old friends that I've reconnected with, long term friends and new friends.
G- Gloria Jean's Hazelnut Coffee: My favorite brew in our new Keurig. The appliance was supposed to be Brandon's new toy but we use it about equally.
H- Homeschooling: I am thankful everyday that homeschooling is legal in the United States. It has been a huge blessing witnessing my children learn and I'm thankful that they are getting a Christian education.
I- Internet: I have no idea what I would do without the internet. If I had to guess, I'd approximate that I google about 10 things a day. I use the internet to glean ideas, stay in touch and research tons of things.
J- Julianne: We ached for a baby together and finally our deepest desire was granted. The pregnancy was very rough and I spent several months on bedrest and many hours in various medical offices for the different specialists that helped keep us safe. She was worth it all.
K- (Auntie) Karon: Auntie Karon has played a major role in my life. She started out as my mother's best friend but over the years she has really become more of a mother to me. She is one of my best friends, one of my confidantes, and fills a grandmotherly role in my children's lives.
L- Life: I've had a few scares in the past that leave me always thankful for my life and good health.
M- MOMYS: Mothers of Many Young Siblings. These ladies are the sweetest, nicest group of women. They regularly remind me to put on my big girl panties and try again. I've gleaned such amazing answers to logistical problems from them and they are the ones that were my cheerleaders for nursing Solomon.
N- Natalie: Our new babysitter. We got a date night for the first time in... um... forever! We didn't scare her off with our four children and is willing to return. Score one for Ma and Pa!
O- Ovulation: It isn't a given in my life. 'nuff said!
P- Prayer: I'm thankful that I can pray no matter where I am. Sometimes I pray aloud, and sometimes I pray silently. Sometimes I pray a long prayer and sometimes I pray one word requests ("Help!") But God is always there.
Q- Quilts: I had a grand idea to use some of Brandon's old dress shirts to make quilts and my Auntie Karon made it happen. The children love snuggling under theirs and I love mine too.
R- Richmond: A place that tested my patience for quite sometime. But once I got past the rough spots, I fell in love. Right now I can't imagine living anywhere else. But I've also learned to never say never.
S- Solomon: Our laid back, observant "bonus" baby boy. He still prefers mama and is pretty stubborn and vocal about it. It's very funny coming from such a laid back fellow.
T- Tools: I used a power tool for the first time yesterday and I had no idea I'd love it as much as I did! Lookout world!
U- Umbrellas: Whoever thought that up, is a genius in my eyes. I hate getting rained on!
V- Vacation: We've been on three vacations in the last 12 months. We made amazing memories and enjoyed spending time together. 2012 has no vacations on the docket. :(
W- Women's Bible Study: I learn so much every time I go (even if I haven't read my assignment.. ahem!) I've gotten to know the women in my new church at a deeper level through our study.
X- Xander: My first son. My *very* busy toddler with the cheesiest smile I've ever seen. Our adoption that went so smoothly that there isn't a way to explain it, other than to say that God's fingerprints were all over the process.
Y- Yes ma'ams: There is very little that can make my heart melt like a well timed yes ma'am. Xander has finally gotten the hang of ma'ams-- everything was sir!
Z- Zany jokes: I think I'd heard every Laffy Taffy joke and Knock Knock joke out there. But I love the laughter that ensues. I vowed that my children would grow up with laughter in their home and so far, so good!
Thankful for Him,
Sunday, November 20, 2011
Lainey was still very sleepy. Her big blue eyes looked like Dopey. They crossed and went different directions and did all kind of silly things! The first thing she asked for was something to drink. (That apple didn't fall far from the ol' tree!)
She was in a good bit of pain, so it took a little while to get that under control and just like that, we wheeled her out of the hospital in a wheelchair and after a little drama got her into the van. She was very scared to put pressure on her legs at all and that caused a few alligator tears to roll out. The casting was also stretching out her hamstring muscles which wasn't exactly pleasant.
Thursday, November 17, 2011
She said that she would know within 2 days if it was going to work out for them and if it fell through she would call us.
And the phone hasn't rang.
So we have no news.
Honestly, we are thrilled for the little boy.
But we are sad.
Thanksgiving 2011 will look much different than we had planned. This Thanksgiving is Annalise's first Thanksgiving and we looked forward to celebrating with her. But we won't be able to.
We are trying our best to temper the sadness by reminding ourselves that we have much to be thankful for. I have four great children, an amazing husband, a warm cozy home. My husband is gainfully employed. We have the freedom to worship our amazing God. But in the quiet moments a lump rises in my throat as I walk past our empty baby swing, or our unused changing table.. and I realize that there is an empty spot in our family and in our hearts.
Some days the tears stream down my face freely.. other days I seem okay.
But we will make it through this too. Even in the sadness we are learning so much.
Tuesday, November 15, 2011
As usual, I'll share more when I am able.
I can tell you something else though. Brandon and I submitted our adoption profile for a little boy yesterday. It was a very hard day emotionally. But I don't think waiting longer would have made it any easier.
I found myself bargaining with God. Have you ever done that? I caught myself saying "Okay God, I see the way that You've presented this information to us, and after prayer, we feel like we are supposed to send our information in. But this time? When we are obedient to You.. errr...again... can You try really hard to make this work? Can You spare us more pain and brokenheartedness?"
I know alot of people don't admit to trying to bargain with God. But I made a commitment when I started this blog that what I am, is what you get. A learning human. And humans really don't like to hurt. We tend to not like pain and tend to do what we can to avoid it.
I immediately felt convicted for trying to bargain with God. And after a lot of prayer and tears, I changed my prayer. Instead I was saying "God, I feel You've shown us this little boy for a reason. I don't know if we are only meant to pray for him. Or if we are to ultimately become his parents. I know that most roads worth traveling are not easy. But we trust You. We love You. And we are so excited to see what You have for us."
And then peace swept over me.
I'll say it again. This is God's adoption. Sure we are the people filling out paperwork, networking, etc but ultimately God knows who is meant to be the next Bee. So we wait. And we hope.
Saturday, November 5, 2011
If you think of us, would you pray for us on Monday afternoon? I'll announce as soon as we have something to announce. :)
I'm so thankful for every one of you that pray for us even during times that I can share so little. It is truly appreciated.
I have much more to share but I need to get some pictures first. The Bees have been busy with service projects and we've done some rearranging to make our modest rental home work for our lifestyle. I still love our last floor plan so much more, but the location and the privacy of this home is what grabbed our attention.
I'll write more soon!
Monday, October 31, 2011
Some people make really quick decisions and make them well.
Some people go back and forth, analyzing every option over and over. Then they second guess their decision after they've made it-- even if it turns out well.
I'm both in different situations. Sometimes, I make those quick decisions and sometimes I mull things over, changing my mind back and forth. Sometimes I allow the indecision to stall things past when I have the capability of actually making a choice. Other times, I make a snap decision and it works out well.
Brandon leans more on the quick decisions that are made well. He is drawn to employment positions that require this. He loves fast paced work. And luckily for me, he loves fast paced homelife.. life with four is anything but slow. LOL!
Why am I sharing this you ask?
Well.. in my previous post I asked for you to pray for us as we prayed for direction. Brandon and I both seemed to be getting the same answer.
And honestly both of us having the answer so quickly, made us wonder if we were reacting in fear.
We have the opportunity to commit to one agency for a fee and become an "official" adoptive family for them. The fee is pretty significant to us but we trust this agency and the adoption coordinator. The adoption fees are within our adoption budget. Our homestudy is written far more open than the current adoptive families which means that our adoption profile would be shown often.
And yet we feel like we are being told to "Be Still."
I know, I know.. I scratched my head at that one too and so did Brandon.
I can't tell you how many times I've wondered "Is this fear talking, or You God?" I've asked God this question repeatedly. And yet, Be Still continues to be what we are supposed to be doing.
Honestly, we feel at peace with this decision. We are still eligible to adopt. But for now, we are attempting to listen to the message and savor life with our amazing four children and live in the moments.
Trust me, I know how bizarre this all sounds. When I started my blogging journey it was to document my life -- the good, the bad and the seemingly crazy.
Somehow we do crazy really well.
Friday, October 21, 2011
In Bee tradition, I danced right where I was.. which happened to be the carwash.
Got lots of funny looks, but I don't care.
I promised.. just as God promised Katie to the Musser family. ;)
Sunday, October 16, 2011
Sunday, October 9, 2011
Wednesday, October 5, 2011
Traveling to Lynchburg to visit friends meant that we happened to be in town for R's birthday! She had a tea party. I love this picture because it shows Julianne's REAL smile... not the fake grimace I get so often!
Tuesday, October 4, 2011
Friday, we headed out to pick up the U-haul truck and it started to rain on the way to our apartment. We had people coming to help us load up our place! I quickly asked the girls to pray that the rain would stop.
And it did.
Further down the road, I saw a tiny piece of a rainbow. It wasn't a huge beautiful arch but it was a tiny, tiny, fragment of a rainbow.
I smiled as I started thinking back to how amazingly God has provided for us during this journey.
Here are just a few of the ways that He has provided:
- We found our church right before this whole thing began. We'll be here 3 years this November. I do not find it to be a coincidence that our church was revealed to us right before this crazy ride.
- Other than our homestudy (that could still be used although we do have to pay for an update since we moved) and our travel expenses we lost very little of our adoption fund. We are thankful that God spared our tiny fund especially since almost all adoption fees are non-refundable.
- We "randomly" chose a Sunday School class when we visited this church the first time. They welcomed us with open arms and I don't think a week has gone by since that we haven't heard from someone in between church activities. These friends rejoiced with the news that we were matched. These brothers and sisters in Christ have battled in prayer for our situation when things went south. They've reached out to us. They've hugged me. They've cried with us. They've shared their own stories.
- One of our friends from our Sunday School class, helped me find my way to the Women's Bible Study. This has been amazing for me. I tearfully asked for prayer during our prayer request time one week and afterwards several women stopped by to introduce themselves and tell me their own adoption or fostering stories and promise to pray for us!
- For this move, several men and one couple from our Sunday School class blessed us with their time and packed our things into the moving truck. The next morning they came and unloaded the moving truck. It was speedy and efficient and done without a single complaint. Brandon and I are still in awe of how smoothly and quickly it happened!
- Our new neighbors are so friendly! Everyone has come to introduce themselves.
Each day does get a little easier. We've moved past disbelief. We don't understand why this happened, but we have accepted it. We are finding ourselves laughing and smiling more.
PS: I know I have been lacking in the picture department. I am about to dump a bunch from our phones. So stay tuned!