Fall 2013

Fall 2013

Tuesday, July 31, 2012

Cuteness

Miss Maia is always cute. Actually, both the kids are always cute. It's easy for me to say that because I get absolutely no credit for it. I can tell that they both must have beautiful birth parents. We haven't measured Maia lately, but she really seems to be growing. I think she is going to be one of those long legged Ukrainian beauties!!  In the picture below, she's pretty pleased with herself as she blows raspberries! It's fun to see smiles coming back to her face.

And Matthew... he can drive me crazy one moment and melt my heart the next. He's been a stinker lately. But this afternoon, he crawled up on my lap, laid his head down, and said "I yike (like) you mom." Oh, Matthew - I like you, too!! God placed such a great love for you in my heart. 
We got some small boxes of raisins at the grocery store today and I told Matthew that they were his. He didn't have to share them with anyone. When we got home, he told me that I could have one box. Then at dinner, we were talking about Great-Grandma's birthday and Matthew decided that he would give her a box of raisins for her birthday. Mark told Matthew that he wished he could have some raisins, too. Matthew thought for a couple of seconds and handed his dad a box. Oh, so precious!! Have to keep those moments in mind during the challenging times. Here he is showing me how strong the lobsters are. I look at that adorable face and know that he is going to have girls giggling over those gorgeous eyes and thick hair. Such a handsome boy. God created two masterpieces in those kiddos of mine!!

Monday, July 30, 2012

Is it really only Monday?

So glad that Tuesday is my day off. It's only Monday and I am feeling a bit exhausted already. Remember that commercial, "Calgon take me away!" That's what I would like to yell right now. 

Most of the time, I feel like I'm managing things pretty well. But every now and then, I just feel incredibly sad. Add to that some challenging issues and I'm ready for that huge bubble bath - lol!! Even if I did get the opportunity, Matthew would probably be in to visit with me and the cats would be sticking their paws under the doors or walking on the edge of the bathrub.

Oh well, I'm headed for bed. Sure a decent night's sleep and some prayer time will do me good. I've got a couple of cute pictures to share tomorrow. I'm too lazy to get my phone and upload them to the computer tonight so they will just have to wait. Which means you have to come back and visit again!

Sunday, July 29, 2012

Eventful Sunday morning

I was in the shower this morning when Mark came in and asked me if I had seen Matthew. Um, no... isn't he in his room? Nope. Mark looked everywhere, was calling for him. No Matthew. I raced to get some clothes on and help him look. I called for Matthew and guess where I found him?  Hiding under the kitchen table! He was pretty proud of himself - lol!!

And the excitement didn't end there. Church was over and the kids and I were on the handicap lift going downstairs to the entry while Mark pulled the car up (it was raining). Matthew was pushing the down button. All of a sudden I hear "9-1-1 emergency dispatch, can I help you?" WHAT??? Then, it immediately switches to an automated dispatch for police and first reponders with the address of the church and that the emergency is in the elevator. I'm freaking out, trying to find a cancel button. The automated message says "DO NOT HANG UP." As if I could, there was no way to disconnect the call. After what seemed like an eternity (probably a couple of minutes), the operator came back on the line and I told her that the button had been pushed by mistake. She asked me several times if I was sure that everything was ok and if we needed help sent. I did finally convince her that all was well. UGH!!! I know Matthew didn't push the button on purpose, but really??? He will not be riding the lift for a while.

This happened after one of our church members was mentioning during announcements this morning about how Matthew has matured over the past year - lol!!

I walked Maia up for the children's offering this morning. It was a sweet moment. She isn't able to hold the money or put it in, but it was something she used to do. And the fact that she is able to walk that distance (even with help) is progress. One of the ladies came up after church and told me that she cried seeing Maia. Since seeing Maia in her wheelchair on our first Sunday back, C. has been praying every day that she will be able to walk again. I cried after we got back to our seats, too. Praying that six months from now, Maia will be walking up front by herself. But, more importantly praising God for the recovery she has made so far!

Saturday, July 28, 2012

Far behind

I'm so far behind on blogging and a bit off on my dates, too. I was planning to blog tonight and back date the post to yesterday, talking about Maia being home for one month. Well, I went back to old posts and see that she actually came home on June 26. So I really should have done a thankful Thursday blog about that. Sigh... one of these days, I will catch up again.

It's been a busy week. Work has been crazy busy. I tend to be one of those people who like to have my "to-do" list completed before leaving at the end of the day. This week, I was leaving with only the essential things crossed off. UGH!

Matthew had Bible school every evening. Last night, the kids put on a brief program and then, we (parents and kids) watched a movie together. Matthew was full of energy. He really struggles with staying focused and being still, so standing in front of the church for with a group of other kids was difficult for him. But, he does love music and singing - especially when there are motions to go along with the song. It was fun to watch him put his heart into it.

Maia seems to have done well with school this week. She's not napping in the afternoon, I think because she's so "wound up" from the morning. She's managed to make it through the day without too much trouble, although she's had a couple evenings when she's been a little more emotional than usual.

Maia's been making some purposeful movements - like grabbing things and fllinging them or knocking them over/on the floor. It's a challenging situation. On one hand, we're glad that she's making those efforts. However, if we happen to leave something by mistake like a glass of water within her reach, she dumps it. She's knocked the portable DVD player on the floor several times.  This afternoon, I gave her a somewhat stern "No!" when she did that. Maia "hit" me in the face. Now admittedly, she can't hit hard enough to hurt. But, I don't want her to become a spoiled kiddo who acts out and gets away with it. So, we're trying to set limits while still encouraging her to do things that will help her relearn and get stronger.

Had a follow up appointment with her general pediatrician yesterday. Just to check in after her hospitalization. Nothing new came from that appointment.

Matthew was seen by the pediatrician on Wednesday also. He got his next installment of "catch-up" immunizations. Mark had his hands full with that. Matthew has huge anxiety at the doctor's in general. Add three shots to the picture??? Mark had to literally hold him down with his body while the nurse gave the injections. Poor kid. Didn't keep him down long. He's been a little more irritable, but that's about it.

Mark's starting to get ready for the annual fly-in at the small airpark where he keeps his ultralight plane. Every weekend for the next month will be spent working on the grounds in preparation. I'm thinking about things I might do with the kids, today we went for a bike ride before it got too warm. May visit the little zoo nearby next weekend. Or maybe, we'll just be lazy! ;-)

Hope you are all having a wonderful weekend! 

Wednesday, July 25, 2012

Appointment update

Sorry for all who have been waiting to hear how things went. I actually started this post last night and fell asleep before I finished the first paragraph. And today has just been crazy, so I am finally taking a few moments to complete the post. I am going to backdate it for yesterday.
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It seemed like such a busy day with appointments. And I only made it to one of them. Maia had blood work this morning to check her seizure medication levels. Since Maia's veins are so difficult, we take her to the lab early to get numbing cream applied. This sets for about 30 minutes before the lab techs attempt to draw any blood. Depending on how the blood draw goes, this can take some time, too. Mark had planned to take Maia to school after the lab appointment, but it got too late so he and the kids came home instead.

I met them at the clinic for the afternoon Neurology appointment, prepared with my list of questions. I didn't recognize the name of the person that we were seeing which had been a bit concerning to me. And when I met the physician, I didn't recognize her either. However, she is one of the residents who had seen Maia in the ICU and once or twice afterwards. So, she did have some knowledge of what has happened in the past 10 weeks. And after talking a bit, I did remember her. (Isolation gowns/masks make a difference in a person's appearance - lol!).

Initially, she asked how Maia was doing. I was pretty blunt. It depends on how you look at it. If I compare with three months ago, she's doing rotten. If I compare with two months ago, well... she's doing all right. I spent a fair amount of time describing what she is able to do physically right now. Dr. B just listened. Then, I asked my questions. Recently, we've noticed that Maia has a fair amount of anxiety and nervousness when she is lying down. There's been a change in her sleep habits, she's sleeping less and fighting sleep more. Could any of her medications be causing that? Is it necessary to do any further investigation in to where this infection came from? Is it possible that there was contamination at the time of her initial shunt revision in February? How do we prevent something like this from happening again? Why did she lose her speech after the subdural drains were removed? There were others, too. But, that's what I can remember right now.

Few of the questions were fully answered. Maia will be having a Sleep Clinic consult including overnight sleep study. If this is normal, it may be her tonsils causing the sleep problem by dropping backwards and giving her a sense of fullness in her throat which may cause anxiety. Unlikely to be medication related. Because many of the bacteria in her shunt infection are "normal" bacteria in her body, there is no way to eradicate them. No answers as to how to prevent something similar from happening in the future. No answers about her speech. Dr. B did review MRI and CT scans of the head before and after the drains were removed. She said that there was no evidence of increasing fluid after the drains were taken out which would account for the loss of speech. That was her only idea for what might have caused this. She did suggest that we consider trying to taper and discontinue one of the seizure medications if Mark and I are comfortable with that. If we have peace of mind because Maia is not having seizures right now, it would be ok to continue. But, all meds have side effects and if she can get by with only one med, that would be better for her. I'm inclined to agree. Worst case scenario, Maia will have another seizure. I certainly don't want that. But, if discontinuing one of them would help her cognitively, that would be wonderful.

At one point, Dr. B did say, "I'm so sorry that this has happened to Maia and to you. It makes me cry thinking about it." For that, I was appreciative. She is the first medical person who has truly acknowledged what we (and most importantly, Maia) has lost.

So all in all, it was a pretty anti-climactic visit. The blood work results were still pending so we are waiting to hear whether her medication levels are therapeutic or not. We will see Dr. B in two months. And that's about it.

I'm not sure whether to be happy, sad, or in between. Dr. B was kind. I'm not sure if she didn't have answers or didn't feel comfortable giving answers. That is one of the hardest things. If she didn't give answers because there is blame to be placed, well... I want to be angry at someone/something. Because then there would be a cause, a means of stopping this from happening again - either to Maia or someone else. But if there are no answers, that's almost more difficult. Because then, we don't know if this will be a recurrent problem. It's scary to me. I would not want any one to experience what Maia has been through in the past ten weeks. I don't want her to live through another infection like this one.  She doesn't deserve that.

I am glad that God knows Maia's future. I'm thankful that He loves her and holds her in the palm of His hand. I am thankful that He allowed me the privilege of being mom to her and Matthew. And I am thankful that He has the answers to the questions even when I don't.

Tuesday, July 24, 2012

Nothing new

It was so good to have rain overnight and early this morning. The farmers certainly need it for their crops and it helped cool things off for a bit (although as soon as the sun came out, the heat was back). Poor Maia, the bus got here this morning and we were getting her settled on the wheelchair lift when I realized that I was holding the umbrella over my head, but not hers. Fortunately, it was just sprinkling and also... her hair isn't going to be affected by a bit of rain - lol!
When the bus stopped in front of our house to drop her off after school, there was a smile on her face when the door opened and she could see me. What a sweet moment that was! To have that bit of recognition and happiness touched my heart.

Matthew had a busy and fun day, too! He had speech therapy this morning and participated well for most of the time. The therapist had a medical resident shadowing her for the day and this doctor had taken care of Maia in the ICU so she was eager to hear how our girl is doing.

After lunch, my friend Del took Matthew swimming while I brought Maia to therapy. Matthew had a wonderful time and again, it was nice for him to enjoy an activity that would be more difficult to bring Maia to. Maia's therapy appt. went well. One of the exercises was walking with a rolling walker and Maia actually held on to it with her left hand for a fair distance by herself. Although it's a baby step, it's still progress.

Maia sees the Neurologist tomorrow afternoon. I'm making my list of questions... some very direct ones. Not sure if I will get any answers, but I have to ask. I know that it doesn't change where we are at now, but I don't think that I am asking anything unreasonable.

We're seeing a bit of regression in some of Matthew's behavior right now. Trying to figure out if this is just related to Maia or if something else is going on. If it crosses your mind, please pray for him.

And that's all that's happening around here!

Monday, July 23, 2012

First day of "school"

Well, summer school and vacation bible school that is. Maia's bus was scheduled to come at 7:30am, so I decided I would see her off and then head to work. It was harder than I expected. In fact, the tears are flowing now just thinking about it. The bus came and Val (Maia's usual bus driver) got off the bus to open the door with the wheelchair lift. I didn't notice it at the time, but now looking back at the pictures I took, there's a little bit of apprehension on her face as she is sitting in the bus. At this point, Maia doesn't show a whole lot of expression so we really weren't able to tell if anything was familiar to her or not.

Waiting for the bus

I totally trust Val and the school staff, but this is the first time that she has been away from one of us since the hospitalization (with the exception of a little time with Nana and Papa). Oh, my heart wanted to just bring her back in, wrap her tightly in my arms, and keep her close. It hurts that she wasn't standing at the curb watching for the bus, yelling with excitement when she saw it coming down the street. It hurts that she wasn't able to climb up the steps and wave good-bye to me.

Sounds like Maia did fine at school. She was a little warm (no A/C in the school or on the bus) so they dropped her off first at the end of the morning. She was a little droopy, but Mark said as soon as Maia got inside, she perked back up. She's not particularly tolerant of the heat anyway, so this really wasn't unusual. Was wound up enough that she didn't take a nap this afternoon. And it took a long time to calm down tonight before falling asleep. Wish I knew what was going on inside that beautiful head of hers.

Was nice for Matthew to have some time alone with Mark this morning. They went for a bike ride and ran an errand. Bible school tonight for Matthew. I took him to church and signed him in. Asked if he wanted me to walk upstairs to the sanctuary with him. Ever the "shy" child (NOT), Matthew said "nope," waved at me and off he ran - at warp speed, of course! He is a kid who is going to embrace all that life has to offer. Maybe I can learn a little from his exuberance and willingness to jump with both feet.

Silly moment with dad



I have to trust that God has a reason for this season in our lives. He has brought us to this place. It doesn't make sense to me. In fact, it's downright painful and difficult. There are times when I want nothing more than to cry (oh, yeah - I already do that -lol), scream, beg, plead for Him to take it away and bring the old Maia back. But, I will choose to lean on God and remember that His ways are not my ways. And His strength will be made perfect in my weakness. Given how weak I am,  God's strength has to be amazing!! He has a purpose and my job is to trust. So, trust I will even when it doesn't make sense.

Sunday, July 22, 2012

Over already?

Seems like the weekends fly by. I always wish there was a bit more time to spend with Mark and the kids. Mark was busy at the fair this weekend, kind of miserable in this heat. I'm ready for cooler weather. Not a fan of heat in the first place... and VERY thankful for our central air.

Yesterday, we drove to the town where Maia will be going to summer school for the next two weeks. Several towns combine their summer school sessions and rotate locations every year. So, Maia will take the bus to a nearby town for her morning summer school. From what I understand, she will have her usual bus driver which I am thankful for. Feeling a little protective about sending her off tomorrow. She will be on the bus for about 45 minutes each way and Mrs. S, who has was one of her teachers last year, will be her teacher so I hope that will help. It's so hard when we just don't know how much she remembers and comprehends. I want to act as if she "gets it" all, but I also don't want to assume that and have her frightened. So anyway, we showed Maia the "new" school.

It was good to be at church today. We had a lazy afternoon. Mark was at the fair and I took the kids outside for a while. Cleaned out the kids' pool and filled it with just a few inches of water. Put Maia in it and she scooted herself around for a while. Did just fine with staying upright by herself.

And that was really about the extent of our excitement this weekend. Matthew will start Bible school tomorrow and it's nice that he has his own special school since Maia will have hers. He has been talking about it constantly for the past couple of days, know he will have fun!

Here are a couple of pics of the kids from the weekend.

Matthew loves school "parks" - they have the best stuff to play on!

Hanging out in the pool!

Making ice soup cream with daddy

Saturday, July 21, 2012

How do I live my life?

I've been reading the book "The Five Silent Years of Corrie Ten Boom by Pamela Rosewell Moore. For those of you who may not know, Corrie Ten Boom was a Halocaust survivor. She and her family were Dutch Christians who hid Jews and others fugitives during WWII. They were betrayed and sent to concentration camps where Corrie's father, sister, brother, and nephew died. Corrie survived and went on to become a world-renown evangelist. Ms. Moore worked as an assistant/companion to Corrie in the last years of her life.

In her book, Ms. Moore talked about something Corrie said to her and it really struck a chord with me tonight. I'm paraphrasing, but Corrie felt that what happens to a person in their life is less important than how they handle what happens to them.

I stopped to think... how am I handling the things that happen in my life? Am I looking to God in every single circumstance? Am I trusting that He knows what's best for me? Do I lean on Him when I don't have the strength to make it on my own? Does God get the glory for all of the wonderful blessings that He has provided me with? Is He the top priority in my life?

Honestly, I struggle with some of those issues. I am SOOO human and SOOO imperfect! I fail miserably and I fail often. I think my struggles come more often with the day to day problems than with the crisis situations (although, I certainly have a lot of room for improvement there, also).

Maia's illness has deepened my faith in many ways. I don't think that my pain is any less because of what has happened. Believing that it could have been prevented makes this a bitter pill to swallow. What our life looks like today is so far from where I wish it could be. But, I try very hard not to live in "what if's?" Here is where we are and the choice of how I handle it is up to me (along with some help from my Heavenly Father).

As I thought further about Corrie's comments, it brought to mind the following Bible verse from 1 Peter 1:7. "These trials will show that your faith is genuine. It is being tested as fire tests and purifies gold--though your faith is far more precious than mere gold. So when your faith remains strong through many trials, it will bring you much praise and glory and honor on the day when Jesus Christ is revealed to the whole world."

I pray that God will continue to strengthen and deepen my faith. Even though I don't know what tomorrow will bring, He does. And I have faith that He can use all circumstances to reveal His glory.  It is my hope and prayer that the way I live my life will somehow bring glory to Him!



Thursday, July 19, 2012

One year ago

One year ago today, we made our last trip to the detsky dom in Sevastopol. One year ago today, a little boy didn't know that his world was about to change in a big way. He woke up that morning not realizing that it would be the last one he spent in an orphanage, the last one without a momma or daddy to tuck him in at night. He didn't realize that he would go to bed that night with a family of his own, a forever family who would love and cherish him! What a privilege to watch the changes that have happened since God blessed us with our son!  Here's a brief look at the past year, month by month.

July 2011 - leaving the detsky dom a son, grandson, nephew, friend - cherished kiddo!

 August 2011 - Is there anything better than boxes to play in?


September 2011 - Playing at the park


October 2011 - School Halloween party (Matthew was an M&M)


November 2011 - First trip to the dentist


December 2011 - a new fishing pole for Christmas, can't wait to go fishing with Papa!

January 2012 - burning off some mid-winter energy 


February 2012 - Baptism


March 2012 - playing at the park in shorts, crazy!!


April 2012 - first tooth is gone!

 May 2012 - Those darn dinosaurs keep eating Matthew's hair.


June 2012 - playing with birthday presents 

 What could be a better present than a puppy? Thanks Grandpa Jerry and Grandmama!

July 2012 - Playing in the kiddie barnyard at the fair

We're celebrating Matthew's "Gotcha Day" on Saturday. What does he want for his special lunch?
A peanut butter sandwich! :-)


Thankful Thursday

There are many, many things to be thankful for this Thursday although one of them will be the topic of a separate post and only briefly mentioned here.
  • For three weeks following Maia's return home, we have been blessed with meals - almost every single day. Friends, church family, and acquantainces have dropped off fabulous food. A bloggy friend and a fellow adoptive mom (we met in Kyiv last June as we were heading to Sevastopol for Matthew and she was bringing home her beautiful daughter) have provided for us. It has been an amazingly, humbling experience. I can not begin to tell you what a gift it has been, especially as I returned to work. To be able to come home at the end of the day and not worry about what was for dinner was wonderful. I was able to just enjoy time with the kids and Mark. Plus, we sometimes had leftovers for lunch the following day. Thank you is inadequate for the gratitude we feel for this caring! And thanks so much to my friend Linda who coordinated the meal train for us!
  • Praising God that friends from our church, the Gillis family, are in Kyiv right now. They had their SDA appointment today and were given the referral for their little one. Tomorrow, they will pick up the official paperwork giving them permission to meet him. And Sunday, they will travel to Sevastopol. It's so fun to be following their journey!
  • My brother Jake and sister-in-law Krys are visiting for a week from Portland. They've got a busy schedule, but we were able to spend a few hours together yesterday. This was their first time meeting the kids so that was pretty special.

  • Matthew is spending a couple of days with my parents and Jake/Krys. Precious moments for him to get to know his dyadya (uncle) and tetya (aunt) as well as some undivided attention.
  • And speaking of Matthew, that brings me to the above mentioned topic. Today is "Gotcha Day" for the adorable, energetic, sweet boy that God chose to be our son. We will celebrate when he gets home (either tomrrow or Saturday) and I'll post pics then. After all, a day as special as "Gotcha Day" deserves a post of it's own!!
What's on your gratitude list today?

Wednesday, July 18, 2012

Fun at the fair

Our county fair started today. I had signed up for vacation several months ago, excited to take the kids to the fair. Of course, I wasn't anticipating this miserable heat. It started raining shortly after we arrived, so we headed to the FFA Kiddie Barnyard which was covered.




 There was also a petting zoo with "exotic" animals. Don't you love Matthew's expression? 

Maia was not so easily impressed.


Of course, we did hit the midway for a few rides - Matthew's first time. He had fun, but adventure seeker that he is, really wanted to go on the "big" rides. I assured him that when he gets older, he will be able to.

  
Even Maia got to ride the merry-go-round. She liked the up and down part, but wasn't overly thrilled with having to sit on the horse.

Fortunately, the rain cooled things off just enough that we were not miserable. Shared some caramel malts and cheese curds before heading home.  Yum for fair food!

Tuesday, July 17, 2012

Speech evaluation and minor home "surgery"

Maia saw the speech therapist for the first time since leaving the hospital. To be honest, her verbalization has been an ongoing concern for me. She had speech when she was in the ICU. The last time we heard her speak was the afternoon before the drains were removed. No one can (or will) give us any answers about why Maia lost her speech when she was supposedly "improving." She has made sounds since that time. Some of them have resembled words, "ba", "mamam", "no." But, we don't get the sense that she actually associates any of those words with their context. And some of the sounds that she made initially have disappeared. Today's evaluation confirmed that Maia's receptive speech level seems to be at about the 9 month old level and the expressive speech is at around the 4 month old level. Although the speech therapist did not come out and say it directly, I think she is less than optimistic about how much speech Maia will regain. She asked how much improvement the doctors told us we could expect and said that in order for Maia to remain in therapy, she will have to show that she is making progress.

None of it was a surprise, but it still is discouraging to hear. I admit, I'm feeling a bit of that "why me?" right now. It's not really a pity party or feeling sorry for myself, but maybe more appropriate is "what is the purpose in Maia's journey or why does this have to be her journey?" I'm selfish, I don't want her to have to struggle any more than she already has in her life. I want to hear her voice, I want to hear her saying her Bible verses. Her favorite is "Love the Lord your God with all your heart," complete with hand gestures to accompany it. So... ok, I am feeling a little sorry for myself (missing those things. But, I am praying that Maia will amaze us all!

Now, on to my second topic. Yep, a minor procedure was performed here at our home tonight. Matthew came into the kitchen and asked for a kleenix. Hmm... he doesn't usually do that. I looked closer - his nose was bleeding. He went to show Mark. Next thing I hear is Mark putting Matthew on our bed and telling him to lean his head back (I'm thinking... no, that's not what you do for a nosebleed). He asks me to come in, hands me a flashlight, and says "What's in Matthew's nose?" Ummm... it's something blue. A pair of tweezers pulled out a little plastic cling decal from one of Matthew's books. Yep, he put it up there. Ah, the fun life with a five year old - lol!!!

Slowing down to hear

This morning as I was racing around trying to get things done before heading off to the dentist, I heard God calling to me. I hadn't taken the time for my devotional before getting in the shower (my usual routine), figuring that I would have my time with God later. You know how that goes (or doesn't go). And that's how my morning was working. But, I could hear his voice saying "Come on, Melanie - take just a couple of minutes to spend with me. It's important." And I stopped to think how I would feel if God told me, "Sorry kiddo, I'm just too busy for you right now. I've got so many other things that are MUCH more important than you are." Ouch... yep, that convicted me right there.

So, I stopped finished what I was doing and headed to my chair to read today's message. God was truly speaking to me and I needed to hear what He was saying. The devotion talked about how incessant life's demands are and how easy it is to get caught up in the busy-ness of every day. We often push God into the background and expect Him to wait for us to have time for Him. It really is silly when I stop to think about it. Am I going to tell God that putting socks away (or whatever it is) is more important than spending time with Him? But, I often do. I stress about everything that "has" to get done and feel as if I am stretched to my limits much of the time. One of the Bible verses with my devotion was Luke 10:42. I'm extending it to include verse 41, " But the Lord answered her, “Martha, Martha (read - Melanie, Melanie), you are anxious and troubled about many things, but one thing is necessary. Mary has chosen the good portion, which will not be taken away from her.”

I'm so busy with the unnecessary things that I overlook the good portion - my relationship with my Heavenly Father. As soon as I put Him in second (or third or last) place, my world becomes chaotic and overwhelming. And it is when I slow down to hear what He is saying to me and listen to God's voice, that peace enters my life again.

Funny... even though I was running sooooo late, I took that brief period of time with God and still made it to my dentist appointment on time. :-)

Monday, July 16, 2012

Still here

Do you ever have those times when you don't "do" anything, don't accomplish anything, and still feel like you've been running constantly? That's kind of what our weekend was like. Forgive me for not blogging...

Saturday morning was pretty lazy. The couple who bought my house shortly after Mark and I got married came over to talk about their plans. We sold it to them on a contract for deed arrangement and they are now going to buy a different home so they wanted to talk to us about what's going to happen. I spent the afternoon at work, trying to catch up. Made a little dent in my "to-do" list, but not as much as I would have liked. Oh well.

For those of you who have followed our blog since Matthew came home, you may remember our failed attempt to see fireworks last year. Maia started crying at the noise and Matthew hid on my lap under a blanket. We left after a few minutes. Decided to brave it again Saturday night. There is a small town not too far away that puts on a really nice show for their city celebration. Matthew and I played catch while we waited for it to get dark. Maia and Mark visited with the family sitting next to us. It was a really late start this  year - probably around 10:15pm. Matthew had been excited about the fireworks - until they actually started. He did not like the "booms," so Mark took him to the car. I was a little concerned about how Maia was gong to react, but she enjoyed the show. For whatever reason... since her illness, she has really enjoyed loud noises, seeing things knocked over, hearing things crash down, etc. So yep, the loud noises were right up her alley. It was a late night for all of us, after midnight when we got home and then up early for church on Sunday morning.

Matthew didn't wake up too cheerful. He generally has to wake up on his own to be happy in the morning. If we are waking him up... not a pretty sight. But, he pulled it together at church. I was impressed. He was excited when one of the ladies asked him to sit with her (in the row right in front of us) for a little while. After the service, we stayed for fellowship and to visit with our friends, the Gillis family, who left today for Ukraine to adopt a little boy. So excited for them and praying that God will just bless each step of their journey!

A friend brought over dinner and we had the chance to visit a little while. Matthew had a wonderful time playing with her son until he decided that he didn't need to listen to the little boy's requests for Matthew to stop (he was driving a tractor and pulling the little boy behind it in the wagon). A major meltdown followed. We've been seeing a few of those lately, a lot of anger and defiance when he can't do something that he wants to. It's responded to with calm and reminders that he is not the adult and he doesn't get to make the rules. Ah.... life is rough, isn't it?

So, that was the extent of our weekend excitement. Boring as all get-out. And yet, I didn't get any laundry done, no cleaning, nothing. There were a couple of things that Mark and I REALLY needed to work on - nope, didn't happen.

I even had something I wanted to share here on the blog on Saturday, feeling like God was really speaking to me. And as you know... that didn't happen either. The nights have continuously gotten shorter over the weekend as I try to get a little more accomplished. UGH! I really don't want more hours in the day, guess I just need to manage my time better.

Tomorrow's a busy day. Matthew goes to speech therapy, I go to the dentist, and Maia has PT, OT, and her first speech appointment. She's still not verbalizing, but for the past 2 days has decided to scream when she's happy. Love to hear it, although it does hurt my ears - it's at just the right level to be very piercing. Hopefully, it's a step in the right direction.

I am falling asleep as I type so I will leave you with that mundane post. I've got a few pics and other things to share tomorrow so check back for something more readable - lol! And for those of you who I have promised to email, it will be tomorrow.

Thanks to those who have checked in to make sure everything's ok. We are hanging in there.

Friday, July 13, 2012

Progress

Maia had her follow up appointment with Dr. S today. She was very pleased with how Maia is doing. Looked at her scalp incisions and thinks they are healing well. Was happy to see the progress she has made with therapy. I had some questions, but they will have to wait for the neurology and neurosurgery follow up appointments which are in the next couple of weeks.

And speaking of therapy, the PT and OT are both also happy with how Maia is progressing. So pleased in fact that they are decreasing the frequency of her therapy to twice/weekly. I have mixed feelings about this. They reassured Mark that it is because they can see that we are working with her at home and know that it is making a difference. They don't feel that seeing her one time less a week will make a difference. I'm glad they are happy with how well she is doing. Mark reminds me that they are looking at things from a much different perspective than we are. Amy (OT) and Linda (PT) are seeing where Maia was a month ago and making comparisons based on that. A month ago, she was just starting to push herself up from a lying to sitting position. The feeding tube came out one month ago today. Maia was still having agitation, anxiety, vomiting. We didn't realize that she would need repositioning of her shunt again one month ago. And that's the perspective they are looking at. Mark and I are looking at where she is today compared with where she was 2 months ago today. And two months ago today was Mother's Day. Maia was running around, playing with cousins, charming other relatives, her sweet self.

Anyway... from our perspective, it's sometimes hard to get excited about how she is progressing. We want her back to her pre-illness self and we want it now. Not impatient or anything - lol!  So, we are learning to readjust our perspectives and thank God for the gains Maia is making.

  • She is able to take a few steps now with me just holding one hand and does well walking when both hands are held.
  • The abnormal movements have decreased (although they are still present to some extent). 
  • Maia is showing more comprehension of the world around her and tracking more.
  • She is starting to reach out and touch items. I just bought her a "discovery" ball that sings the ABC's when it is rolled. She seems to really like that and is able to turn it a bit.
  • Is tolerating regular foods.
  • Laid quietly in bed tonight after story and prayers - making eye contact with me and occasionally smiling. Oh, those were precious minutes. 
So, there are reasons for rejoicing. And they are proof that your prayers are reaching the right place. Thank you my friends and family! 

Thursday, July 12, 2012

Thankful Thursday

Time always seems to go fast, but wow - the weeks fly by these days. Here it is Thursday again and time for my gratitude list. There are some things that are right at the front of my mind tonight.

  • First, I am thankful for all of the support and encouragement I receive from you - my bloggy readers and friends! I'm thankful for you all the time, but your words in response to yesterday's post made such an impact on my heart. I read your comments throughout the day and felt your care. God has blessed me with each of you (even those who don't leave comments). Consider yourself hugged!
  • Mark's parents are getting ready to head for Canada next week. They usually leave shortly after Mother's Day, but because of Maia's illness delayed their plans. They were anticipating leaving next Tuesday and are delaying departure one more day so that they can help Mark with the kids while I spend the morning at the dentist. I don't know what we would have done without them over the past two months and I thank God for them every day.
  • I am thankful that Maia was home with us as she went through this horrible time. To think about her (or any other child) experiencing something like this without a family?? Oh... my heart breaks. Even though she can't tell us, I pray that she knows how loved she is. God knew that she needed us and our family needed her. 
  • And God knew that we needed Matthew and he needed us as well. He's learning that families stick together, that there are boundaries, that he doesn't need to be the one in control. May not always like it, but he is learning. And he is learning to just be a kid - what a blessing he is!
  • Mark says he is thankful that Maia is seeing Dr. S tomorrow.  Initially, the scheduler had told us that we would have to wait until September. But, Dr. S is making time to see Maia at the rehab unit. Thankful for the follow up with someone who knows her well and takes our concerns seriously.
  • The opportunity to wish my dear bloggy friend Jane a happy birthday!! Although we have never met, I truly consider her a "soul sister." So glad God has brought you into my life. Love ya!!
What's on your list today??

Wednesday, July 11, 2012

"How is she doing?"

I struggle with how to answer that question. I've been trying to come up with an answer that is better than "she's ok," but isn't more than people want to hear. How do I convey the reality of the situation without going into the details? Does it matter? Do people just want to hear that Maia's great? The question is just like "How are you?" 99.9% of the time, I will answer "Fine, thanks" or "good" even when I'm not. Because really, it's a courtesy question. No one expects you to be honest.

Now... let me preface what I'm going to say with this. I am being honest here. I understand that this may open me up for negative responses. I don't expect everyone to "get it" and that's ok. But, this is how I feel and where I'm at right now. So if you wish to judge me, you may want to skip the rest of this post.

From a health standpoint, yes... Maia's doing well. Her body is healing, she's strong (believe me, I know that from her pushing me away). Her surgical incisions look good. She's eating regular food, we aren't using any nutritional supplements at this point. Those are good things and I am thankful for them.

But... (gotta be a "but") remember, my warning above. It's hard for me to say that Maia's doing ok. Because she's NOT ok. She can't walk by herself, she can't turn herself over in bed (although she can and does spend much of her time sitting herself up), and if we sit her on the floor, she will scoot herself around a bit but doesn't seem to move with much intent. Maia is not able to communicate, she is not grasping things, not able to feed herself. And it stinks - plain and simple. It hurts me more deeply than I ever thought possible to see the things that Maia has lost. It hurts to not hear her voice talking to me, to feel her hands touching my face or holding mine. It breaks my heart that she can't play in her kitchen and make daddy coffee, eggs, and pizza (her favorite meal to "cook" for him). In reality, I know that these are not things that are going to come back overnight. But my heart still longs for that magic wand to be waved and for the "old" Maia to be back with us.


I don't mean the above to sound negative and as if I am giving up on her. That's not the case. I am grieving for those "cant's" while trying to celebrate the "can's" and praying for God's help with that. I think part of my struggle with the "How's Maia doing" question is that to say she's "ok" feels as if it diminishes the significance of what she has gone through and the long journey still ahead for her. And I'm not quite sure how to reconcile that. I suppose it will come with time and the healing of my heart. For now, I will continue to seek  the right words (for me) to answer those who ask about her. 


Tuesday, July 10, 2012

Time flies

My day passes so quickly. Seems like I always have big plans for what I want to accomplish and end up checking few things off my "to do" list. But, does it matter if the house stayed a mess? Not really. It matters more that I spent time with the kiddos. One of these days, Mark and I will have to take a bit of time for us, too.

Matthew had his weekly speech therapy appointment this morning. According to the therapist, he is doing even better than she expected which is wonderful to hear. I am amazed at how much his vocabulary has improved over the past couple of months. Now, we just need to continue working on the pronounciations.

I took Maia to therapy this morning. It's been a couple of weeks since I went so it was nice to talk with the physical therapist. No occupational therapy today as the therapist was off. Anyway, Linda (PT) said she is very happy with how Maia is doing. She notices a difference even in the couple days between visits. Below is a picture of Maia walking with a regular walker. She does well with it, except her hands have to be held on the handles. We haven't figured out what the issue is, but when she was in the PICU, Maia had a huge aversion to anything even touching her hands so there has been progress. She is paying more attention to things and is making more eye contact which is good.


Such a sweet girl... you have to ignore the pamphlet rack in the background. I took the picture in the ED waiting room. 


Spent a little mom/Matthew time this afternoon which was nice. Overall, Mark and I feel like he has done pretty well with the transition home. Thank you for your ongoing prayers in this regard. They are making a difference.

Maia's teacher stopped by this afternoon to talk about summer school. She missed the first session, but we are going to go ahead with the second session and see how she does. It will be two weeks in the morning. I'm so appreciative that Maia will have this opportunity. Feeling a little protective of her, but knowing how much she has enjoyed school - I think it will be good.

Had more I wanted to blog about, but time has run away from me so it will have to wait until later. As always, thank you for your prayers and encouragement!

Monday, July 9, 2012

Comments, aww, and really??

For those of you who wonder why your comments don't show up... we moderate all comments before they appear on the blog. We've been fortunate to have had very few unkind/inappropriate remarks, but I like to see what people are saying before it goes public. Spam will also make it's way in on occasion and we don't need that on the blog either. So, never fear. Your comments show up in our email as soon as you submit them, we just don't get them published right away.

I decided to take yesterday off from blogging. We had a full day and at the end of it, my hubby asked me to spend a few minutes with him uninterrupted so of course, I did. ;-) Somehow, that just seemed more important than blogging. The few minutes ended up being literally that, a little conversation, a kiss, and I was falling asleep - lol!

We did have a nice Sunday. Church in the morning, then home for lunch before running into town to get Maia's glasses adjusted. Before she got sick, we had ordered new glasses for her. Poor kiddo needed bifocals. The glasses came in while she was in the hospital and we had picked them up, but they were too loose. So finally, got them adjusted. I'll try to remember to take a picture tomorrow - she does look pretty cute. Spent the afternoon in the backyard with water wars again. Mark set up a water slide for Matthew using the garden hose hand sprinkler wand and the slide on the swingset. Matthew was in heaven while it lasted. He has such a difficult time with ending fun activities. So even though we gave him advance notice... "In 10 minutes, it will be time to go inside, In 5 minutes, 4 minutes, 3 minutes...," etc. he had a major meltdown when the end of play time came. But, he did manage to pull it together after a little while. And slept well last night after all that running around (yep, the stuff he's NOT supposed to do).

Maia and I spent a couple of hours in the emergency room last night. She had some very weird stools and the triage nurse suggested we come in. They sent the stools off for testing and sent us home. That's it. The resident looked in Maia's ears, poked her stomach a bit, looked at her bottom, and that's all. Nothing else. The consultant came in, felt her stomach, looked at her bottom, said "She looks great, there's no reason to be concerned." Ummm... yeah, I've heard that one before and the consultant was one of the ones who told us that nothing was wrong on one of our previous ED visits concerned about Maia's scalp incisions and fever. And no, I'm not horribly concerned, but did explain the circumstances of the past several months - for all that was worth. No blood work, nothing - except a bit of "tolerance" for the hypochondriac mom. I came home feeling very frustrated. We're still waiting for the test results and I fully expect them to be normal. I don't want Maia to undergo any unnecessary tests or procedures. But, I have also learned that she may not show us any of the "typical" signs and symptoms of illness. Thankfully, we are still able to use Dr. D as our
 "go to" person when taking Maia to therapy on the rehab unit. Will touch base with him tomorrow. At this point, he and Dr. S are the two physicians I trust. And I really dislike feeling that way. I want to be able to trust everyone who cares for my daughter (or anyone for that matter). 


Oh, I almost forgot about the "awww" moment. I had picked up a few activity things that were on clearance at a local store (33 cents each) to keep Matthew busy at church. He was so excited as he took them out of his church bag and played with them. After a little while, Matthew got very close to me and told me "Tik-oo" (thank you) and then put his hands on my cheeks, looked me in the eye and said, "You good mom." Now if that was not a precious moment, I'm not sure what is!

Tonight, we went to a meeting about parenting a child with special needs. We had attended our first meeting the night before Maia got sick. It was difficult for me to go back. Again, not because of anyone else - just because of how it "used to be." Thinking of all the things she used to do makes me very sad. I don't feel like I'm living in the past, more just grieving.

Anyway, the "really?" moment came when I started to get Maia out of the car (I met Mark and the kids since I had been at work). Usually, I put out clothes for Maia to wear the night before. I hadn't done that today. However, I had left some clean clothes (waiting to be put away) on the dresser. Can you see where I am going with this? Ok... first thing I notice is that Maia is wearing a dark pink/almost red dress. She has on light pink shorts underneath that are not even close to matching the dress (I could give Mark credit for putting on shorts to cover her bum if they matched). Then, I looked at her feet - she's wearing light blue/green socks and her pink dress shoes. Oh, my... I said, "Really?" I lifted Maia out of the car and it got worse. She was wearing a black t-shirt with a peace sign that says "which passes all understanding" underneath the dress. Could you hear me laughing? It was HILARIOUS!! I wish I had taken a picture, but we were cutting it close on time so I didn't want to delay getting inside. WOW - it was a sight to behold! It did make for some comic relief.

And on that note, I've gotta quit for the night. It's long past my bedtime. Pat and Jane - I will email you tomorrow. Forgive my slow response!!

Saturday, July 7, 2012

Firsts and one year ago today

I'm sure there will be many "firsts" in this new journey we are on. Some will be easy, some will be hard. But, all will be a step in getting our new "normal" figured out. So today, we went to a restaurant for lunch. Nothing fancy, just Maia's favorite fast food place. When we pulled in, she seemed to look happy but it was difficult to tell if she really recognized it or not.
Didn't feel that much different than usual, although in many ways it was. We negotiated the restaurant with Maia's wheelchair without difficulty even though I don't think that they are well equipped for that situation. I'm not sure it would have been possible with an adult wheelchair. Whether it was coincidence or not, an older gentleman and his disabled daughter came and sat at the table next to ours. When they left, another visually impaired couple sat at that table. I was very impressed with how the restaurant staff took care of them. Would I have noticed that type of thing before? I'm not sure.
We had a pretty good day. Ran a couple of errands while Mark took the kids over to Nana and Papa's. After everyone was home, we spent the rest of the afternoon in the backyard. Water wars for Matthew, Mark, and me while Maia supervised from her spot on a blanket in the shade. Had a good time, although we had to call it quits after Matthew decided to get Maia wet (after he had been advised not to - lol).  While I was relaxing with Maia, it occurred to me that an afternoon like this may have been less likely to happen if she hadn't gotten sick. I tend to be one of those people who always feels like I should be doing "something" even when I am burnt out and in need of rest/recovery. Perhaps God will use this time to slow me down a bit and teach me that I don't have to be on the go 24/7. Anyway... it was wonderful to just have fun, enjoy a little bit cooler weather (sad when 85 degrees feels cool), and be together.
Kids both had an early night. Matthew was in bed before 7pm because of a bit lot of attitude and defiance. I think he was exhausted because he was asleep within a few minutes. Maia was in bed and asleep around 7:30pm - she didn't have a nap today so she was tired, too. May regret this when they are both awake at 4:30am - lol!  It was nice to have a a few hours of quiet time with Mark. Steaks on the grill (Gaye - we are saving your Subway giftcard for a day that I am working) and corn on the cob (way too early in the season for it to be good). Now, we're watching video from about 20 years ago taken at Mark's parents' place in Canada and just relaxing. What a blessing!

And speaking of blessings... one year ago today, we stood before a judge in Sevastopol, Ukraine and were given the gift of parenthood a second time. Dima became Matthew Dmitriy Hansen - a wanted child, much loved son/grandson/nephew/friend! Today is a special day, indeed!!


 The courthouse

Then

Now - I love you precious boy!

Friday, July 6, 2012

Natalia

Ok... this is very weird!! I posted this entry Friday night (7/6) and many of you looked at it. Somehow, it disappeared and went back to draft form with much of what I had posted gone, including the pics of Natalia. Not sure what is up with that...
What I originally wrote is in black, I'll try to re-write the rest in blue. :-(

I was looking back at old entries from our blog tonight. Last year at this time, we were in Ukraine. On our way there, I met Teresa, the director of His Kids Too - a non-profit Christian organization that serves orphans, street children, poor, and disabled in Ukraine.


Teresa spoke to me about the horrors of institutionalization and shared a video with me that broke my heart. I was watching that video tonight and all of a sudden a face jumped out at me. A little girl that I had seen before. But where? All of  sudden, I remembered.

She was one of my Love Note recipients. I hurried to the Reece's Rainbow page to see if I was right. There she was - Natalia!!

Oh my heart... the short hair, those striking eyes, the beautiful red lips - she reminds me so much of my sweet Maia now! This picture was taken in 2010.

This photo was taken earlier this year and hides what the video does not.  I'm not sure when the video was taken, but given the hair - I think it was around the same time as the first photo. The video shows a full length picture of Natalia. Her legs are deformed (accd to the RR site, she had a fracture which was not set correctly) and she appears very malnourished.

My heart breaks for this precious girl who is in an institution that is NOT a good place! She is said to be a smart child. But institutions rob children of their life. One of the statisitcs I came across a while ago (sorry, I don't remember where to quote the source) stated that children tend to live an average of seven years once they are institutionalized. I've seen pictures of kids before and after they are transferred to institutions. It is appalling. No child should be in these types of situations. Every child should know the love of a forever family.

Natalia is heavy on my heart - are you her forever family? Would you join me in praying for this precious angel?

Click here to see the video from His Kids Too - Natalia is at 3:38

And click here for the link to Natalia's RR page.

Love this song!

Although the acute crisis of Maia's illness is over, I still feel a bit as if we are in the storm - or perhaps just the aftermath. Whatever it is... this song is so personal to me right now. And since my playlist no longer works (copyright issues have forced the site to discontinue this service), I will share this video and music with you.

BTW - if anyone knows of a free playlist service, please email me. I don't know if there is another way to add music to the site, but may have to do some investigating.

Thursday, July 5, 2012

Thankful Thursday

Part of me felt like skipping today's post. I wasn't really "feeling it." It's been a hard day. Nothing "bad" happened, but... just because. I could bore you with all the little things that added up to leave me in tears several times tonight, but believe me, it's better that I don't. I want to feel sorry for myself, but the truth is that there are others who are faced with situations that are much more difficult than mine is. 

So, I need to be thankful. I need to acknowledge that I serve a God who is faithful, who blesses us in the midst of difficult times - IF we take a moment to look past ourselves and our situations. I don't guarantee that I won't let my sadness back in later, but there are reasons to be thankful.
  • I am thankful that God chose Mark and I to be parents to two beautiful children. He created just the perfect circumstances for us to be a forever family. If Maia had been born without spina bifida and hydrocephaly, her birth parents would not have given her up. If Matthew's birth mother had not left him alone in her apartment on that specific day, he would not have crawled up on the window sill and fallen out - sustaining an injury to his brain. He is an adorable kid. Without that injury, Matthew would have been immediately scooped up by a family in Ukraine. Yet, God in His perfect wisdom allowed those things to happen and chose US to be Matthew and Maia's parents. I don't know why He felt like we were the best parents for them, but He did. And who am I to question His judgement? I just get the privilege of being "mommy."
  • I am thankful for tears. They are proof that I am human, that I am not immune to what goes on around me. I am thankful that tears allow me release the emotions that sometimes build up inside and have no place else to go. 
  • I am thankful that I can pray for friends who are facing times of uncertainty, struggling with health issues, dealing with loss. Thankful that for the privilege of lifting them up before my Heavenly Father who is the author of their stories, and the divine Healer.
  • I am beyond thrilled and praising God that dear friends from our church will soon be traveling to bring home a little boy from Ukraine. It has been such a blessing to watch their story unfold and we can't wait to see what happens next!
  • Again, I am thankful for those of you who follow our blog and lift us up in prayer. To know that there are people who continue to do so even though the "crisis" is over means so much to Mark and I. 
What are you thankful for today??

Wednesday, July 4, 2012

Happy 4th of July!

I had planned to get a pic of the kids and I in our patiotic garb, but it just didn't happen. Go figure - lol!  I hope that you all had a wonderful 4th of July and took a few moments to think about what it means to live in a country where we are so privileged and often take for granted the freedom that others may never know.

Our day was really pretty uneventful, but somehow I am still exhausted. We were lazy getting moving this morning but did manage to get out for a little exercise this morning before it became unbearably hot. Mark pushed Maia on her trike while I rode my bike and Matthew drove his tractor. My friend Del came over for a visit and blessed us with a wonderful meal. After she left, we took a very short nap before Matthew and Mark went outside to play water games. My parents visited and we had an awesome July 4th meal of brats, spinach salad, fresh fruit, and baked beans with red, white, and blue cupcakes for dessert (Matthew LOVED them - thanks Keith and Linda!). So yummy and I didn't have to do anything other than heat up the food and put it on the table.

Matthew and I spent a little time outside playing after dinner before we got the kids ready for bed. And I'm ready to follow them. Boring post, I know...I'm just pooped. Would have loved to see the fireworks tonight, but since it's back to work in the morning - not going to happen.

Anyway... more soon, happy 4th!!


Tuesday, July 3, 2012

Tuesday's thoughts

I know that I only worked one day, but it was sure nice to have today off. Both kids had therapy this morning.  I took Matthew to speech therapy. He goes once a week and has been going for about two months now. We have really seen progress in Matthew's speech over the past month or so. And this is in spite of the fact that we have not been very consistent in working with him while Maia was hospitalized. So, we are praying that now that we have the ability to focus on his speech a little more, we will see even more improvement. Because of the neglect Matthew experienced in his first years of life, he did not develop some of the language sounds that you and I take for granted. For example, the word "cold" is pronounced "cone." He isn't able to say "th." But, sounds and pronunciations are coming. He's starting to be able to pronounce the "w" and "l" sounds and I usually do a happy dance for him when he remembers to do that on his own.  ;-)

Mark took Maia to PT and OT while Matthew and I had some "us" time. Her last appointment was Thursday of last week (OT) and Wednesday of last week (PT). Both therapists feel like Maia is making progress with her balance and strength - YAY! I have to again say how appreciative I am of Dr. D. Even though Maia is no longer under his care, he continues to be available to us when Maia is at her therapy appointments. I was concerned about two new scabbed areas on Maia's scalp that are at surgery/incision sites. Dr. D saw Maia today and although he was not urgently concerned, advised continued close monitoring. We follow up with Dr. S next week (Maia's regular spina bifida doc and the one who arranged for her to go to inpatient rehab). 

We had lunch at Mark's parents' and were able to spend a few hours with his sister Sandy which was nice. I think the last time we got together was around Easter. After coming home, Matthew and I had a water fight while Mark and Maia stayed cool inside. 

Quiet evening at home which was wonderful. Tomorrow, we plan to lay low. It's been so warm that I'm reluctant to plan much outside. Matthew can't swim right now because of his surgical incision (no submerging the area on water) and I do have to admit that we might have been a bit "rowdy" during our water fight. But, he had fun. Anyway... may consider finding a parade tomorrow, although Matthew's vote is for a movie. :-)

I had a couple of thoughts roaming around in my head for tonight's post, but I can only remember one - go figure! One of our new blog friends, Pat, left a comment yesterday that included the statement "If three months ago someone had presented you with the scenario you now find yourselves in, you would probably have said "No thanks, we could not manage that."

Pat, you made me stop and think... Yep, you pretty much nailed it on the head. It's a reminder that there is a reason God doesn't show us what our whole life is going to look like at one time. Can you imagine how overwhelming that would be? If I'd known that this was going to be Maia's journey, I would have said "No thanks, God." I don't mean that to say that I wouldn't have wanted to adopt Maia - absolutely NOT, she's our girl! But, I'm pretty sure I wouldn't have said, "Bring it (the last seven weeks) on!" either. 

However, here we are with life totally different than Mark or I ever expected. And we do believe that God has a purpose in this situation. So hopefully as the next days/weeks/months unfold, we will continue to be open to what He has planned for us. And I pray that I will be able to accept welcome whatever circumstances He brings our way with grace, trust and faith in my Heavenly Father. His plan is perfect and as I know so well, He can create beauty from ashes. Since he is able to do that and so much more, just think what God can do with such a beautiful, precious girl... 


and an absolutely adorable, melt my heart boy!!


Monday, July 2, 2012

The ups and downs of Monday

Monday came too fast. I wasn't ready for it. I savored each moment of the weekend, knowing that it wouldn't last and that I would be heading back to work this morning. But, I was still incredibly sad last night. Mark tries to understand, but he's a guy. And as much as I love him, he is not a particularly emotional guy at that. So the fact that I was in tears about wanting to be home with Maia just did not make sense to him. I didn't sleep well last night and was up early this morning.

Work itself kept me busy. I was glad to see my patients and didn't lack for issues to deal with. It pretty much felt like I had left work on Friday afternoon and came back the following Monday. One of my co-workers dropped me an email welcoming me back and offering her support which was nice. The day passed quickly and I was able to wrap up the essential stuff before heading home.

Arriving home was really the hardest. Seven weeks ago, my precious kiddos were watching for me at the window when I pulled in the driveway. I would hear them squealing with excitement when I got out of the car. And by the time I walked through the front door, they would be at the top of the stairs waiting for me. Today, I walked in the house and Mathew said "hi" but he wasn't too interested in seeing me. Maia was sitting on the floor and didn't show much recognition or emotion. When I picked her up, she didn't enjoy that at all and just wanted to be away. It's hard. My heart hurt so... missing those daily moments with the kids that I treasure. 

On the positive side, Maia had an appointment with the dietician this afternoon. She has not lost any weight since coming home from the hospital. We haven't been using the nutritional supplements and her appetite is improving. Tonight, she ate meatloaf, mashed potatoes, and carrots. Last night, orange chicken, carrots, and fruit. It's wonderful to see her enjoying food a bit more! 

After dinner, she and I were sitting at the table. She knocked over a glass and was so proud of herself. So, we spent about 10 minutes with me stacking things up and Maia VERY purposefully knocking them over. Her movements are still very large and non-specific, but still...That's progress!! 

Matthew is healing well which is good and bad. I'm so happy that he is feeling better, but it makes keeping him quiet that much more difficult. Trying to get creative with activities that burn off a little energy without contradicting the surgeon's recommendations. 

He gave me one of those "Awww" moments tonight. Our bedtime story was about Daniel in the lions' den. As I was reading about the lions, Matthew looked so worried when we got to the page about the king putting Daniel in the den. This got a little better when we finished the story and he saw the lions with their mouths closed and Daniel out of the den and ok. When we were saying prayers, Matthew said "Thank you God and Jesus for stopping the lions." Oh, that boy! He can frustrate me so much one minute and melt my heart the next. Yep, God blessed me by answering my prayers to bring him home.

Tomorrow, Maia has therapy (PT and OT) and Matthew has speech therapy. Busy morning and I think we will try to have a quiet afternoon, being lazy at home.

Thank you for your prayers for my day - I felt them and they made such a difference! You are wonderful and a true blessing to us!

Sunday, July 1, 2012

Sunday musings

We had a nice day. Got up and got the kids ready for church. Well... Matthew gets himself ready with prompts and reminders. Actually, I think we may get ready a little quicker when not waiting for Maia to do things in her time - lol! We made it to church with time to spare which is a rare thing for us. One of the things that we appreciate about SZ is that there are usually others pulling into the lot at the last minute, just like we are. :-)

It was a wonderful thing to be back at church. To be honest, I had a knot in my stomach as we parked. Crazy, right?? In thinking about it, the best way I can describe it is comparing this to after Bob died. There were all of those "firsts" that I had to experience. Today was one of the "firsts" after Maia's illness. It had nothing to do with the type of reception I expected. It has more to do with doing all of those things that we used to take for granted, things that were part of our routine, that didn't differ a whole lot. I was afraid that going back to church was going to be "different."

And in a way, it was. But really, it was more the same than different. To feel the welcome of our church family and be able to thank them for their prayers and support was great! God's presence is so tangible in our church, I don't know how to describe it. From the time that we first visited, I felt His peace and love surround me. That hasn't changed. Anyway... I'm getting off track. As soon as we walked into the building, I forgot any sense of tension. Really, the only thing that has changed is the technical details - going in a different entrance, Mark and Maia riding up the lift to the sanctuary, etc. We went up front for communion just like always, yes - we walked a little slower and Mark had to help Maia walk. But, we went up as a family. Oh, I'm not doing a very good job of explaining it but bottom line... it was good!

Had a pretty lazy afternoon. Mark took Matthew to see a little of the tractor pull at a nearby town's old time celebration. Maia and I stayed where it was cool and we all took a little nap. I managed to get a little bit of cleaning done. Still a LONG way to go, but I'm not quite so discouraged with how much of a mess the house is. ;-)

Enjoyed another wonderful dinner which we were blessed with by someone from our church. Mark and I are truly humbled by this outpouring of support from friends and family.

At church this morning, there were so many requests for prayer for people going through difficult times. It's hard to hear that so many people are struggling and suffering. The song that was sung during our special music time talked about how God is there during our day and our night, our mountain tops and valleys. And He IS. Even during the times when I can't feel His presence, I know and trust that He is with me. God is constant in the midst of the storms that go on around us. He is unchanging. And even though things don't always make sense in this world, in the heavenly realm, God's plan is perfect. He doesn't make mistakes. It is our human nature that does not allow us to see the big picture. But, he is putting all of the pieces together and one day (even if it isn't until we get to heaven), we will see His purpose in the things that happen in our lives. In the meantime, God is enough. He is enough.

Oops, almost forgot to leave you with a couple of pics.  And would you pray for us tomorrow - as I go back to work and Mark has to work on figuring out his new "norm" for the days?