I am NOT one to ask for a hand out, but I will admit that life is TOUGH sometimes and we can all use a little help from time to time. If you feel lead to bless us with financial help for medical related expenses, this is a safe way to do it.
As busy as I have been with everything Nathaniel related (and yes, I owe you all an update SOON like..) things are still moving forward with the closing of my business. And actually, God has confirmed even more to my heart in the last two weeks, that closing Butterfly is what I need to do for my family. So check it out... and if you need anything and are not local I would love to help you out and ship it to you!
(shhh.... want in on a little secret too?? I have Ergos left... so if you need an Ergo, or know someone who does let me know! I would love to get these great items into the hands of someone who would be blessed by them! I lived in my Ergo for years....)
If you read the previous post, then you know that Nathaniel has a raging infection in his foot. After I wrote that post, it was decided that waiting around in the hospital for lab results to come back was not necessary. The MRI showed a clear infection, but only a shadow on the bone, not really an infection in it yet. So we had to wait the 48 to 72 hours for the sensitivities on the blood work to grow out. So it was decided that Nat needed to be at his specialists appointments on Friday at UCSF and we were released.
We headed home and I cleaned the car, packed for the trip and got everything ready (after all that had been on the agenda for Thursday, but we sat in the hospital all day!). I also finished a VERY important order for a customer that I had put off to the 11th hour (pictures to come some time!) and tried to get a bit of sleep. We left at 5 am to head up to UCSF for a long string of appointments.
First up was an ultrasound of Nathaniel's kidneys and bladder. I am not sure why these used to be normal ultrasounds are making me a crazy worry type mommy these days, but they are. In April the ultrasound was not good, and Friday wasn't great either. It seems like Nathaniel has some sort of calcified growth on his bladder, near the opening where he drains. At this point we are making careful notes of it and watching it closely. It also seems that Nathaniel has a large amount of debris in his bladder between catheterizations. He is very small, so we use a fairly small catheter, but the urology team decided we will try a larger catheter and see if that helps he debris go away better. He has not had any infections for months, but the debris could make infections quicker to onset and that is not good. It was also decided that it is time for Nat to have a urodynamics test done. Oh joy. I am NOT a fan of those tests, but it looks like we will be heading back to UCSF in the next 6-8 weeks to have it done. I was reminded that it has been since 2007 since we had one (really?? I does not feel that long ago!) and that we need to keep track of things. So I guess, in the name of being a good mommy, I will make another 500 mile trip for this test I hate :)
Next up was Infectious Disease Clinic, where they took one look at Nat's foot and made appointments for us at Ortho Clinic and Plastic Surgery Clinic. Really? Plastic Surgery?? WHY??? Because I guess there is no longer a Wound Care Clinic, it is now taken care of in the plastic surgery clinic.Of course, that makes so much sense.... whatever! Anyways, IDC says that the wound was clearly an internal infection that HAD TO come out, and with children that have Nathaniel's other health conditions this has to be treated seriously and aggressively. Fun times.
Next up was the appointment at Spina Bifida Clinic.
Had a great talk with Nuero about a bunch of the research I have been doing on brain processing issues, how Nathaniel learns, and best ways to test and support him. I loved this exchange: Me: "I know Nat doesn't have hydro, but he shows many of the symptoms and behaviors of someone who does, is it possible that we are seeing residual damage from the sever hydro he had inter uterine?" Dr: "He has Spina Bifida, do we really have to label WHY his brain works different? All kids with SB have processing issues to some degree." Me: "Yes, I understand that, but how do I get agencies to help him and support him without the labels?" Dr: "Are they so dumb that they can't see it?" Yea.... the difference between doctors and people who get SB, and those who don't. Unfortunately I have many who don't in my life, and I need the testing and the labels to access the services. So the sweet doctor gave me a nice long list of tests, which was pretty much on board with what I was thinking needed done!
Physical Therapy and Internal Medicine came in together. Now I really adore these two women. They are always so great at helping, trouble shooting and give real answers! They both looked at the foot, scooped Nat up and trotted off to Ortho with him. Ortho is NOT my favorite person there. Actually I try to avoid her at all costs! I have a Ortho that we adore here at home, and the one there drives me around the bend, but this day it was unavoidable that we saw her. She is severely ADHD (my diagnosis for her behavior!) and can't sit still, can't just see one patient at a time and can't give the same answer twice. Ugh. But she was not happy with the wound. told us the things we already knew (stay off of it, get it clean somehow and make it better), well DUH! At least we talked her out of the casting that she wanted to do, because last time that was DISASTROUS! Then we were bundled back to SB Clinic.
Your head spinning yet? Mine was by this time. I was tired (I slept little, and drove 240 miles to get there that morning!). I was worried about my little man. And I was trying to make sure everything that needed done while we were there got done.
Now, even though we weren't done with SC Clinic, we needed to head up to Plastic Surgery Clinic, because they closed first. We were the very last patient seen there, but that made it nice and quiet. The doctors took one look at the foot and decided that draining was probably a good idea. They got everything prepped, and made me sign all of the surgical papers, but it was so surreal. I mean we were going to do a surgical procedure right there in the clinic office. Nat has very limited sensation in his feet, so they only did a lidicane numbing, and the sweet boy laid in my lap while the surgery was done. What a freaking trip! As soon as they made the first cut this totally AWFUL smell filled the whole room. I know I am sensitive to smells but I looked around and everyone was holding their breaths. It smelled like the worst hospital sick you have ever smelled, like death of the tissues and all I could think was "get that death out of my baby boy!" I was cradling Nat in my lap, singing him "Lord I life Your Name on High" with tears streaming down my face BEGGING the Lord to help the doctors get all of that nasty out of my little man. It was awful. At one point I heard the lead doctor say to one of the residents, "It didn't look this bad, but with kids like this you can never tell, that is why we are aggressive. This is REALLY bad." I am so glad that I was persistent and kept asking for people to treat him aggressively. I can't even imagine what would have happened if all that nasty stayed in him! Overall, he procedure was about and hour and a half, and Nat has a large deep hole in the bottom of his foot now. A hole that needs the dressing changed and packed on twice a day every day.... do you hear me weeping? Nat is in a lot of pain now, but already I am seeing improvements in his health.
After all of this we headed back down to finish SB Clinic. Everyone was happy to hear that the wound was drained, and that it WAS as bad as we were thinking so it is good we treated it. Urology came back in again and they want us to also do a clean out and restart Miralex. I could have cried on the spot. I HATE clean outs. I HATE Miralex. It makes Nat so loose and we have never found a dosage that works for him. After all that we had been through this day that was NOT the news I wanted to hear. I will follow doctor's orders.... but they didn't tell me WHEN to do this, so I figure we can get a little stable first, right? SO not looking forward to this ... again. Sigh. But with that charming news, and a final check by PT and Dr H, we were released to head home. Appointments started at 10 am, and at 4:30 pm we were told we were done. What a day. For anyone who has never had to do clinic..... it sucks, it is overwhelming for mommy, it is long and tiring for patients and the information overload is unimaginable until you have been there. But it IS better than waiting to see each of those doctors individually.
We piled back in the car and headed south.... 240 miles south back to home. On the way home we stopped in Salinas to eat dinner (a SPECIAL treat of Outback, since we had a gift card!) and I got stuck in a DUI check point. Seriously. I told the officer, really dude I have NOT had a drink (although it would have helped at many points!) but I have been through a week of HELL... that is why I can't walk a straight line! I also thought we were going to run out of gas at one point. I was gifted with gas cards that paid for almost all of the gas to get there and back (thank you so much Lord!!) but I was looking for a station that I usually don't look for... it was funny. But we made it, with a FEW miles to spare, we found one! All in all, we rolled back into the house at 11:30 pm, a mere 18 hours after we left that morning. Oy Vhey!
So far the worst part of all of this (besides the exhaustion) has been the wound packing and dressing. I am SURE that the Lord has me confused with someone else. I am NOT nurse material. For most of my life I have passed out at the sight of needles in skin, I throw up at any random gross smell and I have the weakest stomach in town. But somehow I have this darling son who needs all of this special care. I get to catheterize him every 2.5 hours all day every day. He is 10 and still has regular BM accidents. He spent 3+ years vomiting EVERY time he ate something. And now he has this hole in the bottom of his foot that has to have this gauze dressing stuffed into it twice a day every day. First comes the undressing, removing the bandages and pulling out the packing. Picture 1/4 inch wide gauze all soaked through with blood and puss being pulled out like a 3 inch long snake from the bottom of his foot. Gross hu? Then I get the great joy of trying to stuff the clean piece of packing back in there. Oh man. I think I am going to loose A LOT of weight in this process. The first time Saturday morning only took 45 minutes, and I only got sick 3 times in those 45 minutes! (good thing I thought to clean the toilet first!) Things have got a little better, but it still takes me at least a half an hour and I have yet to do it without getting sick. Thank you lord for growing me in this way.... NOT! Dude! Don't we go through enough on a daily basis without this??
Saturday was low key, as we kept Nathaniel down and I tried to get some work done at the store (I hadn't been at the store since Monday!). Nat did well and I could see him getting stronger throughout the day. Sunday was even more low key. I was so tired that I could hardly keep my eyes open. I did make it to church, which was nice, but after that I headed back home, where I crawled into my jammies and we watched movies and napped all day. Nat did complain A LOT of pain, but I tried to keep him as comfortable as I could. Today we head into the pediatrician's office first thing to check out those labs. There is still a strong chance that we will need a PICC line today (praying for the Lord's will in this!).
So now that you are all caught up to where we are currently, we are going to head off to the doctor's office and see what the next chapter in this journey will bring.
Yea... you thought I wasn't writing because I have been busy hu?
Well you are right .... sort of. I have been SLAMMED with storms in every direction this week. I am clinging to the cross, praying for a light of hope in all of this.
So I am sitting at the local hospital with my son, who is admitted as an in patient right now with a raging infection. So NOT where I thought I would be today.... wanna hear how we got here?
On Monday when I took Nat's braces off his feet were fine. On Tuesday one of our In Home Counselors put his braces on, so I don't know what it looked like but I am sure the foot was fine, he would have noticed it being weird. Tuesday afternoon at physical therapy I took his braces off and his right foot was WRONG. Swollen, hot, yellow.... justt wrong. So off the the ER we headed to have it checked out.
Tuesday at the ER his blood levels were moderate, not normal but not sky high either, and the X Ray and Ultrasound looked ok. Nothing jumped right out at us, even though his foot looked very wrong! So we got some antibiotics and headed home with directions to follow up with our pediatrician and ortho Wednesday.
Wednesday was already booked to the hilt, but we juggled, rearranged and adapted. I dropped the kids off at school (it's an infection INSIDE his leg or foot, that doesn't bother his brain and is not contagious, right?) and headed into town.
First up was an appointment with the behavior specialist at 9 am. He is great and has been a huge help at getting real plans in place for behaviors, but he sort of talks A LOT! I knew I was tired from being in the ER half the night, so I made sure to grab a LARGE coffee before hitting his office. At 10:30 I finally finished there.
Next up, at 11 we had what I called the "cast of a million" meeting. This was a REALLY important inter agency meeting to help determine the direction we need to head for services for Nathaniel. This whole subject is really something that I have been wanting to share my heart on, but not right now.... too tired! But let me just say this: I have been doing some HUGE heart searching and assessing what Nathaniel needs to have the best quality of life and I have come to the conclusion that the direction we have been heading is not best for him. This has been a really hard place to come to, but I decided that it was time to make my heart and my vision for Nathaniel heard to these agencies that have such different ideas. I am so thankful that I had a team of prayer warriors behind me and such great advocates surrounding me, because of this I really felt like my families voice was heard and I felt the tide turning. No way are where I think we should be yet, but I saw minds opening up and that was a small victory to me! This meeting went from 11 to 1ish. LONG and mind mushing time, but productive too.
Next on the agenda is an appointment with our FABULOUS pediatrician at 1:45. But in order to make that appointment I really needed the boy with me right? So I had to run back home (20 minutes away..) get Nathaniel from school and head back into town (another 20 mins..), that was a quick turn around trip. Dr B saw Nathaniel's foot and was just as concerned as I was about the severity of the swelling and the quickness of the onset. We discussed options then decided to see what the ortho had to say (and he was next at 3 another 30 minutes south of where we were!).
Audrey was dropped off to us at the pediatrician's office and we all headed down to the ortho's office. There, again, the doctor was concerned with the looks of Nathaniel's foot. In the office he tried to draw fluid from the area that looked the worst and see how the blood looked, but the wound seemed ok. No puss. No fluid. Fresh red blood. So he ordered an MRI so that we could see what was going on inside and told us to keep up with the oral antibiotic.
So, after a full day of appointments and stuff we were heading back home with not much more knowledge than we had had that morning. I was tired. I was worried. I was frustrated. But I was glad to be heading home. At home we were blesses with a YUMMY dinner delivered by a dear friend's family. I was so blesses by Nicole and Robbie and the delicious food they brought over. I decided that I would be able to keep my eyes open for small group, so I headed back out, while the kids stayed home with two staff members.
Small group was a huge blessing to me last night. The book discussion was good, the company wonderful and the break from my reality divine! But I think one thing touched my heart more than anything else... there is a young couple in the group, and they have a very young little baby that comes to group with them. I think it is GREAT that they are able to bring her to group and it reminds me of when Audrey was a little babe. But the really cool thing was that members of the group felt comfortable taking the baby and holding her. What a blessing to that mom to be able to see her darling girl and know she was safe, but sit back and relax in the company of friends too. The other cool thing was seeing that young daddy with his little girl! It melts my heart to see involved dads. Family and friends, comfort and acceptance, what a blessed time.
After the break from my reality, it was back home and checking wounds. I was concerned about how bad it looked, but willing to wait until morning to see if we could get the MRI scheduled. This morning when I check the wound I wasn't very happy, and NOT willing to wait any longer! The swelling had increased, the temperature was up and Nat was in pain. But the worst part was when I touched the wound it seeped puss and blood out of it through the skin. Not exactly a good thing! So we were on the phone as soon as the pediatricians' office opened to see what could be done NOW. The answer....
Because no diagnostic center understood that EMERGENCY MRI meant it needed done TODAY, we were admitted to the local hospital to receive an MRI. So we have been hanging here, with the sweetest nursing staff around and a great hospitalist, coming up with the game plan.
By 2 pm, with FIVE sticks to get an IV in (poor kid was cursed with my collapsing veins!) a ton of labs ran and a MRI done we began the waiting game. It is amazing to me how fast things can get done here, but not if I am a plain Jane patient saying "but the Doctor said today...", but at least our needs were met! And the other good thing? While sitting here chatting with the nurses I jokingly mentioned that he had other orders in my purse from another doctor that needed done, too bad..... Guess what? They got it all done while we are sitting here today!! How cool is that? Feeling so blessed that we don't have to turn around and come back in a day or two for more tests!
Thank goodness for doctors who get HOW FAST something little can become a nightmare for my little man, and are willing to treat aggressively! And the waiting continues, but we feel blessed and loved right here in the arms of the Lord!
Thanks for your prayers for speady healing, and hopefully a safe trip to UCSF Spina Bifida clinic tomorrow!
As I sit here and reflect on things it comes to mind that there are often blessings in the dark that get overshadowed. It is so hard to always give thanks where thanks are due. And it is often even easy to forget to give thanks when you know who to thank! So I want to take a moment and point out some blessings that have come in my dark hours recently that I may or may not have thanked people for. And I especially want to give thanks to the Lord, who orchestrated all of this before I even knew there was a need! How great is our God?
These are in a totally random order... no rhyme or reason here!
Thank you to the dear brother or sister in the Lord who read a recent rant and left me groceries (including butter!) on my door step :)
Thank you to an AMAZING worship team at my church who lifts my spirit and heart each week, and introduces me to new favorite songs in addition to doing old favorites. And how blessed is our church that there are such equally AMAZING people ready to step up with the regular leader is gone? So blessed are we!
Thank you to two sets of WONDERFUL friends who loaned me their season passes to Monterey Bay Aquarium, which made it possible for me to take all of the kids there at the end of the summer (yea, yea.. pictures to come). Without their thoughtfulness and kindness I could have never afforded that trip!
Thank you to a GREAT In Home team that is working their booties off to try and help my family find center. I know my son is hard.... it's interesting seeing all of your takes on the situation!
Thanks to the FABULOUS WRAP Team who has not only stepped in to help with rent, but also somehow found funding for the important things like assessments and psychiatrist appointments. Not only do they give tons of encouragement, and try to help me find solutions, they are also REAL in finding funding too! They might be intrusive and always there, but they are working their booties off to be a help to our family!
Thank you to the generous psychiatrist who has slashed his sliding scale SO LOW so that we can get the services that Nathaniel needs and I would have struggled HUGELY to afford on my own! It is nice to see professionals that are after the good of their patients and not just the all mighty dollar.
Thank you to a home group that has allowed me to join, even when my joining is weird. What a heart lead group of people that I am looking forward to getting to know better when I get out of my bubble.
Thank you to my AMAZING family partner who is real with me, supports me and lets me rant to her, then gently steers me back onto the road.
Thank you to my two wonderful friends that takes the time to send me movie lists so I stop watching the crappy ones I pick! I know they are both busy living their lives, but they take a minute or two to love on me from far far far (add a few more fars for one of them!) away!
Thank you to my WONDERFUL Respite worker for coming back from summer and being willing to work again. Oh how we missed you Miss H! :)
Thank you to the forces that be that made church happen in such a positive way for me this weekend. So blessed by each force that helped make that happen, including so many at church itself!
And while I am at it on church .... Thank you to a dear Pastor and church that has loved on my children and I in a dark dark season this year. We are so blessed to have a this "little" force with us on this journey. I mean seriously.... PR has taken it all from me, and still somehow calls me sister... THAT is heavenly love! Their love and unshakable faith is why it is SO IMPORTANT for me to find a way to be there every week that I can.
And thank you to all of my wonderful bog world friends that take time to read my heart and comment on it. I am blessed beyond words every time one of you lifts me in prayer, every time one of you sends me love and every time I read your words and hearts too. I am so thankful I found a world that somewhat gets me! Facebook and blog land are my havens right now.
Oh.. and thank you to my dear Butterfly Boutique friends that have supported us all these years and are stopping by now to tell us how they love us and will miss us. Each of the people who have supported us and encouraged us over the years mean so much to me.
Thank you to the gas cards that show up in my mail box and bless me by allowing me to transport my kids and I to our doctors appointments and work and stuff.
Thank you to the dear woman who tucks little gifts in my hand randomly at church. God times those gifts AMAZINGLY! Thank you that your heart is open to hearing those nudges.
And most of thank you to the Lord who loves us, is for us and carries us through these hard times.
So as you can see, it is easy for me to get down about the road we are on, but I am not blind to the blessing in the darkness! I am so blessed by those that surround my family.
*DISCLAIMER!!! This post is NOT about anyone besides ME, it is about MY feelings, MY insecurities and MY attempt to better where I am. I LOVE my church, I LOVE my Pastor. I HIGHLY RESPECT the children's director at our church. This is about MY struggle... and maybe to encourage any other moms like me out there that it is OK to take care of your needs in ways that some others might disagree with. This is MY side of what is happening"
The battle of identities rages on here in my world!
Do you know what I mean?
Sometimes the many different hats we wear every day battle over which one is going to get worn. Sometimes even, what you need for one thing is a direct contradiction for what you need for another thing. It is always so hard to choose which thing looses! And when one of the losers could potentially be one of the members of my family... even harder!
Confused yet? Well let me explain!
I work my a#$ off everyday for my children. Both of them really, but one of them takes the lion's share of my time and energy. It just is. That is life with a special needs child. But what REALLY gets lost in the shuffle is ME! My needs go unmet, my desires are shelved, and my focus is outward. And that is ok sometimes. I get that there are seasons in life where our children's needs overshadow our own. But when it happens day in and day out, then we loose the energy it takes to be what our children need.
This has been happening to me a A LOT recently.
If you read here regularly, then you know I have been rather random with my posts, and that I am running like a month behind in posting pictures of things we have done. It breaks my heart because this refuels my soul, but time has just NOT been there.
I also have had a hard time keeping up with friends and that drains me. Some of it is inevitable, one of my best friends is living in a different country and has a ton going on in his own life. Another is far away in another state and I haven't been on line much so we haven't talked as much. Yet another has suffer a series of huge losses in her own life... it's just that way. But some of it is me. I am too tired to log onto the computer, or read blogs of friends, or pick up the phone (this is the WORST one recently!). And part of it is my selfishness... I really crave those friends that seem to b the MOST unreachable right now!
And there is my morning routine. I am usually so faithful to the cup of coffee, smoke and Bible time, followed by am bowel routine for Nathaniel, followed by a work out for me before my "day" starts. But I have been so physically exhausted that I am lucky to drag my booty out of bed for am bowel routine, and Bible time seems to be sitting on the stool in the bathroom with Nathaniel supervising him, and don't even mention my coffee (which I am STILL drinking and it is well after noon!)... not good! Not good physically for my body to not work out, not good spiritually for my soul not to have that deep grounding time daily.
But I think the worst has been church time. And this has NOTHING to do with my church (which I LOVE) and everything to do with how everything in my life seems to be a struggle right now.
I have joined a new small group... and if you know how much people scare the crap out of me, then you know that this step in itself is huge. But it is something I KNOW God is calling me to do, and I actually feel pretty safe with this group (or as safe as I feel with ANY people!) But add to it the factor of having care for BOTH children while I am there (because this single mom things SUCKS!) and it's monumental! Not monumental that I am there, or anything bad about the group, but just that it takes so much WORK for me to get htere. Care for small group time entails TWO adults for the children! One In Home Behavior Support person for Nathaniel and his theatrics, and one respite provider for the regular care of the kids.... and I still have not gone one 2 hour small group meeting without receiving AT LEAST 5 text messages.. Oh Vey! Hard to concentrate and make meaningful connections when my kids keep pulling at me, but again, I know it is where the Lord has directed me to be.
But that hasn't been the worst of it. Church... that little segment of time on Sunday mornings has been pure hell. Now don't get me wrong.. I LOVE my church. I liek the people there. I NEED church, I know I do and I feel it when I miss. And most iportantly, it is NOT the church's fault that things are so hard for me, it's just one of those things that is.Some times life just is... not a good is, not a bad is, just an is.
I am one of those silly moms that believes that church is a family thing. This is all me. You know.. full blown Little House on the Prairie thing, with kids in their "Sunday best" sitting in church with mom and dad? Yup... that is what I think is best for families! But..... it's HARD! And dang it, I need that time to recharge my SOUL and MY HEART! So take that pretty picture, change the mom and dad to just mom, and add in a church (that I LOVE!!) where most of the kids head off to Sunday School and then throw into the mix Nathaniel and all of his specialness. It has been HARD! I love hearing my kids voices raised in praise and worship with the rest of the congregation. I love talking about what Pastor Randy (who is an AMAZING Pastor, but who Audrey calls "that silly man who talks too much") said that day. And I love hearing what their little ears pick up. But I don't love the constant tugs on my clothes, or the days when Nathaniel just melts, or the 600 times Audrey has to go to the bathroom during service, or the "whisper" arguments that they get in with each other. None of that leads to a positive refueling time for me.
So I have tried the Sunday School thing. We have a WONDERFUL woman who is in charge of Sunday School, and man does she have a heart and passion for teaching the kids. But none of them are trained to deal with Nathaniel. (I mean come on, it's a church of like 200.. of course I don't expect them to have the training.) But a few times that I have talked to them and put Nathaniel in there is has been so hard! Like there is one Sunday School teacher that we see in the market sometimes, and both of my children freak out just seeing her. ??? Wow!!! One time with her, and they are so freaked that one cried uncontrollably and the other completely shuts off?? Geesh! But again, these poor people have no idea how to help this child.
I love Nathaniel, but sometimes it is hard to meet my needs with him. He is in a totally inclusive school, where he is around mainstream children all the time, even in some mainstream classes. He goes to the park and plays sports and does so much with mainstream children. I DO NOT treat him like an outcast at all! But sometimes I need his needs taken care of on a lower level so I can take care of myself too.
But this is REALLY about ME. I NEED to refuel. I NEED to be around other believers and connect with them. I need the breathe of the Holly Spirit that is found in the company of other believers. And I can't do that in full blown mom mode, nor can I do it when my special kid is melting. This is not so much about what Nat needs, but more about supporting Nat for a short time so that I can get what I need to make it through the rest of the week.
So I have been pounding my head against the wall on this issue for a LONG time. I have tried so many things, and prayed long and hard over it. I have found I am spending more time, thoughts and energy on HOW I can get to church than I actually am spending AT church! Crazy.
So I did it this weekend.
I bit the bullet.
I hired my respite person the come to the house to watch Nathaniel while Audrey and I headed off to church. And I cried while driving away. I felt like a horible mom. I felt bad for being selfish. I felt like Nat would think I loved him less or some none sense like that.
But the truth?
It was WONDERFUL!!!
Nat had a BLAST with his respite worker. They took our dog for a walk down by the bay (that we now live so close too that we can smell and hear it all the time!). They played baseball in the yard. They shot hoops. Nat was in a GREAT mood when we got home, all smiles and love for us.
Audrey had a bit harder time. She wanted to hang out with the respite worker and sort of felt like I was punishing her taking her with me. But we talked about it, and I told her how good church makes me feel, how much I feel the Holy Spirit when we are there. She LOVED to dance and sing with me (although she is CONVINCED that Gary told her she can dance on stage next week??? What did I miss???). She did ok through message (although she still thinks Pastor Randy is silly and talks too much :) ) They we went out to a Mommy and Audrey lunch, where I told her what a great job she is doing with her brother, with the tough situations and with all of the change. She DUG it, and I loved being able to build her up away from Nathaniel where I wouldn't worry abou him feeling like I was tearing him down.
And me... I got to refuel. I got to recharge. I felt wonderful. When one friend asked me where Nathaniel was and I was actually kind of scarred to answer. I had such a needed time of recharging that I didn't want any negative to knock me down. But I took a deep breathe and explained where Nathaniel was and why. And you know what? Bless his heart, S lifted me up for being smart enough to take care of myself too! Oh, I bet he didn't know what to make of those tears in my eyes when he said that, but they were good tears, I promise. Tears of relief that SOMEONE understood what I needed. And tears that I was supported in doing what I needed to take a few minutes to take care of myself.
So this might not be the norm every weekend. Actually, I know it won't be every weekend. But I think it will be pretty often. Some time of recharging with the kids, and some time just for me. And no matter the fear that someone is going to call me selfish, or say that I am excluding my son, or some other crap, I AM going to take this time for ME. Because in addition to being a single mom of two beautiful children, one of whom has some extreme needs, I am also a daughter of Christ that needs some time in His holy house with my brothers and sisters in Him! And how hard I struggled over this, but how simple and full of blessing the answer was. Oh the identities that battle!
Knock me down if you must....
But remember, we never really know what another is going through until we try to walk a mile in their shoes!
Wanna trade for a week and see what you think then?
Saturday was Auction... time to say goodbye to the projects that they raised all year long.
Josie in the Auction ring...
And Josie thanking her buyer :)
Brianna in the Auction Ring..
Notice anything about Brianna's auctioneer???
It's a woman!
Funny since we always say that Brianna talks enough to be an auctioneer!
And Brianna thanking her buyer!
I was in the mood to take pictures of things that caught my attention on the grounds this day.
It is kind of ironic since I know these grounds sooooooo well....
But I really do think this is a beautiful fair grounds....
And this is for all of you who think she is all sugar and sweetness....
THIS is a typical Audrey face!!!
Brother and sister getting ready for some more Mutton Busting...
I think this was their favorite thing at the fair this year!
It took some MAJOR finagling, but we DID get to do the train ride that Nat so badly wanted to do!
There was no room on the train for his wheelchair, but he wanted to ride it so bad. He asked EVERY TIME we saw it. The starting point was right by the CAL Fire trucks, and one of the CAL Fire people finally offered that they would protect his chair for us while we rode. So nice of them...
Sunday, the final day of the fair was finally Audrey's turn in the show ring.
This is a little last minute practicing. She is such an animal girl! She keeps telling me that she wants to be an animal doctor when she grows up.... and I can so see it!
Such excitement to get started....
And LOVING the braid she let me do in her hair!
Strutting her stuff for the judge.
And not afraid to use that booty for something useful!
She was in an older class this year, and therefore in the ring with SO MANY 4H kids... it's almost not fair to those kids who aren't growing up on ranches every day... but she still had fun.
I loved this pose... it's so "that's my stuff, now what do you think of it?!" kinda attitude!
THAT smile tells me she had lots of fun and loved showing the pigs...
And just a little video of Audrey in action for you viewing enjoyment :)
So after this fun filled day we said good bye to the fair until next year :)
I am a complicated woman... I wear MANY hats such as Daughter of Christ, Mommy, Special Needs Mommy, Business Woman, Daughter & Sister. I live my life in the grace of God, and hope to always model His love and peace, but fall short MANY times! I hope to share a glimps of our life and welcome you into our hearts here! I look forward to being real with you and sharing my heart.
Audrey is the surpirse child that delights my heart daily! She is a happy, compasionate beyond understand, joyful child who adores the Lord and delights those around her. Audrey loves to create, whether it be a new song, an artistic creation or a silly story. She also loves to perform, and is following in Josie's footsteps as a dancer and singer. My Princess Audrey lights up my heart and reminds me daily that God is faithful and full of surprises!
Nathaniel is my darling son, the one and only boy in a gaggle of girls! He is an amazing young man with character and charisma to spare! He has a spirit that is pure and shines through to all who encounter him. But Nathaniel also has some other things that make him special too. Nathaniel was born with a sever birth defect (do you know how much I dislike that term?) called Spina Bifida. Everyday our family deals with the effects of this condition, and we all have learned to lean on the Lord to get us through the twists and turns of Spina Bifida! Nathaniel is all boy with a love for all things ball, and his new passion is surfing! Nathaniel shows wisdom and understanding beyond his years, and is such a trooper in dealing with all things Spina Bifida, and yet still living every minute of his life to the fullest in the glory of God!
Even though October and Spina Bifida Awareness Month is over, Tiffany from Growing From the Obstacles still want to continue bringing you a look at what Spina Bifida REALLY is, and the stories of our friends and family who live with it daily!!! We will feature stories of SB families and their journey every Thursday, as long as we have stories to feature! So come on over and join in!
To Tiffany and I Spina Bifida is far more than a Neural Tube Birth Defect, Spina Bifida is merely a way of live for those who live with it. (And BTW, even if that is the proper medical description of Spina Bifida, I still HATE the word defect in it, as that word implies there is something wrong with folks with Spina Bifida and we do NOT believe that! We believe these precious folks were made special for a reason.) I hope you enjoy meeting our family as much as we enjoy the honor of being able to share them with you.
(If you want to share your story with us to be featured this month please see THIS POST on how to submit it!)