Monday, October 13, 2014

Day 3: love is not selfish

"Are those all yours?!?"

"Are those twins?!?" Oh my! There's another one, triplets?!?"

"Are they all in the same family?!?"

"What are you doing here with so many?!?"

"Do you run a daycare?!?"

"Oh my, you are blessed?!?"

"It must be easier at home with so many"

And the classic, " you have got your hands full!!!"

These are just a few things said to me as I took my four kids aged 4,3,2,1 into the mall this morning.  Something I do not do on a regular basis, in fact it's been nearly a year that I have ventured out with all four by myself.  Am I crazy?!? Well, some may conclude that I am, but I wasn't there for "fun". Nor was I there for "shopping fun". For those of you who know me well, I dislike shopping.  So why did I drag all four of my kiddos to the mall this morning.  I had a little over an hour to run there and back because SuperDaddy needed the van back.  I couldn't get the quad clan folded up, so I went with two single strollers.  Not a good idea but I was on a mission. SuperDaddy and I have been under a lot of stress this year.  Lots of struggles, trials, tears, pain but in turn lots of growing! Last week,  The Lord put I on my heart to try the Love Dare with SuperDaddy. Ok, how was I going to do this.  I want to show him that I love him no matter what, unconditionally, beyond words, selflessly. But how?!?  Well, the Love dare teaches you from the heart how to show Christ's love to your spouse. I was up for the challenge. Day 1 was hard. Love is patient;  "Do not say anything negative"-it took me three days for this one.  Actually, it took a friend to tell me that I need to give myself grace, realize I cannot do it without Christ and move on to day 2 already! So thank you my dear friend! I'm sure you'll be reading this! Praising The Lord for our friendship! Day 2 love is kind, "one act of kindness"- not so bad. I gave him a massage and made him pumpkin bars. Now it brings us to today, day 3 love is not selfish- " whatever you put your time, energy, and money into will become mor important to you. It's hard to care for something you are not investing in. Along with refraining from any negative comments, BUY your spouse something that says, " I was thinking of you today."  I've been reading these before bed so that I have time to reflect on what I am suppose to day the next day. But what?!? Say that again, BUY him something! I wanted to do the dare thing right, but how was I going to buy him something TODAY! We have one van, and he needs it.  I have four kids, how do I take them all with me even if I got the van?!? He doesn't like gifts, they don't speak to him. What would. I buy him that goes above and beyond that fact?!? Excuse after excuse in my head.  Then this morning, (we were sharing a twin blanket in bed) he said I stole all the blankets fom him. "I'm. Sorry". It clicked.  I could get him a king size blanket!! Now how to get around the other obstacles. Ok. So. I asked for the van for an hour. Raced to get the kids together, still in thei pjs. Got them all bundled up and loaded in the van. Couldn't get the quad folded so I took the two singles. I planned to push 2, ergo 1, and the oldest could walk. I got this. Off we went to the mall at 9 am on a Monday!  We get there at 9!  Wait the mall doesn't open until 10!?! Uggghh!! Thankfully today is Columbus Day or some kind of holiday and you keeps was open!! Yippee, praise The Lord!!! So I'm pushing two single strollers, carrying baby, and keeping track of the four year old walking.  No hands for a cart so I attempt to get the 3year old in the stroller to hold th blanket. He kept dropping it. We finally made it to the check out as I was  humbled throughout the whole store with the above opening comments. Come on, really, you've never seen a family with four kids before?!? Why is it such a BIG DEAL to have four kids!!! Really?!? What if I said, I want more than four, would I be shunned, or stoned to death with the glare in your eyes!! Anyways, back to the story. There was no price tag, off to run back and get the price tag!! As I type this, it dawned on me, why didn't they call for a price check?!? After fumbling, dropping, screaming at the kids bc use I kept losing them as they ran away, we finally bought SuperDaddy's gift that says "I was thinking of you today."  I let the kids get a gum all and ride on a ride and then we races back to the van, get them all buckled in and realized the baby dropped his expensive straw cup full of BREASTMILK!! We stopped in at children's on the way back to the van, maybe it's there.  I called them and they found it.  So I wasn't about to unbuckle all four kids so. I did the unthinkable. I locked the van and ran back up into the mall for my BREASTMILK!!! Priceless stuff you know. And I guess the cup too. So I'm out of breathe now and so ready to be done with this love dare, but with a smile on my face I drive home. We almost got hit by a truck on Stewart because he was driving on the right side of me pretending that was a lane! Adrenaline going, I squeal my horn and lose it. Crying, I get home, hand SuperDaddy his blanket and told him Inloved him unselfishly. His words were priceless. "Thank you! What you went through speaks louder to me than the blanket itself, I love you too". Deep breathe, wipe off the tears, I did it!! Now to bring the kids in for the van and get them down for naps! They are all sleeping soundly as. I type this! Thank you Jesus. God is good all the time.  All the time, God is good!!

Romans 12:10 
"Be devoted to one another in brotherly love; give preference to one another in honor." 

I love my husband beyond words and beyond four kids at the mall with rude people! I love my God and my marriage. Thank you Steven and Alex Kendrick for the Love Dare. It is teaching me valuable lessons on love that I have never known!! If you want to be transformed I suggest you take the Love Dare!! You won't be disappointed and I'm only on day three!!!

Thursday, September 18, 2014

Blessings a plenty

 My life has been crazy this year. It seems like we start to get ahead to be knocked to our knees again.  Some times, I feel like I'm still on my knees and get hit again.  But isn't that where we should be? On Our knees before Christ.  That is exactly what my Lord has been showing me.  Time and time again, I want this and I want that. I need it this way and that way. Life needs to be in order for me to minister to others.  WRONG! I have been learning, even in the midst of the choas of my life, God can use Me and my life to minister to others.  Amazing, humbling, and brethren-taking at times.  How can my disorganized, chaotic, and crazy life minister to others?  Well, God is showing me it can and it will, and it has.  This list of chaos continues but it is incredible how God is interwoven in all of it! I crashed our van in February, in March, my adopted son was diagnosed with a horrific genetic condition that gives a "hopeless" future for him, we were in Milwaukee Children's for a month and almost lost that precious boy to a bowel obstruction; then to come home and find that my home was infested with mold and we become homeless for 2 weeks, the roof of my home was literally ripped off and replaced, then to be living in construction with four littles; four and under for four years old, with one of the children having extensive special needs, martial fights daily, exhaustion daily and the list could go on and on...why do I say all this? Am I looking for a pity party? Absolutely not! I am learning that in this culture we are to keep quiet.  Pretend we have it all together. Never ask for help. Then life will be okay.  What wrong thinking this is, very wrong!! We, as believers are called to carry each other's burdens. It is so humbling to ask for help. To admit, I don't have it all together and I can t do this life on my own.  I didn't plan on crashing my van, adopting a special need son with three very young kids of my own, or having my roof ripped off my house.  Who plans for this kind of choas.  Who can prepare themselves for such a mess all at the same time! No one can. Absolutely no one.  No one except our God! My Lord has been teaching me so much through this time.  Before this choas marched into my life, I had everyday chaos with my little family. Getting all the diapers changed (3 out of 4 are still in diapers), cleaning, making dinner, grocery shopping, etc. the everyday normal things a mother does.  I was barely making it. My house was a mess. My kids were a mess.  My marriage was becoming an even bigger mess! I'm so thankful for this real chaos that has hit us this year.  Because here is the truth!  Listen closely.  I WAS TRYING TO DO IT ON MY OWN WITHOUT CHRIST! I could not get through my everyday living on my own and I was trying. I was trying to do it alone.  Pretend nothing is wrong. I'm fine.  No help needed over here.  Until, I could no longer play the game of pride.  I needed to be taken down to my knees to see Christ work in my life. I wasn't fine.  I was not doing it on my own. I was putting a strain on my family, my marriage, and my walk with Christ.  I was holding the reigns of my life and telling God no, you cannot have it, not yet anyway.  Fast forward to today, so much has happened, God has brought me and my family through so very much.  In the middle of it; no, actually, in all of it, I was angry, bitter, and in turn very lonely. I was angry at god for allowing this stuff to consume my life, angry at my husband for all the "problems" around the house, angry at the children for not being perfect, and fed up with myself for not holding it all together.  I was broken and needed to be fixed. Last week, a friend from church came over to help me around the house.  We have been relieving helpers once in awhile from church since April. (Side-note--HUGE BLESSING) On this particular day, the house was very crowded with construction everywhere. No room to even try and clean it.  So the helper and I with the kids stayed in the playroom to try to tidy it up.  God meets us where we are at and it is incredible. God used this woman and changed my life! Graciously and lovingly told me to shaped up, humble myself, and take it all to the cross. In much nicer words of course :)  but the part that was transforming was this.  She pointed out that I was holding resentment towards my husband. What?!? Say that again, resentment? What is resentment? So like any other young mom in the era ( well maybe not, maybe I just do this) I goggled it.  What is resentment? What I found out was terrifying. Resentment is holding onto things without forgiving and there is no room for grace. What?!? Really? I have resentment towards my husband.  Oh yes I did.  The list went on and on again.  The Lord worked miracles in my heart and I let go of the resentment, and my husband forgave me.  God moment; I have TMJ of my jaw. At times, it acts up and I am in a lot of pain. Normally I would need to go to a dr to have it fixed. I don't practically care for this dr and what he does for my teeth. So I went to the chiropractor instead.  It helped with most of the pain, however, the adjustment "misaligned" my misaligned teeth that this jaw dr previously did.  I prayed, Lord, please fix my teeth, please align my teeth with your mighty powers. With no money to see this dr and terrified of him messing up my teeth more, I can't fathom going to him right now. Lord, please fix my jaw.  I kid you not, the exact moment I gave my resentment towards my man to God and asked The Lord and my husband to forgive me; that very moment in time, the tension in my jaw let loose and my teeth were aligned perfectly! Our God works in mighty ways doesn't he!?! So superDaddy and I started to communicate again on a deeper level, recommitted ourselves to loving each other in our love languages and started to have a real marriage again.  It has been awesome to say the least.  We have been intimate again, take care of the children more effectively, and even fight with humor.  Life has been good.  The difference? What's the difference between today and 9 months ago? Well, I'm glad you asked.  I stopped pretending to be perfect, I stopped pretending I had it all together.  I stopped pretending I didn't need help. I held in to bitterness and would not let it go.  I refused to listen to God. I was judgmental and pitiful. It is a moment by moment choice to put it all at the foot of the cross and walk with Christ.  Life is so much more full of Joy when one allows God to use us and to carry our burdens.  I have been learning that one mans choas and be exactly what another man needs to be ministers to.  We finally made it to Sunday morning church a few weeks ago, I put all the kids in their classrooms and went to sit down and listen to the sermon.  Only to have the pager go off!!! Ahhh!! I just wanted a moment to myself. Really?!? So I went and got our little miracle boy JoJo. He couldn't tolerate his classroom; too much stimuli for this sensory overwhelmed little guy.  So as I was in tears, another young mom asked if she could hold him so that I could go to church.  I said absolutely and took off before she could change her mind. It was nice to be ministered to.  But then she came back to me and said, "thank you for ministering to me" What?!? Excuse me.  I think you ministered to me. Thank you. What a huge blessing it was to go to church this morning. "She continued, no thank you for allowing me to see all that is going on in your life, I have much to be thankful for and I have not been. So thank you.  Wow! Isn't it incredible how God uses the broken and the weak to further his kingdom and to minster to one another.  God is good all the time.  All the time, God is good.  What a great quote from the movie God's not dead, I think I'll borrow it here! I hope my post finds you encouraged.  May god continue to use my chaos to minster to others! thank you Jesus for this wonderful day and for the incredible journey you have taken us on this year.

Sunday, August 17, 2014

Church does a weary soul good....

As I ran around the house this morning trying to get the kids ready; superDaddy working on accounting for his business, Jojo screaming, the kids smearing Cheetos all over their freshly clean church clothes;I thought "why try, why do I even bother to go to Church."  But I'm so glad I did! We made it today, we finally made it to church and it has blessed this weary mama tenfold.  Living in chaos day in and day out is physically, emotionally, and spiritually exhausting! We were in Milwaukee for a month with JoJo, home for 2 weeks,  just in time for my home to be ripped apart, extensive mold exposed, homeless for 2 weeks, to now-leaving in the middle of construction with my roof half done. We have experienced chaos after chaos. JoJo still cannot eat by mouth.  He received a Mic-key button 3 weeks ago. It wasn't working so we tried a mini-one button, didn't work either.  Now we are using a foley catheter, which seems to be working and his body is tolerating his feeds this way best.  We hope to get a ballon tube soon from his home medical supply company.  He cries out often for no explainable reason.  He puts everything, and I mean everything, in his mouth and chocks on most of it.  I have a baby, 11 months old, my fourth child, JoJo's chewing is not "normal," it is excessive and would be wearing on any mamma, but for sure, this one!  Especially since we are living in a construction zone, not much one can do about things being out of place and JoJo is not easy to care for in such circumstances. But alas, we can be thankful that he is alive and with us. Back to this morning, we made it, we finally made it to church!! I put the kids all in their classrooms and told JoJo's teachers to page me if they need anything.  I was finally,  after a year, going to sit down and hear a sermon!  I sat down, sang a Hymn and off went the pager! I almost burst into tears at that very moment, but It took everything I had to hold it all together.  I calmly went to his classroom, I could hear him screaming the moment I opened the sanctuary doors.  I went to get him, absolutely nothing wrong except he wouldn't stop screaming.  And I don't mean, a little cry that normal kids do when left in their classrooms.  It was loud, piercing, and down right scary for the rest of his class.  I totally understand why his teachers paged me.  But now what was this mama to do, who simply struggled enough to get out the door this morning; longing for a break, a break to hear a sermon, a break to hear God's word; what was I going to do now? I took him into the sanctuary, didn't work-too loud and he started screaming.  Went and checked out the nursery to see if that room would work out better-nope tons of babies would set him off too.  So I just sat there in the hallway trying to hold it all together, but all I wanted was to sit down next to my husband and listen to the sermon, however; this little creature wouldn't let me! He started screaming again, no reason, most of the time there is no reason.  I picked him up, even though I didn't want to, and started walking the Halls with him.  A sweet sister in Christ stopped me because she saw a feeding tube on him.  (We haven't been to church all summer, before his feeding tube, was the last time she saw us.) "when did he get that?" She asked.  I filled her in and held back tears.  She then said, "could I hold him for you and you go listen to the sermon?" I said absolutely! And took off before she could change her mind.  And I'm so glad I did.  The sermon was exactly what I needed.  By the end of the sermon I was in tears because of my selfish heart! My attitude has been horrible lately and ungodly to say the least.  And for those of you who would like to respond and say something like, but yeah, look at your circumstance. No, that is not an excuse for my heart and attitude.  Today's sermon changed me. God cares about the internal not the external.  He hates hypocrisy!  The truth is, I've been at my end for a very long time.  I'm exhausted, tired, hate where we are at, can't stand the level of responsibility I have to uphold. I hate not having a safe place for my kids.  I can't stand the amount of disobedience and disrespect from my kids.  I am so threw with fighting with my husband about every little thing! I don't even care about the house anymore! I just want to be done with the chaos! At least that is where I was at this morning before church.  I was so angry at God for putting these circumstances in my life, and I wanted out! The sermon this morning was on the beatitudes found in Mathew 5. Bottom line, it comes down to attitude and where my heart is at that matters to God, not my life or my actions.  I'm not good enough and I don't have to be.  But in the struggles and circumstances in my life I can allow HIM to mold me more like him; To take my broken-ness, my weaknesses, the sinful person I am, and use it for HIS glory! I must stop demanding things to be my way, choose Joy, and deny myself and follow Christ!! In every area of my life-even in the chaos!! Lord, please change my heart to be more like yours! Thank you for your sacrifice, thank you for the sermon this morning and thank you for my dear sister in Christ caring for JoJo this morning so I could hear your words!!

This morning I cried to my Lord and he heard me! God will never leave us nor forsake us. It was very humbling when the very one that helped me with JoJo this morning said to me, "thank you for ministering to me this morning, knowing your circumstance and what you are facing shows me where my heart is at and I should be more content and patient with my kids." Wow!! Never would have thought that my broken-ness could be used to minister to another one. Thank you Lord for your goodness and your ways. 

Wednesday, August 6, 2014

What is life...

I'm struggling with the idea of Life since being in the ICU at children's hospital in Milwaukee.  As one could guess. Milwaukee isn't a safe place for young kids.  Gangs and gang fights everywhere. Not to mention, our weak human bodies sometimes just give way as well. I saw so many children die before my eyes, I became numb to it.  I stuffed it away in my head to survive the chaos we are living. But every night as I try to fall asleep I start pondering life again.  What is life? Life can leave a body and the body is still be there, but the person is gone.  As my son struggled for his life one night, a little girl, just 17 months old, two beds down, passed away from complications from a surgery my son WAS going to have done in May, but it was canceled.  Wow! So scary.  How reality hits you like a ton of bricks! It only takes a moment to change that. Life after death is so real when you see death in the face.  I still look at our Angel baby and wonder why God kept him alive that night of June 20.  He could have taken the life out of him, but he chose to save his life instead, why? I'm incredibly thankful for it most days.  But when I think of all that my little boy will suffer from, as he ages, I can't help but think, why God?  Why did you save him?" He has a plan and I trust Him.  What is life? My brain is so overloaded, it is hard to ponder what life is.  Life is but a moment and we can lose it at any given time.  Life is precious and even if you lay in your hospital bed completely alone or if the hallway is packed with family members as your lifelines are unplugged, God values both!  I saw so much when I was there.  An abondoned abused little boy completely alone, a twelve year old girl shot in the crossfire of a gang fight with all her family by her side.  What makes one kid loved by many and the next one abandoned? My brain tries to make sense of this unfair world.  But that is exactly it, a fallen world. Christ tells us in John 16:13 "I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world."  My life has been forever changed from our stay in ICU.  I may be confused and try to make sense of it all for many years to come, but I can find peace in Christ because he has overcome it all! Lord, please help me make sense of my feelings and thoughts about life and death since our stay in ICU. Life is precious. Life is breathed by God. Life is irreplaceable.  Please use our little boy to strengthen us, to grow us closer to you and together, may his little life bring you glory! Amen. 

Our house :(

Here are some pictures of our house being ripped apart. Slowly it will be some our home again! What a relief having the mold gone and the leaks fixed!!! God is good in all things!!! 

Overloaded..try again later

My brain is on overload.  Can't take anymore input.  Need to dump contents and reset!! This summer has been one of the most intense times of our lives!! We spent a month in Milwaukee children's hospital, almost lost our precious boy.  Spent the first two weeks of July getting the family back on a normal routine only to have it ripped apart.  We were thrown out of our home because of mold.  We camped in our backyard for almost a week, in tents, yes with four tiny kiddos! Then the construction began! Our backyard was no longer safe, so we moved our family to grandma and grandpa's backyard in their pop up camper. Life is a Constant go go.  I long for the day my home is done so that I can get back to our normal chaos!!! Life with four tiny kiddos, one with special needs, and one exhausted mommy with no home and space to call her home, is beyond hard!  As I sit here in this chaos and take a step back, I am reminded how "hard" I thought it was with two kiddos. Running Isaiah back and forth to Milwaukee every 2 months for his PWS. Running him to Madison for his asthma, and dealing with his failure to thrive.  Yes it was hard. No doubt. But looking back and comparing our lives today, to then, man, I would take that over this any day! But that isn't the point.  The point is, I can whollow in self-pity, cry, and complain that life isn't fair, or I can take up my cross and follow Christ.  It is very easy to allow satan to grab us in our weakness and spiral downward on the depression cycle. But my Lord reminded me to resist the devil and he will flee from you. I love it when he whispers scripture in my heart and I don't even know where the verses are found.  I love google too.  After my Lord whispered this truth to me, I googled it and found it truly was my Lord speaking to me.  James 4:7 states, " Submit yourselves, then, to God. Resist the devil, and he will flee from you."  Isn't our God awesome!? He not only tells us to resist the devil he tells us to submit ourselves to HIM!!!  I've been learning to submit myself to Christ, desire him, and my circumstance begins to fade away.  Yes, I have no roof on my house right now, yes, I'm staying in a camper, yes I have four tiny kiddos, yes one has special needs that overwhelm me, yes my life is chaotic, yes my kiddos disobey, yes my husband and I actually fight these days,yes I long to be In our house, yes, I'm purely exhausted mentally and physically. But CHRIST is not!!!!  2 Corinthians 12:9 "But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me."  Read that again, "But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me."   Christ is suffiecinet for me and HIS power is made perfect in my weakness!!! Wow so profound!! My greatest prayer for the last 10 years has been to be content in all circumstances. (It's the theme of my blog) As my life becomes more and more chaotic, the lights are out, and I'm clueless on how to go on until my Lord softly whispers to me, "resist the devil and he will flee from you". Those words have changed my perspective on this chaos we are living.  No matter where we are, no matter what we have, no matter what we don't have, all we need is Christ!  Paul knew that secret, he shares that in Philippians. But what does it really mean to be content in all circumstances? "I have learned the secret of being filled and going hungry, both of having abundance and suffering need. I can do all things through Him who strengthens me.…"   Despite my circumstance we only need Christ! If you would like to fully comprehend what that truly means, ask God to show you!  I did, I'm still learning, and it's been hard but I'm glad my God is showing me how to walk by faith not by sight.  For to be content in all circumstances, one must walk by faith, which is so much easier to do with the lights on, when you know where your kids will sleep tomorrow, when your schedule is predictable. But that is not truly walking by faith.  When the lights are on, I'm in control, I see, and I plan, and predict what we do and where we go.  The lights of my life went out and I have been holding on to it, Fumbling around trying to turn that light back on because it is so much "easier" and less fulfilling to walk by sight.  I'm so thankful Christ changed my heart, I'm thankful that I put out my hand and asked Christ to guide me through the darkness,I will stop looking for the light switch.   I would never wish ill unto anyone or any family;  however, when one goes through endless chaos, that is when the realization of God's power and love, mercy, and grace overtake you!   Be careful what you pray for.  I've been asking for contentment and patience. God is teaching me!  I am so thankful for his promises. Hebrews 13:5 "Keep your lives free from the love of money and be content with what you have, because God has said, "Never will I leave you; never will I forsake you."  I am the worst of sinners, I fail everyday, I am not enough, I complain, and I am the least patient women I know.  But I find my my comfort knowing that I don't need to be perfect because Chirst IS for me!  For a profound revelation!! I don't have to be enough because Christ is enough!!!  In this chaos, I chose Christ.  Life is hard but so full of Joy with Christ in control! 

Tuesday, July 8, 2014

Purely Exhuasted...

Where do I begin? Purely exhausted doesn't seem to even be the words to discribe myself right now. So much to process, so much whirling around my head, so much to physically do, so much mental energy S.P.E.N.T! I can begin my saying some good things about our little Angel Boy! JoJo is doing pretty good. He is still only eating by his gtube. Seems to be a slow process to get him back up and running in that sense. But he is doing awesome in all other areas! We went to see his general ped today and the man almost cried because JoJo looked so good to him. He loves that JoJo is so inquisitive, happy, and that his breathing sounds amazing right now even with congestion. So overall , Josiah is doing well. Very happy and content. Crawls arounds and loves to play with his siblings. But I on the otherhand am still coming out of survival mode and my heart is still in shock that we almost lost him. I totally believe in our heavenly Father and trust his plan for our lives. June 20, 2014 will be a day I will never forget! One can believe and "trust" God's will for our lives. I get that, I really do. If you were to ask me beforw June 20, "do you want God's will for your life?" "Of course" would have been my reply. And it still would be. But when I was facing the reality that God's will may be to take my son right now in this very moment in time. The son I have fought for for 2 years now. The son I did not carry in my womb but have deeply fallen in love with beyond that need of carrying him to be His mother. The son whom Iv'e strugged with because he is "hard" to care for. The son I just started to get a handle on and learn how to properly care for his special needs. Yes, that son. I never imagined myself begging my Lord to give me a second chance with this boy. To let me keep him a little longer for I just got a handle on this special needs thing. "Lord, I begged him, I know if it's your will he doesn't make it tonight, I know and believe Y.O.U alone will be our strength and will carry us through; but Lord I'm begging you, please save my son!" Tjat was the prayer I kept praying that night. It was a horrific day I will never forget. A good friend of ours from wausau stayed with JoJo on the night of June 19 at the hospital. I arrived around 6 am and my friend said that he didnt sleep well and seemed to be in pain. Josiah kept dry-heaving and still couldn't tokerate feeds or his tube even clamped. He was still losing alot of discharge from his gtube. The color of the discharge kept going from green to clear to massive amounts of green in the early hours of friday morning. Around 8 am, a team of surgeons came in the room and said maybe it's time to see if there is a bowel obstruction or if it's just his puesdo obstruction from his MECP2 duplication syndrome. The surgeon said they would do a CT scan to determineif there was a blockage or an abscess. We said that sounds good, lets check. They wanted an xray first. They took him down and brought him back. Something didnt seem right, he was just lying there, not moving much at all. I ran to get the nurse,"what did you give him,"I asked. She said, "nothing, they just did an x-ray."  What do you mean nothing, this isn't nothing, my boy looks sedated. Something isn't right". She assured me that he was fine. His tummy was huge and he hadn't peed in over half a day. The nurse said that they were going to put in another foley as she continued to reassure me that he was fine. His heartrate was staying around 180 and he began to look (a image that is burned into my memory tuat I will never forget) pasty white with deep sunk black eyes. My baby boy looked dead. I have seen dead and he looked it! I kept asking the nurse, "what is going on, why does he look like that."  "You're here because He's sick, he'll be fine," she replied again. "Excuse me, I'm not here because he is sick; I'm here because he had a fundoplication and g tube placed. He wasn't sick yesterday! What is wrong with him, something is wrong!"  At thos point, he started peeing blood. At this point, SuperDaddy and I started demanding answers. They still didn't do a CT scan. They were still taking X-Rays. The nurse and staff kept reassuring us that he was fine. They told us they think he may have an infection because his labs came back with his WBC being 30,0000. Apparently, that is very high. My son has a weakened immune system and needs antibiortics to fight major things. They kept arguing that they cannot give antibiotics untik they find the source of the infection.  I kept telling them to start a broad antibiotic immeadtly, I don't live under a rock, I know it can be done, I want it started. They refused to listen to me. At 5:00pm the nurse comes in and says that they are going to wait until the morning to do the CT Scan as everyone went home for the night. I was certain that somethibg was wrong with my boy and I wasn't going to let anyone rest until we found answers for him. I walked out into the hall and into the nursing station and politely and firmly said, "you have an on-call team, I want them called immeadelty and that CT scan is happening tonight."   At 7pm he was taken into the CT scan and we didn't get to see him until 10:30. He went into the OR for an emergency surgery becuase our little Angel was fighting for his life for he had a bowel obstruction that had been there for awhile not just hours. 50 cms of his small intestines were swallowed up by his large intestines! As we sat i that dark waiting room, I begged my Lord to save my son, and through the hands of the surgeon who was on call that night, my Lord, spared my son's life and let me be his mother a little bit longer yet. It is a prevlidge to be his mother, and I don't take that calling lightly. God has given me a second chance with JoJo and I want to make the best of it with God's help of course ;) We are incredibly thankful to have our boy with still with us. Yes, he has special needs, yes he has a feeding tube, yes, we know he may never walj or utter a real word, and yes we eveb know that his life expectancy is at best 25 years; but we are incredibly blessed to have Little JoJo in our lives as he teaches us how to humble ourselves before the Lord and others. To say, I can't do this alone; and seek God's family to rally behind us and care for our Little Angel together as a community, as a whole body of Christ. We each can learn so much from this little Angel. We just have to be willing to learn. I asked my four yearold  daughter what she loved most about her brother JoJo, and she replied without skipping a beat, "I love JoJo's special needs!"  Isn't that the truth. I marval at how God crafted the mind of a child. Thank you Lord tor the gift of our children. Thank you for placing JoJo in our lives. Thank you for sending Christto redeem   us. Thank you for your unfailing love. Thank you for never forsaking us. 
June 20, 2014 in and of itself is emtiobally exhausting to live through and now to process. I am started to leave survival mode of the hospital and am grieving the loss of a month with my other kiddos and family. I lost a month of time with then. The were happily together most of the time at their grandparents house with wonderful sitters from church to watch them when Grandma was working. They enjoyed themselves but missed their family. Once we all got back home and together, they showed how much they missed us. I can't leave the room without ibe freaking out that I'm gone. Isaiah has screamed our in his sleep for Mommy. They cry if I'm in the bathroom and they can't find me. They aren't use to not having mommy. I want routine. Gotta run

Thursday, April 10, 2014

Peeling back the layers of stress one sticky mess at a time...

I feel like I'm going crazy. I feel like I can't keep it together most days. Life is overwhelming. I feel alone. My life is too busy and complicated for friends and play dates. That makes me want to cry. I can't find the time and energy to make a real dinner for my family these days. I am using disposable diapers. That makes me sad. I love cloth diapering. It's hard to find clothes to wear most days. Little man's tummy problems are back and still no answers.  He has constipation then loose stools.  He randomly pukes. His whole body itches and he scratches until he bleeds. I feel horrible that I can't help him nor find a doctor that will. We see a new doctor April 29. It can't come soon enough. Praying for relief for my little man!  Our roof is still leaking. We still need $30,000 to fix it. My house is in disarray. We live very close to the road and it doesn't matter how much I beg my neighbors to slow down, they still seem to want to speed past my house with all my littles right there.  I wanted a fence this year.  Well with the accident, I lost that. I want to cry. I wanted to be able to let the kiddos go out without the fear of them being squished by a speeding car. Life is hard right now.  My four year old talks nonstop, I'm an introvert. That overwhelms me. My two year old has stopped napping even though he still needs one.  And because he still needs one, he screams most of the day for no reason. Okay maybe for a reason, he is tired and in pain, but I feel helpless.  That overwhelms me and  I scream. Then I feel guilty that I lost it and couldn't keep it together. I feel like I've had to pretend I had it  altogether  because our life was under the microscope for so long trying to bring home and adopt our son, Josiah. I felt like if I did one thing wrong or said "I can't handle this" they would take away my precious boy or even worse, all of my precious kiddos.  Well, today is going to be a reality post. That part of my life has closed. That door has been shut. I do not have to have that feeling of them Looking over my shoulder and watching my every move with my family life anymore.  Adoption is not for the faint of heart.  It is a roller coaster from the very beginning to the very end! They dig deep into your whole world and leave no stone overturned. ( And rightly so, for the childrens' sake who are being adopted, don't get me wrong, this is a great thing) However, it is hard, challenging, overwhelming, scary, and a whole lot of work! We fought for him from the moment he was born.  And in order to bring him home and call him ours we went through the wringers.  The adoption process has left me burnt, to say the least.  Maybe it was because it wasn't a typical adoption.  It was an interstate special needs/relative adoption that required tons of paperwork, two states to determine which laws to follow, and snail mail! No one ever knew what the answer was when we had a question. I found the law book and read it to "teach" my workers what they had to do at times. Pathetic, right?   I wish I could say I'm joking, but I'm not!  We had to do things over and over again. IT WAS FRUSTRATING. 
Now that we got that out of the way, let's move on, shall we?  We are proud to call him our son and give him as much love as we possibly can for as long as we have him here.  My greatest prayer is that he will go to heaven some day.  We will share Jesus with him in every way we can. His diagnosis is heart-wrenching.  His life prognosis is devastating.  His everyday struggles sometimes feel unbearable, not to mention the regression.  I ask myself, why, why him, why me, why us Lord!  I was and still am a very selfish person.  I would pray and ask God for more patience and to grant me unselfishness.  Crazy, isn't it? God can't give me patience! Patience is a by-product of hardships and it is learned, not granted. Selflessness is a choice on my part not a gift to be granted.  So back to my struggle.  Why Lord, why does my Little Josiah have MECP2? Well, I don't know why? Some days I don't understand WHY I was his chosen mother.  There are so many more "capable" mothers out there that could have cared for him better than me?  Some mothers are nurses and care for special things like his needs on a day to day basis. I barely remember things from health class in high school.  How am I to care for such a medically needy child? Why am I the one who is his Mother? I ask myself these questions but already know the answer.  For the answers are found right in the scriptures given to us from our Heavenly Father.  I know without a doubt that I am Josiah's mother for a reason.  God chose me to be his mother, not anyone else that was put in his life before me.  Me. I am his mother.  It's a privilege to be the mother of such a precious boy.  John 15:16 "You did not choose me, but I chose you and appointed you so that you might go and bear fruit—fruit that will last—and so that whatever you ask in my name the Father will give."
God not only chose me to be Josiah's mother, He appointed me to bear fruit.  What does God see in my brokenness to love me and choose me and appoint me to bear fruit for Him? 
Ephesians 2:1-2 And you were dead in the trespasses and sins 2 in which you once walked, following the course of this world, following the prince of the power of the air, the spirit that is now at work in the sons of disobedience— 3 among whom we all once lived in the passions of our flesh, carrying out the desires of the body[a] and the mind, and were by nature children of wrath, like the rest of mankind.[b] 4 But[c] God, being rich in mercy, because of the great love with which he loved us, 5 even when we were dead in our trespasses, made us alive together with Christ—by grace you have been saved— 6 and raised us up with him and seated us with him in the heavenly places in Christ Jesus, 7 so that in the coming ages he might show the immeasurable riches of his grace in kindness toward us in Christ Jesus. 8 For by grace you have been saved through faith. And this is not your own doing; it is the gift of God, 9 not a result of works, so that no one may boast. 10 For we are his workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them.

Wow!! God's Word is strong and powerful.  Yes I am nothing! I am sinful! I am selfish! Why Does God love me anyway, I ask? Because right there in Ephesians He tells me, even when I was dead to sin, Christ loved me, it is by GRACE I have been saved! This is not of my own doing, but a gift from God himself so I cannot boast.  WE ARE HIS WORKMANSHIP!  We are to do good works, prepared for us beforehand and walk in them! Before the creation of the World He knew Josiah and knew I was his mother.  Maybe not a perfect mother, but the perfect mother for Josiah.  Yes, I am his mother.  I am going to be his mother and care for him as long as he lives.  It's not going to be easy.  But who said it was going to be easy?  And when does God ever call His people to easy? Deep down, I don't want easy anymore, I wan't Jesus! And ALL that He has for me and my family, even when it's hard, even when it's challenging. I want to be made complete and in order to persevere we need to go through trials of many kinds.  James 1:2-4 "Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, 3 because you know that the testing of your faith produces perseverance. 4 Let perseverance finish its work so that you may be mature and complete, not lacking anything."

Wow again!!! I am worn out, overwhelmed. I am devastated.  I am purely exhausted.  And God tells me to consider it pure Joy?  I'm missing something.  Yes, I don't want easy but I also can't do this on my own.  I have no strength left.  I cannot handle this.  But then I hear my Lord whispering in my heart. "You don't have to, you can't handle it, and you don't have to!" Wait, I don't? 
Matthew 11:28-30 "Come to me, all you who are weary and burdened, and I will give you rest. 29 Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. 30 For my yoke is easy and my burden is light.”

Really, Lord! I just have to come to you? How do I do that? Matthew 16:24 "Then Jesus said to his disciples, "If any of you wants to be my follower, you must turn from your selfish ways, take up your cross, and follow me."  Turn from my selfish ways? Yes that is it!! Jesus please help me turn from my selfish ways. I do not need to have it my way anymore.  I do not need to have a fixed house, a mute 4 year old, a quiet 2 year old, and a cured MECP2 child.  I do not need to have a clean organized house. All these things would be nice, but I need to give them to Jesus and allow Him to be my strength to be the mother, wife, servant, and friend that God is calling me to be to all those around me.  Philippians 4:12-13 "I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. 13 I can do all this through him who gives me strength."
Lord, please help me give the reigns of my life back to you.  To be content in all circumstances, to wholly lean on you in these trials of many kinds and choose Joy in all of it.  Jesus, it is true, I don't want easy anymore.  I want you and your plans for my life.  Jeremiah 29:11 "11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." 

Tuesday, March 18, 2014

Our Miracle boy

   This post is coming to you a little early but I'll just take my chances with the adoption police. LOL  First, I will update you on where the adoption is at.  It has been a long journey for us but we are so very close to the end of this process to start a new journey with our Little Angel.  The adoption should be finalized by the end of this month.  We are simply waiting for the Judge's signature and then he is formally our baby boy!!! So very exciting, yet, in the midst of this exciting time, there came some devastating news.  I' have decided not to wait for the finalization to inform our family and friends about our baby boy.  It's time to share with you all what we face now and in the future.  First of all, our Little Angel was born on May 21, 2012.  Praying the adoption date comes in March.  Our Little Angel came to us at 11 months old on April 19, 2013.  He wasn't a typical baby and suffered from some moderate medical concerns at the time.  When we brought him home; he could not walk, he could not hold his own bottle very well, he was just tolerating pureed baby foods, he could not sit up unassisted, and had no sounds or words, and breathed loudly. Birth to three put him at a 3 month level pretty much across the board.  He was with a loving foster home before coming to us but we just thought "the system" must have caused his delays.  We thought, "now that he is finally home, he will catch up."  We started therapy immediately.  By the end of May, he was sitting up and drinking from a sippy cup.  By July, he was crawling.  Then we hit a time of regression.  He kept loosing balance and sleeping a lot.  After many visits to the doctor and a specialist we all finally decided he was fine and it was ok to sleep 20 plus hours in a day. We continued with therapy.  In August, he learned how to wave. By September, he could no longer wave.  Yet, he started crawling better and better.  In october, we started outpatient speech therapy in hopes that we could learn how to communicate with him as he had no words yet.  After many visits with the therapist, we started seeing progress.  We have eye contact and he comes to us for comfort!!!! Yipee!! He knows I am his mommy and I'm soaking in all the snuggles.  Besides his developmental delays, our Little Angel suffers from Laryngomalacia (which is a congenital softening of the tissues of the larynx (voice box) above the vocal cords. This is the most common cause of noisy breathing in infancy. The laryngeal structure is malformed and floppy, causing the tissues to fall over the airway opening and partially block it.)  Chronic sinus infections, chronic constipation, shivers and blue spells, hypotonia, severe acid reflux (GERD), ataxia, and random/odd and maybe  involuntary movements of his limbs, and he falls often.  His general pediatrician was trying to figure out all his medical concerns with no avail. He seems to take 3 steps ahead then 2 steps back.  Yet, overall he continues to make progress.  We are very proud of our Little Angel.  In January he started standing/balancing for 5 seconds and today he no longer can do that.  We felt he was so close to standing, but not yet.  His medical concerns have become more and more in our face lately.  His breathing sounds horrible, his reflux is bad, he shivers for no reason, and turns blue on us.  His doctors were ready to find more answers.  In the course of this past year; we have added multiple doctors to his team, with the latest one being, genetics.  We all agreed it was time to do a genetics test to see if there is an answer in his core make-up, his DNA.  We started the process back in January, and finally received the diagnosis no one ever thought was even a possibility last thursday at noon.  It's never a good thing to get a phone call from a nurse asking if I have time to speak to the doctor! "Excuse me, you want me to speak to the doctor over the phone, right now?"  I had no idea what I was about to hear, would change our lives (or the perception of our lives) forever!  I was told he has MECP2 Duplication Syndrome.  Yes, take that in for a moment.  Yep.  Means nothing to you, right?  That was my first reaction as well.  I wrote it down and thought I'll look it up later, how bad could it be, right?  The doctor called me three times in a two hour period.  The last phone call, she was apologizing for telling me this over the phone. MECP2 has changed our lives but this diagnosis has not changed our Little Angel or how much we love him.  We love him to an even greater degree carrying this diagnosis.  Ok, are you ready for the description and prognosis for what my Little Angel has?

First, I will explain the chemistry/biology part of it.  MECP2 duplication syndrome is caused by a genetic change in which there is an extra copy of theMECP2 gene in each cell. This extra copy of the MECP2 gene is caused by a duplication of genetic material on the long (q) arm of the X chromosome. The size of the duplication varies from 100,000 to 900,000 DNA building blocks (base pairs), also written as 100 to 900 kilobases (kb). The MECP2 gene is always included in this duplication, and other genes may be involved, depending on the size of the duplicated segment. Extra copies of these other genes do not seem to affect the severity of the condition, because people with larger duplications have signs and symptoms that are similar to people with smaller duplications.
The MECP2 gene provides instructions for making a protein called MeCP2 that is critical for normal brain function. Researchers believe that this protein has several functions, including regulating other genes in the brain by switching them off when they are not needed. An extra copy of the MECP2 gene leads to the production of excess MeCP2 protein, which is unable to properly regulate the expression of other genes. The misregulation of gene expression in the brain results in abnormal nerve cell (neuronal) function. These neuronal abnormalities cause irregular brain activity, leading to the signs and symptoms of MECP2 duplication syndrome.  So what does this mean for our Little Angel. MECP2 duplication syndrome is a condition that occurs almost exclusively in males and is characterized by moderate to severe intellectual disability (mental retardation). Most people with this condition also have weak muscle tone in infancy, feeding difficulties, poor or absent speech, seizures that may not improve with treatment, or muscle stiffness (spasticity). Individuals with MECP2 duplication syndrome have delayed development of motor skills such as sitting and walking. Some affected individuals experience the loss of previously acquired skills (developmental regression). Approximately one third of people with this condition cannot walk without assistance. Many individuals with MECP2 duplication syndrome have recurrent respiratory tract infections. These respiratory infections are a major cause of death in affected individuals.   His life expectancy is shortened drastically.  The doctor told us life expectancy is 25 years.  The saddest, most heart-wrenching part of his diagnosis isn't his life expectancy but rather the regression that will take place.  If he ever learns to walk, he will lose it.  Some children regress with eating and are put on feeding tubes, some need supplemental oxygen.  Others need full-time support and help as the years move on.  Life gets harder for these children as they get older as the seizures worsen (seizures that don't respond well to treatment) and the regression becomes greater.  
We are in utter shock.  Never did we expect such a diagnosis.  Never did I ever imagine having a child with such great special needs.  Never did I ever think this could happen to me, to us.  I'm devastated to think of the pain and suffering my Little Angel will face as he grows up.  Not to mention all the questions I have. How will he ever be able to understand the Gospel and choose Jesus. Is he different than us.  Is he perhaps an Angel sent here to do things for Christ that I can't comprehend.  We have been so blessed to have him in our home and call him our son.  He has touch our hearts and our world in a way that is indescribable.  In a "normal" life with "normal" children it is so easy to take the little things for granted and take control of my life.  With my Little Angel, I have to wholly lean on my Heavenly Father to make it through each and every day.  I can do nothing without Christ!  And we are certainly be carried by HIM through this time in our lives.  Please, as you think of our family, please pray for us and our Little Angel.  Please pray for funding and necessary equipment to properly care for him.  Please pray that we completely trust God with Him and our future with him.  Thank you for your prayers and support and may God bless you.  You have my permission to share my blog with others.  Prayer is greatly needed for us all. 

James 1:2-4 tells us, "Consider it pure joy my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything."

Another MECP2 Mom wrote this and it speaks loudly...

In Phillipians 4:4, we are told to "rejoice in the Lord always." I don't know about you, but rejoicing was not always at the forefront of my mind during these past years with Liam. A pastor friend was talking about this verse, and he said that it is helpful to remember that the word "rejoice" is made up of two parts: "re" and "joy." The "re" part of rejoice can remind us to return to the source of our joy. Is the source of our joy a perfect family of healthy and typical children? No. It is our perfect God and Lord . . . the sacrifice that Jesus made on the cross of Calvary for us . . . the hope of heaven someday. That is why we "Rejoice in the Lord always." We will always be disappointed when we seek joy from other places. Our joy comes from the Lord.
If we keep our focus on the cross, God will carry us . . . just as Peter was able to walk on the water when he kept his eyes on Jesus. If we focus on the difficulties, the unfairness of it all, the hardships, we will sink as Peter did. We pray today that God will fit each of us with lenses of faith that keep our eyes on Him and will carry us through the difficult days, months, and years ahead.
Maybe all the parents of "typical" kids don't get it. They get upset about going to the doc for checkups and shots. They don't know what it is like to watch their child be hooked to tubes and monitors galore. They are upset if their child is left out of games at recess. They don't know what it is like to have their child always be different, not fit in, stand out, and be stared at. GOD DOES. He gave his Son to die . . . as a criminal . . . beaten . . . hated . . . humiliated. What pain God the Father must have felt. And all for you, me, and our dear, dear children. Thanks be to Him.
Jesus’ great sacrifice on the cross has made us clean. All of the doubts that we have, the negative feelings, anger, or envy - these are gone. When God looks at us now, he sees the robe of righteousness that Jesus gave us. He sees not our weakness, but Jesus’ perfection. Again, thanks be to God! May we keep our focus on Him in the days ahead.

And lastly this song has helped me through...