Some days are hard

I have had the desire to post many times but have lacked the energy.  It seems that we are in a holding pattern these days.  We are waiting for "the call", waiting for a diagnosis with me (still), and waiting until Hannah's next surgery.  Waiting can be hard I for one have never been good at it.  I remember when I was young unwrapping my Christmas presents and then taping them back together.  Don't tell my kids :) This is certainly not as fun as that thats for sure :)  I'm usually more positive on this blog but I also like to be real.  The truth is I'm struggling with waiting.  My legs have gotten weaker and it has caused more frustration in me.  I can't walk very far without being in pain and my legs tiring out.  It reminds me how frail I'm getting and it is just plain frustrating.  It's hard enough trying to take care of three kids not to mention  two with special needs and homeschool and be a good wife.  My mind wants to do it and my body says no you can't.  This year my kids have seen me fall a dozen times, use a wheel chair and lay in bed with heat bags.  I know things could be worse and I know this is so the works of God can be displayed but it still SUCKS sometimes and I think it's okay to admit it as long as we don't stay in it.  I'm longing for the day when there is no more pain. God is always faithful to bring me out of this and I know he will bring back the joy. His mercies are new every morning.  For now would you please wrap our family in prayer.

I will be making an Apt. at UCLA for myself to find out what the next steps are in finding me a diagnosis.  We are also working on finding a good Neurologist closer that could help when needs arise. Pray that I would find joy in the difficult days.

Pray for Noah that God would protect his heart until he gets his new one.  That he would remain healthy and positive and lean on the Lord.

Jason as he cares for us all.

Hannah that she would remain stable and not have to have her next surgery until we get done with Noah's.

Jonah that he would not be scared for his family members and that he would cling to you in the midst of all that is going on.  That he would feel just as loved and important.

We are so thankful for all of your love and support .

Happy 10th Birthday!!

Noah we love you so much and now more than ever we don't take any day for granted that we get to be your mom and dad.  The Lord gave us a precious gift ten years ago.  We couldn't be more proud of the sweet young man that you have become.  We love your heart and your compassion for others.  We love how you have accepted your diagnosis and have seen the Lord at work through your circumstances. We Love that you love Jesus.  You are wise above your years.  Happy Birthday sweet boy.

A Beautiful Evening

Last night was the big dinner/silent auction event that our dear friends worked so hard on.  As we entered the room people were busy setting up and getting things ready.  They all had smiles on there faces and were so happy.  The place looked spectacular and Jason and I stood in awe.  The event started and we went around welcoming and greeting the many people that entered the room.  I felt humbled that so many that I was meeting for the first time came to support our family.  As the speakers spoke and the presentations went on I was so overcome by God's goodness and wondered if this was what Heaven would be like.  Such Happiness, no worries, no pain, just joy at seeing God's beauty displayed among his people.  It was just so touching.  He continues to show himself over and over again.  The night was about so much more than raising dollars.  It was an honor to have a small part in what God is doing among this difficulty.  Thanks for all your prayers leading up to this event. I was thankful for your specific prayers for Jonah and him not feeling left out.  He had a great time. He even got to go up on Stage and help out which made him feel so special(thanks Jeff).  God is growing his compassion and understanding.  Noah was taken back as well at the amount of people that were there to support our family.  He is learning everyday from all of you how to love and support others and we thank you for  being such beautiful examples to him.  You all are playing a big role in what God is doing through this sweet child of his.  Our prayer is that Noah will see God using him to bring about his glory.  Right now it is fairly smooth and we know the hard days are to come.  But God is preparing him daily and equipping him with the strength he will need to persevere.  We will take it as it comes knowing and trusting that God is sovereign over all.

There are hundreds of people to thank that made last night possible.  From the amazing team, the donors, ECCU, the speakers, musicians, the servers, the Chef,the audio, the photographers and videographers,ECCU member services, family, friends, and new friends we met for the first time.  Words just can't express how much we appreciate your love and support.  We feel truly blessed.

A Makeover

I decided after two years that my blog needed a little makeover :)  I hope you like it.  After talking to the nutritionist on Tuesday, we found out that the diet Noah will be on won't be as drastic as we had anticipated.  He will need to cut down on his sodium and sugar but nothing we wont be able to handle. He was pretty happy to hear that.  We have however been enjoying cooking and eating foods that are all natural and do not have any preservatives.  One of my favorite food blogs that I have found helpful is  www.100daysofrealfood.com  It is so great!  She has great recipes, advice, shopping lists, and menu plans. I would love any advice or favorite meal ideas.  Do you all have a favorite local farmers market that you love?  We have been making lots of smoothies.  We even cooked some organic beets and sliced them up.  If you add them to a berry smoothie the kids can't tell and the berries hide the taste. Shhh don't tell my kids :)  The problem with all this healthy cooking is that two of us in this family need to gain weight and this doesn't help unless we double our calorie intake and eat every hour.  I know I know not a bad problem to have :)

We have not gotten the results back yet from Noah's heart tests.  He continues to have more and more episodes.  Please pray that God would sustain him until he gets his new heart.  We are thankful for all of you and your faithfulness to pray and support our family.  Your comments have been such an encouragement to us.

Unexpected Trip To UCLA

On Monday Noah was telling me about every ten minutes or so that his head and heart were hurting.  He has lots of different chest pain episodes that he experiences on a daily basis but the head hurting was a new symptom.  He gets these shooting pains to his head for a few seconds and then they go away.  It is not a headache and he will get them often and they go away after about 30 seconds.  I decided to call UCLA to let them know.  They like us to keep them informed of any new symptoms.  They asked us to come in first thing in the morning.  Our appointment was at 9 a.m. so that meant we had to wake up super early.  If you know me well then you know I'm not an early bird :)  We met with the whole transplant team including the dentist. Ha! Did you know a dentist was part of the team? Well neither did I.  Pretty cool since I had a few questions for the dentist.  We saw the nutritionist, transplant coordinator, social worker, and doctors.  Noah had an EKG, echo, labs, and they put a 24 hour holter heart monitor on him that will record all his heart activity. It was an extremely long day.  The most exciting part of the visit was when the Transplant coordinator told us that she had seen Noah's name come up on the list several times.  WHOAH!!! That kind of took our breath away.  What does this mean?  Well when a heart becomes available in our region UNOS will call UCLA and give them a list of names.  They are to call the first one first and if they can't except the heart they go down the list.  You know that it is getting close if your name has come up on the list.  This was very exciting to us yet frightening all at the same time.  It just makes it that more real.  We learned that they get calls for hearts often but that UCLA is very picky about the hearts they accept.  They want the absolute best for there patients.  We love that about them and it is why they are one of the top in the nation.  We will keep you all updated on what the doctors find with Noah's test results.  Our prayer is that he would remain healthy and strong.  He had such an amazing attitude today and was telling riddles to the doctors and nurses.  Reminded me of the Wicked event when he was amuzing all the ladies with his jokes and humor.  He is so strong and knows God's got this.

4 Months

Today marks four months that Noah has been on the list for a new heart.  It has been a hard four months as we wait for a tragedy to occur so our child can have a heart thats not sick.  That honestly is the worst part.  It just breaks my heart that a parent is going to be in a position where she will be asked to make a decision to give the hugest gift to another person.  These days we live minute by minute making sure our phones are charged and we are prepared to leave in a flash. Honestly though I doubt we will ever be prepared.  Last night we took the boys to see the "How To Train Your Dragon" live arena show.  Sitting in the show of this crowded arena I thought to myself, we could get the call right now and these sweet boys who are smiling and having a blast would have to be hauled away to the hospital.  Luckily that was not the case but I wonder every day what we will be doing when we finally do get the call. I don't always stress about it but it certainly never leaves our minds.   The only thing that gets me through these awful moments of thinking about this is knowing that my heavenly father has it all planned out already and he works all things for good.  When I'm feeling super overwhelmed by it I cling to his word. We just have to trust in his perfect plan no matter the outcome.  I'm trying hard to "Surrender".  I struggle with the wanting to know and wanting to have a plan.  That is why I chose Surrender for my word this year because I believe God is stretching me to surrender to his way and his plan.

A NEW YEAR

I apologize for the lack of updates.  Truthfully there is not much to report on.  We are just waiting for the call.  Noah continues to do well with the occasional bouts of fatigue.  He is trying to stay healthy and our biggest prayer is he stays that way so that when we get the call he is well enough to accept the heart.

 We had a chance to meet Aiden and his family for some fun dessert and fellowship last week.  Aiden is the boy we met at the transplant party.  He has the same diagnosis as Noah.  He is 8 years old and had his heart transplant when he was just four years old.  We had a wonderful time getting to know them and asking them more questions.  We found out that the hardest part after transplant is adjusting to taking so many medications and the DIET. We were never told that the diet would be so extreme.  No sugar, enriched flour, dairy, and fats.  These foods can cause diabetes and other risky diseases due to the high immunosuppresants he will be on.  WOW!! Jason and I both felt sad for Noah and scared at having to drastically change the way we eat and shop.  Again Noah accepted this news as he always does with such maturity.  He asked a lot of questions about what he can eat and is thinking of creative ways to make the recipes he enjoys. So if you have good recipes please pass them our way.  He really inspires and encourages me to have the same attitude and perspective when things don't go the way I would like them to go.  I just love that boy.  He had the same response to his flu shot yesterday.  He truly is one of a kind.  I know I know I'm bragging but thats okay I'm his momma it's allowed :).

We had a wonderful Christmas and are just feeling so hopeful about this new year.  We are right where the Lord wants us and we will continue to press on and live for our king.  Seeking his will above our own.  We don't want to waste this diagnosis but embrace it and view it as a way to honor the Lord and allow him to do his work through it.  Last year I chose a word that I wanted to embrace for the coming year and that word was "Hopeful".  I have to admit this one was a struggle for me at times but feel like I have more hope going into 2013 then I did at the beginning of 2012.  The word I have chosen for 2013 is "Surrender".  I want to surrender to the Lord's will above my own.  Please pray that I would work on Surrendering it all.  Laying it all at Jesus feet.

 We wish nothing but God's richest blessings for you all this coming year.