Wishes Do Come True....

It's been FOREVER since I've updated all of you! Greysen is doing exceptionally well since his surgery in July! We had a few minor problems in the beginning but now it seems like he is a completely normal kid and I often forget he has a port hanging out of his belly! I can honestly say that the cecostomy was the best decision for our family. It has freed up so much of our time in the evenings and now Greysen is using the bathroom ALL BY HIMSELF! Completely independent of Kyle and I! Truly, this is such a relief for us and has lightened the burden immensely! Now on to an even better announcement (In our house what could be a better announcement than Greysen pooping by himself??!!)....

Last December, I submitted an application for Greysen to receive a wish through the Montana Hope Project. Honestly, at first, I almost didn't do it. I had to convince myself that Greysen was sick enough to deserve this (I mean there are kids dying of cancer and kids that are terminally ill with other diseases). After speaking with the Coordinator he said to me, "It's about the kids. It's about recognizing what they go through." The thing I LOVE about the HOPE Project is that they grant wishes to kids that go through chronic, terminal, or even short-term illnesses! Its about giving the families a chance to be together and forget about the daily struggles of living with a chronic disease. Let's be real: Greysen and our family have been dealing with this disease called Hirschsprung's for EIGHT years TWO months and THREE days. We've turned our trips to Denver into what we call "Hospications" (Hospital+Vacation: yes I made this word up haha), we've left our other children for weeks at a time, we've ignored our other children to handle Greysen's countless hours of  medical needs in the bathroom, we have gladly sacrificed so much to care for Greysen but it takes a toll on a family. Aside from the toll its taken on us, Greysen has endured a lot of trauma. We always try to keep a good attitude and look for the positive in this. The other day he said to me, "I think I know why God gave me Hirschsprungs?! To help others!!!!" Despite his good attitude, what you don't see are the days when he is struggling: "Mom, sometimes I feel like you are ruining my life when I have to do all of this stuff" "Mom why did God give me Hirschsprungs?" "Mom, sometimes I don't feel like a normal kid" "Mom, I hate my life". These phrases are almost too much to type out but its the REAL side of what he is going though. He has developed anxiety from all he has suffered and it breaks my heart! (FYI: He is seeing a counselor to deal with all of this)

This is why the HOPE PROJECT exists!!!!! 

The Hope Project tells sick kids, "We see what you are going through!" It tells the siblings, "We know you get the short end of the stick!" It says to the parents, "We know you are tired and we know you spent your vacation money on hotels and hospital stays! (Praise God for our church friends and family that helped us this year in that area!!!) So with all of that said Greysen will be getting his wish Granted, and in a few short weeks, we are heading to DISNEY WORLD!!!!! We will stay at a special place called "Give kids the World Villiage" (Google it! It's amazing!) and we will visit some other theme parks as well! To top it all off we just found out they are allowing Grandma Becky to tag along per Greysen's request. With our Ben having Asperger's I'm not sure how we would manage without her!!!!! Poor Grandma Becky will be exhausted when she gets back! I know that we don't deserve this! It's a gift that we could never repay and the gratitude I feel overwhelms me! I always tell people going thru a medical crisis, "Don't compare your sick child to other sick children. There is always someone sicker than your child and someone healthier than your child, neither of these discredit what YOUR child is going through!" We are forever grateful to the Hope Project for recognizing Greysen and our families' struggle with Hirschsprung's Disease!!!!

Next time I post I will be posting all about our trip so be ready for lots and lots of pictures!!!! Oh and did I mention we get to the front of EVERY line???! Eeeeek!!!!

Fear

Lately, I have been afraid. I KNOW that God is with me (and Greysen) but why is it still so hard not to fear? When Greysen comes up to me crying and says, "Mom I'm afraid I'm gonna die", I can't help but be afraid! Of course I tell him all the things I know to be true but yet I cannot feel them. I tell him that only God knows when we will die and that I have prayed that God would allow him to live to 100 years old. I tell him that Jesus has been watching over him before he was even created. I tell him that it's a miracle he is still alive and that it's only because Jesus has been watching over him that he is here today! I know all of these things to be true but yet I cannot help but fear that God will decide to take him from me! 

I've talked to several other moms that have the same fear. Anytime you put your child in the arms of a surgeon you wonder, "Will this be it? Will this be the time that something goes wrong?" I think back to when Greysen was first born, before we knew that anything was seriously wrong with him. We brought him home from the hospital and I remember being SO afraid that he would die from SIDS. I remember crying out to God, "PLEASE let me keep him forever. Please don't take him from me!" In that moment I heard that still small voice say to me, "Natalie, he is mine. I have entrusted him to you. When I am ready to take him back no amount of worry or fear will keep him here." At 3 days old I realized Greysen wasn't mine and that he belonged to God. My job was to raise him and love him and enjoy him for however long that might be. It brought me peace knowing that I had to trust God to watch out for my son because God is the only one that can see what we cannot. He knows when to intervene when we don't/can't. He watched out for Greysen for 6 years when we had no idea how sick he was. In the worlds eyes, Greysen got lucky. In my eyes, God wasn't ready to take my boy back. 

When I am struggling with fear I have to remind myself that Greysen belongs to God and that God is holding him (and me)! If he chooses to take any of my children he is still the same God yesterday, today, and forever!  

The bible verse I chose for myself  this year couldn't be more perfect:

"fear not, for I am with you;

    be not dismayed, for I am your God;

I will strengthen you, I will help you,

    I will uphold you with my righteous right hand."

Isaiah 41:10 

I am so glad that God knows me better than I know myself. I am glad he knows Greysen better than I do. In the last few months Kyle and I were left feeling like we no longer knew what to pray for our boy. It's so hard to pray when you can't see the larger picture but then I am reminded that God see's the bigger picture and I have to pray, "Lord YOUR will be done." If it were my will then God would heal Greysen:) Kyle preached a sermon called "Trust" this last Sunday (May 17th) and I was so encouraged by it. It was such a great reminder that God is in control and we have to trust him. Despite our circumstances are we putting God first? It made me realize that this is why I don't know what to pray! I have been praying for what NATALIE wants, not what God wants! My prayer should always be Lord your will be done! If God had answered our prayers for Greysen to be healed then we would have missed out on all of the blessings along this rough road: 

• the lessons we've learned
• the growth of our faith in God
• the unexpected blessings of meals, money and gift cards 
• the opportunity to see God caring for our needs when it seemed impossible
• using our experience to bless others
• No one is immune from hardship or circumstances that seem unfair 
• Bad things happen to good people, good things happen to bad people.

My prayer now is that the Lord would help me to not fear! The Lord see's the bigger picture! Whatever he chooses to do, in and through Greysen, I know that his life will draw others to Christ. He has the sweetest little soul for a 7 year old! I'm so glad God is in charge of his life because he will do a much better job than I can because he KNOWS Greysen inside and out!

So now I leave you with the most comforting song that has been on repeat in our house;) 

You Know Me

Have your heard???

The wristbands are here! Be sure to message me which colors you want and how many! I've already given 100 of them out so don't wait or they might be all gone soon! Greysen took a bunch to school today and also took his surgery book to share with his class. He is so excited about these wristbands and I can see how much it means to him:) We sent out our first shipment today to family and friends that do not live near us. He was looking at all the packages asking me, "Mom, who is this person?" It was so cool to tell him about people that don't directly know us but are still so giving and supportive! If you want a wristband message me today!!!

The Plan is not to Plan....

We finally have Greysen's testing scheduled! On June 15th and 16th we will hang out at Denver Chidren's for some special testing and then from there the Doctors will decide the next course of action. At this point we don't know if we will be able to stay and have a surgery during that same visit or if they will want us to make a seperate trip. It's possible that if they want him to have another biopsy after the tests that we will have to be there for a few weeks if they end up doing a surgery after the biopsy. Part of the wait is because we will have to wait around for the biospy results which can take a few days. So as of now Kyle and I have decided to plan to not plan! haha We'll just head down in June and go from there! A few things to be praying about are #1 that a room at the Ronald Mcdonald House would be available for us! #2 That everything would be able to get done in 1 visit! #3 That the Doctors would choose the best course for Greysen and for us as a family! Thanks again to all of you that have been so supportive and are praying! On a side note the wristbands should be here this week and Greysen can't wait to hand them out!!!!
 

Support Greysen and Buy a Wristband!

In about 2 weeks I'm expecting 300 of these Wristbands to arrive! They will be available in Gray for Greysen and Hot pink because, if you ask him, he swears that's his favorite color right now. The purpose of these are two-fold: #1 to raise awareness and show Greysen that we support him and #2 to help alleviate some of our travel expenses for his next tests/surgery! The cost for these are $1 each or whatever you want to donate! Anything above $1 will go towards our travel expenses but the $1 will cover the cost of the wristband and bring a smile to Greysen's face when he sees you wearing it:) If you'd like to buy one (or 10, 20, or 30!) here is what you can do: 

PayPal Payments
Choose the option of "send gift" to NatalieZigweid@yahoo.com. You can leave a message with your payment telling me: 
                                                1.how many wristbands you would like
                                                2. what color (Pink or Gray)
                                                3. Your mailing address. 
***Please add $1 for shipping. If you are paying above the $1 per wristband then please do not worry about the shipping cost:) 

Cash or Check 
Checks can be made out to Natalie Zigweid and mailed to : P.O Box 352 Big Timber, MT 59011. Please include Greysen's name in the memo. You can include a note or email me the following info so I can set aside your order:
                                                1.how many wristbands you would like
                                                2. what color (Pink or Gray)
                                                3. Your mailing address. 
***Please add $1 for shipping. If you are paying above the $1 per wristband then please do not worry about the shipping cost:) 

Greysen has been so excited about these wristbands and can't wait to see everyone wearing them! Your support and prayers mean so much to Kyle and I but even more to our special boy. I love seeing his face every time I tell him someone bought a wristband! 

Expect the Unexpected

As you all know I've been trying to get Greysen's surgery scheduled in Seattle for the last month and a half. I had a good chat with my friend Kara last Sunday after church and explained how I was feeling stressed and overwhelmed and wished that Seattle would hurry up so I could at least have a surgery date. She told me that she would be praying for us that this week would be the week I would get answers. Well I did get answers but not in the way I expected. After some back and forth with the Seattle scheduling department and nurses, I got a message from a friend on facebook. She asked me which Doctor we were seeing in Seattle and then explained their terrible experience with this same doctor. She hated telling me because, let's face it, who wants to be that person? But honestly I am forever grateful that she did because she probably saved us a lot of money and stress! Her experience was just more confirmation that Seattle was not to be where Greysen would have his next surgery. I got a message later that day from this doctor and first and foremost she sounded very rude and arrogant. Second, she told me that I would HAVE to make two separate trips to Seattle and that it was IMPOSSIBLE to do everything in one trip. Third, she told me in the first visit they would run some tests then SHE would decide if Greysen even needed to come back for a cecostomy. I immediately emailed our doctor's in Billings and in Denver and said we wanted to switch and have the surgery in Denver now. Within hours our referral was sent and Denver called me that day! It wasn't a nurse or a scheduling person that called me back, it was a DOCTOR! This was my first sign that we made the right decision. After she spoke with me she said she would talk with the team and then decide what the plan was going to be. The Doctor's in Denver had already decided that Greysen would need the cecostomy so this wasn't a matter of getting a second opinion. In fact, we have already have two doctors agree this is our next step. This was my main frustration with Seattle because we don't need to know IF he needs it we need to know WHEN. I'm not going to put my sons life in the hands of a doctor that is arrogant and having a power struggle. I need a doctor that has Greysen's best interest at heart and after this last week Denver Children's has my complete loyalty for the rest of my life.

Dr. Jacobson called me back on Friday after speaking with the head of bowel surgery. The plan has changed quite a bit from our original plan but I will explain why:

Greysen needs to come to Denver in the next few weeks to:

#1-Have a full bowel clean-out in the hospital 

• The full bowel cleanout is terrible. He cried and cried when I told him about it. For about 12 hours he has to drink this terrible tasting stuff called Golytely. Its like salted apple juice. YUCK! I tried to tell him that an NG tube would be a better option but he doesn't like that either. If he can't drink the juice and keep it down then he will have no choice but to get the tube down his nose. Last time he spent all day drinking the awful stuff only to throw it all up and end up with the NG tube anyways. Thinking about this makes me wanna cry. He was 6 then and now he is almost 8. 

#2- Get a new biopsy taken from his colon. 

• The Doctor wants Greysen to have another biopsy taken from his colon to be sure there are still nerves present. Hirschsprung's disease is caused by a lack of nerves within the colon or entire intestines. It's possible that not all of the diseased portion was removed during his first surgery so they want to be sure this isn't the case. It's also possible for nerves that WERE there during the surgery to die causing lack of function again. Once you have hirschsprungs you are never "cured". In fact, some of the nerves that ARE present may not function or fire correctly so removing the section without nerves does not mean you are healed after surgery. Such is Greysen's case.

#3 Get the Anal manometry testing at the same time he is under anesthesia.

• The anal manometry testing will be performed before the biopsy. This will test the:

• Strength of the anal sphincter muscles
• Sensation of stooling in the rectum
• Reflexes that govern bowel
• Movements of the rectal and anal muscles

All of this information will then tell us what surgery will look like in June. Our Doctor agreed that we could do all of this in one visit but that we would have to be there for about 2 weeks. The deciding factor in making two trips is this: If the biopsy comes back negative for ganglion nerves then Greysen will not be getting a cecostomy. He would be getting another pull-thru surgery instead. This would be another major operation and set us back a year and a half. More bowel would need to be removed which in turn causes more problems BUT could also help him. Again, it would be like his first pull-thru where we wait months after surgery to see how his body responds. We don't want this BUT a second pull-thru also has the chance of completely fixing him if all of his issues since surgery were due to lack of nerves. It's a gamble and it's one I don't wanna have to make again. Lastly, if his biopsy comes back normal the Doctor will then be able to schedule us for the cecostomy in June. The cecostomy would mean (more convenient) nightly washouts with no set date of reversal. It's not ideal but its the most predictable way for him to have a bowel movement, no accidents, and try to be a normal kid.

Kyle and I (and Greysen) need your prayers more than ever! We are going to expect the unexpected because we have no idea how all of this is going to turn out. Today we both agreed that we don't even know what or how to pray! Neither of these outcomes are what we want for Greysen but we have no choice. I feel comfort in knowing that God knows Greysen better than Kyle or I. He knows every detail of his body and he can use the doctors to heal him! Please pray for us, and with us, that #1 we would know WHAT to pray and #2 that God would guide the doctors thru all of this and that all tests would be definitive and bring answers and solutions and #3 that God would go before us and work out all of the details! As you are praying, if anyone feels led to share what God has asked you to pray for specifically I would absolutely love for you to share it with us! Thank you all for praying! Our family,church, and friends are what make this bearable! 

God can use poop

Thoughts on Greysen having Hirschsprungs: Today is Good Friday and I can't help but sit here, as I type this, and wonder, "Is this a glimpse of how God felt as he watched his Son suffer on the cross?" He sent his one and only Son to die for us. For people that would choose to reject him and hate him. He knew and knows that not everyone will accept him yet he still sent his one and only son to die for us! I know that some people may say, "If God is so great then why did he let your son suffer?" I say, "God is so great he SAVED my son from suffering... He saved him from eternal suffering." There are things in life that seem unbearable, unfair, and unjust. Its part of life. We live in a sinful world but its through those trials and situations that, if we look to God, we can see him working, protecting, and shaping us. I would have never asked for my son to have Hirschsprungs but there are invaluable lessons I have learned through it and hope that he will too. As he grows older, I hope that he can be a beacon of light and hope in this world. If God can use POOP to teach us lessons then he can do anything! If we look for the good in things we will find him. If we listen for him we will hear him. He is there. He is everywhere. And just in case you didn't know it...he loves you. I hope that this blog encourages you and brings a little hope to any of my readers. I'd also love to be praying for my Hirschsprung's family readers. Leave me a comment with any prayer requests! And if you don't believe in God that is okay too but I would love to still pray for you and your son or daughter. Thanks for reading today! I hope you have an extra special Easter weekend!
  

My superhero

When I am weak HE is strong!

I've been doing a bible study called "Gideon" that I did a few years ago. It is by far THE BEST study I've ever done. It's written by Pricilla Shirer and I promise you will LOVE it! It's about God using our weaknesses so HIS strength can be seen in us...when I am weak HE is strong! Every time I've done this study it's always been when I needed it the most. And lately I've needed it the most...

The past 4 months have been a time of uncertainty for me. I am exhausted. I am overwhelmed. At first, I was overwhelmed trying to figure out the next step with Greysen's treatment plan. After months of researching and weighing the pro's and con's I came to the conclusion that the appendicostomy would be the best next step for him. This was not an easy decision for me because it basically means he will have a stoma again... much smaller than his colostomy but none the less a stoma. Can I just say something? Scheduling a surgery in another state is not easy! I don't even know how to explain this but here is an example: When Greysen had to get his first surgery in Denver we were told he would just need one surgery. His doctor sent the referral and I spoke with the nurse in Denver. Everything was set to go and 2 weeks before his surgery we received his welcome packet with details of his surgery. The description of his surgery? Colostomy. Ummmm....we were never told he was getting a colostomy. You can imagine the look of horror on my face. I actually laughed when I read it aloud to Kyle and said, "Obviously they mixed up his packet with someone else's." I called the nurse in Denver to tell them of their mistake. Instead she informed that it was not a mistake and in fact he would be getting a colostomy. She also informed me that he would need to return 3 months later for a second surgery. This is kind of a big deal to hear this two weeks before surgery. As if I wasn't stressed enough about the cost of travelling for one surgery now we had to travel for a second one. And that meant I had to find sitters twice for the kids for at least a week each time. Its stressful for me! I know in the end it will all work out but that doesn't make it less stressful!

As if I wasn't overwhelmed enough with Greysen's stuff we've been realizing some things about our 3 year old Benley. After we moved to Big Timber last July we noticed a huge change in Benley's behavior. It became very difficult for him to function (properly) at church and around his peers. At home he was waking up 5-6 times per night after taking 2-3 hours to even fall asleep. He has always been a "difficult" child but it became apparent that he wasn't learning from any form of discipline. He has always been a sweet boy but yet he would walk up and kick people for no apparent reason. It never made sense to me because I never felt like he was doing it to purposely hurt someone. The more he interacted with our 22 month old Maddie the more we saw behaviors that didn't seem normal and Maddie was quickly passing him up in certain areas of development. This last December it got to the point where we couldn't handle it anymore. We weren't getting any sleep, Ben would have meltdowns that lasted 45 minutes, and we were at a loss of what to do. I started putting together some of his "strange" symptoms that, by themselves, didn't seem like a big deal. I came to the conclusion that Ben had a sensory processing disorder. I called and made an appointment with his pediatrician but they could't see him until February.

February finally came and we were able to speak with Ben's Doctor. He was actually VERY concerned about his behavior and wanted us to see another doctor as soon as possible. We left feeling very concerned and anxious. The soonest appointment with the specialist wasn't until the end of March! We prayed that God would give us answers sooner because we felt like our life had stopped. It's hard to move forward with something when all you have are questions and no answers. A week later the nurse called and said they had a cancellation and asked if we could come the next day! We dropped everything and made our way to Billings the next day. We went into the appointment expecting her to see some concerns then refer us to an evaluation clinic called "Full-Circle" for a diagnosis. Instead she gave us a diagnosis right then and there and it literally knocked the wind out of us:

The next month while we waited for Ben's evaluation for an "official" diagnosis (which wasn't until March 31st) we did a lot of researching and reading. When you hear the word "Autism" you automatically make certain assumptions (which I am sure you are doing right now as you read this.) We wanted to fully understand his diagnosis because, in all honesty, we didn't fully understand what Autism was. Before you tell me that you don't think my son has Autism or you "don't see it" I would ask that you would research High-functioning Autism and fully understand what it is. Also, if someone says they have cancer do you respond with "I just don't see it". No. Unless you live with someone that has Autism I don't think you can fully comprehend the daily struggle and what Autism "looks" like. Its different for every child and that's why it's called an Autism SPECTRUM disorder. Here is a link that explains it a little better

About a week after Ben's diagnosis we received yet another (answer to prayer) call that the Clinic had a cancellation and, "Could we come the very next day??!!!" Again, we dropped everything and headed to Billings that night because his appointment was at 8am the next day. I was so anxious and barely slept that night. Even tho the Doctor had already diagnosed him, part of me wondered if there was a chance she was wrong. Have you ever tried to make a decision, only to go back and forth about it until someone or somehow the answer is so obvious its no longer a question. Well about 5 minutes into Ben's evaluation with the 3 specialists, Kyle turns to me and says, "I think its pretty obvious we have an autistic son." And he was right. As of right now he has moderate Autism but with lots of therapy and PRAYER we hope to get him to a point of being mild. After the last few months of processing all of this I think we have finally come to the place of acceptance. It's hard to accept that ONE of your children has medical needs and now we have TWO! Someone said to me the otherday, "Wow the Lord must think you are really special to be able to handle this!" I couldn't disagree more. The Lord knows that "I" cannot handle this but he knows that HE can handle this....When I am weak, HE is strong!

We appreciate all the people that have been praying for us and helping us out! Please continue to pray for us as we navigate through speech therapy, occupational therapy, surgery and daily life!!!





 

The iPads are here!

If you didn't already know the iPads are here! The kids are so excited and I couldn't be more proud of Greysen for wanting to help others even in the midst of his own struggle. He is going to be making some more videos to let the kids know (thru their parents) that they will be recieving an iPad. As of right now we have raised enough to give away 8! I can't wait for the kids to get them in the mail! Here is the video link. They are just too cute for words;) 

http://youtu.be/8ZuEGYf9foE

The best way to help yourself...

....is to help others. Am I right? I don't know about you but anytime I have had a pity party for myself or my son it has never made me feel better. The times that I feel we can conquer this disease and get through the days are when we are focusing on helping others.... and that's exactly what we have been doing. I'd be lying if I said that this disease hasn't gotten me down the last few months. It has. But more so it's had Greysen in tears more days than I can count. It's getting to him. The daily irrigation's, the emotional toil of being so young yet being so brave. He endures a lot and we have tried very hard to not make him feel entitled. Yet at some point we have to confront the issue with him that YES this sucks and YES its unfair but lets make the most out of it. Feeling sorry for ourselves gets us nowhere, and in a sense lets this disease win. Its taken a lot from him but I won't let it take the things that are in our control!

So..... what have we been doing? For starters, Greysen and I decided that we wanted to raise some money to buy iPads for kids like him. When you have to do daily enemas you NEED a distraction. It takes 1-2 hours and (if it were me and I'm SO glad it isn't)  I definitely would need a distraction when that tube is going you know where. We set up a fundraiser to raise $1500 and within 6 hours we reached our goal! 6 HOURS! The support that Greysen felt, and his excitement, was unbelievable. People continued to give so generously that we made it past our goal! So far we have been able to buy 9 iPads! Greysen is so excited for the iPads to arrive in the mail. Each ipad already has a designated home so we will be sending them to their lucky recipients soon. The kids receiving them are all part of a support group that I started on facebook which leads me to my next project....

After being a part of several facebook support groups I decided that we needed one specifically for parents of older kids with HD. All of the groups are so helpful and beneficial but specifically I wanted one where people could come ask questions geared toward our older children. Having a baby with Hirschsprungs is so much different than having a school aged child with it! So now the group is up to about 140 people from all over the world. This group (along with the others) are my HD family. When I'm secretly crying or struggling with something I can go on there and know they will understand, love, and support me. They are such a blessing!

I only know of 2 other people in Montana with Hirschsprungs disease. One is a 14 year old and the other is my dear friend Mandy's son, Samuel (10-ish months?). After starting the facebook group I realized that if Greysen could connect with other kids his age just like him, then maybe he would feel the same support like I do from the HD moms! So I started a program called "HD Buddies". It's a pen pal program where people can email me their information and then get matched with a child of similar age, gender, etc. They are then able to connect on a more personal level and can get letters and photos the old fashioned way;) I've had so much response! Even parents of babies are participating. I hope this program forms support and friendships that will last a lifetime:)

So there you have it! Fighting an unseen battle can be so draining but what we learn from it can be used to help others! Treat others with patience and dignity because you never know what they are going through. And most of all don't feel sorry for yourself! There is always someone who has it way worse than you:)

Here is a video of Greysen explaining "Wishy Washy Time" in his own words and then asking people to donate money for the iPads:) Ignore his half cut-off head...its my first Imovie and I couldn't figure out how to fix it haha......I am so proud of this boy!

Greysen's Wishy Washy Video!