Thought I'd let you all know that we're still alive and kicking. I have been updating but at www.greenhouseminstries.org
You can catch us there. Hope all is well with all you, my blogging friends.
8/15/07 11:35 p.m.
Hard day today. For both Josh and me. We didn't even know if we'd make it to therapy we had such a hard time in the van on the way over. We were glad we went after we got there. Josh tried out a power chair and then worked on emptying his leg bag into the toilet. We all had some good laughs.
Josh's feet are still a mess. He got in bed a bit after 9:00 tonight and has been playing on his computer. He can keep his feet up while in bed which helps with the swelling. It's not made too much of a difference thus far. Please be praying that this situation is resolved soon. It is very taxing on Josh and such a discouragement.
Josh's birthday is Saturday. He will be turning 31 but doesn't want to do much to celebrate. We are going out with friends on Friday night which should be fun. When I asked him what he wanted to do for his birthday, he said he just wanted to forget it. Not exactly the answer I was looking for. :-)
Huge praise- Ephram slept 9 hours last night! It's a record by a long shot! We are praying it continues.
Just a quick update. Now I'm off to sleep. God bless!
8/14/07 2:30 a.m.
I can't sleep. I was laying in bed thinking when I realized I should let all of our blog friends know that my dad is doing well. To my surprise, my mom had already posted. One less thing for me to write!
Today was another busy day of therapy and doctor's appointments. Josh worked on the sliding board and may have had a breakthrough. His feet were placed differently before he began to move his bottom along the board and he moved soooo much better. We are praying this is a major step in the right direction.
We had an appointment with Josh's spinal cord doctor today. The appointment was at 2:15 and we didn't see the doctor until 5:30. To say we were frustrated was the understatement of the century. It was so ridiculous that we had the giggles about how much longer it could possibly be. My poor sister was watching all six kids here at our house with a very fussy Ephram on her hands. I think she was more than relieved when we arrived home. Thankfully, a meal was sitting on the counter which was a huge blessing on a day like today. It's amazing how God even takes care of our little needs.
A prayer request: Josh's feet are not doing too well. He has an ingrown toe nail that may cause dysreflexia, a blister on the side of his foot about the size of a very small plum, and the swelling is pretty significant. He is being sent to a podiatrist for the toe nail and backing off his nerve pain medication to see if it helps with the swelling. Please pray that these situations are resolved. Josh has been spending much of his time in slippers instead of shoes which makes him feel like he looks even more disabled than he already does. This may seem insignificant, but when the littlest things tend to get you down, you notice things.
I'm going to try this thing called sleep again. Much love.
8/13/07 3:30 p.m.
An update on Shelly's dad for all of you out there in bloggerland. He's fine. We got home from the hospital a little while ago. He had a stress test earlier today. It showed a small blockage in the lower portion of his heart and some muscle damage. But nothing they thought was an immediate danger. They left it up to him whether to stay and have it taken care of or think about it. We're thinking... The dangers of the procedure, according to the doctor, are about as great as his danger of having a major heart attack from the blockage. So, we're home for some time of quiet and stress relief and figuring out how to continue to handle the difficulties that are such a part of our lives now. Our love for our kids makes all of this truly a challenge to handle at times. It causes us so much pain to see them in pain, as any of you who are parents would understand. We're wading our way through this heartbreaking time, trusting that, as Josh shared at Daybreak yesterday, God has a definite purpose and plan in all of it. I have a quote above my desk from Chuck Swindoll that speaks truth:
In the darkest nights come the sweetest songs,
in the strongest winds grow the deepest roots,
in the loneliest places come the most profound character traits.
The things we run from are the very things that make us great.
We appreciate all of your prayers and concern.
Still trusting...
Jean
John's wife
Shelly's mom
Josh's (favorite) mom-in-law
8/12/07 10:45 p.m.
Josh spoke this morning at Daybreak in Hudsonville. The topic of his message was pain. We seem to know a bit about pain. His message even touched me, and I pray it did others as well.
Last night was a pretty rough night for me. I was feeling like I was teetering on the edge of going off the deep end. I say this a bit jokingly, but I had a rough night. I ended up calling my mom asking her to help me find where I was going (I am perpetually lost- even in the city I have grown up in). She heard me going off and she and my dad were trying to help. This stressed my dad out who just wants to protect his "little" girl.
So, today, my dad is still stressed. He stayed home this morning to watch my niece and nephews whose parents were away at a wedding. My mom came to the service to hear Josh speak and hand out fliers. I ended up getting a call around noon that my dad was having chest pain. He ended up at the emergency room. He is now at Spectrum Butterworth, spending the night, and having tons of tests run. They believe he had a heart attack and will possibly be placing a stint? tomorrow. When we were all in Miami, at the time of Josh's accident, my dad had his first heart attack. Since then, the doctor said to avoid stressful situations. Is this a joke? Don't kids love to bring stress into their parents lives? Sorry, that was a sick joke.
Anyway, please be in prayer for my dad. Please also be praying for my patience level as it is not so great the past few days. Josh has done an amazing job trying to keep me sane and from not completely losing it. It's hard for him when their is so little he can do for my physically. He does more than he realizes just talking to me and being the clear head in our relationship.
8/8/07 9:00 p.m.
So, I've been catching some flack for not posting sooner. :-) Our lives have been absolutely out of control over the last 2 weeks, but it seems to be slowing down a bit. Lots of doctors appointments, meetings, therapy sessions, and the list goes on.
This past Thursday, Josh spent the day recording a commercial for Mary Free Bed. We thought it would be an easy way to show our appreciation for what they have done for Josh, a real "quick" tape. We were so very wrong! When the cars and trucks started pulling in, you'd think that we were taping a movie in Hollywood. These people take their jobs very seriously! :-) There were so many lights and power cords, we blew breakers! There was a hair and makeup person, a gaffer (who used one of Josh's wheelchairs to move the camera), and many other people you would expect. Lunch was catered in. The whole situations was quite comical- not quite what we were expecting. We had a great time getting to know new people and spending some time with friends from MFB. The commercial will be running on the major network channels during the news and those kind of shows. You'll have to watch for it.
Josh has had an okay week. He has had many ups and downs, times where he is feeling encouraged and times when he is more than frustrated. He made a grilled cheese sandwich for OT today (with some assistance) and it took an hour. After he was done, he was quiet and asked if he would ever really use a skill like that. Just trying to open a bag of bread is a huge task. To get the butter open, he slammed his hands on either side of the big butter container and the top popped off (along with some extra butter). That was pretty ingenious. He continues to work at getting stronger- lifting weights, doing prone exercises with his shoulders and those sorts of things. His PT is on vacation this week so it's a bit different than usual. (Happy Birthday Kristy!) Josh has continued to stay up waaaaaay to late playing his beloved computer games. Some friends of his caught wind of how much he was enjoying Sim City so they blessed him with a few more! :-) Thanks guys... I think! :-)
All of the kids are doing well. Ephram is sleeping better at night. He now usually has a 6 hour span where he sleeps without waking up. This is much more manageable. He did sleep all afternoon so we are hoping he will still sleep tonight! He is smiling all the time and starting to laugh. He is getting quite the little personality and we are having so much fun with him! We had some family pictures taken the other day, and he would not cooperate. Oh well. If you happen to see the pic, you'll have to take note of the little boy with the flailing arms- he would not sit still!
I have had my ups and downs as well. I sometimes wonder how people learn to live like this the rest of their lives. There is not a moment's peace around here if we are trying to stay on top of everything. Sometimes I just forget the cleaning and am happy if the house is somewhat picked up. I have taken to going to bed before Josh and getting up when he is ready for bed. This way, we both get the sleep we want and neither of us is waiting on the other. If he goes to bed when I'm ready, he's awake for a few hours before he's ready to sleep. If I stay awake until he's ready for bed, I'm an absolute grump the next day! This momma needs more sleep!
I have been in prayer over where God wants to use us after this accident. I am starting to feel him leading me in a specific direction so we will see where that takes us. Josh is still praying and wondering how God wants to use him in this whole ordeal. He is speaking at Daybreak on Sunday. So far, this is how he has been telling people his story. On Sunday, he will be speaking on pain. God has allowed us to experience quite a bit and hopefully his words reach others for Christ.
Even in the midst of all this, God continues to bless our family and we are thankful for the life we share together. We continue to go through many challenges and changes and are still trying to figure out how this whole thing works, but we are thankful to do it together.
Prayer Requests:
-TOTAL HEALING
-Patience with all the difficulties Josh faces daily
-Spiritual growth and a reliance on God through this trial
8/1/07 11:45 p.m.
Today was the 2 year anniversary since Ava went to heaven. The day was very similar to today, here in West Michigan. It was in the low 90's and not a cloud in the sky. I remember sitting on the hill in front of our house on Auburn, with my mom, waiting for the paramedics to give us updates on their attempts at CPR. I remember the sun beating down on us and being aware of the heat but not really feeling it. That day forever changed who I was. I went from being a carefree, innocent mother of three to who I am today. So, who am I? I'm still figuring that one out. I know I am no longer carefree- I spent many nights checking on my three living children, making sure all are breathing. When you find your child like I found Ava, your innocence is forever lost. I miss that innocence but also treasure the changes that have taken place. I now know that no matter how bad things get, I can still rely on God. When things are so bad you don't think you can take another breath, he is often the most real thing you feel. It's when things start to feel a bit more normal that the desperation of needing God seems a bit less poignant. I know that I pray for my kids so much more than I did before we lost Ava. I never felt like I didn't pray for them, I just know how desperately they need it now. I feel honored to be able to go before a God who loves my children more than I and has all of our best interests in mind.
Today was a day of traditions that are just beginning. This being only the second anniversary, we are still trying to feel out what we think is important to do on this day. We went to the cemetery, let off pink balloons, talked about what we remember the most about Ava, and prayed. All of our kids were climbing all over her headstone and posing for pictures. Ephram never made it out of the car, he was taking his afternoon nap. I brought him out to the cemetery a few weeks ago so he has already "met" his sister. We then went out to Grand Haven and sat outside at a local burrito joint and just spent time together. The kids enjoyed running around in the sand and just being together. After this, everyone else went swimming and Josh and I headed off on a walk and got some ice cream. After nearly passing out from heat stroke, we decided to find someplace air conditioned and headed off to see a movie. We had a nice time together and had some time to ourselves to just talk.
Tomorrow is a busy day so need to head off to bed. I did want to mention some close friends of ours who are in desperate need of our prayers. I know how many of you pray for us when you read this so I thought I would put this out into blog land. Tiffany and Jason are in Ohio, adopting a baby who was just born at 24 weeks. You can imagine all the implications of a baby born this early. Isaac continues to fight but they all need prayer. You can visit their blog at tiffanyandjason@blogspot.com Hopefully the link works, I've never tried to create one like this before (and I'm not the most computer savvy girl on the planet). Much love to you all.
Prayer Requests:
-TOTAL HEALING!!! GOD IS STILL ABLE
-guidance in regards to moving to a new house
-for God to show us where to go from here, what does he want us to be doing in regards to this ministry we are setting up?
7/29/07 11:20 p.m.
We have another very busy week coming up. I am trying to gear up- attempting to catch up on some sleep and working on having a positive attitude. I have felt overwhelmed more than not as of late. It's frustrating to feel like I cannot keep up or remember everything I am supposed to be doing or getting done. I continue to get a ton of help but am slowly taking control of our lives again, one task at a time.
Josh had a tough weekend. It seems like numerous things happened that have been like a small slap in the face. Many things are happening around us that are wonderful, but for Josh it is bittersweet. It's like a reminder of the things that he can no longer participate in or is no longer able to do. Some friends of ours moved into Eastown over the weekend which is a wonderful thing. They live about a 2 minute drive from our old house. Josh was saying that we should still be living in the old house and walking back and forth to the others house. We had so many plans, and so many of those plans have changed over the last six months. The way he describes it is "bittersweet".
It's funny that he described his feelings yesterday as bittersweet because that is exactly how I feel in regards to Ava. Wednesday will be two years and the best word to describe my feelings is bittersweet. Bitter because she is no longer with us but sweet for the time we had with her. Sweet for the fact that she is in such a better place than any of us are. Sweet that God decided to take her home and that she never had to experience the pain of this earth or the heartaches that come along with it. Although I wish every day that she was with us, I know she is in a much better place than me.
The kids were gone over the weekend with some friends. Zoe has been hesitant to go away from home but was very excited for this trip because they have a pool!!! I called on Saturday thinking I would be picking them up but she wanted to stay "one more sleep". So, they came home today. They also were able to go to our old church in Kalamazoo and see Jonah, a great friend of the two of them. I love it when they enjoy spending time with their little friends. They are growing up so fast!
I am one tired momma and have little to say tonight, so I'll sign off early. Much love and God bless.
Prayer Requests:
-TOTAL HEALING
-Our emotional health and patience levels
-spiritual growth through this journey
7/27/07 9:30 p.m.
We've had a very busy week. I'm really glad it's the weekend and that we may have a few moments to relax. The past few days have been a whirlwind of doctors appointments, therapy sessions, meetings and the like. Josh had a good week- for that we are thankful! With his new computer, he has downloaded a version of Sim City. This is a video game of sorts he is able to play. For those of you unfamiliar with this game, it is a simulation game where you build your own city, have to earn and spend money, and try to get it to grow. Because it does not take quick hand movements, he is able to do this. He stayed up late two nights this week playing. It's nice for him to find something like this to enjoy.
Zoe and Ephram had their well-baby checks. Both got three shots. Ephram screamed bloody murder and Zoe was so brave. Her poor little lip stuck out so far and her eyes filled with tears, but she kept blinking them back. Why is it when your kids seem so helpless you love them all the more? After we were done she says, "that wasn't so bad!" I was so proud of how she behaved, knowing what was happening.
Josh went to a doctor's appointment today to see if he is a candidate for Lasik. Because he is unable to take his glasses on and off and clean them, he is very tired of them. He also smudges them easily when trying to push them back up his face. Anyway, the doctor said he is a great candidate and is scheduled to have it done August 23. We are very excited. He says he will also feel like he looks a bit more like himself without his glasses. Before the accident, he never wore his glasses, except around the house. He was a contact man, but, for some reason, he doesn't trust for me to put them in! :-)
Therapy continues for Josh. He continues to work on sliding board transfers, weight lifting and lots of functional skills. Today, he worked at looking up a number in the phone book and then he got a pop out of a pop machine. These tasks may seem a bit ridiculous to work at, but this is how we find out what he is capable of and what we need to work on. A lot of the time, we have to work on balance so he can do the task at hand and balance in his chair. Without any abdominal muscles, he has to work on his balance a TON! Thinking back to a few months ago, he has come so far. He is able to do things with his hands and arms and still maintain his balance in his chair. A few months ago, he sat in his chair with a belt around his chest to keep him upright. But, no longer.
Today was a tough day. Actually, the last few days have been tough. When I get so busy trying to get phone calls placed, papers organized, insurance dealt with, kids loved on, husband loved on, and the basics of running a household, I can quickly become discouraged. I have running lists everywhere, yet they never seem to be quite completed.
On Wednesday, August 1st, Ava will have been gone two years. It's shocking how much are life has changed. Two years ago today, Ava was still here with us and Josh was still walking. Much has been very hard but there has been much joy. It's odd to think that Ephram would not be here if Ava were still alive. He has brought us so much joy. He is smiling so much in the mornings and still being a little fussy-pants in the evening. :-) He's a little bugger and we wouldn't have it any other way!
The two older kids are gone overnight, so I'm heading to bed early. Good night!
Prayer Requests:
-TOTAL HEALING!!!!!!!!!!!!
-Josh's fingers and triceps
-Stability (emotional, physical, financial, etc) for our family- God continues to bless us here!
7/23/07 11:15 p.m.
Wow, two blogs in two days! Is anyone out there impressed? :-) I know I have dropped off some as things are not changing as quickly as they were earlier in our journey. I write today to let you know that God answers prayer. Today we received a check from Blue Cross for our med flight from Cancun to Miami!!!! God is good and he hears our prayers! When we got the call today that they would covering the flight, my mom and I were screaming. I called PT Kristy and her first word was "Hallelujah!". We are so thankful.
Another reason to be thankful: God has put us in touch with some amazing men and women of God. We met with them at length in regards to building. We will be having another meeting on Thursday when many more details will be coming. Know this- God is providing for us beyond what we could ever dream. Even when I am so frustrated I could just sit down and cry, God is still there. He is orchestrating so much in our lives. For those of you who may doubt the goodness of God's people, you need only look at our situation. The people of God continue to be used by God and amaze and bless us beyond measure. God is good.
So all these great things are happening so why did I have such a hard day? I don't know. I called my mom tonight and said of all these great things that are happening, why do I feel so poopy? Maybe it's because we're getting close to 2 years since we lost Ava, maybe it's because Josh is still not walking, maybe it's because Ephram is being a fussy-pants, maybe it's because I'm sleep deprived. Hmmmm. I guess that I'll just have to accept not knowing and be thankful for the many blessings in my life and not the struggles.
Prayer Requests:
-TOTAL HEALING!!!
-meeting on Thursday regarding building
-emotional stability for all
7/22/07 11:05 p.m.
We had a nice weekend with lots of friends and had an amazing time at the golf outing. All in all, it was a good weekend. The golf outing started out bright and early, but we didn't go until lunchtime. The weather could not have been more amazing and I could never have dreamed of all the people who would come out and support us. My uncle put in an amazing amount of work and (as far as I could tell) it went off without a hitch. Josh was so encouraged by it and his feeling encouraged is hard to come by!
We had friends over on Friday night and had some deep discussions about life. The guy who came over experienced the death of his mother just a hair over a month ago. It was very unexpected and has been very difficult. It got us talking about how, until something like this happens in your life, you always feel like you're invincible and nothing bad will ever happen to you. You also think that if it happens to someone close to you, you're chances are greatly decreased. It was a really screwed up conversation, fatalistic to say the least, yet a very real conversation. It's great to have friends that you can talk with about the very real things in life, even when they're difficult to talk about.
Last night was another night with friends. We had sushi around the table together and enjoyed each other's company. Things were light and carefree all night. We had a lot of good laughs and didn't want the night to end, so they spent the night. The morning was a lazy morning of coffee, gorgeous weather, and laid back conversation. We had a great late afternoon lunch and then headed off to church together. The service was great and Ephram stayed in the nursery the entire service. This is nice to feel like a part of the service again after spending the last few months in the nursery with him. We sang "Amazing Grace" and it had a great extra part I had never heard before. This song always speaks so strongly to my heart and makes me more aware of how we truly have to trust God with everything. When I sing "it is well with my soul", do I truly mean this or is this just what I was raised to sing? It definitely challenges me and causes me to take what I sing more seriously.
We have a meeting tomorrow in regards to building a new house. We are praying that God makes his will clear during this meeting. More info to come later.
Wednesday, Josh went to the Y and did end up going swimming. He felt like a spectacle, getting into the water, and he said that was very difficult. We used a flotation device around his neck and another around his waist. After a while we put a swim noodle under his knees and he worked on putting his arms above his head. Towards the end of the session, the OT and PT decided to turn Josh over, face down, in the water. After the experience of nearly drowning in the water, you can imagine Josh's trepidation. They turned him over and he tried to get back over. He quickly started shaking his head NO and we turned him back over. He was pretty shaken up but went right back at it. After a few minutes of coaching and strategizing, they turned him over a few more times. He never got himself back over independently, but he did make progress. After we were finished, he said how "crazy" (his words, not mine) it is that if someone put him in the water and didn't help him, he would die. Pretty scary stuff but we're glad that the first water experience is now under our belt.
I am now heading off to bed and pray that Ephram sleeps well tonight. We has had the pukies and so he has been out of sorts. He seems much better today.
Prayer Requests:
-TOTAL HEALING
-our building meeting tomorrow at 3:30
-emotional well-being as a family
6 months
7/17/07 11:00 p.m.
A big praise! Josh got all of his computer equipment with all the adaptations! If you know Josh, you know he is a bit of a computer geek (makes me love him all the more!). Anyway, he now has a new laptop (he's sad it's not a mac but what do you do?) voice recognition software that is amazing, and numerous other pieces of equipment to help him navigate the computer. I keep hearing him say "scratch that" which tells the computer to delete or undo what it just did. He is also able to turn everything on and off with voice commands. In the near future he will start posting also. Right now he is getting to know how the whole thing works so he may need a few days.
Our kids went to Grand Haven to camp in G & G's trailer. Noah did not go to sleep until quarter to one last night. Little stinker! They are having a blast. Holly is also out there in the pop-up camper with her three kids so our kids have plenty of playmates. Hopefully it will be nice enough to go swimming in the lake tomorrow. It's been a bit overcast and rainy today.
I'm going blueberry picking with a friend in the morning. Because I don't have all three kids with me, I thought it would be a good time. I'll carry Ephram in his sling. I love blueberry picking time. I haven't gone in a few years and I'm looking forward to it. I'm also looking forward to all the blueberry pancakes and blueberry pies to follow. I grew up eating frozen blueberries so I figure our kids should do the same!
Josh has had a few good days. Your prayers make a huge difference! We are both feeling a bit more encouraged the past few days. I have spent some extra time in the Word this past day and a half with the kids being gone. Why does it seem like I have no time to spend reading my Bible and sitting quietly and praying, and then things go haywire. I do have a few minutes a day to check friends blogs and check my e-mail. Hmmm... maybe I need to look at my priorities. God has sustained us through two major trials and continues to do so, yet when I feel a little better, I get complacent. Sorta screwed up but true none the less. Ephram is listening to mommy read Lamentations aloud to him while he eats in the middle of the night (good thing Josh is a hard sleeper). Maybe not the most encouraging for an 8 week old but he'll survive! :-)
Josh is going to be swimming at the YMCA tomorrow. He is NOT looking forward to it but his therapists think it is important. We have finally run out of excuses and will have to do it. With his usual sarcasm he says, "What am I going to do? Kick my legs?" Funny guy huh? Anyway, we are not sure of the goal we are working towards, but they haven't let us down yet.
Speaking of our therapists, they are amazing. MFB could not be a better place for Josh to heal. Every person we were put in touch with while there were incredible. It seems as though the people they hire are a step above every other nursing establishment we have worked with since this accident. Every time I am unsure of why we are doing what we are doing, it becomes clear in a life skill. For example, when Josh started working at sliding board transfers, I realized all of the things he had already learned prior to putting it to use. He had strengthened the muscles needed to move his body (lifting weights), worked at balancing his body while sitting up (bouncing a balloon back and forth while sitting up), and many other tasks. Every time I think we have plateaued and progress seems hard to come by, something exciting happens that Josh is able to do that he wasn't able to earlier. Even though new muscles have not come back as of late, he is figuring out how to do so much more with what he does have. This makes me proud of him.
My husband is amazing. The things he has gone through the past 6 months, no one should have to. Yet, he continues to try and have a positive attitude, still encourages me non-stop, and is an amazing dad even when he thinks he is not capable. Just because he cannot pick up Ephram makes him no less of a father. Every time I put Ephram's head up to Josh's face and Josh is talking to him and kissing on him, Ephram quiets right down. He knows his daddy's voice.
Well, it is now officially after midnight (I got a little sidetracked) and today is 6 months since Josh's accident. Half a year has come and gone and we are all still breathing. So much has changed since January the 18th, yet God remains faithful...
Prayer Requests:
-TOTAL HEALING
-spiritual growth and encouragement
-Josh's triceps
7/14/07 11:45 p.m.
I know, I know, it's been a while. No good excuses, just lots of busyness and lots of emotional stress. The past 10 days have been the hardest for Josh emotionally since his accident. We spent almost one entire night up talking, crying and not sure where to go from here. So, a little background information. Not many changes in Josh's condition over the last month or so. He continues to get stronger with the muscles he has but nothing new has come back. What it really comes down to is Josh is losing hope. Hope that he will ever walk again. At least on this earth. Hope that God's plan for his life is to heal him. What if God's plan is to use this injury to bring him glory but to keep Josh in a chair for the rest of his life? We know what the chances are medically speaking. We are VERY aware of them but we also choose to concentrate on the power of God. We know, beyond a shadow of a doubt that God is capable of healing Josh. Be it overnight or in small increments. We don't really care how it happens, we just plead with God to do so. We also know that Josh will walk again- no doubt. We just desire him to walk during this lifetime and not before his new body when we get to heaven. Did that make sense? If you are not a Christian, you probably think I'm a little crazy in the head. :-)
Hope keeps us going. What does one do when hope is lost? This is terrifying for Josh. We read in many places that it takes 5-7 years to get to a point where you accept your limitations and move on. When we lost Ava, everyone said it would take 2 years for life to start a new sense of normal. We were finally getting to that point after 18 months. It was such a freeing feeling. A feeling of thankfulness to God for carrying us through the valley and getting us through the other side. The average of 5-7 years seems like a lifetime from now. We cannot think of it this way but continue to take it a day at a time.
Emotionally speaking, Josh has it so much harder than me. But he also has the power to try and make the changes he shoots for: to get stronger and tackle therapy, to keep up with electrically stimulating his muscles, to choose to have a good attitude and the list goes on and on. I feel powerless when he is struggling. When he feels defeated, I have to listen to him cry, feel him wrestle with his body when he is angry and not being able to move, and try and be the stable person in his life. I want to scream, cuss, spit, throw things, and be angry in general when he is upset. I want him to know how mad I am too, not to be the one to try and keep things in perspective. He needs me to encourage him, to put him to bed, to rub his sore shoulders, to quiet his leg spasms, to give him his meds, to feed him, to pray with him, to pray for him, to just be his wife. I want to be angry and be allowed to be angry for more than a few minutes. To be allowed to stomp out of the house and run away for a day. To not have to be the responsible one. If I don't get up with him in the middle of the night when he's dysreflexic, who will? Who loves him like I do? Only God could love him more and he's not the one getting up in the middle of the night to turn Josh. I need to be here. I need to be the one to love Josh when he needs me most. To be the support that he needs. To be there for him, for better or worse, richer or poorer, sickness or in health. These were my promises and I meant them. I just never imagined us to be here.
In the middle of the night the other night, we talked about our God. Who is this God we serve? When Josh was in the hospital in Miami, God was so close we felt like we could touch him. His nearness was palpable. The comfort he gave beyond words. That God is no less real. The God we know right now is sovereign, powerful, mighty. The God of comfort seems far away even though he is no further than he was 5 and a half months ago. Why does it feel different now? Our "God of all comfort" is near, yet we continue to hurt. We continue to wonder how to make it to the next day.
Nighttime is better the last 2 weeks. Since figuring out the dysreflexia issues, sleep is more consistent. Fat feet are becoming more of a norm too because Josh cannot have his feet up all night. Fat feet lead to tight shoes and blisters. Blisters are discouraging. Night spasms are keeping Josh awake and causing his legs to jump on and off all night long. This also leads to blisters on his heels. Now he can only wear slippers or the shoes we cut he backs off of. He is tired of this. All these things continue to be something Josh has to deal with.
Not much luck with Blue Cross. I don't thing they like us! :-) I think they have caller I.D. and put the rudest person on the phone with me when I call. They probably don't like me arguing with them. Oh well, they have my money and I'm going to fight for it!
We did find out Josh can get a power chair through Medicaid so he will be getting a power chair. Just not the one to afford him all the independence he was hoping to accomplish with the I-BOT. We know that if God wants him in that chair, it will work out.
A few comments from people have led me to believe that the story of Josh's accident was never fully explained so I thought I would take a moment before I close and give some background info for those of you who never heard the whole story:
The whole story actually begins almost 2 years ago on August 1st of 2005. The day we lost our daughter Ava. She was sleeping in her bedroom on the second floor when the box fan, meant to cool her room, fell out of the window and into her crib. It pinned her face into the mattress and suffocated her. I never heard a thing on the baby monitor. Around 1 p.m. I went upstairs to wake her up and found her under the fan. I performed CPR for 7 minutes before the paramedics arrived and continued to try and revive her. After 45 minutes, they pronounced our little girl dead. Josh was not home. He found out on the phone on his way home to meet us. We got to hold her before they brought her to the funeral home and say goodbye together. It was horrible but wonderful to see our little girl one last time. We buried her in Allendale, under a beautiful tree where the breeze always seems to blow.
After much thought and prayer, we decided to try and have another baby. We found out in October we were expecting and we were soooo excited. This led to us deciding to have one last vacation before the baby arrived. Enter Cancun.
We arrived in Cancun on January 18. Our rooms were not ready when we arrived so we threw our bags into a room and headed to the beach. We laid around on the beach for about 20-30 minutes before the boys got restless and decided to go for a walk down the beach. After only walking a few hundred feet, they decided to go into the water. The waves were huge and there was a big drop off into the deeper water very quickly. Josh stood in the water, just above his knees, where the waves were crashing. He dove into one of the massive waves, a surface dive, and was turned upside down where his head hit the bottom. He was immediately paralyzed. He was not knocked out and knew immediately something was very wrong. He tried to get up to the surface of the water to breathe but was unable. Brad (our friend, along with his wife Sarah, who were vacationing with us) thought he was joking. After watching for a few seconds realized something was really wrong. He arrived to Josh at the same time as the lifeguard. They very carefully removed his body from the water. By this time he was unconcious and had swallowed lots of salt water. While getting him on the beach, he started coughing up the water and came to on his own. A crowd gathered around him and this is what Sarah noticed. We got up to check out the commotion and I realized it was Josh. From the looks of his face, his color and the way his legs moved as the waves hit his legs on the shore, I was convinced something was very wrong. The paramedics came and brought us to a hospital in Cancun. While in the ambulance, Josh said over and over, "Get me out of here. Get me out of here." He was meaning out of Mexico and back to the U.S. We arrived at the hospital and his oxygen saturation levels were very low, even with oxygen. This is because of all the water in his lungs and losing the muscles in his abdomen and around his lungs to breathe. His diaphragm was doing all the work to breathe. They immediately put in a breathing tube and took X-Rays and a CT scan. It was obvious that he has broken his C5 vertebrae into 3 pieces. After deciding it was not compressing on his spinal cord, they said we could fly. We took a med flight on a Lear jet to Miami, about 12 hours after the accident. We arrived in Miami, my parents meeting us at the entrance to the ER (they were vacationing only about 45 minutes from Miami) Josh in a drug-induced coma. After a crazy day of everyone from home arriving in Miami, we found out that the bones were compressing his spinal cord and he needed emergency surgery. The surgery went well. After he got out of the surgery was the first time I could breathe and feel like he might survive. All of the doctors kept talking about "life-threatening" infections. Many of the doctors were amazed he had survived in the water and survived on his way to the hospital, now he had to beat the infections that would present themselves because of swallowing all the sandy salt-water. Those infections never arrived. God saved Josh for a purpose. After 2 weeks in Miami, we took another med flight into Grand Rapids (I have never been happier to be home in all my life!) and went straight to Mary Free Bed Rehab Hospital. Josh spent almost 3 months there.
You know the rest of the story, at least as far as it has been played out. We have now moved to a new home on the west side of Grand Rapids. God continues to protect our family. Seven weeks ago, a little boy named Ephram joined our family. He has brought us great joy, but will never be a replacement for Ava. We continue down this road, wondering where God will lead us and what he will be doing next...
Prayer Requests:
-TOTAL HEALING!
-Emotional stability and healing
-Guidance in helping our children cope with all the changes they have gone through
7/6/07 11:00 p.m.
A little excitement around here. We knew it had to happen, and it did. Last night, Josh was out with friends. On his way back to the van, he had to go off a curb which he has done dozens of times. Well, this time, it didn't work. His foot plate hooked to the pavement and he flipped over forward. He did get his hands out in front of him, but he has very little strength in them so they didn't do too much good. He has road burn on his face and a cut above his eye. Other than that, he is fine. We were talking with PT Kristy on Monday and she was happy it hadn't happened yet, but also a little surprised. Well, it didn't last too much longer. We were talking about it today (and also practiced curbs a bit more) and she was saying that he needed to "go for it" when going off a curb. He was being too cautious (and if you know Josh, that is not the norm). When practicing today, he would do a wheelie and go off that way knowing the wheelie bars in the back would catch him if need be. It worked well.
Next, we worked on sliding board transfers and Josh did amazing!!! He did the best he ever has, by far! I was so excited for him. We are seeing so much improvement in this area over the last three weeks. He also made a batch of brownies which went quite well (other than the 1/2 cup of vegetable oil that landed in his lap). We cooked them when we got home and Zoe asked if daddy did them "all by himself?" It's funny how much she understands that things are hard for her daddy.
We had a nice 4th of July. We went to the fireworks in Allendale which were okay. Nothing great but a lot easier to get to than the Grand Rapids fireworks. There are so many considerations to make concerning Josh right now. We knew walking over a mile to the fireworks and the massive crowds on the way back after it was over would not work very well. Allendale just seemed like the logical choice. We went with some friends and my mom and dad. The kids all had fun with sparklers and enjoyed the fireworks. Josh was disheartened seeing all the dads playing in the grass with their kids and he is not able. Being out in public and seeing how normal everyone else's life is makes it hard for Josh. There are so many massive adjustments he is going through right now. We just need to keep praying for him and for God to give him the strength to deal with this all.
We are continuing to struggle with Blue Cross. We have not gotten anywhere since this past Tuesday and we continue to try. We are also trying to see what God is trying to tell us to do with this situation. I do not want to be bitter about it, but I also know that we are not the only family dealing with unfair insurance issues. We have only until the 17th of this month before our insurance will be over so we have many decisions to make before this. Please be praying that we can be advocate for Josh and others who are in the same situation as us, but that we do it with the attitude of Christ and not out of anger.
much love, I'm off to bed...
Prayer Requests:
-TOTAL HEALING
-guidance involving insurance
-Josh's emotional health
7/2/07 11:10 p.m.
Josh and I are sitting in the living room together, watching the Discovery channel, while we are shocking Josh's arms. This is slowly becoming a normal part of our day. Another routine we are doing daily to allow for Josh's body to heal.
The two older kids are staying with G & G Buck for 3 days. Both kids were so excited. Noah was excited to mow grass on Grandpa's tractor and Zoe just wants to be with Grandma every second of the day. I'm sure they are having fun, staying up late, and eating lots of junk food! :-) That's what grandparents are for, I guess!
Josh had a good day of therapy today. We will not have it on Wednesday because of the 4th of July. I think he will enjoy having a day off. Today, he continued to work on sliding board transfers. He continues to get stronger and more proficient at moving his body in the ways needed. Improvement seems slow on a day to day scale, but when we look at what he was doing a month ago, progress is very obvious (and encouraging)! During OT, he lifted weights and worked on emptying his catheter bag independently. This will allow for him to go to work or be on his own for more than 3 or 4 hours at a time. Without emptying his bag, he will become dysreflexic (I hate that word!). This is just one more skill that will allow him more independence. This is only the second time he has attempted this and it went much smoother than last time. Other than one of the straps falling in the toilet, it went off without a hitch! Yes, we threw it in the trash!
We are continuing to have trouble with Josh's power wheelchair being approved by Blue Cross. They have not denied it outright, but they are now telling us we have to buy it outright and they will reimburse us what they will cover. The real issue is the fact that they will not tell us what they will cover until after we purchase the chair. We have no idea what they will cover, and are not encouraged by what we hear from others. Josh will be making a phone call to Blue Cross tomorrow morning so please be in prayer that something happens. We know that God has a plan for this, but it is so frustrating and my patience is being tested to the max!
Josh has gone 2 nights in a row without becoming dysreflexic during the night! We really feel like we have figured out what the problem is and are so thankful! These bits of encouragement make me realize that God cares about the little things- even how much sleep we get! Josh is able to go to sleep and not be uncomfortable, covered in sweat, all night through. What a blessing!
Ephram is starting to sleep better. He gets up every 3 hours to eat but is than going back to sleep quickly. This allows for all of us to get more sleep and mommy to be in a much better mood during the day. :-) This mommy needs lots of sleep! It has been a few nights since he has been up for an extended period during the night. Now that he is sleeping better and Josh's dysreflexia issues seem to be under control, sleeping is much more enjoyable!
That's all the news for today. Please remember to be in prayer tomorrow morning when Josh makes the phone call to Blue Cross! Pray that Josh is put in touch with the right person and we can get the information we need. God is able!
Prayer Requests:
-TOTAL HEALING!
-Blue Cross and Blue Shield - pray that they agree to pay for the flight and inform us of what they will pay for Josh's chair
-emotional stability for our family during this time
6/5/07 11:55 p.m.
I quit.
I'm tired, stressed, everyone needs more than I have to give. A group of people left my house a few minutes ago and left a huge mess. The baby is crying and really doesn't want anything in particular. My back hurts from getting Josh into bed. I'm frustrated at having to problem solve getting the heater close enough to Josh to keep him warm. I'm just frustrated. That's all there is to it.
I was leaving church on Sunday night, struggling to load three kids and too much stuff. I had finally gotten everyone buckled, and was pulling out feeling frustrated at how hard everything is when I saw a girl from church walking across the road with her three kids. Her husband had their youngest child on his shoulders and the older two were walking next to her. She was working hard at carrying her purse. :-) I was jealous. I admit it.
Tonight, a group of girls were talking about all the movies they've rented lately. I haven't been to Blockbuster since the accident. I felt like the odd man out that has nothing in common with the people I'm with. My life is so different than it used to be and today I feel yucky.
So, yes, I'm having one of those "life is too hard" moments. I'm feeling sorry for myself and starting to annoy myself. I try and remind myself that God knows how much I can handle and will give me no more. I need to remind him that I'm not that strong. I'm tired and my fuse is short.
I'm too tired to think of much. One thing to note. Our church is helping to throw a Boogie Skate at Terry Hall skating rink in Grandville. People were talking about it tonight. The skating rink is letting us use it and the entrance fee is a donation. The money will go to us (yaaaay!) to help us out with all our bills. I've not been roller skating in probably 15 years so it should be fun. Even though our church is sponsoring it, I was told to give the info out to blogland that everyone is invited. We would love to see you, meet you, talk to you and watch you show your moves on the roller rink!
I'm too tired. Please pray for my sanity and patience with my family. Please pray that Ephram starts sleeping better at night. Pray that Josh is able to continue to handle the changes that have taken place in his life. Pray that we know how to be good parents to our kids while we keep throwing all kinds of changes at them.
Much love. Night-night.
6/2/07 10:20 p.m.
Josh has had some pretty decent days over the last few days. He has been busy going to therapy, being ranged, and hanging out with friends. Our house is a crazy house of people always coming and going, random people spending the night and other's on their way out. We also still have a lot of people from church coming and going and babysitters for the two older kids coming and going a few hours a day during the week. All the help that we get around here is incredible.
Yesterday, Josh headed to the arts festival downtown. For those of you who are not from this area, once a year Grand Rapids sponsors an arts festival that consists of all kinds of music, dancing, art and many others. It is a huge festival and tons of fun. For therapy yesterday, Josh met his therapists downtown to work on getting around in this type of environment. Josh's brother drove Josh in the van and dropped him off a few blocks from where he needed to be be. Josh had to wheel himself 6 blocks and after he arrived, his batteries in his wheels were dead. He was pretty frustrated about this. He talked about how hard it is to be on your own and know that if something happens, no one is right next to him. He also said he feels like people do not respect people in chairs. He has spent the last half of his life towering over people and is now in a very different situation that is difficult to deal with. He struggles to see over the top of counters, looking people in the eye because they are so much taller and many other similar situations.
Today, we walked to the end of our road and took the kids to Sandy's Donut Shop. This is the second time Josh has done this and the kids love it. Josh got stuck on the sidewalks four or five times but didn't seem too frustrated. It's a nice little outing for the kids and something Josh can do with them. We also reap the benefits of the donuts once we arrive. We saw some neighborhood people there and it makes us feel like we're starting to make some connections here in this new west side area.
The kids are doing well. Zoe has been making some comments about how she likes our old house better and wants to go back. I am a bit concerned about her and her adjustment. I think she is probably just venting, but I want her to be a well adjusted child who is not "damaged" by all the negative things going on around her. Both of our kids have had a lot to deal with in their short lives, and it's sometimes difficult for me to trust God to protect them, their little minds and hearts. One of the women I have met through this situation talks of how her daughter has had some emotional struggles a few years after her husband was injured. Please pray for God to protect our children and to give us the wisdom on how to handle this situation in the best way possible. I do not want our kids to feel like they missed out on something or that they got the short end of the stick in regards to the struggles we have gone through.
Ephram is getting bigger and bigger. He has been decently fussy today for the first time. We hope this is not the start of something! :-) There is always a lot going on around him and we could really use a good baby that sleeps well. The sleeping has gotten a bit better so mommy is feeling a bit better (the nap today was great too!). Zoe continues to dote on her little brother. Yesterday when she woke up, she skipped coming to mommy first and went to see her brother. She kissed all over his little head and made up a little song "I love you little guy." This is her term of endearment that she came up with all on her own. It cracks me up it's so cute!
Josh figured out how to drink a cup of cofee day before yesterday. We were both so excited. I don't like feeding him coffee because I'm always afraid I'll burn him and it's something difficult to drink when you have no control. Anyway, I had poured the coffee in a mug that is significantly smaller on the bottom and it gets wider at the top. After getting his balance centered, he is able to drink the entire cup independently! He had this huge grin on his face like he was so proud of himself. It was cute and I felt so proud of him.
Noah is almost done with school for the year. We are looking forward to having him home for the summer and Zoe having her playmate all day every day. Last year was hard before we got some of his behaviors under control. He is such a hyper little guy, he hits the floor running every morning, yelling and jumping about 2 minutes after getting out of bed. He is quite the little bundle of energy. Since Josh and I decided to put him on medication this past fall, everyone's lives, especially Noah's, is much more enjoyable. We don't worry about him so much and wonder what danger he will find next. Yes, he is still a handful, but he is so fun. He would swing and ride his bike from the second he got out of bed if allowed.
That's all for today. I am heading off to cuddle with my little boy. Much love.
Prayer Requests:
-TOTAL HEALING!
-Prayer for our children and wisdom for us (the parents just trying to do the right thing)
-Emotional stability for Josh
