Wednesday, September 15, 2010
More Testing,More WAITING and honesty from Denise
9:00 p.m 9/14/10 Ryder is fasting8:00 a.m 9/15/10 Went to the children’s hospital with Ryder today to get more blood work. It took 1 hour to check in and confirm insurance. Our insurance wasn’t open yet so the check in lady couldn’t verify the already approved payment for tests.9:00 Followed the yellow turtles to the radiology floor like the admissions lady told us to do (2nd floor) We spent 55 minutes waiting for the nurses to bring us back for the blood test. They were learning how to take the blood test that Ryder needed (these test are so rare that they needed to be sure how to conduct them). Even though it was frustrating having a very hungry baby wait that long—I was okay with it because we have already been called back for more test because the nurses didn’t do it right 1st---so better right then a do-over During that time I copied the tests they were doing so I knew later—They tested for Krabble Disease, metachromatic leukodystrophy, phytanic acid screen for peroxisomal disorders and, plasma very long chain fatty acids. These test will be sent to Kennedy Krieger/ Medical Genetics Lab/Bayor College of Medicine. I was told it will be 1 to 2 weeks for results.10:00 We were ready for the blood test. In my recent experience of surgeries and getting blood drawn—it was easier after a warm cloth was applied for a few minutes to help w/collection. I asked for some warm blankets to heat up withdrawal sites. Ryder was such a trooper---He was poked several times in his right arm with no results. He was poked in his left arm collecting about 4 vials of blood, but it slowed down. He was poked again in his right wrist and another 7 vials of blood More testing, more Waiting and Honesty from Denisewere collected. He cried/screamed and wiggled for about 10 minutes and ended up falling asleep for the last 3 vials taken.1:30 Noah, Ryder and I had an appointment at WIC for some help with nutritional supplements/food while I’m out of work. Ryder got pricked again—testing his iron levels. They came back low—I was thinking because he was fasting and had all that blood drawn earlier, but the WIC nurse disagreed—who knows? Noah was fine. We did qualify and it will help with food for the next several months.When I got home I researched Krabbles Disease—Please don’t let this be the diagnosis. I read up on it and found a lot of similarities including MRI, development, vomiting, irritability as a little baby, & nystagmus. I had Les look at the info and he didn’t see the similarities—hope he is right. I am sick after researching this today---PLEASE DON”T LET THIS BE THE CASE!!!!! I’m still waiting for the “woops he’s okay” news!!!MY (DENISE) Honesty and point of view right nowI spoke with my mom a few days ago about a blog I recently posted. I thanked Blue Cross Blue Shield for the speedy approval. Mom thought I should write a note thanking God and all the prayers for Ryder. I told her I wasn’t ready for that yet. I believe in God. I believe in the power of prayer for myself. I feel that prayer gives me strength and prayer of others builds a community around me and our family to be strong. I am having a hard time believing prayer deals out miracles or a cure. I love my family. I feel a great connection with God, I don’t blame my God for any of this, but I am still dealing and sorting out my feelings about that. I am open to any conversation and understanding from friends or family…please comment for me. Please don’t remain anonoumys—leave your name. And please understand I am confused right now and would love to think about others opinions.
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I just want to echo Denise's comments on faith. I believe that God exists and that there is a purpose to life and absolute justice and reward for living a good life when we leave this world. I don't however subscribe to any religious doctrine. I believe in prayer but don't believe that a child ever suffered because someone didn't pray or believe enough. Please continue to support us spiritually in your own way because I dont believe that there is a wrong way to be right. Les.
ReplyDeleteMy professor shared this with me in my first Special Education Class. While I pray that it is not the case with your family and that Ryder is ok, it still is a great perspective on how god works.
ReplyDeleteP.S. I would love to schedule a playdate with you!
The Special Mother
by Erma Bombeck
Did you ever wonder how mothers of disabled children were chosen?
Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"This one gets a daughter. The Patron saint will be Cecelia"
"This one gets twins. The Patron saint will be Matthew"
"This one gets a son. The Patron saint.....give her Gerard. He's used to profanity"
Finally He passes a name to an angel and smiles. "Give her a disabled child".
The angel is curious. "Why this one God? She's so happy"
"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel!"
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she'll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."
"But Lord, I don't think she even believes in you"
God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness"
The angel gasps - "Selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally she won't survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says "Momma" for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see...ignorance, cruelty and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side"
"And what about her Patron saint?" asks the angel, his pen poised in mid air.
God smiles "A mirror will suffice"
Hi Denise,
ReplyDeleteThe only part of what is going on in your life that I can comment on from experience is the faith in God part.
My oldest son (now 19) was diagnosed with B-cell lymphoma 3 weeks before his 16th birthday. As soon as we got the diagnosis I let the entire staff at the school I work at know and our church know to ask for prayers from everyone. I even had friends put us on prayer lists at their churches. It only took 7 weeks from diagnosis to remission and 11 weeks total for treatment. When Julian was diagnosed he was at stage 3 (stage 4 is the worst) because he had cancer above and below the diaphragm. It was through sheer luck that Julian even found the malignant lymph node when he did. The surgeon that removed the lymph node said in all his years in medicine he had never seen a malignant lymph node above the hip bone - they are always in the arm pits or groin area. Had Julian not found the lump when he did his cancer would have gotten much worse - he would have ended up with tumors in his abdomen which would have caused real problems.
So pray like you have never prayed before and have everyone you know and their friends pray. I will be praying for you and your family.
One more personal note--- My dad was/is an acoholic/abusive dad/husband. To outsiders he betrade himself as a very religious man. Once we were home---total different story. I went through years and years of my life dealing with this and finally came to acceptance and taking control of my own life 4 years ago after being hospitalized for depression. I have been great the last few years--but not at all ready to deal with this new stress.....
ReplyDeleteDenise,
ReplyDeleteI believe the power of prayer and the power of positive thinking. Ryder needs your good thoughts and cheerful conversation. I have to be honest with you, when things are bad for me I seem to challenge Gods purpose for me. But in the end I ask that he remain by my side in challenging times and I have faith that my needs will be met. God will not let you down, he will be there for you and Ryder and the rest of the family. My Prayers and good thoughts are always with you. -Windy
Life has so many aspects and deceptions. Just because you attend church, as you found out, doesn't mean you are a Christian. Your father used the name God so that he could fit in where he thought he could and used it as a cover up for the damages he was doing to his family. He damaged your out look on a what could be a very beautiful thing.
ReplyDeleteYou know how I feel. I am in LOVE with God and follow him. I make mistakes but I do believe in prayer. I do however believe just like you. I believe that we are not cursed because of our disbelieve. That is just unthinkable. Actually my mom was accused of that when P.J. was diagnosed. It is ok to want to yell and scream at God, that is what he is there for. It is ok to be mad at him, that is what he is there for. He knows how hurt and lost you are. He knows that you are struggling and in anguish. But he also knows that NO matter the outcome YOU, LES, NOAH (Jaxson UU A Frog Hog), Tyler, and RYDER will somehow, some way be OK. There will be ups and downs. But the beautiful thing that God has built for us is the wonderful network of family and friends and that along with his glory is an absolutely amazing thing. When you are feeling down their prayers are being heard, even when you don't think they are. Believing in the miracle, or faith, is the first step to having an answer to a prayer.
It is ok to feel this way. He understands. We understand. We are here for you. We love you. We will continue to pray for you and your family (my family ).
Gardner Family
Denise, You have an amazing family and super great friends that even when you are stressed about all you sre going through you can lean on us and receive all the powerful prayers that are coming for sweet Ryder. Please stay as positive as you have been. I love you and will say a special prayer for any confusing thoughts you may have concerning your relationship with God. JOycee
ReplyDeleteSo sorry to hear about today, so hard for baby, SO hard for Mommy & Daddy...
ReplyDeleteRegarding your questions on faith, even though I have a strong personal relationship with Christ that has gotten me through some very difficult times in my life, I still don't understand why certain things happen. I will definitely have a lot of questions when I meet God, and those involving children and suffering will be at the top of my list. That being said, I would be feeling very similarly in your situation. You guys do an amazing job embracing others and reaching out for support and that's a lot more than some parents could do in your shoes. Try not to be too hard on yourself in any one area as you go through the enormous stress of a situation that is more than any parents or child should ever endure. I believe prayer can bring miracles some of the time, but more than that I believe prayer helps us not have to shoulder so much of life's stress and pains ourselves. Personally, I know I wouldn't have gotten through life without God by my side even though I may not understand everything, I've said often I choose to share a daily relationship with God, because I know I'm better off WITH him than without him. Faith to me is about believing in something we can't always see, something we can't always understand and about helping us through life that isn't easy. What's also comforting is knowing that no matter what happens God never leaves our side even when we leave his. I believe his love can pull us through anything.
As far as your last personal note about your father Denise, I'm so sorry you had to endure that. So many of us have had situations unexplainable as a child or even adult which is one of the hardest things to understand. It's also so damaging on the perception it gives many about religion when those things are done by people who claim they are of faith. I think a lot of people struggle with seeing others either in their personal lives or from a distance that claim to be of faith but have done so wrong to others. Sadly, it happens too often in our world. More than disappointing, it's downright disheartening and can damage others perception on what God really does for people. I try to remind Tony this too, it's not about other humans we come in contact with or even people in the church, it's about our personal relationship with God. People claim to be a lot of things on the outside, but only God knows their heart. I've had to remind myself this many times... Please hang in there and know that everyone's prayers, good thoughts, love, and support are on your side. You and Les are both amazing parents, wonderful people and will come through this. Sending hugs your way!
Love, Tamara
However you feel about God and religion, prayer is positive thinking. This is essentional for healing and thriving. Positive energy has been linked to remission in cancer and other conditions.
ReplyDeleteYou're not just hanging your hopes on God curing your child, your working hard to find an answer for him.
Prayer is a tool for us to gather strength and courage to do what needs to be done every day.
Denise and family, I do believe in the power of prayer and know that it doesn't always come when you want things but when God thinks it is time. Having patience and faith will keep you strong. I have you all on my prayer list and know that this is very hard for you but keep hoping and knowing that your strength will come !!!! Joy
ReplyDeleteI believe in God and don't know how I could get through without my faith. I believe in the power of prayer and pray for you guys so often throughout the day...for clarity of what's going on, for Ryder to feel good, for drs to figure this out, for good news and good diagnosis, for you as parents, for Tyler and Noah, for your finances, strenth to keep getting up and living each day to its fullest. I know God hears our prayers and will be with you guys through this if you let Him.
ReplyDeleteDenise,
ReplyDeleteFirst, I'm so sorry that you and Ryder are going through this, I can't imagine how helpless you feel.
I agree with others that you shouldn't shy away from prayer, I'll lift all of you up in mine too.
It is very difficult to try and understand God's plan for us and others in our lives, especially in the midst of something difficult. Being a Christian, or simply believing in God doesn't mean everything will always come up roses. Not once is that promise made anywhere in God's word. The people we love are sometimes taken from us unexpectedly or at times that don't seem fair or right.
Given an eternal perspective though, reuniting with our creator in his perfect place should be an exciting thought for all of us. I know it doesn't seem that way quite often.
Trying to determine God's will or plan is dangerous place. It usually only makes sense with the perspective of time. This may be a test of your faith, it may be a season of growing strength for you, it may be something that may seem unbearable...I obviously don't know. I trust that God has a plan for each and every one of his children and that as a believer they are ULTIMATELY good.
Meister
For myself, knowing I am not in control brings me great comfort. God, who knows all and has the power to change all, is. God cares for my family in such a complete way I could never match. If all God needs from me is faith, so be it. That I can do. Love, jess h
ReplyDeleteHey Denise,
ReplyDeletePoor Ryder. I am not the one that likes to get pricked either and especially 10 times. Hopefully and I am praying for this that the test results goes in a positve way. That was probably a night mare for Ryder and hope better days come for you and Ryder.
I know that my Mom didn't have fun taking me to the doctors all the time and feeling sorry for me. Even feeling sorry I had to do Therapy all week long, hardly getting a day off. It worked out though and I thank you Denise for being my Tutors all those years. We did have bad days where we didn't get along. You stuck with it though and I am doing just fine. I thank God and my parents finding you. I believe in God always. He is given me the right people to work with in life. I truly believe God has found Ryder the right people to work with and one of them is selecting you and Les to be the parents of Ryder. It may not seem it is happening now. I know though if you can wait and be patient, you will see that postive result. I have been in that situation asking where is God. It turns out he was with me the whole time just it wasen't the right time yet. God knows timing very well for all of us.
However, it is hard to believe that right now God is helping you. That's fine though, I am here though to relax and take it slow right now. I know that God understands of what you feel right now. Thanks for your updates and I hope the best this will end soon and hopefully can spend more fun time with Ryder. I believe it can happen considering being patient and waiting. It will happen one day.
Deise & Les
ReplyDeletePlease read your E mail. I tried to blog last night and of course since I am technicaly challanged couldn't get it to work. Scott showed me how this morning.
Take Care
Love Amy
PS Can't wait to see you on Friday
Dear Denise and Les,
ReplyDeleteYou have questions for God. Totally understand. When our Hannah was diagnosed, we asked them too. I would literally stay awake all night demanding answers, blaming God and ultimately myself. All that brought me was exhaustion and anger. Then we stumbled upon this verse from the Bible, from John chapter 9. Jesus's disciples are asking him what caused a man to be born blind. Was it because of his sin or his parent's sin? Jesus replies: "His blindness has nothing to do with his sin or his parent's sin. He is blind so that God's power might be seen at work in him." Wow! I can't tell you how much comfort that brought us. I believe now that is the way God always works. Can you see that already happening? I can! You're reaching out, questioning God, questioning your faith, asking for prayer, needing answers, where maybe you wouldn't have before. That alone makes you stronger. It has changed you already, for the better (although you probanly don't realize it yet) and will keep changing you. Ryder's journey has also already touched so many people, and through him bringing together a community of faith to support you, comfort and guide you, and pray for you. And many of them have been changed too. I totally see God's hand in that! You may not see this now, through your heartbreak and confusion, but as time goes on I believe you will, and you will never be the same. You will come through this a completely new person, with faith unbelevably strong and with a new understanding of God's love and grace for you. That is God's power working through Ryder. I believe God's power is still working through Hannah too after all these years and that is why I felt like I just had to share my story with you. My prayer for you is to always feel God's love and grace shining on you no matter where the journey takes you. Many prayers, hugs, and blessings to your sweet family. Love, Janet
Niecie,
ReplyDeleteI was going to send you an email instead of blogging because what I have to say is quite personal. Instead, I gave it considerable thought and have decided to publicly respond to your honesty and openness. I know you mean well and you and Les are dynamic teachers that know how to shift into high gear and make things happen but honey, your heart's in the wrong place. I only have good intentions when I say that your focus should be more on building your relationship with Jesus, thanking HIM for what you have and asking for prayer and support. Believe me, as I know from experience, "love the lord your God with all your heart and with all your soul and with all your mind and with all your strength" Mark 12:30. If you do this, your needs will be met beyond belief. You can only know this if you are a true believer. I know how abusive your father was to you, your mother and your brothers and sister. He was a handful to your grandmother and grandfather and myself as well. And yes, he did hide behind the guise of a righteous man when he wasn't. The fact is, that is no reason to block out having a personal relationship with Jesus. Jesus didn't cause all those years of pain and suffering. Your dad did. "And we know that in all things God works for the good of those who love him, who have been called according to his purpose" Romans 8:28 Something good came from all of that. Look at the closeness, the love, the bond that you and your mother and siblings have. All of you are stronger and united because of it. Attending church doesn't make one holier than thou, for there are many wolfs in sheep's clothing. I read your blogs and I get frustrated over the absence of praise for your many blessings. God the father sacrificed his only son so that we may come to know him. Can you imagine how HE felt? Niecie, Les, you haven't lost Ryder, he is still very much alive! And you also have two other beautiful sons, rejoice, be thankful, give thanks and praise to the Lord. You don't know what God has in store for you and your family but be assured something good will come from this. Maybe it's HIS way of bringing you back to HIM. HE gives us trials to strengthen us so that we may come to know HIM better. I too have been given trials and each time emerged stronger in my faith and walk with Jesus Christ. It gives you a sense of peace within your heart that's beyond describing. You say you have a hard time believing that the power of prayer can cure and provide miracles? I lost my older brother when I was only seven years old. During that trauma, my parents fell apart and my mother (your grandmother) got into a serious auto accident and was hospitalized for almost a year. My brother, sister and I were separated during that time because our aunts/uncles couldn't take us all together because they had children of their own. As you know, I had two unsuccessful kidney transplants and then spent 10 years during the youthful years of my life (22 - 32 yrs) on a dialysis machine, 3 days per week, 6 hours each treatment. I was very sick and thin and the heart was weakening. When there seemed like no hope I was blessed with a 3rd transplant. One that I have today 28 years later. Shortly afterward when I was still reeling from my gift of freedom from machines and hospitals, your grandmother whom I loved dearly died after 3 months in intensive care. I was there in her hospital room holding her hand alongside grandpa when she passed on. The grief I felt was beyond imaginable. I was like a wayward son who lost his way and faith as well. Because of it, my marriage of 10 years ended and so didn't my job of 16 years. Sure, I could of blamed God for everything HE did but the fact remained, HE didn't do it.
Continued:
ReplyDeleteInstead I cried out for help and inner peace and in time, in HIS time, he blessed me with so much more than I could of asked for. He put your Aunt Penny in my life and gave me a joy I thought I could never experience again. Only this time it was better because it wasn't my choice it was HIS choice to pair us. But that's not all. At age 33, I was suffering a side effect to both eyes from taking a medicine needed to keep the transplanted kidney stabilized. I couldn't see well enough to drive any longer. Your aunt and I prayed intensely for a miracle, and it came. A doctor had just developed a brand new procedure for implanting lenses to restore vision. It was a relatively new procedure that hadn't been performed on many people but the doctor was confident that I would be a prime candidate. There was only a 50/50 chance that it would either restore my sight or cause irreversible damage to my vision. We prayed as we had never prayed before. The doctor implanted a lens into one eye and another in the other eye 6 months later. Today, I only need glasses for fine print reading. In 2000 my hips were badly deteriorating from long-term use of the same medicine. Two doctors determined that I was limping as a result of "old age." Being only 40, this was unacceptable and a third opinion was sought. This time I was immediately confined to a wheelchair and told that my hipbones were on the verge of breaking beyond repair due to bone degeneration. If I had fallen, they would have broken to the point where I would have been confined to a wheelchair for the rest of my life. God knows how hard your aunt and I prayed. and others too. Please Lord, I want to walk, I want to run, I want to just be able to stand...please. I had both left and right side hip replacements 8 months apart. Today I am still standing and I can see! Some months later there was a recall on the materials used in hip replacements. Thousands of people who had hip replacements had to have them redone. I was not one of them. Praise God!! HE not only answers our prayers, HE will give you so much more if you just allow him to come into your life. My hearing has deteriorated over the years as the medical condition that originally took out my kidneys has been gradually taking my hearing. To think that as a little boy so long ago I had always had to wear hearing aids. Back then they were quite primitive and all the other kids would make front of me. What's truly amazing though, is that I have any hearing left after 60 years. I may be deaf in one ear but the audiologist keeps telling me that somehow my other ear has been holding steady. I can't hear water run or birds tweet but I am thankful to God for what I have left. Aunt Penny calls it selective hearing. She says I only hear what I want to hear when she's talking to me:) Niecie and Les, God does perform miracles, there is nothing to doubt. I am a living testimony to that. Baby Ryder needs God's healing hands to mend and strengthen his little body. The problem is, he's too little to ask Jesus himself. He's relying on mom and dad to do it for him. Pray that he grows stronger everyday, the results of the tests come back with positive findings and that Jesus restores the peace and calm in your hearts once again.
Love,
Uncle Bob-
Just wanted to send you some virtual hugs! A friend who went threw a lot with a sick child told me she had this phrase she would repeat to herself over and over to get threw each day, find something that inspires you and can help keep your spirits up (her was- I CAN do hard things)
ReplyDeleteDear Aerdnak78, it is intersting that you quote the excerpt from Erma Bombeck's book. I believe it may have been from "I Want to Grow Up, I Want to Grow Hair, I Want to Go to Boise." I remember being around 13 and my mom telling me that Erma B. wanted me to write about what it is like to have a brother with cancer. She published my thoughts in her book. I remember thinking about the faith that I was sure was the only way to avoid damnation and it made me think of the the 13 year olds of different beliefs in my situation and the supposed futility of their prayers to false deities. I grew fast in those thoughts to conclude that the framework of my faith was unique from all others and based on Jesus and the Bible but not exclusively correct. I came to realize that God was gracious and loves all the little children regardless of the doctrines in which they are raised. I dont believe that God cares whether we praise him or not and honestly I believe that, if he worked in this way, he would tell the most devout of us to get off of our knees and work to make this world a better place. My faith is strong and I know that if your God demands justice and good and provides forgiveness and peace then that is my God too.
ReplyDeleteGosh-- I just can't sleep and got up to write this. My wheels are turning about everything!!!
ReplyDeleteJust need to put these ideas out there after some responses--
1. I do believe in, love and follow God.
2. I view God as my Father. As a parent, I don't want my kids to praise me or worship me. I want them to understand me and have their own unique relationship with me. My teacher side has --and will always--- pose questions and seek answers to everything! I teach my kids and students to ask away until they are comfortable with their understanding. I have one son who is sensitive, loving, curious, adventurous, an artist, a genius, loyal, poetic, inspiring and amazing. Another son is spunky, hilarious, curious, unique, imaginative, stubborn, marches to his own drum, musical--or a rock star as he puts it!, athletic, and smart. And yet another son who is determined, inspirational, happy, beautiful, a snuggle bug, brave, tough, and just pure joy!!! I LOVE my boys for who they are and what they bring to our family and our lives. I AM BLESSED and would't change a thing. I love my boys soooooo very much and have a different relationship with each--yet don't favor one over the other. I feel this way about God. We are all of his children--all have our own relationship with our God and we aren't favored or judged by our unique ways of understanding/learning or growing in our relationship with God. I also know as a parent, my kids won't always understand why I do or lead them in certain directions--but still always want them to question and not just follow because I SAID So (heehee)
3. The bit on my dad--just added it in so some may have an insight on how I question others religious views compared to actions they show. I do not blame God for what I went through nor do I blame him now. I am at peace with where I am in life and at peace with my past. I take responsibility for myself and do not blame others. I've learned to be honest, lean on others when I need help and help others in need. We travel through this life together!!!
4. I am using this blog to vent and bounce ideas off you guys, looking for feedback and different ideas and views. During the day--I'm all about cherishing every moment with the kids and Les. When they sleep---I research, stress out and wonder!!! I will not take my family or blessings for grant.
5. I use my own medical mis- diagnosises, pain
and wasted years (not being able to move and enjoy life fully) along with my special ed/nursing classes background to advocate for Ryder and not leave his health in only God or the doctors hands-- I know my baby the best and will not ever stop taking care of his needs/growth/happiness---anything!
6. Yes finances are hard right now. I really could care less about material stuff. I know we will never be homeless. I like a simpler life w/out STUFF--makes me feel connected and less stressed. Of course the uncertanty of housing, food--etc. is stressful--but I know it will all work itself out and I've been getting amazing help on that end allowing me to not worry about that stuff.
hmmmm--think everythings off my chest now---maybe I can sleep--I'll give it another shoot;)
Night once again everyone:)
XOXOXO
Denise