I was about 17 weeks pregnant when we found out that Caleb had Spina Bifida and Hydrocephalus. I remember sitting in this little office with Glenn and the "genetic counselor" came in with this book and she turned to the section on Spina Bifida and read to us. We were told terrifying things about our baby boy and of course we were offered termination (several times actually). That was never an option for us and I quickly switched doctors. I remember that day so well, like it was yesterday. I felt like my world was falling apart. I remember sitting on our couch, just sobbing and telling God that I couldn't do this, that is wasn't fair and that I didn't want this for my baby. I was mad at God for about a day and then I realized that I needed Him more than ever and that there was no way I could deal with this without Him. People always say that God never gives us more than we can handle, but I don't think that is true. I think we are often faced with situations or circumstances that we can't deal with, at least not without Him walking beside us and sometimes even carrying us through it.
Caleb was born on August 9th, 2005. I had a scheduled c-section so all the necessary medical professionals were ready to meet Caleb's needs. I didn't get to hold him, I only got to see him as they wheeled him by me. There is something so unnatural about that, not getting to touch this life that has been in you for 9 months.
This picture was taken right after Caleb was born, this was the very first time I saw him.
This is the opening in Caleb's back. Some babies with Spina Bifida have a sac that covers the opening but Caleb didn't have that. I was so glad that Glenn was there to get this picture, otherwise I never would have known what Caleb's back actually looked like.
Caleb had his back closure and shunt placement when he was only 6 hours old. Poor Glenn had to deal with that pretty much on his own because I was recovering from my c-section and pushing that morphine drip button every chance I could.
This is following Caleb's surgery. You can see how large his head was due to the hydrocephalus so the shunt placement was an absolute necessity.
Caleb's sweet little head after shunt placement. It was amazing how quickly the shunt worked, his head started getting smaller and smaller. Thank God for the man who invented the shunt!
I just think this picture is so sweet.
Caleb was in the NICU for 13 days. Probably the hardest 2 weeks of my life up to that point. Glenn and I would spend 7+ hours a day by his bed, talking to him and holding him.
Caleb smiling, he smiled all the time. I know everyone says it is just gas but I like to think he was just a happy guy!
I hated everything about him being in the NICU. I hated feeling like I had to ask permission to hold my own baby. It was a joyous day when we got to bring him home.
Finally home!
So that pretty much sums up the start of Caleb's journey. It is now a 5 year long journey and one that I feel so blessed to be a part of. We have certainly had many ups and downs. Spina Bifida is very complex and it affects so many aspects of Caleb's life, not just his mobility.
Caleb is now 5 years old and he started Kindergarten this fall. He is doing things we were told he would never do. He walks with AFO's and a walker. He also uses a wheelchair because his legs do get tired. He loves watching NASCAR and Monster Truck videos. He loves to color and write. He plays baseball through the Miracle League and he absolutely loves that. He is a wonderful big brother to Benjamin.
You can't help but smile looking at this boy. I have days of sadness, times when I feel sad for him. But then I remind myself that Caleb isn't sad. He's not unhappy at all. If he isn't sad, then why in the world should I be?
Caleb is absolutely amazing and an inspiration to me. I am in awe of all the things that he has accomplished. He absolutely blows me away and brings me so much joy. I thank God on a daily basis for blessing my life and trusting me and Glenn with Caleb. God must have seen something in me that I didn't see in myself because He knew that I could handle this (with His help of course). God gives me a peace that I wouldn't have otherwise. Our lives would be so different if Caleb didn't have Spina Bifida, I can't even imagine things any other way. I think about all the wonderful people I have met that I wouldn't know if it weren't for Caleb. My life has been touched by so many other moms that share the bond of having a child with SB. I don't walk this road alone and that makes all the difference.
I met my husband Mike in High School, we were sweethearts from the start. We have three children, all boys and we are currently living in Stansbury Park, Utah.
When I was expecting Tucker, I was very sick for 6 months I couldn’t keep anything down! I kept having feelings like something wasn’t right, that I needed to have him checked. One morning day I woke up early, I had an uneasy feeling , I KNEW something was wrong. As we traveled to the hospital to see my Dr., we were listening to the radio and they played the song “Angels Among Us”. This incredible feeling came over me and I knew that God was speaking to me. I knew He was sending me an angel.
We had an ultrasound done and the Doc said everything looked good. So we went home, but over the next couple of months I continued with the promptings that something wasn’t right. When we went in for a second ultrasound, we found out it was a boy. During that ultrasound, he got really quiet. It is a moment I will never forget!! He went over and over the baby’s head, measuring it. I then asked if there was something wrong with the baby’s head. He said yes there was, that there was a lot of fluid in his ventricles. They told us to go for more tests and an ultrasound. I left the doctor’s office feeling so scared and worried. Realizing this is why I had felt uneasy for so long, that something wasn’t right the whole pregnancy. Mike and I traveled to Utah with my mom waiting for the unknown. We met with a doctor who looked at the ultrasound who asked if anyone had told us what was wrong with our baby. I said we know he had hydrocephalus. He told us that our baby had Spina bifida and told us to meet with a genetic counselor and get an amniocentesis. I was in shock and remember thinking “what is Spina bifida?”
Mike was going through his OB rotation for nursing and so he had a book with a lot of information in it. We sat down and started reading. I went to get some things we needed. When we met back up, I said, “I feel like his name should be Tucker.” Mike said I was just feeling like that also. His name was meant to be Tucker.
We met with the Genetic counselor and she informed us more about what was going to happen. She told us that as soon as he was born they would do surgery to repair the bubble on his back and would place a shunt in his brain to drain the fluid off. She then told us that he would most likely be paralyzed from the waist down. She also said he could be a vegetable and he would have a lot of needs. We listened to this for 3 hours and took it all in, but my emotions were at the verge. I don’t know why but I was trying to be strong… strong for myself, my husband, for my mother and for my unborn child. The counselor then said “you don’t have to hold it all together. This isn’t fair, it is ok to be sad.” I then burst into tears!! I was scared and felt so alone and sad at that point. We then left her office. We stood in the hallway at Primary Children’s Medical Center… my mom, Mike and I holding each other and crying for what seemed like an hour.
We then went to the Jordan River Temple and walked around, sat and talked and cried. Mostly I was just scared wondering what our future held for our first born and for us as his parents. I was seeking for peace and comfort of any kind! We then went to my Aunt’s house where she gave us a place to stay for as long as we needed. I will never forget that night! It was late and we were so drained emotionally, physically, and spiritually. Mike and I got on our knees and prayed for the Lord’s help, it was the most amazing prayer and I felt my Heavenly Fathers arms around me! The feeling that came over us was peace and comfort. We poured our hearts out to Him, telling Him how we didn’t know what we were to do or how it was going to be, but we knew it was His plan and we would do our best to accept whatever was in the future. We then climbed in bed and cried and talked and cried and talked. Mike had fasted all day and the day prior so he was exhausted and he fell asleep.
I lay awake for quite awhile with my heart aching. This was the hardest thing I had ever faced and I wasn’t sure how I was going to do it! Thoughts kept going through my head that I may lose my son. I wanted so badly to just be able to give it to the Lord, but I felt so heavy with sadness, I just wanted our baby to be ok. As I was laying there the words to the song “Angels Among Us” came into my mind and I then had this incredible feeling that I was being sent an Angel. I felt the Lord very near as well as Tucker. I had peace fill my heart and comfort came to me and I was able to go to sleep.
The long two months ahead were hard! I was depressed for like a week and didn’t want to talk to anyone or do anything. I laid on my bed a lot and the couch feeling sorry and asking the Lord “Why?” I remember crying one night while feeling like this, and people had been calling to wish us luck and let us know they were praying for us. I felt so sad inside and was crying when I heard a voice of a little child say, ‘Mom, don’t be sad that I am coming to earth to live with you.” I got chills and it became so clear to me that I needed to be excited, that he was coming however that may be and for however long he was to be here. I realized how he must have felt for us seeing us mourn his coming so much. I then made a clear decision that I was going to be happy and enjoy this time.
It was much easier from then on. We were at peace with whatever the Lord saw fit to give us! People of all faiths were praying for us, calling us and fasting for us! It was amazing to see the outpour of love, even from strangers!! We felt close to the Lord because of so many kind hearts! We truly were being blessed and saw amazing things happen! Our love for each other grew. We still remember this being the hardest time of our lives, yet the most rewarding time also!
Nine years ago on August 30th, at 4:38pm, Tucker was born. He weighed 5lbs., 13oz. and was 21” long. He was so beautiful and strong and did very well right away. We instantly had this amazing love for him and felt his little spirit. He was so sweet and never cried, the nurses said he was so good.
I was at the U while he was at Primary Children’s. It was very hard and I wasn’t able to nurse him because he was having surgery the next morning. I wasn’t able to hold him either until he had had the surgery.
I was so excited to get to know him and love him and care for him. Tuesday morning he went in for surgery for his back and shunt, and everything went well.
September 5th (7 days later) we were able to take him home. I will never forget the love that was shown to us by people in our congregation, friends and people around us! One kind woman told me, “You will gain a greater love for the Savior through your child! You will come closer to the Savior because of the service you will be giving to your son.” That really hit me and I felt so inadequate to raise this special little bundle God had entrusted me with!! What an honor and gift from the Lord!
Really I do not know if I could have made it through this without the strength of friends, parents and members of our church. You know the eternal plan our Father has for us truly brought me comfort many times and still does! To know that because of the Savior, Tucker will be made whole, brings great peace!! When he was 3 he would always tell his friends and strangers that the Lord was going to heal him and make his legs work when he saw the Savior. I was always amazed by his strength and his faith!! I still am really. He is always so strong, still through all he has been through, he still continues to know that the Lord is there for him and that he will be ok.
When he was 1, he spent 30 days in the hospital and there were moments I thought we were not going to be able to take him home! Through that time I struggled with giving it to the Lord, I really feel like that was a lesson for me! He was very sick, and I found myself on my knees a lot! Towards the end of his stay at Primary Children’s I was having a conversation with the Lord. I was telling Him that I just couldn’t do it anymore and that I needed Him to take over, that I needed more strength. As my husband and I were on our knees the most incredible feeling came over us and filled the room. I felt as though the Savior himself was in the room and I remember opening my eyes and looking around the room to see if He really was there. I wish I could describe the feelings that were in my heart. I was given strength and peace and I then KNEW He was watching over us and we were to endure whatever was to come.
Tucker has no feeling from his knees down. One day when he was 5 his socks and braces were off and he had felt his feet with his hands and felt like they were cold so he put them on the fireplace to warm them up. He then said, “Mom look what I did to my feet.” I nearly had a heart attack! We took him up to the University of Utah burn center and we waited for two weeks to see if they would heal on their own. One foot did and the other one didn’t so we had to have skin grafts on that one, which meant another surgery. He healed fast after that and still has scars to show for it.
The hardest part for me is to see all his buddies doing the things Tucker would love to do!! I see him struggle sometimes silently, that is the hardest. He has never complained to me about his situation. He has asked me why he is like that and why he can’t walk. I tell him everyone is different and that is what makes us special. When he struggles with things we watch a video or see someone who has a hard road also and then he is ok. When he was really little, maybe 3 or so he would say, “Well mom at least my arms work and I can see what I am doing.”
All the time he finds the positive about his situation. He is always teaching me so many things!! I truly feel like it is an honor to raise him and that he has made me a better person for what we go through each day!
Today Tucker is 9 years old and a ton of fun! Nearly every day he asks me if he can have a cell phone. We tell him he can have one when he gets a job and buys his own. He really wants to be treated just like any other kid and works hard every day to try and accomplish the same things other kids his age are doing! Every Saturday for 3 months he plays wheelchair basketball. That has been really good for him!
Last summer the shunt that he had for 8 years stopped working. He had to have 3 different surgeries within a month to repair the shunt. The first stay lasted about a week and a half and then the second one lasted over night and we had to go in the next day. Then he started school the next week.
It was a rough summer, but once again he was such a trooper! You never know with shunts, but we have been blessed to have had so many years of it working, when it wasn’t it was hard.
One thing I have learned from all of this is that the Lord does hear and answer our prayers. It is not always the way we want it, but it is always for the best. Even if we do not understand at the time, we will later!
When he was little he would cry whenever the hymns were sung!! We would go to church and he would cry through most all the songs. It wasn’t a scared cry, just a cry like he was feeling something. He is still like that, anytime truth is spoken to him, he gets emotional. He is very tender-hearted and close to the spirit! He loves to sing country with me and loves almost all the Primary songs. He loves family home evening and wheelchair basketball. I have seen his self esteem increase since he has been playing. He has a ton of great people around him and they are easily drawn to him. He has a great, cheerful almost silly personality.
We have been blessed by so many strangers because of him!! He got a guitar for Christmas and is excited to learn how to play. There really isn’t a day that goes by that I am not grateful for him and the spirit he has brought to our home and the things we have learned from him!!
We have been looking into VEPTR rods because he has scoliosis and lordosis. We have put it off for a year now and know that is our next step. That means a surgery every 6 months from here on out. We are not excited about it and are praying for peace again!
My advice to other parents is to love each day with your children and don’t stress the small stuff! There are so many things to learn from these amazing little people and their strong spirits. They truly are a gift.
Now when we hear the song, ‘Angels Among Us,’ we know that is our song for Tucker and feel the words are so true and that is our little answer from our Heavenly Father to let us know we have an angel!
My favorite book to read when I feel like I am struggling with things, and hope to share it with Tucker more fully as he gets older is, ‘Finding Peace in Troubled Waters, 10 life preservers for when your ship springs a leak,’ by Art Berg. He himself is inspiring!! Look him up. AMAZING!! Other people we love, Mike Schlappi and Chad Hymas. Their stories and lives have also been amazing!! I have also been inspired by the book, “No Excuses” by Kyle Maynard. Another good book is “When your Prayers Seem Unanswered” by S. Michael Wilcox . I have read so many it is hard to choose but I think these are my favorite.
One of my favorite quotes is by Orson F. Whitney. He said, “No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude, and humility. All that we suffer and all that we endure, especially when we endure it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable, more worthy to be called the children of God. . . and it is through sorrow and suffering, toil and tribulation, that we gain the education that we come here to acquire and which will make us more like our Father in Heaven.”
My husband reminds me, too, when things get hard, that if we want to sit with the Lord in heaven, like our Savior, we have to go through these things and prove ourselves worthy to be with them. That always strengthens me and helps me because I am certainly not greater than the Savior, and my trials seem small in comparison. It helps me to put things into perspective!!
One more quick quote and then I will be done, is by Ezra Taft Benson. He said, “ Men and women who turn their lives over to God will find out that HE can make a lot more out of their lives than they can. He will deepen their joys, expand their vision, quicken their minds, strengthen their muscles, lift their spirits, multiply their blessings, increase their opportunities, comfort their souls, raise up friends, and pour out peace. Whoever will lose his life to God will find he has eternal life.”
~~~
I have a special place in my heart for Tucker and his family. Mandy found my personal blog through the blogosphere. In response to a post about the hard time we were having getting insurance approval for a stander for my daughter, she emailed me and offered to donate the stander Tucker had outgrown. The stander has brought to pass miracles in my life.
Tucker is currently in need of a new wheelchair. A fund has been created to help raise money for this good cause. If you're interested in donating, go to Ability Found: Speedy Wheels to find out how.
This picture was taken right after Caleb was born, this was the very first time I saw him. 
This is the opening in Caleb's back. Some babies with Spina Bifida have a sac that covers the opening but Caleb didn't have that. I was so glad that Glenn was there to get this picture, otherwise I never would have known what Caleb's back actually looked like. 
This is following Caleb's surgery. You can see how large his head was due to the hydrocephalus so the shunt placement was an absolute necessity.
Caleb's sweet little head after shunt placement. It was amazing how quickly the shunt worked, his head started getting smaller and smaller. Thank God for the man who invented the shunt! 
I just think this picture is so sweet.
Caleb smiling, he smiled all the time. I know everyone says it is just gas but I like to think he was just a happy guy! 
Finally home!
I was at the U while he was at Primary Children’s. It was very hard and I wasn’t able to nurse him because he was having surgery the next morning. I wasn’t able to hold him either until he had had the surgery.
I was so excited to get to know him and love him and care for him. Tuesday morning he went in for surgery for his back and shunt, and everything went well.
September 5th (7 days later) we were able to take him home. I will never forget the love that was shown to us by people in our congregation, friends and people around us! One kind woman told me, “You will gain a greater love for the Savior through your child! You will come closer to the Savior because of the service you will be giving to your son.” That really hit me and I felt so inadequate to raise this special little bundle God had entrusted me with!! What an honor and gift from the Lord!
It was a rough summer, but once again he was such a trooper! You never know with shunts, but we have been blessed to have had so many years of it working, when it wasn’t it was hard.
We have been blessed by so many strangers because of him!! He got a guitar for Christmas and is excited to learn how to play. There really isn’t a day that goes by that I am not grateful for him and the spirit he has brought to our home and the things we have learned from him!!
