Endure it Well! 

When I was pregnant with William and we found out about his deformity, Ben and I had many decisions to make. One big decision we had to make was if Will should be delivered via c-section or a vaginal delivery. Every one of our doctors advised us to have a vaginal birth. The reason for this was because since Will’s chance for survival was extremely low me having a c-section would cause too much risk on me when Will would die anyway. We didn’t have a single doctor advise us to have a c-section even though we felt that was what we should do. Ben and I had decided to take a week to pray and converse with the Lord on what we should do. We took time to go to the temple and Ben and I both had the impression to have a c-section. We all know how William’s birth turned out. In the ultrasound doctors diagnosed him with encephalocele which wasn’t what he had, and he was rediagnosed after birth. We were even told that if we were to have a vaginal delivery William would have most likely died. 

This lesson has taught me many things, one thing it has taught me is that when we go through trials we are not alone. We are provided with help from our Father in Heaven, Jesus Christ, and from others on both sides of the veil. It has taken me a long time to realize that God won’t take my trials away, but instead he will help me to face them. In Jeffery R. Holland’s book; For Times of Trouble he says:

“Some paths we feel we just can’t walk. Some mountains seem just too high to climb. Some steps are just too difficult to take. When that is so, heaven does intervene, but often it is not to smooth out the path or remove the mountain or shorten the steps. More often than not, God sends help in a different way. He makes us stronger and more sure-footed. In effect, he gives us bigger feet, stronger legs, a firmer back, more stiffened shoulders. He deals with us rather than with the problem we face.” -Jeffery R. Holland 

I love how he says; “He deals with us rather than with the problem we face.” I was a little bitter about this idea at first. At the beginning of this trial with Will I would have done anything to take his deformity away. To have him be a “normal” baby like many of my friends. But when I look at how far I’ve come, how far Ben has come, how far our relationship has grown, and how beautiful our family is; I can’t help but be grateful for the trial I have been given. When I look at my overall goal in this life, which is to return back to my Heavenly Father and live with him, I know that everything I have gone through in my life has helped me to reach that goal. 

“The Lord works from the inside out. The world works from the outside in. The world would take people out of the slums. Christ would take the slums out of people, and then they would take themselves out of the slums. The world would mold men by changing their environment. Christ changes men, who then change their environment. The world would shape human behavior, but Christ can change human nature.” -Ezra Taft Benson

Trails and adversity as hard and painful it might be,  we can’t help but see how it has shaped us, and made us better people. Going through this trial with Will has made me more knowledgeable about the human body and special needs children, it has made me more sympathetic and empathetic for others, I have become more patient and loving towards my husband and son. I have increased my faith in Jesus Christ and have discovered my own strength. Those things I have learned and developed make me grateful for where I am and excited for where I am going. When we allow God to work on us rather than our problems, we become the best of ourselves. 

Don’t get me wrong, adversity is hard and we all have those days when we wish everything is okay. Where we break down and have bad days. That’s normal and okay, everyone does it. Don’t forget the eternal truth of Christ’s atonement where one day all will be made right and all this will be for our good. That of we endure it well we can be reunited with our families, and with our Eternal Father in Heaven. 

“Our purpose in this life is to grow in godly ways, to be enlarged in such virtues as faith, hope, and charity, patience, perseverance, and strength. If that growth must come through sorrow or distress or grief, then so be it. It will be alright in the end … We are pursuing a divine plan that will one day lift us above all distress, but it will take many prayers-and many answers to them-before we are victorious.” -Jeffery R. Holland.

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My Child Isn’t Normal, and That’s Wonderful.

I wanted to write a blog post for the many different parents who have a child, or had a child, with sever health problems. Parents who lost their child to health problems, or a parent who is currently taking care of a child who requires a lot of care.

When William was born, my experience was anything but normal. I was away from my baby the whole time I recovered at the hospital. Instead of staying in my room and resting I pushed myself to visit the NICU and see how my baby was doing. I didn’t bring William home until two and a half months after he was born.  I don’t ask for parenting advice on Facebook because William is so out of the norm. Spending many days and many late nights at Primary Children’s Hospital has taught me how many people are dealing with many of the same problems as I am. It has taught me that whatever situation you are given, you can still choose to be happy and embrace positivity.

I read a friend’s blog post one day and it really made an impact on me. This couple has struggled with infertility for a long time now, and she expresses her feelings often about how she doesn’t understand why someone else can be blessed with children and she can’t. I know for a fact that we all do this. I have met many parents at Primary’s and almost all of them have mentioned to some degree of how they look at other’s are are sad that they aren’t able to do things with their child like normal people are able to. It is a completely normal thing to think this, and it is very common. I constantly write about this because I have trouble with it, I wish William could lay on his back, didn’t have to go to so many doctors appointments, didn’t have so many diagnoses or bad news. Maybe you look at your situation and think; “I wish my child could eat without a tube.” or; “I wish my child hit the normal developmental milestones like other children,” “I wish my child didn’t have to be pushed in a wheel chair.” “I wish my child could see or hear me.” “I wish my child was with me right now,” “I wish i had more than just a couple hours or days with them.”

These feelings are normal and we should embrace them. We should say to ourselves; “This is hard! This sucks! I wish things were different!” You look at others and don’t understand why you were the person who lost a child, or had a child with some rare disability. William is fed every 3 hours, and at night I wake up, walk downstairs heat up some milk, mix some formula in it, and then hook him up to the pump. Sometimes he cries a lot because he is so hungry, and I always think to myself how I wish I was able to breast feed so it didn’t take so long to get William’s milk ready. I wish i could just stop his crying immediately. But I can’t. I don’t have certain experiences with Will that I wish I did.

We look at our lives and wish things could be different. Maybe it is a child that has passed away, maybe it is a child that has been in the hospital for months. Maybe you aren’t able to have children at all. Maybe your the love of your life decided to walk out on you. Maybe you have yet to find the love of your life. Whatever your trail or burden may be people are always looking to others and wishing for something different.

So, for the parents who wish better for their children I want to express the love that an almighty Father in Heaven has for you and your child. As William spent many weeks in the PCH NICU I never went a day without feeling the love and presence of the Spirit at every single child’s bedside. When I think of that love, I know I’m not alone.

“I have a great appreciation for those loving parents who stoically bear and overcome their anguish and heartbreak for a child who was born with or who has developed a serious mental or physical infirmity. This anguish often continues every day, without relief, during the lifetime of the parent or the child. Not infrequently, parents are required to give superhuman nurturing care that never ceases, day or night. Many a mother’s arms and heart have ached years on end, giving comfort and relieving the suffering of her special child.” -James E. Faust

 

The Good Life: Some Updates On Us

I wanted to write to everyone about how our family has been doing since Will as been home! He ha now been home for a week and 2 days. He was discharged from the hospital on August 2nd. It has definitely been hard to adjust having Will home rather than having him at the hospital, I am way more sleep deprived that’s for sure! William is totally worth it though.

I never explain what the doctors are doing to fix William’s head because one; its super complicated and hard to explain. Two; plans are always changing because William’s body is changing so it can always change. and Three; I personally think that is too personal about William’s medical history that is not necessary for others to know. I won’t apologize for not sharing those personal details because quite frankly it’s no one else’s business #sorrynotsorry. William still has updates otherwise for those who would still like to know!

Before we were discharged William’s speech therapist at Primary’s wanted to do a swallow study to see why William can’t take all his food by mouth. A swallow study is when they do an x-ray on William’s throat and watch as he eats to see how he swallowing. After the swallow study was done William was diagnosed with Dysphashia which means he cannot coordinated his swallowing good enough for a fast flow of food. If eats like a normal baby food collects in the back of his throat and gets stuck, this can cause blockage in the airway, chocking, and most dangerous aspiration. For now, he has a occupational therapist that come to our home (we absolutely LOVE her!) who helps Ben and I know how to bottle feed William. He feeds almost all of his food through his tube, and when he is showing signs or oral readiness we will offer a bottle with only 15 mls of milk in. He have to be very careful and pace him or else it can be life threatening for him. He needs to have his milk thickened so help him pace, and use a preemie nipple. The goal is to help him have the experience and pleasure, not about food volume. That said, breast feeding is out of the question. I still pump throughout the day, and he is fed my breast milk through the tube, I don’t know what the future will bring for William being able to feed by mouth of if  will ever be able to breast feed. But Ben and I both want what is best and safest for William, so we will not force him to feed by mouth unless he wants to. If I were to force him to take more food by mouth that would not only be extremely dangerous but cause a negative eating experience for him, I would hate myself if I caused him to develop a food diversion, which is possible, and real for many children.
Also before discharge William had a hearing test which he failed. The audiologist explained to me that because of William’s head dressing and his head deformity it was hard to do the hearing test in the first place. But they did the best they could and found that he has significant hearing loss. Because they were limited in the hearing test they want to see him again in 6 weeks to do another hearing test and have better answers for us. It was not surprising to me to hear he might have significant hearing loss because he did form abnormally, I guess Ben and I might be learning sign language which will be fun! At birth, the doctors also told us he had a visual impairment, because he was so young they aren’t sure how significant it is, but they will have an eye test for him in September so we will see how that goes!

The day of discharge was very hectic, we probably didn’t leave the hospital until around 5pm! I remember driving away with William in the car and Ben saying; “I feel like we are stealing him from the hospital!” It was so true, I felt even hesitant to take him home because I was so used to him being at the hospital and not home with us. It was crazy! The first night was very hard though, Ben had to work all night so thankfully I had my sister here with us to help me. William gets fed every three hours over the pump, and since he can’t be on his back still I was waking up probably every couple minutes just checking on him to make sure he didn’t roll over on his back (which, all the people at the hospital can back be up when I say he moves A LOT so this is very possible!). William slept wonderfully the first night, but me on the other hand, not so much!

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Because William can’t be on his back still, he has a special bed car seat that he uses. Here is a picture of him in the car bed, he doesn’t like it very much and he is getting so big that he is going to need something else pretty soon!

On Thursday August 4th William was visited by his OT and PT. His feeding is doing very well, and we are continuing to pace him and only feed him for experience and pleasure.His PT was concerned about his hips, knees, and neck. Since he can’t be on his back certain muscles are not being used which causes some muscles to be underdeveloped. His PT taught us some exercises to do with William to help his muscles and She came today again and said he has progressed a lot! We just got to keep working on his exercises!

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Here is a picture of Ben working with William the other day on his hips.

On Friday August 5th William had his first doctors check-up since the hospital. He is seeing a pediatrician at University of Utah Hospital and she is wonderful! We love her, we were so worried about William having a pediatrician that would understand him and have experience with how complex he is, and she was wonderful. His check-up went fantastic! He now weighs over 12 lbs, and he got his ears cleaned! It was a wonderful check up, and he is doing very well! Yesterday, August 10th William met with his plastic surgeon to check his head, and it is healing just as it should! Soon he will be able to have his second surgery on his head. At this point we are moving forward with faith in the Lord that He will continue to guide the surgeons and He will allow William’s head to heal in the best way for William. We feel confident in the abilities of his plastic surgeon, he is very knowledgeable, talented, and really cares for William. We couldn’t have asked for better doctors, surgeons, and therapists.

Ben and I moved to Bountiful, and we love our ward! We haven’t been to church yet, and we have already met almost half the ward! It has been awesome, we have felt so welcomed and so loved! We love where we are living, it is a wonderful area for sure! We are excited for this new chapter in our lives.

Right now, William is moving more and more every day! He is smiling and interacting with people. He is doing so well at home with us it was a wonderful decision to bring him home.Having Will as our baby is the most stressful, tiring, and wonderful adventure. He will always have health difficulties, and we are going to continue on this crazy roller coaster ride. As William develops we will continue to have good news, and bad news. We will have set-backs, and great victories. But we have chosen to continue to give William the best chance in this world, he deserves support and love as he develops. We have no idea what the future will bring for William, but we know that no matter what happens we will always be his parents, he will always be our son. We will always love him, take care of him, and have fun! One day, William will be resurrected and made perfect through the atonement of Jesus Christ. He will one day stand before Ben and I with a perfect head, brain, and mind. He will be able to see and hear perfectly, and his body will be made perfect and complete. I know that without a doubt in my mind. But until that day, we will enjoy every moment, embrace every set-back, and depend more fully on the Lord.

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“Come What May, and Love It!”

William has a lot of health problems, and a lot of different diagnoses. He is a complex kid. He has visual impairments, hearing impairments, he has a problem with swallowing and must eat through a feeding tube, he has many different doctors, surgeons, and therapists. Bottom line, he is different, he is a curveball. Now, being at Primary Children’s hospital has taught me to enjoy the challenges and the life I am given because I can’t change what has happened. But, this is something that wasn’t easy, and something I still struggle with.

I had a hard time not comparing myself, and I still have a hard time with it. I get jealous, self-centered, and mad at the fact that my situation sucks and someone else has his better than me. For example, I hate going to the doctor and being told more things that are wrong with William. I hate being told more and more limitations that he has. I am jealous of the friends that have healthy babies that go to the doctor and are told that there babies are healthy and strong. I once had a NICU mom explain to me how she hated being other moms out with their babies and she was unable to take her baby out because he was to fragile. It’s a normal thing to be jealous and compare your life to others, but the more people I meet the more I realize that everyone does it, and you may be jealous of one person but that same person is looking at you the same way

I know many people with many different struggles in their lives. Since I have posted and been open about my own struggles, many people have reached out to me. Health problems, unable to conceive children, divorce, death of a child, loneliness, depression, fear, and much much more. But it’s that moment when we look at our situation and we finally say; “I’m okay with what I got.” 

We can look at a situation and think about how someone has it better and be bitter or we can decide to make the most of what we got. I can either sit and cry about the fact that my baby has health problems and disabilites or I can pick him up and rea him a book and enjoy the time I have. Let’s stop comparing ourselves, stop talking about how Soninke else has it better or maybe how you’re the one who has it better. Let’s start helping each other. Serving one another, and remembering that one day everything is going to work out in perfect harmony. 

Lets Talk About Disabilities

I have been wanting to write about this topic for awhile. It’s been on my mind a lot as I have been blessed with a son who has been born with severe disabilities. I want to first point out that I write this not just as a mother, but also as a sister. I grew up with a younger brother who has autism and ADHD, and trust me it has made all the difference.

As we all know what we consider to be “normal” differs from culture to culture, family to family and person to person. What we consider normal is what the majority of the population experiences. For example; as a child develops majority of children in the world develop certain skills that are needed for survival. As we study different children we see that some will not develop in the norm or what we consider the norm. They are not like the majority of the population. As human beings, we are given the natural man and in that natural man we develop routines where we are used to a certain way things run, and when something happens outside of that routine we freak out. It’s okay to not understand things, and to be used to a certain way things are supposed to go. But it is also important to learn to adapt and educate ourselves.

When I was in young womens at church we did a service project where we went to a home for adults with disabilities. We all had a sacrament meeting with them, and sang primary songs. I remember standing in the middle of all these people, the “normal” people and the ones that were different. I remember thinking to myself how wonderful this moment was, how wonderful it was that we could all be around each other. How no one was making fun of these people, but instead it was a room full of love and acceptance. I also participated in special olympics, and have done many service projects with special needs children and adults. At every single one of these experiences a stake president, bishop, or service project leader would express their testimony of how special these people are. After these many different experiences I have come to understand how pure and perfect children and adults are who have special needs.

I feel that in the world today, because we meet someone who doesn’t fit what we consider to be the “norm” we close ourselves off to those people, we see them being bullied, avoided, looked down on. I have seen people look down on those with disabilities and think something is wrong with them, and that they are better. I have seen children express rude comments all because they are un educated in the importance of acceptance, kindness, and love. The sweetest spirits that I have ever met were given some sort of disability, abnormality, or may look different in some way. I know for myself that everyone I have come in contact with that has special needs I realize how they are better than me. At Primary Children’s hospital I was at a parent lunch when a woman walked in with her son in a wagon. He was unable to move, and control his movements. His mother explained; “He is what we all are trying to be. Pure.”

I look at William sometimes and wish his head had developed normally, that he didn’t have any other disabilities and he was like a normal baby. But as the days and months go on I realize how selfish that is of me. Children and Adults with special needs are already there, they have already achieved what the rest of us “normal” people strive a lifetime to achieve; being pure, becoming Christ-like, and becoming perfect.

“For reasons usually unknown, some people are born with physical limitations. Specific parts of the body may be abnormal. Regulatory systems may be out of balance. And all of our bodies are subject to disease and death. Nevertheless, the gift of a physical body is priceless. …A perfect body is not required to achieve a divine destiny. In fact, some of the sweetest spirits are housed in frail frames. …Eventually the time will come when each ‘spirit and … body shall be reunited again in … perfect form; both limb and joint shall be restored to its proper frame’ (Alma 11:43). Then, thanks to the Atonement of Jesus Christ, we can become perfected in Him.” Russell M. Nelson