Being a mom of a child with special needs

In November of 2013 I wrote a paper for a family journal thing that my cousin was doing on being a mom.  This is that paper.  So it is a year old but it shows what we have gone through in general up to that point in our lives.

There are a lot of feelings that come from being a mom- love, happiness, joy, gratitude, satisfaction, pride, humility, and even the not so good emotions of worry, fear, frustration, guilt, and being overwhelmed.  Those feelings all intensify when that turns into being a mom of a child with special needs.  

When I was a little girl, I always had a fear that I would have a child with special needs.  After I got married and became a mom, that worry continued and probably even increased.  And then that worry became a reality.  I don’t really know how to describe what it is like being a mom of a child with special needs without just telling bits and pieces of personal and sacred experiences I have had thus far. 

When I was finally pregnant with our second baby I was so overjoyed, but when I look back on it, there was a different fear or worry that hadn’t been there when I was pregnant with our little girl.  When we went in for the twenty-week ultrasound, we were told that our little boy had something wrong with him and he would have lots of problems.  I was so shocked and overwhelmed, but at the same time I knew that it would be alright.  Another doctor looked at our baby boy a month later, and we were told that day that he most likely would not live.  If he did live, he most likely would spend his short life of maybe a few months in the hospital.

I was devastated.  It was almost like I didn’t know what to feel, and at first I didn’t feel anything except shock.   I didn’t understand how this could be happening.   It was so hard to live every day as if everything was normal, because it wasn’t.  I didn’t know how to tell people, so my husband respected that and we only told family at first.  I was too overwhelmed in knowing what to do and what to feel.  It didn’t seem fair.  I went through so many ups and downs.  After we were told he wouldn’t live, I felt guilty about being relieved that I wouldn’t have to take care of a child with special needs, but then I felt depressed about not being able to take care of him.  I was going through a grieving process of not having a “normal” little boy. 

Then came a day that I was so upset I didn’t know what to do with myself.  I knelt down and told my Heavenly Father that I was so afraid and didn’t know how to feel, but I knew I didn’t want to have bad feelings anymore.  I just wanted to move forward, but I didn’t know how.  I was so afraid for my baby to die, but I realized I was even more afraid for him to live and me not know how to take care of him.  I knew if he did live my life would not be the same and the struggles would be huge.  I didn’t feel good enough to be a mom to such a special little boy.  I felt so small and so incapable of being that kind of mom.  I told Heavenly Father that if He needed to take my little boy He could, but if my little boy was supposed to stay and I was supposed to take care of him I would.  I don’t know how to describe the feelings that happened that day, but I knew afterwards that everything would be alright.  I didn’t know what alright meant, but it was good enough.

When we went to the hospital to have Hyrum, there was fear of the unknown, but at the same time there was a sense of peace inside that I can’t describe.  When Hyrum was born, he was a miracle.  He could breathe, he could cry, he could move, he could suck and nurse; he could do all those things that he wasn’t supposed to be able to do.  I was not afraid to be his mom; I was only overwhelmed with joy and humility that I got to be with my son.  He still had the same condition so we knew he wasn’t normal and would have problems, but he was with us for now.  Our biggest prayer before he was born was that Abby would be able to hold him.  When Hyrum was 20 hours old, we brought him home, sat Abby on the couch and she held him.  There is no joy that compares to having a child and I think our joy increased in having a child that we didn’t think we would get to have in this life.

Being around Hyrum at the beginning was a blessing every day.  We didn’t know how long we would have him, but he was a miracle and our home was filled with love.  Eventually I started noticing things were different about his muscle movement, so I asked my doctor and we got set up with early intervention and multiple other doctors.  When Hyrum turned 6 months, I felt like we spent every week at a therapy session or in a doctor’s appointment checking everything.  It was so overwhelming.  I was a homebody who never went anywhere and then all of the sudden I had to go everywhere.  I had to have my husband’s help.  I was too afraid to do things all by myself.  Hyrum was relatively healthy and it seemed like we didn’t live everyday wondering if we would still have him.  I started living a little less in fear, so I became a little slack in doing all of the right things every day.  I think I may have forgotten that I had a perfect spirit in my home.

By the time Hyrum was one, he wasn’t gaining weight and it had become so hard to feed him we went to see a GI doctor about getting a G-tube (a feeding tube surgically put directly into his stomach). I had been hesitant to do the G-tube  because I was afraid to put him through surgery.  In going to all of his new doctors, there had been so many other small decisions we had to make that I couldn’t face doing something big until I had no choice.  When the time came to do his G-tube, I finally felt right about it.   Since Hyrum hadn’t had enough food for so long, he received an emergency Ng-tube instead of scheduling surgery for a G-tube. The Ng-tube went in his nose and down into his tummy to feed him.  We had to take Hyrum to Primary Children’s so they could watch him when they started putting food in him. It was very overwhelming and I was so afraid to be there at the hospital.  Our hospital stays just increased after that. 

From the time Hyrum was one until he was 16 months old, he was in the hospital 7 times.   There were days when I would worry that he wouldn’t make it through that day or night.   I didn’t understand before what it would be like to have a child so sick.  During this time, I had no idea how to be a mom to my little girl and how to take care of Hyrum at the same time.  Hyrum had to be my first priority.  I had to let other people take care of Abby.  It was hard for me to know how my being gone so much, being so tired, and being so worried about Hyrum were affecting her.  It just became normal.  But people did take care of her and she was fine.  However, knowing how to juggle time between Hyrum and Abby is still hard for me.

I had so many experiences being in the hospital that were so special.  I don’t know if every nurse loves every child there, but I do know they all loved Hyrum.  He was special and they could feel his spirit.  There were times when it was fine to be in the hospital, because I knew it was part of his mission to be a part of so many people’s lives and to show them Heavenly Father’s love. 

Of all the times that Hyrum has been sick, there is one that stands out the most.  Hyrum got rotavirus and was so sick that we took him to the ER to get IV fluids, but they let us come home instead of admitting him to the hospital.  The next day when I took Hyrum to see his pediatrician for a checkup, he seemed so much better, but I kept having a feeling that I needed to ask the doctor what to do if Hyrum had a seizure.  He told me to call 911 and they would help me.  An hour after coming home from the doctor Hyrum had a seizure.  I think that was the scariest moment of my life.  We knew seizures could come, but I didn’t want them to come yet.  I just remember holding him as he was shaking and pleading with Heavenly Father, “Please not yet, please not yet.”  And then I started pleading, “Please don’t take him yet, please don’t take him yet.”  I called 911 and she told me what to do until the paramedics came. Hyrum had another seizure while the paramedics were here, so they decided to take him to the hospital.  On the way to the hospital he had another seizure that wouldn’t stop.  In the ER, they finally had to put him to sleep to make his body calm down.  Watching Hyrum in the ER was so frightening, but peaceful at the same time.  Even though I was more afraid than I had ever been, I felt a sense of peace.  I was so afraid we were losing him that I didn’t know what to do, but Heavenly Father helped calm me.  The biggest miracle of this day besides him living through it, is that I was prepared.  Heavenly Father helped me. I was prompted to ask what to do when he had a seizure not thinking it would come that day, but Heavenly Father knew it was coming. Heavenly Father prepared me, and that is what he does for all of us.  He prepares us to be moms and he prepares us for what is to come in our children’s lives.  I know that to be true.

Hyrum was so sick that he went four months with an Ng-tube until he finally had surgery to get his G-tube.  Since recovering from his surgery, Hyrum has done well.  We have established a routine to take care of him.  Our normal life now is taking care of Hyrum by feeding him through his feeding tube. He doesn’t handle the food as well as he should, he gets a lot of different medications every day, and he sees a lot of different doctors for check up visits every 3 months.  But it is all just part of our routine.

Hyrum also has a physical therapist, an occupational therapist, and a speech therapist, that each come into our home twice a month.  They are part of our lives.  I can’t imagine Hyrum’s life without them.  They have helped him and me so much.  One of the most amazing things about Hyrum is that no matter what he is going through, he smiles.  People notice that and it changes their lives. 

Another feeling that comes from being a mom of child with special needs is guilt.  I never feel like I am doing enough for him.  I don’t do enough physical therapy, and we don’t work on his iPad enough and the list goes on and on.  There are so many things that I could and should do for him that it becomes overwhelming. 

There are still times when I live in fear and forget to have faith.  There are days when I am so overwhelmed with the fear of losing Hyrum that I can’t figure out how to get through that day.  But there are more times when I am so grateful that I have him.  When he smiles at me and when we play peek-a-boo behind the counter, I can’t begin to express my joy that he can see me and that he can smile and laugh. Hyrum wasn’t supposed to be able to respond to us.  But he can!  He watches us and wants to be with us.  He loves to watch other children.  It is so neat how watching other people brings him so much happiness!  It is such a blessing to be able to look at him and have him look back at me and smile.  There is no joy that compares to having a happy child, and we get to have that so much with Hyrum.

The best thing about Hyrum is that he smiles and laughs!  It makes everyday so worth it.  No matter what he is going through he still smiles.  He can throw up and then look up at me and give me a smile.  It is like he smiles for us to let us know that life is precious and that Heavenly Father loves us!  That is the reason he is here.  I get to take care of a little boy who is here to show us Heavenly Father’s love.  It is more humbling than I can express.  The joy of taking care of him outweighs all of the hard things.  I get to be with him every day and feel his spirit and love.  That is the biggest blessing of being a mom of a child with special needs.