A letter to my Little Man

Dear Camden,

            Today was just one of those days.

It has been a little over three weeks since you were diagnosed with Benign Myoclonus of Early Infancy.

That week was one of those weeks. I won’t lie, I shed many tears. After we came home from the hospital I wasn’t quite sure how I was going to move forward with positivity. Your episodes were so frequent it was hard to feel like you were getting the chance to just be Camden. They started to sometimes affect the muscles in your face, and that broke mom’s heart.

I cried during church that Sunday because you had a few episodes during sacrament and it made me feel like people around us were wondering what was wrong with you. Then my primary class laughed when you had some, and I was filled with fear that someday you would be old enough to be made fun of when you had an episode.

Truthfully, I don’t think anyone really understood or ever will understand the feelings I had and sometimes still have when you have episodes. For the first week I honestly never thought I could feel even somewhat okay with them. I had a hard time trusting that you were actually healthy and okay, and sometimes I still feel that way. I called the neurologist when they got worse and you began puking during them, and I’m sure he thinks I am a little nuts. But you’re worth it.

Then Grandpa died on the 14^th. I felt so torn that night. It was the night before your follow up EEG and we were needing to leave to Iowa. I knew I needed to take care of Dad as well as make sure you received the things you needed for your health. We took a leap of faith that you would be okay no matter where we went and we packed up and headed to Iowa right after your EEG was complete. I hope that was your last time being connected to all those wires little buddy, mom can’t do that again.

Then the blessing came. Your episodes slowed down. In fact you had two whole days without any! I was able to feel peace. I was able to be there for Dad when he needed someone. I was able to help the Wright family as we cleaned up their childhood home and I was blessed by the opportunity to see how well they turned and faced their challenges with faith. Your episodes began again at the viewing, but they were still so infrequent.

Then came your well check. The doctor confirmed what I already knew, you’re a little behind developmentally bud. Daddy refused to believe me every time I told him. He’s protective. The doctor isn’t sure how much the episodes are going to affect your ability to progress. Most babies just slowly learn to gain control more and more over time. Well you’re having to learn how to differentiate being in control from not being in control, and you don’t always get to choose when you are in control. He decided we should have you evaluated by a developmental therapist so we can begin therapy if needed, just in case. Not that there is anything wrong with you, just that we don’t want these episodes to make you fall any further behind.

I’m sorry that I cried when he told me you are behind. I love you all the same, but as  a Mother sometimes we take those things personally.

I spent the next few days calling therapists, answering their surveys, and just wishing I could help you progress. I, being me, looked up some videos of developmental therapy for 9 month olds and we’ve already begun some of the things they do. I’m hoping that maybe this way when you go you’ll just be a rock star and we won’t have to worry about it all anymore! But, even if we do, we will push through it all together. Since using some of the techniques they use in therapy you have learned to accept chunks in your mouth and even chew them up! You look so darn cute when you sit there chomping on things, and you know that you are making mom happy because when you chew you beam! You still throw up sometimes if you swallow real food or chunks, but that generally happens when you have an episode while eating. You have also learned to use your hands to move you forward on your belly! Just need to coordinate your arms with your legs and then it’s a go for crawling! Ever since those episodes began I kept thinking if he could just reach a milestone, if he could just learn to crawl I will feel a little more peace about his well being.

Well, today was just one of those days. Breakfast began with back to back to back episodes. Often when they happen now Dad and I are both just silent. There’s nothing to say, and they are pretty depressing to see. You had a lot more during dinner too, which made you throw up all you had been eating basically. Sometimes I feel like when you’re allowed to make any progress, or feel any comfort in your body something sets you back. I’m sorry for that.

We’ve been working oh so hard on the crawling thing, and you’re either just really stubborn, or you’re not quite getting it. Either one is fine. You’re not a child you can make chase your toys around the room, if I move a toy away you just turn until you find another, play with your feet, babble, or you use your thighs as drums and giggle at yourself while you bang them. You’re so easily content I don’t even know why I try!

Well, I need to tell you something Camden. I cried tonight. I cried because I was frustrated. I wanted you to be able to be mobile so badly (and I know you think you can walk already, but you can’t without mom’s hands in yours!) and I know you would LOVE to be mobile too. I cried because I’m scared for your future. You have so much going on I can’t help but sometimes connect the dots to other things that may yet be to come. I cried because I feel like a bad mom for even being some what frustrated, and for the fact I do not want to worry your life away. I cried because you’re so much more than all your little quirks. You’re so happy. So forgiving, loving, curious and funny. You’re stubborn like your momma, and I guess that’s what I get right?

But most of all I cried because I don’t understand sometimes the plan for you. I have my own personal plans for you, and I so badly want you to be able to achieve and do all you want to do in life.

As I was feeling discouraged and defeated your dad finished hanging a picture in our room.  It’s a picture of Christ called “Facing Eternity” .

I’ve always loved how confident Christ looks even though there’s a lot of uncertainty in the details of the future.  He also looks so peaceful in the image because he knows his Father has a plan. It reminded me that, yes, I don’t know what is in store for you little man and that can be a little scary, but Heavenly Father does. He knows exactly what is in store for you, and you are going to reach your full potential in this little body your tremendous spirit was placed in.

I quickly got on my knees and expressed my gratitude for the opportunity I have to be your mom. There are moments when I think I cannot handle any more factors and questions. You just have so much going on that sometimes I do not know what is what or how to alleviate what! However, I would rather have the questions and the worries than no Camden at all.

I am grateful you are my son. I am grateful that Heavenly Father trusted me with you. You have brought so much joy to my life. The constant smile on your face, the all day giggles, your funny noises and squawks. The fact that you say “dad” all the time now (mom will come someday right?). You are an excellent napper, consistent on your daily schedule, sleep 12 hours solid at night. Totally flexible, fearless in new situations, love all people who are willing to show you a smile… I shouldn’t even complain. You are such a good little baby, I am blessed.

Love you little man!

Love,

Momma