Letting go

Today was one of those days….succumbed to tears in my room.

I laid in bed tonight sobbing. Body shaking, catch your breath kind of crying. I felt it coming for the most part of the day; even had a glimpse of it as I spoke to my dear friend on the phone in the afternoon. I called her to hear her say that I’m not a lunatic. Sometimes you just need some reassurance. I wanted her to tell me that I’m not crazy and that in my shoes she would do and feel the same. A few sobs escaped, just enough for me to feel a little better.

I’m angry. Crabby. Sad. You name it.  Upset about things that happened weeks and months ago. They’re all boiling up inside of me. Our four-year old had hand, foot, and mouth and then yesterday pink eye. COME ON!? I know we aren’t immune but sometimes I feel that we have so much on our daily plate that one more thing might shatter it. I carry so much and I know I need to let some things go. I’m still stewing on a loved one’s suggestion of a part-time job and another saying it’s “no big deal” if our little guy never walks. These things have been tucked away in my memory and I’ve never let them go. In fact, I revisit them often.

I could feel each one of these hurts working their way up inside of me today until they were in my throat. As I was laying in bed I could feel my throat filling with each and every sting until I couldn’t keep them down any longer. I finally let go. I’m letting them all go. Tears kept coming as I tried to catch my breath. My husband rubbed my back as I wiped the tears from my face. He reassured me that I’m exactly where our family needs me and to stop worrying so much. We apologized for letting our anger get the best of us. We sat in silence just being there for each other. I can’t control how others react or view our life, I can only change the way I deal with it. From now on I’m going to let go.

I sobbed. It’s hard. Harder than anything I have ever done before. It’s hard to pretend that everything is ok when you’re barely balancing your overflowing plate with what seems like no light at the end of the tunnel. Our goals come in the form of a year with more goals after that, and more after that. Marathon, not a sprint. Deep. Breath. I won’t be able to finish the marathon holding on to all of it, so I’m letting it all go.

Your turn. Take a deep breath. What do you have tucked inside of you? Breathe deep and let it go.



Sleep will come. Maybe.

Sometimes I wonder how I am functioning day after day. Remember the days of having a newborn and getting no sleep? Remember waking at every little whimper or cry and rushing to peek over the crib? Our son is nearing 19 months and we are still in the “newborn” sleep mode.

Last night, sleepy boy was ready for bed so we laid him in bed and prepared his feed. Connect his extension to his button, give him his reflux med, pour formula in the feeding bag, adjust the rate and dose of his feed, and pray he goes to sleep without too many whimpers. Now I have time to do some dishes or throw a load of laundry in, and perhaps I can take a shower and enjoy my only alone time. An hour after he’s been asleep he starts crying; he just needs his pacifier, so I search around the crib for it and pop it in his mouth. Back downstairs to finally sit down to watch a show. As soon as I hit the couch he starts crying again. Up the stairs I go to check on him. Back down again to un-pause the show. He starts crying again. Up again. Down again. Up again. Down again. Finally I just go to bed because this might be a long night and I need all of the winks of sleep I can get.

I think I’m asleep for 30 minutes. He’s up again. This time a bloody nose. Stop the feed. Hold him and plug his nose. If you’ve never done this for a small child, believe me, it’s not very enjoyable . He’s screaming and trying his best to get away from me. I try giving him his pacifier but he just continues to scream as I pull the blood covered pacifier out of his mouth. Ten minutes passes and then it’s finally stopped.  I hold him longer just to be sure it’s over. I want to cry and apologize to him for everything. I’m so SO sorry he has CDG. I’m sorry he has to work so hard to do anything. I’m sorry he won’t have the life we mapped out for him when he was just a tiny lima bean. Tears well up in my eyes as I think of all of the things he won’t do. I look at his sweet face and HE isn’t sorry. He gives me his charming little grin and I kiss his soft cheeks and the last thing I am is sorry. I’m so incredibly blessed he’s ours and I’m definitely not sorry for that.  So, I put my amazing little boy back in bed, start his feed again, and crawl back in bed knowing I will likely be up again in another 30 minutes.

Up again. Back to bed. Up again. Back to bed to grab my blanket and head back to his room to “sleep” in his rocker. Sit down. Up again. Stop his feed to hold him and hope he’ll stop coughing. Gently set him in his crib. Back to the chair. This is our night. This is our night many nights. Rushing to his bedside at every cry and whimper. You see, I don’t know if it’s as simple as he just wants his pacifier or if he’s thrown up all over himself? Is blood streaming out of his nose? When he bleeds he BLEEDS. (He has low clotting factors so bloody noses don’t require a Kleenex they require a receiving blanket.) Or God forbid, has he had a seizure? He has never, but we know he could.

Sleep will come. Someday. Maybe. For now there’s coffee and hazelnut creamer, and you know what? I’m not sorry. I’m so incredibly blessed. I get to wake up numerous times each night and care for a little boy who has touched so many hearts. I am lucky enough to kiss his cheeks and feel his smile in my heart. I get to care for a little boy whose determination has inspired countless individuals. So grateful. In need of a nap, beyond blessed, and most definitely…not sorry.



How do you define yourself?

I have yet to define myself. In the ABOUT section of Facebook you can choose where you work, and ever since I have stopped working outside the home I have no idea what to put here. I am still confused at the question “what do you do?” from others. I am not a stay at home mom. I am so much more.

Yes, as a mother I have my routine duties. I am a chocolate milk maker, bedtime story reader, knock-knock joke teller, and laundry lady. I am the toothpaste and toilet paper purchaser as well as the “Swiffer-er.” (I wish I had time to scrub the floor on my hands and knees but I just don’t.) I do all of this and more. I am my youngest son’s physical, occupational, and speech therapist, his nurse, his soft place to snuggle, his advocate, his biggest cheerleader, his mommy, but most of all I am his voice. How do you define all of that?

Rewind a bit….

When our youngest son was 3 months old I brought him in to his pediatrician so she could see his lack of neck strength. She told me that everyone develops at their own pace and not to worry. I brought him home and the nagging feeling in my heart never went away. I knew that something was amiss, but yet didn’t really want to admit it. Really, who wants to admit that something is wrong with their baby? I then brought him in a month or so later and asked to be referred to a physical therapist. He still was not holding his head up and I wanted so badly for him to reach this milestone. It’s agonizing watching your child unable to do something that most parents take for granted. It’s even more heart wrenching trying to ignore what other people are thinking and likely saying about your child behind your back.

Do you know what it’s like day after day trying to get your son to accomplish ONE goal? All I want is for him to hold his head up. Imagine trying to get your typical 4 year old child to recognize a shape. Simple enough right? Day after day you show him a picture of a circle and he can never identify this shape, he can’t even point to it. Monday, you get the flashcard out and try to get him to say “circle.” No luck today. He says “cir.” Tuesday, you get a picture of a sun and try to get him to say “circle.” He says nothing; he just cries. You cry too, and cry again when you drive him to therapy and beg for him to just say the word! Wednesday, you show him a cookie and ask him what shape it is. He says something that sounds very similar to “circle” but it’s not quite right. Today you cheer. You continue to do this the rest of the week. You continue the rest of the month. There are lots of close calls and still many tears. You don’t give up. Three hundred and sixty-five days later you are still sitting at the kitchen table gripping the thin, worn out flashcard trying desperately for your son to say “circle.”

This is what I do. Every. Day. I am more than a stay at home mom. I am the mom who is still sitting at the kitchen table with the wrinkled flashcard trying to get my son to say “circle.” I will never ever give up. It’s anything but simple. After a year of physical therapy twice a week our son still struggles to hold his head up. I know that he will accomplish this goal; it’s my job. God willing, I will continue to do my job as his physical, occupational, and speech therapist, his nurse, his soft place to snuggle, his advocate, his biggest cheerleader, his mommy, and his voice.

So, the WORK section of Facebook will stay undefined for now because I surely can’t write all of that.