Determination

I can’t help but sit here and feel anxious for tomorrow. I can’t exactly decide how to feel. Should I feel hopeful? Should I feel sad? What way should I go?

Tomorrow our son is having a repeat MRI to assess his cerebellum. His neurologist wants to see if his cerebellum is still shrinking and at what rate. Shrinking. His brain. These few words bring tears to my eyes. I could feel hopeful that it hasn’t shrunk anymore in the last year but according to the neurologist at the Mayo Clinic this is highly unlikely. We were under the impression that around age 5 the cerebellum was done shrinking, but he informed us that’s because there’s nothing left. Oh. All of this time I was still hopeful that it would stop shrinking and there could possibly be something left. Not the case. There could be nothing left. I have to believe that this isn’t absolute. Research is limited and CDG is rare and very diverse.

I asked his neurologist if we needed to have an appointment after the MRI and she said “not unless you want to.” She looked at me and said “the MRI won’t change a thing.” Easy for her to say, but she’s right. It won’t change his treatment. He will still have therapy 3-4 times a week. He will still be monitored by all of his specialists. We will still work hard every day to get him to say “mmm,” nod his head, sit up, taste food, or reach for an object of his choice. We will still push on with fierce determination. Most of all we will continue to love him beyond measure.

I know tomorrow I’ll still silently cry in my car on the way to his MRI. I know I’ll feel sick to my stomach until his neurologist calls me with the results. I know I’ll cry when she gives me the results. Good or bad. But I know I’ll still fight for my son no matter what. I will fight for him to move. To sit. To stand. To crawl. To walk. To speak. We will forever fight. So yes, I’ll still feel both sad and hopeful, but most of all I feel determined. Determined to fight for our son.

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(He can hold his head for brief moments in his Bumbo chair.)

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Tears

 

This Friday will be the one year anniversary of the scan that completely changed our lives, the MRI. One year ago we were told that our son’s cerebellum was shrinking. One year ago our son’s neurologist called me immediately after the procedure and asked “how much do you want to know?” The blood drained from my face and I wanted to throw up. No. No. No. Not our baby. I held him and sobbed. I can’t believe it’s been a year.

Over the last year I have shed buckets of tears. I’ve cried for so many different reasons. I’ve cried for our son and the struggles he will have throughout his whole life. I’ve cried for our other children because their lives are forever altered. I’ve cried every time I see a parent post in our CDG family network that their child earned their angel wings. Those days are extremely hard. I also mourn the loss of the child we thought we would have, over and over again. Whenever I see another 20 month old running around I think that could have been us. I have cried witnessing two siblings fight over a truck and think that’s not us. I’ve sobbed out of pure exhaustion. So many tears filled with worry, anxiety, and grief.

I’ve also cried because I’m incredibly blessed. I get to see the most magical smile. Every. Single. Day. Tears of joy when he held his head up for a few seconds. My eyes fill with tears when he can’t stop giggling; it’s the most amazing sound you will ever hear. More tears when he rolled over for the first time. Joyful tears when he looks up, touches my face, and gazes at me with so much true affection. Tears filled with so much joy, happiness, and love.

I know that the tears aren’t going to stop. There will definitely be more along the way. More for the life we wish he would have had and more for every milestone he reaches. Thinking back on the last year I wouldn’t change a thing. I wouldn’t take any of it back. The tears and all. We are who we are today because of every trial and challenge along the way. C1

 

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New year

The holidays are over and it’s a new year. I can’t believe that a year has gone by. Happy 2015 to everyone!

I have been staying home with our boys for nearly a year now and you’d think I would have more accomplished! I was laughing about this with one of our physical therapists at our recent appointment. My craft room is still a junk room, our crawl space is still the black hole for everything that is not currently being used, and yes, our elf garland has been up above our front door for an entire year. I had ideas of what my house (and I)  would look like when I stopped working outside of our home…and none of those visions have come true.  Everything was to have a place and I would be 10lbs lighter from all of the workouts I was able to get in. HA!! As I laughed about this with the therapist she reminded me of what we have accomplished.

Our youngest son is rolling over from his tummy to his back as well as from his back to his side. I recall a time when he would lay on his side and it would take all of his effort to kick back and roll to his back. My aunt was watching it with confusion while we were cheering loudly after he accomplished this feat. She said “wait, that’s what we’re cheering about?” Tiny things that parents of “typical” children take for granted. He has also gained tremendous head control. His therapist confided in me that there was a time when she was out of ideas to help strengthen his neck muscles. She was at a loss on how to get him stronger, and now she’s confident that someday he’ll crawl! At 18 months old he started lifting his head off of the floor while on his tummy. Actually lifting it. I get teary eyed just thinking of it. It’s a huge accomplishment for him. He’s also gained 10lbs, thanks to his feeding tube. I blame my gain on living in yoga pants that stretch right along with you….but his gain is actually something to celebrate.

My kitchen will always have a sink full of feeding extensions, syringes, bottles, and medicine cups. My craft room might stay a junk/craft room. The black hole will likely continue to be just that, but the elf garland might actually get taken down and added to it this year. I’ll stick to goals that are attainable. 😉 I received a gift certificate for 5 yoga classes so I know I’ll at least get to make use out of my ever stretching yoga pants five times in the next year.

I don’t know what the year has in store for our family, especially our little guy, but if he can continue to make accomplishments like he did in 2014 I’ll be extremely proud and incredibly happy. I may not have accomplished exactly what I thought I would get done in the last year, but in fact, we’ve accomplished much more than I could ever ask for.

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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.

 

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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.

 

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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.

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Friendly reminder: Think before you judge

I can feel it before anything. The judging. Oh…the judging.

Picture this: There’s a woman in front of you at the checkout with WIC vouchers for 4 different transactions. Lovely, especially when you’re in a hurry. This woman is wearing Coach sunglasses on her head, Lululemon pants, Nike tennis shoes, carrying a Vera Bradley wristlet, and has an iPhone. Immediately you let out a little disgusted sigh. Really? She needs WIC? This is what MY tax dollars are paying for? You can’t wait to tell your friends about what you saw and rant and rave about how wrong our government benefits are. Just how can someone like her be receiving these benefits??

I want you to know, that person is me. It’s me you’re judging before you ever know MY story. Do you know that my son is at home and he’s tube fed, developmentally delayed, and sadly, he’s missing part of his brain? Do you know that I quit my job to stay home and care for him because that’s what HE needs? Do you know that I have no idea how I am going to pay back my student loans because 3 years ago I decided to go to college to get my Bachelor’s degree to make a better life for us? My Coach sunglasses were a birthday gift from my sister-in-law for my 30th birthday, and…ahem…I’m closer to 40 than I am 30. The Lulu’s are a hand-me-down from my fabulous sister, Nikes are probably 6 years old, Vera Bradley was a gift from my loving mom, and the iPhone was a Christmas gift from a generous friend. You don’t know MY story. Before you give me that look or whisper to your friend, think twice.

If I didn’t have to use the vouchers I wouldn’t. Two of the vouchers are just for Pediasure, which is the only nutrition our son gets. I’m not sitting at home abusing “the system.” I’m working my ass off each day so my son will meet his full potential. I want to give him every single opportunity possible in his life, and if this means not working and getting $8 of fruits and vegetables a month I’m going to gladly accept it. Not everyone is manipulative and lazy. Please, get the facts before you step up on your soap box.

I have been treated horribly by cashiers and noticed the looks of disgust by other customers. I don’t deserve any of this, and neither does anyone else. People are too quick to judge and think the worst. I know I too have done this. My shoes are different now; I’m on the other side. You don’t know everyone’s story.

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Am I ready?

It’s not easy. I wonder if I’m too sensitive. Do I just need to grin and bear it? I realize that this is just the beginning of the questions and comments about our special needs son. It’s starting. As he gets older his developmental delay is more apparent as well as his size; I’m not sure if I’m prepared. I thought I was but maybe I’m not.

People ask if he’s tired constantly. “Oh, he must be tired?” was one comment as I was holding him on my hip and his head was on my shoulder. No. Not tired. I want to say “actually he’s getting much stronger and his head control is his biggest struggle. I never would have been able to hold him in this position a few months ago”, but I don’t say that…. I can’t even recall my answer. I probably just smiled or kissed his sweet head and changed the subject. My heart hurts a little. I get the feeling deep inside of me that I had when we met with his neurologist after his MRI. I wanted to grab him and run; run far away and never let another person touch him or look at him. He’s my perfect baby and how dare you tell me different. I remember that day like it was yesterday and tears well up in my eyes as I relive it.

“Do you love not working?” This one probably annoys me the most. Excuse me? You think I don’t “work?” I stopped working outside of our home over 6 months ago to stay home and care for our son, and believe me, this job is much harder. He is a twenty-four hour job. Meetings with specialists, occupational and physical therapy appointments, constant therapy at home, and let’s not get started on the feeding issues! Everything is work for him, and when I say “everything” I do mean everything. Turning his head to the right is something that we’ve recently been cheering about, switching a toy from hand to hand is another big feat, and tolerating a cookie or cheese puff on his lips is a reason to jump for joy! It’s all work. So, yes, I love that I can stay home and ensure we are doing everything we possibly can to help him gain strength and new skills, but don’t think that I’m meeting friends for coffee or popping by the gym for a great workout. I wish.

“Will he grow out of it?” Yes. You heard that right. I’ve actually had quite a few people ask this. I want to say “are you going to grow out of your face?”, but that is not very nice, is it? This is not a habit or behavior that he will outgrow, this is who he is. He’ll meet milestones, but in his own time and not by a chart. He’ll get stronger but progress is slow, really slow. At his last check-up we were given a packet of questions about his development. I wanted to put a giant X through each page. I barely read them after the first few questions; my sight was blurry as my eyes were filling with tears. It was a reminder of how far we have to go. God gave me the gift of patience for a reason and now I know why.

This is all new. I’m still learning how to navigate this road we are on. I know that people mean well, but sometimes it just hurts. Put yourself in my shoes and think. What if this was you?

 

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Would you? An open letter to future guardians…

The other night my husband and I were discussing the necessity of finding a loving home for our son if a tragedy ever struck. Who would be willing to change life as they know it? Who would love him and care for him as we would? It’s depressing to think about but it’s also reality.

Dear beloved friend or family member,

We would like to ask you to be our son’s guardians in the event something happen to us. You can definitely decline if you so choose, and before you decide we’d like to let you know what you’d be getting yourselves into.

Caring for him is not an easy task and can often times be exhausting. There will be sleepless nights, hectic days, and moments filled with so much worry and anxiety that you will be succumbed to tears in your room. The nights of interrupted sleep will not lead to a nap the following day. You will still need to chauffeur him to therapy appointments and take mental notes of new exercises to perform on him throughout the week. You will not be able to rest when and if he decides to nap for you. There will be appointments to coordinate, social worker to call, and insurance companies to follow up with. Oh, and let’s not forget housework, laundry, other children, and your social life that is virtually nonexistent.

There also may be days where you do not get in a shower and quite possibly may be wearing the same clothes from the previous day. At 3:00pm you might realize that you have not brushed your hair or your teeth and pray that no one notices. Speaking of praying, you will also become very close to God, Jesus Christ, or any other higher power of your choice; you’re going to need it. Praying for health and healing for him will be a daily ritual and sometimes begging for the strength to get through another day will be top of your prayer list.

You will also need to be strong and brave. Strong enough not to slap someone who stares at him or whispers and points in your direction. Brave enough to hold your head high and not let anyone pity you or him. Strong, brave, and proud are definitely requirements of you. You will need to be proud of the little boy he is, and embrace all of him.

You will be required to celebrate every accomplishment that he makes. He has not yet sat on his own or uttered a word, but you better believe that when he does there will be a large party in his honor. Get ready to be patient, progress is slow. You will marvel at how he continues to work hard with fierce determination and never gives up. Not only is he one of the greatest sources of heartache in our lives but he is the ultimate source of happiness. When he smiles you will feel so much joy. Not kidding, there is definitely a piece of heaven in his smile. He smiles with his entire being and means it, there’s no faking it with him. When he laughs you will forget all of your worries and thank God for that moment. You will set aside your list of “wants” from God and simply be thankful.

He loves unconditionally and without expectations, and that is what we require of you. Hug him, kiss him, cheer him on, never give up, and love him beyond measure.

This may be the greatest challenge of your life and one that you would never regret. You will learn more about yourselves and others than you ever imagined. You will learn what it truly means to love and be loved. Unfortunately, you will also become very familiar with disappointment and grief, but his smile will trump that any day.

We realize that we are asking you to choose something that no parent would wish for themselves or their child. This may be one of the greatest responsibilities anyone will ever request of you, and in our eyes, the utmost gift.

*We can talk about the “package deal” (2 big brothers) another time.

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From me to you

Each one of us is special. Our kids most definitely think we are. My 4 year old loves me “more than diggers, bulldozers, AND chocolate milk.” So, this right here tells me that I’m special. My 18 month old thinks it too, even though he can’t tell me. I can see it in his eyes and feel it when he smiles.

We all have special kids and special lives. To each their own and everything is about perspective. This is mine. My perspective on our life raising a special needs child as well as two other “typical” children.

I want to share with you our struggles as well as our triumphs. I want to share with you what exactly makes us special. This is not the life I had envisioned, but nonetheless, it’s OURS.

 

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