I think…

I would be lying if I said I wasn’t a little bit scared. A little bit nervous, okay, maybe a lot. To be honest, not thinking about it is easier than thinking about it. Isn’t that a strange way to talk about a pregnancy? Let me explain.

I know I have a beautiful wonderful child inside of me who is already loved beyond measure. I can feel his flutters and kicks; an amazing gift of the life I’m growing. I can see my belly growing and I lose count of the daily trips to use the restroom. He’s happy and thriving. Inside. But outside, that’s where my thoughts always drift to. So, sometimes it’s easier to just smile when he knocks from inside and not think any farther.

When I allow myself to think about his future, I can’t help but think of the “what-ifs.” We know the chances. We know the possibilities of our unborn baby boy being affected by congenital disorder of glycosylation, just like one of his brothers, is 33%. We know it’s not easy. We know the multiple hospitalizations, illnesses, worries, surgeries, specialist appointments, daily therapy tasks…we know it all. We know full well the amount of work and dedication it takes to raise a child with special needs.

It’s very strange carrying a child who could have a very difficult life.

I am doing my very best to not get caught up in scenarios that are possibilities, either way. I cannot bring myself to envision him crawling, talking, playing with his brothers. His first words. Saying “mama.” Tears stream down my face as I type those words. I just can’t. I am not going to pretend – I am not going to break my own heart. I have to try to protect myself from further heartache. Because if I don’t dream those dreams, maybe, just maybe, I can protect my heart a little.

Of course, we would love for him to be unaffected but there is a reality that he may not be. And that’s a reality we are ready to face.

I know we can handle anything that comes our way. After all, we are “experts” in CDG according to the genetic counselor I spoke to. If anyone is prepared, we are. We didn’t know if we could handle it 4 years ago, we were scared and nervous…but here we are…killing it.

But I still can’t think of that either. I can’t bring myself to relive the first two years of Christopher’s life. A night in the emergency department where we were told he was close to death, surgeries with complications of infections, numerous sleepless nights in the hospital, and having to let go of the dreams we once had for him. The grief that follows you; even when you are looking on the bright side. I can’t think further ahead, think about the possibilities of wheelchairs, gait trainers, therapy after therapy….the endless trek up the mountain.

I can’t think beyond now. Not beyond today. And that’s ok. I think. 😉

 

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Nowhere else

Our family went to a pool party a few weeks ago and on our way home I texted my girlfriend to let her know I wasn’t going to cry. I didn’t have the urge to take my son and leave. Oddly enough, I felt ok, not great, not sad, but just ok.

Our son is nonverbal, continuous tube fed, has severe hearing loss and wears aids, with very low muscle tone and cannot sit alone, stand, or walk.  He’s also stubborn, funny, very affectionate, and extremely charming. He loves kisses, books, and his iPad. And when he gets excited or is content he can be very vocal while flailing his arms and legs all over which can be confusing to people who don’t know him.

I can’t tell you how many times we go to an event and all I want to do is retreat to the safety of our home. Away from the stares, ignorant comments, and small twinges of sadness knocking on my heart waiting for me to release them all. I spend time looking at other children and wonder what life would be like if our child was typical. I watch kids his age run around while we lay on the ground together as a passerby asks how old he is, and then when I say “four” I watch their face change to pity. I watch their face drop as they have no idea what else to say to us.

Some days I just don’t want to do it. I don’t want to feel alone in a room full of people. Have you ever felt that way? There can be people all around me but yet I feel alone because the majority of everyone surrounding me simply doesn’t understand our life. They don’t know what it’s like to have a child with a complex medical condition with severe developmental disabilities. Our day to day life is anything but typical. So, I’ll be honest, sometimes it’s easier for me to just NOT participate.  I don’t want the whispers behind our back or the blatant stares. I don’t have to face any of that if we just stay home. But as I sat with our son enjoying the laughter at the pool while he happily watched his iPad in the breeze, something occurred to me.

There was no where else he would have rather been.

He kept looking up at me with his sparkling eyes as if to tell me he was enjoying himself and was thrilled to be there. His little legs were going crazy. He was happy. He had two of his favorite things; his mom and his iPad. And as much as I would have loved to be the mom in the pool with a glass of wine, I wasn’t. As much as I would give to have him jumping off of the side of the pool, he wasn’t. I would love to take this all away from him and make his life easier, but I can’t. I realized then that longing for the life I dreamed of is futile. My life is happening right now. Our lives are now.

Sitting there, I may have appeared alone, on the sidelines, but that’s not the truth. We were together.  We weren’t alone.

And at that moment, there was nowhere else I would have rather been.

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“As long as it’s healthy.”

*Disclaimer: I did not write this to get into any debates, so please refrain. This is my blog. My feelings. It’s okay if you feel otherwise. Please respect my feelings/opinions and I will return the favor.

In my pregnancy, you will never hear me say “as long as it’s healthy.”

Don’t get me wrong. We all want, wish, pray, and long for a perfectly healthy baby. But what if there wasn’t that guarantee? What if you knew there was a chance your child’s life could be a difficult one? What if you knew that chance was 33%?

According to the genetic counselors we have spoken to, our child has a 33% chance of being affected by congenital disorder of glycosylation.

No one knows the struggles more than we do. No one knows the numerous hospitalizations, appointments, and sleepless nights more than us. No one knows the hard work and determination more than us. It took our son over a year to roll and four years to sit up, and he still needs assistance to ensure he doesn’t fall over and injure himself. A common illness can put him into the hospital for over a week. His body is fragile and we know he isn’t guaranteed a long life. We are aware that our four year journey has been filled with grief and loneliness. Immediately when I found out I was expecting I spent days thinking whatarewegoingtodo? howarewegoingtodothis?? whatifwhatifwhatif?? Then I would look at our son and the only thought that came to mind was…

Your life is worth living.

HIS life is worth living.

Not only is he a child with extraordinary needs, he, himself, is an extraordinary child. His smile is more genuine than anyone I have ever come across. He loves with no expectations or strings attached. He trusts with all of his heart. He has brought us more joy than all of the grief, fear, anxiety, and loneliness combined. I wish every single person had the opportunity to peek over the railing and carry him from his crib in the morning. He wakes with unimaginable joy; thankful for another day. He. Never. Gives. Up. And we won’t either.

I won’t say “as long as it’s healthy.”

Because I know healthy isn’t a guarantee, and for us, it doesn’t change a thing. The genetic counselor reminded me that we are already experts. We know. We are not delusional about what we could be walking into. 33%. No matter what, we will fiercely love this child and I can guarantee you, 100%,  his/her life will be a life worth living.

 

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My tips to you

*Not my typical blog…just for fun! 🙂

Garage sale season is upon us and I think those holding garage sales need a few reminders. As a customer, I am very tired of being misled over and over. I come from a long line of professional garage sale go-ers. My mom, grandmother, and great-aunts are true professionals. I have learned from the best.

 

  1. If you are advertising a “multi-family” sale there better be more than 2 families treasures at your sale.  “Multi” to me means multiple. Several. Just because your neighbor walked over with a fishing rod he’d like to sell does NOT mean you can advertise “multi-family.”
  2. If you write “boy toys” on your sign there better be a table of boy toys not just one Tonka truck. I am going to look at your one truck and turn my butt around and head back to my car. I’m not even going to take one more look at your offerings. The “s” in toys lead me to believe you had more.
  3. You CAN NOT advertise “fabulous” when it’s not. Just no.
  4. You probably have sentimental value to your items or think they are in amazing condition, but I’m going to let you in on a secret…they’re used. Yep. Used. And you may think it’s worth 50% of the original price but it’s not.
  5. Kids clothes. Ahhhhhhhh!!!! I am not buying a t-shirt that has been washed 100x for $2. I can go to Target or Kohls and buy a brand new one for $6. One where the neck is not stretched out and the hem is beginning to fray.
  6. Antiques are not items given to you by your grandmother or something that looks “old.”
  7. Boxes that I need to search through are also a NO. I don’t want to dig around through your stuff to find something I must have, I can do that every morning at my house looking through the laundry to find the only socks my son will wear to school.
  8. HUGE SALE. Okay, this better be inside your garage, outside your garage, and MULTIPLE tables filled over and under. I better be able to spot your house as I’m pulling down the street.
  9. Underwear. Should I even have to say it?
  10. Allowing your children to price their own toys. This is also a NO. I think it’s great that they are trying to earn some money, but do they even know the purchase price?  An airplane with a broken wing is not worth $5, and let’s be real, should it even be in a garage sale?

 

I hope you have learned a few things and had a few laughs! Now go out there with your fanny pack of quarters and find some treasures.

 

 

 

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The “Theraplay” Easter basket

With Easter approaching I decided to come up with a list of basket ideas that do double duty! Not only are they fun, but they provide a purpose. I am always searching for toys that also help our son in his development. He is much harder to buy for since we cannot simply look through the toy section and pick age appropriate toys, or grab a box of Peeps (yum!) and a chocolate bunny. I always need to put so much more thought into what we purchase for him.

  1. Pop Toobs – These are great at getting two hands/arms to work together! They help work on arm strength, while making a fun sound too.
  2. Theraputty – This putty is similar to good ‘ol Silly Putty, but comes in different strengths to help strengthen grip and grasp. Our little guy is still playing with the lowest resistance, but I could play with this all day!
  3. Maraca Eggs – Because they’re eggs!
  4. Cheerios Play Book – Our son loves books but strongly dislikes food. He also needs quite a bit of help with his fine motor skills. This book has small indents where your child can place a cheerio. This one does two jobs for us! He has to touch food AND work on his pincer grasp.
  5. Color Sorting Toy – We aren’t sure if our son can differentiate between his colors, but we also have no reason to believe he can’t. Toys like this one can help with taking items out, putting them back in, and sorting them. Our little guy has a hard time with accuracy as well, so having a target area to put items back is something we continually work on.
  6. Bubble Machine – Bubbles are so fun to watch and even more fun to try and pop! Again, this helps our son reach out and find the bubble he wants to pop. It’s great for hand-eye coordination.
  7. Water Beads – These are a little wet and slimy; great item for kiddos with sensory processing disorder. We keep ours in a Rubbermaid bin to play with year round. Our son doesn’t like new textures or many things on his hands so these are great to play with along with other sensory items. *these are small, so be sure to watch your child if he/she puts things in her/his mouth.
  8. Suction Cup Balls – We love these! We suction these onto our mirror and he has to reach to grab and pull the suction ball off of the mirror. As you can see, we are working on strength and coordination. We are also working on standing, so when we suction the balls higher he needs to push to stand to get them!
  9. Flashcards – I punch a hole in the corner of flashcards and put them on a clasping ring. He loves books so this is almost like a mini book for him and also helps him associate a word with a picture.
  10. Poke-A-Dot Book – These tactile books have raised buttons that are so fun to “pop!” Our son usually uses 3 fingers when pushing a button so this book is extremely helpful in trying to teach him to use just his pointer finger.

I hope this list has been helpful for anyone struggling to find functional items to fill an Easter basket! I know that I am always searching for items that we will actually USE.

Comment below if you have any other “must haves” for a ‘Theraplay” Easter basket!

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The other end.

I vividly remember diagnosis day.

I recall scouring social media and connecting with families from across the globe.

I watched videos of other children affected by congenital disorder of glycosylation.

I soaked up words of advice and encouragement.

I thought I knew what our future would bring.

The one thing I wasn’t ready for was the spectrum of severity.

I wasn’t prepared to be severe.

I’m going to be honest and tell you that there are so many days I feel inadequate. I feel like I’m not doing enough for our son. I question that we should be doing more, I wonder what else there is out there. I search the internet for tools, toys, gadgets, and therapies.

The families that have children affected by CDG are the most wonderful, humble human beings. I am forever grateful for the connection I have with them. The beauty of a support network is support.

The downside is comparison.

Our children have the same genetic condition but yet the differences can be immense. Each child is incredibly different, and I’ve struggled with where we land on the spectrum of severity. I used to think that if we did a certain skill at a certain age things would be “ok”. Every dated goal that I’ve set for him has come and gone. Long ago I came to the realization that specific goals aren’t healthy for me to set, and the main goal of “progress” is all I need. It has taken me years to be honest with myself and say out loud that he’s severely affected. With CDG, and many other disorders, you can meet one child affected by CDG, and you’ve met HIM/HER. You may meet another child who is affected completely different. You simply can’t compare.

I love our support network with all my heart but there are days I can’t look.

Every time a parent posts a video or photo of their child with the same type of CDG doing something we aren’t even close to doing, I hurt. Every video of a child’s voice saying words, I hurt. I can honestly say I am incredibly thrilled for their accomplishment, but there is a part of me that aches. This may be one of the only times I have asked “why him?”

I didn’t want to be here. I hoped and prayed for the other end.

I knew the spectrum was wide. I held out hope that we would be crawling up the stairs at age 4 (like I saw another child do) or saying our ABC’s (just like the video I saw). But we aren’t. And, it is okay.

We’ll be okay.

I know comparison is the thief of joy. But it’s not just that. I want parents to know that no matter what you may or may not do, your child may just be at the other end. You may work as hard or even harder as another family and still may be farther behind. You can get as much advice as you want and do the EXACT same things and your child may not gain weight, increase muscle strength, or learn to say their ABC’s.

You aren’t inadequate. I know you are trying. I know you are researching and learning by trial and error. We all are. But what worked for one child, worked for ONE child. I am telling you that we have tried it all and it simply doesn’t change where he is on the spectrum of severity.

I am doing my best.

You are doing your best.

Sometimes you are just at the other end.

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For him.

blogphotoI sat alone in the family waiting room while our son was in the operating room and I cried. I tried to hold it in, I didn’t want the other families there to see me break down. I texted my husband, I was afraid to call because I knew my voice would break and the tears would fall.

I didn’t expect this. The audiologist showed me her results of the ABR (auditory brainstem response) with a look of concern and empathy. His hearing loss nearly doubled and is now considered “severe” in many of the tones. She told me that during the test she called our son’s audiologist to let her know that things weren’t looking good; everyone was a little bewildered. Severe loss.

More loss.

She walked away and I did my best not to cry. But as the time went on I couldn’t hold it in. I used up the tiny box of scratchy tissues on the table next to me and let the tears fall. My heart ached for our son. And it wasn’t just the hearing loss. It was all of it. All of the “loss” in his life was hitting me all at once. Hasn’t he had enough loss in his life? Hasn’t he had to give up enough? I have spent innumerable hours grieving over the life he has “lost” due to CDG. Don’t get me wrong, his life is full of so much joy and triumph, but at this moment all I was feeling was deep grief. Grieving the life we so wanted for our darling boy.

I sat there wondering if he could potentially lose all of his hearing. I wondered if we would ever hear his sweet voice. I thought about the future and couldn’t help but grieve. I am so tired of hearing the words “loss” and “severe” when it comes to our little boy. Man, he works SO hard. We work so hard, and yet there are days when that doesn’t mater. His body has a mind of it’s own and there are countless things completely out of our control. I know he’s severely affected by his genetic condition, but it never gets easier hearing it. This day hit me like walking straight into a door you think is open, only to get slammed back on your butt.

I was sitting on the floor, defeated.

But you know what? There’s only one choice after that happens.

You get up.

You wipe your tears, dust yourself off, and open the door.

Or you kick the door in. Whatever works 😉

I know that along this journey we’ll continually walk into doors, but I promise that I will always get up. I will wipe my tears, put my chin up, and kick the door wide open. For him. Forever for him.

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Perspective

Perspective: “the ability of someone to take into consideration and potentially understand the interpretations, outlooks, or actions of their self and of other people.” (psychologydictionary.org)

One of the greatest lessons I have learned since Christopher was born is perspective. I sincerely try to write and share pieces of our life simply for a bit of insight. I want people to know what our life is like raising a child with significant needs. My ultimate hope is to share our family’s  struggles and triumphs in a graceful way. I never want to come across as complaining or that I’m sharing for sympathy. Believe me, your sympathy is the last thing I want.

My hope is that I come across as grateful, trying to share the silver lining where I can. Yes, there will be days when the silver lining is extremely hard for me to see. And I have my days where grief takes over. I could make a list of things to be angry about but I’m not going to. I can’t change our life, the only thing I can do is live the best way I know how.

Three years ago my dad passed away from anaphylactic shock from a bee sting, Christopher was diagnosed with congenital disorder of glycosylation, and my uncle took his life tragically all within six months. Life was hard. Days were difficult. I shed more than my fair share of tears.

Instead of asking why me I started asking why not me? Because you know what? Tragedy is everywhere. Your neighbor. Your child’s teacher. You. Every one of us has a level of tragedy in our lives and instead of asking why me we should all be saying “why not me.” None of us is more important than the next. None of us is more equipped to handle loss and sadness more than the other. But many of us don’t take the time to recognize other people’s sadness or tragedy.

I was not prepared for a phone call on a Friday at work saying my father had passed away suddenly. A father who hadn’t returned my call when I called on Monday, and I will forever wish he had.

I was not prepared for a call from my child’s neurologist an hour after a brain MRI saying “how much do you want to know?” And when she told me not to google the words she just said I knew when I did finally google I would be scared out of my mind.

I was not prepared for a call from my mom in the early morning to tell me the tragic news that my uncle took his own life. And as much as I wanted to know details and the whys and how, I actually really didn’t.

Not one person is prepared for any of that.

Thinking about each of those scenarios I can’t help but think further and as much as I wasn’t prepared….no one else was either.

My mom had to call me to tell me my father passed away. Can you imagine the strength it took to say those words?

Our neurologist called me the day after his MRI saying how terrible she felt about herself that she delivered our son’s news over the phone. I reminded her that I specifically asked her to tell me all she could over the phone. Can you imagine how many of those heart wrenching calls she has to make?

Again, my mom had to deliver the tragic news of my uncle to me when I was still grieving the loss of my father and the sadness swirling around the diagnosis of Christopher. Not an easy call to make to say the least.

I think that I have been given a great gift. The gift of perspective. I will forever be grateful that one of the many lessons Christopher has taught me, perspective is one of the greatest. Because of him, I will cherish our life. I will be kind. I will forgive. I won’t, and don’t, sweat the small stuff. I will live with abandon. I will do my very best to always find a glimmer of hope, even if it’s just a tiny sparkle. And I hope that when you read one of my blogs you do too.

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In the weeds

I recently read an article where the writer was a mom of young kids and her life revolved around them. She was trying to explain and apologize to her friends because she was “in the weeds.” She was too busy caring for her little ones who required so much of her to be a good friend. She felt bad for not responding to emails or phone calls. And she reminded her friends that it won’t last forever.

My immediate thought was it will for me. The season of our son requiring everything of me isn’t going to end anytime soon.

He will need me to tie his shoes year after year.

He will need me to change his diapers or help with toileting forever.

He will require supervision always.

He won’t move out and move on.

I’m going to be in the weeds forever.

And let me tell you that the weeds can be a lonely, scary, overwhelming place to be. I know every mother has been here. You’ve been exhausted from countless sleepless nights. Or worried about an illness going around your house or community. You’ve been pulled in every direction known to man, and have no time for yourself. You go to bed too late and wake up counting the hours until bedtime. You’ve had to cancel an event that you’ve looked forward to all week because of a sick kid. Haven’t we all been there?

But for some of us the season of being waist deep in caring for our child won’t end. For parents like me, the weeds are where we live.

One thing I can say about the weeds is that although it can be extremely lonely, I know I’m not alone.

Every moment I feel grief wash over me, I know another mother is feeling the same. Every second I feel out of place or that I don’t belong, I know there’s a mom who gets it. When the day is long and I’m tired of fighting for what our son deserves I can hear another mom telling me “you got this.” When I’m feeling so isolated and exhausted that I start crying while wiping the crumbs off of my stove, I know that unfortunately there’s another mom sitting on the bathroom floor crying with me. Every dream I let go of I know another mom has done the same.  I know I’m not alone in the weeds, and oddly enough, that brings me some comfort.

Another thing about the weeds. There’s joy. And a lot of it.

I know that every moment I’m pushing our son to be stronger, there’s another mom enduring hours of appointments to achieve another goal. Every time I’m over the moon about something seemingly insignificant I know without a doubt there is another mom crying tears of joy with me. Every smile is cataloged into my memory. Every giggle is recorded in my mind. No moment is wasted or taken for granted, and I know with every fiber of my being that there are other moms who feel the exact same way. There are far too many moms who know that each and every day is truly a gift.

You may be here. You might be in the weeds too. It may be a season or a lifetime.

But just know that I’m here. You aren’t alone, I’ll be here for awhile.

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Isolation

I met a friend for coffee recently. Or maybe I should say I briefly saw a friend at a coffee shop. I tried. I tried to get out of the house and have an adult conversation, with a friend. Christopher had a different idea.

Last weekend I made plans to have coffee and enjoy a fall walk with a friend. I was looking forward to getting out and grabbing a pumpkin spice latte for a treat. I walked into the coffee shop full of smiles pushing him and strolled over to the table they were sitting at. Everything seemed to be going well…until it wasn’t. He started screaming. He started banging his head and kicking his legs. I couldn’t figure out what the problem was so I decided to quick order my coffee and try to settle him down. The woman in front of me was very indecisive and I saw the poor cashier give me apology glances over and over. I’ve learned to tune his meltdowns out but I can’t say the same for the rest of the coffee shop. All eyes were on us.

I was hot and sweating as I waited to order my coffee. He wasn’t letting up. I took his jacket off wondering if he was too hot. He continued to wail and arch his back. I showed him a couple of books only to have him throw them on the floor. After what seemed like an eternity waiting for my pick-me-up I told my girlfriend that we were going to wait outside. I left the shop and walked into a greenhouse next door as my eyes filled with tears. There I was, making the decision to find time to enjoy an outing with a friend and yet I was alone.

We walked past the mums and I had to try to hold it together. This life is a different kind of lonely. It’s isolating. It’s isolating without even trying to be. As we walked around the greenhouse, around and around,  I tried to calm him down but I knew we only had one option. We had to leave. I walked to my car and texted my girlfriend. The tears and screaming kept on. He was upset and I didn’t know how to help other than to go home. This was not the first time, and I know it won’t be the last.

I can’t imagine not wanting to be somewhere and unable to move or vocalize your want.

I can’t imagine being hot in my coat and incapable of taking it off or simply asking for help.

I can’t imagine being overstimulated with no way out.

I can’t imagine having a need go unfulfilled because I can’t speak.

Believe me when I tell you that we are working so hard on communication but it is anything but easy. It’s hard. Really really hard.

As I drove away and tears fell on my face while listening to the sobs from the back seat, I couldn’t help but feel for him. If I felt alone how did he feel? I was upset that this is our reality. His reality. He’s in there, he’s so incredibly smart, and he can’t get it out. He can’t show me or tell me…yet. I know there will be a day when all of this is behind us, at least I hope so.

So much of me feels isolated, and in those moments I can only imagine how isolated he feels.

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