Tag: CMV

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The Sweet Spot

We just finished up our final session of OT through the First Steps program. I’m drying my eyes after hugging our therapist goodbye. First Steps has been such an incredible resource for us, but it’s sadly coming to an end as Gage will transition into the public school system’s early childhood program this fall. Change is hard!

I’m excited for Gage to start his new school year, and I’m expecting good things to come from that transition, but it doesn’t mean I won’t shed a few tears along the way. This season of life has me desiring to freeze time for a little bit. Not forever, of course, but I just wish I could press pause and soak up the way things are right now. I think many mommas can relate as kiddos head back to school or start kindergarten, etc. I can’t wait to see all the back to school pics that will undoubtedly fill up my newsfeed in the coming days and weeks!

 

Right now, I feel like our family is living in the sweet spot. It looks much different than I imagined, but I would say that in the grand scheme of things, I’m on a peak, not in a valley. Sure, there are challenges that come along with having a 3 and 1 year old, especially considering the extra help Gage requires and the independence Caleb demands but is not quite ready for. But how good things really are right now is not lost on me.

My thoughts about our future come with so many mixed emotions. It’s a strange spot to find myself in, balancing all the unknowns of what the future holds with the hopes and dreams I have for my family. I’m excited for Gage to continue developing and mastering new skills, no matter how slowly. I’m anxious to see how he’ll meet the new challenges he faces as he grows up.  But anticipation for what’s next is also accompanied by the undeniable reality that some things will get harder as we go instead of easier. Right now, Gage is Gage cuddleslightweight and lap-sized. So even though accessibility is already important to us, there are still ways to “make it work” when we have to. I know he’ll get bigger, which I hope means that I’ll get stronger, because I already feel aches in my back after a long day of carrying him around…and he’s still under 25 pounds! As he grows, his equipment will too, so it might be time for me to hit the gym!

Part of me would like to keep things just how they are for longer than I get to—things like therapy sessions on our living room floor instead of a clinic or school setting. But I think I’ll get used to whatever we need to do however we need to do it. We tend to find ways to settle in to our new normal. I remember when Caleb was brand new and the idea of leaving the house with two kids seemed so daunting. But once I did it and survived, I felt such a sense of relief! It’s amazing the freedom you can find with a double stroller and wide enough double strollerdoorways. I also remember when Gage was brand new and Evan spent hours upon hours reading about CMV and the effects it can have, trying to get a glimpse of what our future might look like. I would remind him to enjoy Gage in that moment instead of trying to solve or fix things or worrying about what’s to come.

I guess I need to take my own advice and remember to enjoy my kids the way they are in the present.  To soak up each stage that comes and goes as we’re in it. Maybe the sweet spot doesn’t have to be a fleeting moment, or something to hope for in the future. Perhaps it can be a lasting state of mind when you look at things with the right perspective. The phases ahead of us may not be easy, but that doesn’t mean they can’t still be good.

“For everything there is a season, a time for every activity under heaven.” Ecclesiastes 3:1

“Yet God has made everything beautiful in its own time. He has planted eternity in the human heart, but even so, people cannot see the whole scope of God’s work from beginning to end. So I concluded there is nothing better than to be happy and enjoy ourselves as long as we can.” Ecclesiastes 3:11-12

 

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Leap of Faith

barb and gage
Tiny baby Gage with his sweet and thoughtful pal Barb.

“Sometimes your only available transportation is a leap of faith.” This is printed on a magnet given to me from Barb, one of my favorite coworkers, on my last day in the office. Barb’s an amazing person and friend and has a knack for giving the perfect gifts. This statement rings so true for me related to my decision to stay home with the boys. What once seemed impossible is now our reality.

I spent countless hours reviewing our budget, exploring different insurance options and trying to find any way possible that made sense for us to give up half our income. That was such a scary thought, but my desire to be home just would not go away. We’re only a few months in, and of course we’ve had to make some changes, but I think Evan and I have both been surprised that we haven’t felt more strapped than we have. When we crunched the numbers on paper, we expected to be dipping into savings by now, but that hasn’t happened yet. It’s amazing the way we’ll end up with a pleasant surprise from one source or another, and having just what we need.

I have to remind myself of the ways we’ve been taken care of each step of the leap of faithway. It’s so easy and tempting to worry about the future. In just a few months, Gage will age out of the First Steps program and the assistance we’ve had in paying for equipment will go away. The next hurdle to get past will come when my COBRA insurance coverage runs out and we have to make tough choices about our next steps. All of that is very daunting, but if we’ve been taken care of so far, I have to believe that trend will continue. I hope I’m not being blindly optimistic, because I realize we’ll likely still face many challenges ahead.  But when I have no other way to keep moving forward, I’ll look at that magnet on my fridge and remember to use the only mode of transportation I have left—a leap of faith.

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The S Word

No, not that s word. One that’s much worse…seizure. When Gage was diagnosed with CMV, we did our fair share of online research to learn more about the disease. The outcomes vary greatly and one thing mentioned as a possibility is seizures. Luckily we got through the first 2 ½ years of Gage’s life without experiencing any seizures. Knowing a few other parents and kids who battle epilepsy, I count 2 ½  years of being seizure free as a huge blessing. But during that time as I read about and got a glimpse of their struggles, I couldn’t shake the nagging feeling in the very back of my mind that I might one day gain an even better understanding of what they go through.

I try not to think about what negative things might happen in the future, because I don’t see the point really. Any number of bad things could happen to any kid and we can’t live our lives in fear of all the what ifs. So if concern about seizures crept into my mind, I’d push it back down and focus on something else. But that nagging feeling was still there, until one day when it was forced to the forefront.

One treatment option for kids with excessive muscle tone like Gage’s is Botox injections, to loosen them up and give them a greater range of motion and hopefully the ability to do more with their hands, arms and legs. It’s something we’ve been discussing with doctors since early on, but delaying until Gage was a little older since it requires anesthesia. After much deliberation, we decided to give it a try. Our original appointment was scheduled in December, but was cancelled because Gage was sick. A change in the plans kind of made me want to call the whole thing off. But we rescheduled in January. At that appointment after being weighed and having his temperature taken, as we waited for the anesthesiologist, Gage began having a seizure. It started very subtly and then increased in intensity. Luckily Gage was surrounded by doctors and nurses who knew just what to do and quickly gave him medicine to get it stopped. I just stood helplessly by, holding my sweet boy’s hand and trying to offer any comfort I could as tears streamed down my cheeks.

It was like Gage wasn’t really there with us.  The first indication was not being able to get him to make eye contact with us or respond to his dad’s voice.  The jerking and twitching were obviously out of his control and he didn’t even flinch during multiple attempts to start an IV. I’m so glad that Evan was there with me to witness what happened first hand, rather than me retelling him what it was like. The anesthesiologist told us we would get the quickest seizure consult he’s ever seen since Gage’s neurologist was heading over already to administer the Botox. He also assured us that this was his area of expertise. The neurologist arrived shortly after that and talked us through a lot of different things, prescribed a rescue medication and planned to follow up with an EEG and MRI. It also gave us the chance to discuss Botox with him in more detail. If Gage having a cold made me want to forget about it after our original appointment, you can imagine that a seizure during the second attempt really made me want to just scoop him up and run away. But oddly, our conversation that day ended up having the opposite affect, reassuring me that it’s a treatment option worth pursuing.

Now we’re in the midst of trying to learn more. Gage had an EEG that did eegshow some abnormalities, and an MRI that showed some expected changes for someone with his condition, but nothing getting progressively worse. I expect to learn more at our next neurologist appointment in July. We’re weighing the options of starting preventative medication versus relying only on the rescue meds. It’s so hard to know whether or not you’re making the right choices for your child sometimes and that process can be extremely frustrating. Luckily, since that original incident, Gage has not had another seizure. But the same nagging feeling that first had me worried about the possibility is now whispering “what if it happens again?”

Since that day, Gage has been his normal self, and I guess you could say that things really haven’t changed much other than taking his medicine with us wherever we go. But fear is such a powerful emotion that can take a huge toll. Even with just one, isolated (so far) seizure, I’m now more concerned about leaving Gage in other’s care and have questioned whether or not he should still be going to daycare. I hate that I’ve let my fear have that effect on me. I know that going to school is good for Gage and that having a date night and some quality time with my husband is beneficial. So I’m bothered by the fact that I second guess my decisions to do those things. I just have to remind myself how pointless it is to worry about what bad things could happen and know that no matter who is caring for Gage, his life is ultimately in God’s hands. I couldn’t ask for a better caregiver than that.

“Fear not for I am with you. I am your God, I will strengthen you. I will help you. I will uphold you with my righteous right hand.” Isaiah 41:10

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Afraid to Pray

When I went back to work after having Gage, I quickly had a strong desire to take a break from the workforce and stay home full time. The first time I mentioned this to Evan, he said, “Believe me, I’ve thought of that. I’ve crunched the numbers and I just don’t see how we could make it work.” For us, the kicker was insurance coverage, which I carried for myself and Gage.

During that time, I was meeting regularly with a group of women to have coffee and pray. We would share the struggles we were going through and lift each other up. I can remember at those meetings always expressing the struggles that go along with being a working parent and the challenges of Gage’s needs on top of that. I would often cry with my friends as I shared, even when I didn’t expect to. I’d get a simple question from someone, then end up in tears as I responded.  I think to those women who cared about me and knew me well, it was obvious that my desire was to stay home. But I never dared to speak those words out loud when I asked for their prayers. I would say things like, “please pray for my attitude at work” or request prayers that I could manage my stress and achieve more balance.

One time on a drive back to my hometown with my cousin, I was telling her about my struggles. She’s had her own share of challenges in this life in a completely different way…things I can’t even begin to relate to. She and I grew up together as close as two best friends could be, but during our teenage years, life took us in opposite directions and we lost touch for a long time. Which was incredibly sad, but also made it that much more amazing when she came back into my life and we reconnected.  Anyway, she had just started a new job, which was a challenge for her to get and she was obviously grateful for that opportunity. I felt guilty telling her that I didn’t want to work anymore when, compared to her situation, I had it made. I could take vacation days and had a very flexible schedule, while she was penalized if she was even 5 minutes late for a shift and understood the threat of a layoff due to the seasonal nature of her industry.

But being the understanding friend she is, she didn’t tell me to suck it up and get over it. She said something so profound. I can vividly remember her sitting in my passenger seat saying, “You’ve got to tell God what you want!” It was like best friendsI was getting permission from the most unlikely source to share my true desires with God. It seems so crazy looking back on it, because obviously God already knew what I really wanted, but it seemed impossible and I was so scared to ask for that. From that point forward, I started praying that God would make a way.  Now that my prayers have been answered, I’m reminded that nothing is impossible for God. The best friend riding in the seat next to me was proof of that. If God can restore a relationship that seemed totally lost, he can make a way for me to stay home. Both of those things may have happened on a different timeline than I would have chosen, but as I spend my days at home now with not one but two sweet boys, or get to have lunch and catch up with my cousin, I feel blessed beyond measure. These blessings serve as reminders to look for God’s miracles – making what seems impossible happen.

Philippians 4:6 – Don’t worry about anything; instead pray about everything. Tell God what you want and thank him for all he has done.

Matthew 19:26 – Jesus looked at them and said, “With man this is impossible, but with God all things are possible.”

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Desire for a Diagnosis

As a mom, the last thing you want to do is admit there’s something “wrong” with your kid. But part of me wants a quick and easy explanation for why he’s different. Gage has had a diagnosis of congenital CMV since the beginning.  But saying CMV to anyone is pretty much like speaking another language. It even sounds weird and foreign – cytomegalovirus. Surprisingly, as common as it is, almost no one has heard of it. It’s a shame there’s not more awareness, and we hope to do our part to advocate for more research and understanding about this disease. The National CMV Foundation has been an awesome resource that I’ve learned a lot from. But when someone wants to know more about Gage, it would still be nice to tell them more in a way they could understand.

Recently, Gage’s neurologist offered another diagnosis that may accomplish that—cerebral palsy.  The things I read about this diagnosis before had me thinking to myself, “that describes Gage.”  So I anticipated the diagnosis at some point. But I had torn feelings about it. Part of me didn’t want to have Gage in stander on deckanother thing to add to his list of challenges. It seems silly, because the way you describe his condition doesn’t change anything about his challenges. Whether or not the doctor officially called it CP has no effect on how Gage struggles to sit, reach, eat, etc. He deals with all of those issues regardless of them having a name.

The other part of me desired a description like CP so I could tell people who are curious about him that’s what he has and it might mean a little more to them than CMV. Again, that seems so silly. What I most want people to know about Gage is what an awesome kid he is. That he has a great personality. He is determined and works so hard to accomplish what he can. He is silly and smiley and has a streak of stubbornness. My hope is that people can learn to Gage playing on floor with dadsee him for who he is instead of what he has. When I get caught up in my desire for a diagnosis, I take comfort in focusing on who rather than what. Who Gage is and ultimately, who is in control. Not me, not Gage’s doctors, but an almighty God. I am also comforted by remembering who he is…a good, good father who loves all his children and has plans that are better than ours.

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11

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Tough Choices

Deciding what’s best for your kids is a tough job. It’s hard enough just figuring out things for yourself, but when you’re responsible for another little human, it gets even trickier. Each day as a mom comes with so many choices. Do I get my baby out of his crib when he refuses to sleep or let him cry it out? What school should I send my kids to? What’s the best sunscreen for their sensitive skin? If you’re anything like me, the feeling of indecision can be crippling. That feeling is multiplied when you’re caring for a nonverbal, special needs child.

As Gage approaches age 3, we are being faced with more and more decisions about what’s best for him. He’ll transition out of early intervention therapies and into the public school system this summer. I’m doing my best to stay hopefully optimistic that he’ll have a wonderful experience there. But the gage portrait posequestions that come into play relate to whether or not he’ll get enough of what he needs. Will the PT, OT and speech therapy they do at school be enough? Will I know enough about what goes on when I’m not there with him? Will I be able to keep good, open communication with all his teachers and therapists at school? Once August rolls around and the new school year is underway, I hope I can answer yes to all these unknowns. Time will tell and I certainly don’t think his new school setting will hinder him, so I’m excited for what’s to come.

Thinking about what’s needed above and beyond school is slightly less gages smileexciting. I’m so grateful for a plethora of choices (water therapy, art and music therapy, equine therapy, etc.) but it’s hard to know how much or little we should be doing, and how exactly we’ll be able to do (and afford) it all. But still, there are so many possibilities that give us plenty to look forward to.

What’s much less exciting and much more intimidating is making decisions about Gage’s medical care. After Gage’s second birthday, we started talking more seriously with his neurologist about using Botox as a treatment option for his stiff muscles. We wavered back and forth about it for a while, getting input from his therapists, other parents and of course his doctors. Ultimately we decided to give it a try. Our original appointment was scheduled in December, but Gage got sick and we rescheduled for January. That morning as we were prepping for it at the hospital, Gage had his first seizure. At that point, our focus went in another direction as we scheduled an EEG and MRI to learn more about the potential for seizures to continue. We are still in the midst of all that, but also approaching the rescheduled appointment just around the corner. And I’m terrified.

The last time we had it scheduled, I felt like I had got to a good place and felt confident in our decision to try out this treatment. And strangely, after the whole seizure ordeal, we spoke at length with the doctor, learning more specifics about the procedure, and I was even more at ease that this is something we should at least try. But it was easy to say to myself, “yes we should do that,” when it was plans for somewhere down the road. Now that the appointment is so close, all my doubts are creeping back in. I spent some time over the last few weeks revisiting our plans with Gage’s therapist and doctor. We are actually moving forward with a slightly different treatment now, called Dysport.

To me, one of the scariest parts is that Gage will be sedated for the procedure. This allows the doctor to be more precise with the injections, working with a perfectly still patient.  Before our January appointment, I kept reminding myself that kids get sedated for procedures all the time and thinking of all my friends’ kids who have had tubes put in their ears or tonsils removed. I tried to brush it off as no big deal. When things ended up the way they did that morning, it was a huge reminder that Gage is different than all my friends’ kids. Somehow my fears seemed justified or rationalized, in the worst way.

And here’s where I put into words my biggest fears and doubts, rational or not. These are words I haven’t been able to say out loud or admit to anyone, but the fear is there and it is real, as evidenced by the tears that keep rolling down my cheeks as I type. I’m so scared that something will go terribly wrong and Gage won’t make it through. Or in a less extreme case, he’ll have complications that make things harder on him in the long run and don’t offer any benefit. And I’m afraid it will be my fault, because I’m the one who decided to go through with it. I’m struggling to get past the point of making the call on this one, with hopes for some improved range of motion and capabilities (could he walk one day with more movement allowed in his legs?), which all pale in comparison to simply having my sweet and happy boy with me each day. How could I ever reconcile with myself if an attempt to improve Gage’s quality of life does exactly the opposite?

The hardest part of this decision for me is the elective nature of this treatment. It’s not something we absolutely have to do. Our motivation for trying it lies in the possibility of improved outcomes, and wondering what might have been if we didn’t at least try. It also seems like a less invasive option than some other treatments. But there’s no guarantee it will make things better for Gage. Which I suppose is true of any choice a parent has to make for their kids. There’s no guarantee your baby won’t keep you up every night for their first 9 months (shout out to Caleb Louie) or your water babies won’t end up with a 3rd degree sunburn, despite your best attempts at protecting them.  So we just do the best we can, then we put our faith in God and trust that he is in control and will take care of us.

I hesitated to share this post, but with the appointment approaching tomorrow morning, I just can’t seem to shake my feelings of uneasiness. I’m writing today to ask for an outpouring of prayers over my precious Gage. Prayers that we are in fact making the choices that are best for him. Prayers that the doctors and nurses caring for him are blessed with wisdom, skill and expertise. Prayers that Evan and I will have peace of mind and comfort that can only come from above. Thanks in advance for lifting us up and walking this journey with us.

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Tissues At the Doctor’s

When we welcomed Gage into our world, we were introduced to a whole new group of people who became a regular part of our lives as well.  Over the years, we’ve gotten to know Gage’s pediatrician, neurologist, ophthalmologist, audiologists and many more nurses and therapists pretty well. It’s amazing the way so many different people have his best interest at heart and we are so grateful for the excellent care that he receives.

Sometimes I think back to some of the first conversations we had with doctors and nurses. It seems like anyone who knew Gage’s diagnosis wanted to share a story about another kid they knew with CMV who ended up being just fine. I’m not sure I can trust my memory correctly and if that was reality or just what I wanted to hear. hospitalPerhaps I was clinging to any hope I could that it would all be ok and Gage would somehow magically outgrow his diagnosis. Maybe those people just wanted to say something comforting in an uncomfortable situation. It made me realize that any pediatric doctor or nurse has a two-fold job.  They are not only experts in their fields, they must also fill the role of counselor to grieving, hurting, confused parents.  While I trust that everyone responsible for Gage’s care is doing their very best for him medically, I’ve witnessed varying degrees of skill with the other part.

I remember one day being at back to back appointments with Gage and I just couldn’t keep myself together. The tears were flowing in the pediatrician’s office and they continued after we had his hearing checked. Both doctors did the same thing – they picked up the box of cheap, crappy tissues that are in every doctor’s office I’ve ever been in, and reached it out towards me. I sniffled and grabbed a couple. I’ve always felt awkward when someone has offered me a tissue when I cry. I feel like they intend for me to politely dab my tears, but I’m usually well past that point and end up loudly blowing my nose instead. Anyways, I don’t know why, but for some reason in both of those instances, that small gesture was so comforting. Like the doctor didn’t know what else to do or say, so they just defaulted to the tissue box move. (I wonder if they teach that in med school?) They didn’t use any words or say anything cliché, they just knew I was sad and they couldn’t change that, so they offered what they could – a crappy tissue. They just let me be sad. Like by offering that tissue they were granting me permission to cry, or in my case, blow a bunch of snot into it.

That experience made me realize three things.  First of all, even though not everyone can completely understand what we as parents go through, most people are doing their best to treat us with kindness. It might not come naturally to a highly intelligent brain specialist to be sympathetic and understanding, but he’s still doing the best he can to fill that counselor role. Secondly, I’d rather have a cold, impersonal doctor who is the most medically qualified caring for Gage than a less qualified one who is good at coddling me. And finally, I realize that if we will just take the time to look for it, comfort and kindness can be found in so many different sources – even a box of cheap tissues.

“Though he brings grief, he also shows compassion because of the greatness of his unfailing love.” Lamentations 3:32

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Love/Hate with A/T

Disclaimer: I try to avoid complaining or having a negative tone in my posts, but this one walks the line. I completely recognize that our equipment needs are far less than many other families and don’t want to be insensitive to that fact. I’m simply a mom trying to honestly share my feelings, no matter how unjustified or selfish they might be.

My son needs some help to accomplish what’s easy and natural for most kids playing piano in standerhis age. We’ve learned a lot about the assistive technology (A/T) available to help him. The variety of offerings can be amazing and innovative. I’m so thankful that even though Gage can’t stand on his own yet, a stander gets him in a proper upright position and allows him some mobility. So why do I also fantasize about pushing that metal, padded, Velcro contraption off a cliff???

Each new piece of equipment we order comes with the excitement and hope that it’s going to make a big difference in Gage’s outcomes. God knows I’d do anything I could to help him and give him as many opportunities as possible. I love that I’m able to wheel him around the house with me while he stands or sits, that while wearing his AFOs, Gage has more confidence supporting his shopping at Sam'sweight, and that an adaptive seat enables him to ride in the cart while I grocery shop. I know how lucky we are to have equipment that makes a difference in his life and I’m very thankful for that. Our early intervention program has been a HUGE blessing, frequently footing the bill for any equipment his therapists recommend. But I still get a knot in my stomach when I see the outrageous price tags on these items, knowing that G will soon age out of the program.

When new A/T arrives, our initial anticipation often turns into frustration with the design or functionality. Why isn’t this part adjustable? Couldn’t they have made it easier to clean? Why does it have to be so…freaking…HEAVY??? And while I’ve gotten better about managing my expectations, a new device never lives up to my unrealistic hopes of a magical fix for whatever issue we’re trying to address.

Deep down, I know the real reason for the love/hate relationship I have with Gage’s equipment, devices, braces, etc. As grateful as I am to have all these things to help him, I wish he didn’t need them. I want to snuggle his baby soft skin with no hard plastic or scratchy Velcro in the way. I want to get him swingingdressed without forcing his limbs and joints  to bend into the correct positions. I want to take him for a walk in the park without securing a dozen snaps, straps and buckles first. But in the end, I know how lucky I am that I get to do all of these things. It’s a privilege for me to raise this sweet boy. I’m so thankful he’s healthy enough to be outside. If a few extra steps or heavy lifting are what it takes for Gage to be able to do things that he otherwise couldn’t, then sign me up! It’s a small price to pay to see his adorable smile and hear his infectious giggle when the fresh air hits his face.

 

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Denial vs. Hope

Gage was diagnosed with CMV very shortly after birth. We didn’t spend weeks or months wondering what was wrong. We knew fairly quickly – I think it was the day after coming home from the hospital that we got the call. But what was still uncertain was what this diagnosis meant for our boy. CMV is such a broad spectrum. Babies might have no symptoms at all, or might be severely affected. Each doctor, nurse or other medical professional seemed to say the same thing initially (or maybe I was just hearing what I wanted to hear), that some kids with CMV are perfectly normal by the time they are 10 to 12 years old. When Gage was a newborn, he was just like any other baby, aside from the small size and especially small head. As we started therapy, our therapist set goals for Gage that seemed typical of any baby’s milestones. All of these factors had me believing that Gage was going to end up being just fine. That he would “outgrow” his challenges and overcome them one by one.

Gage closeupAs the months passed, it became more apparent that wasn’t necessarily the case. Among everyone involved in Gage’s life, I think I was the last one to realize this. It seems so odd to say that because besides Evan, I would argue that I know Gage better than anyone else on earth. But I see him through love-tinted glasses. I know not only his body and physical abilities, I get a glimpse at his soul. I will always believe that the very best is possible for him, even if he has a harder time than most. But as my eyes were opened more to reality versus my hope for the future, I began to slip into a state of depression.

I remember talking to another special needs parent through the Family to Family network – an outreach from UMKC. As we began to discuss Gage and his outcomes, I confessed that perhaps I’d been living in a state of denial. She shared a story with me about another parent describing it not as living in denial, but rather living in hope. I’ll always remember that turn of phrase, but I have mixed feelings about it. I’ve thought about it time and time again, and just couldn’t seem to pinpoint why that story made me uneasy. If I were living “in hope” rather than denial, but then come to the realization that my child will never be like everyone else and may never achieve the things I’ve wished for him, does that mean I no longer have hope?

Many months later, I’m on the other side of that depression that resulted from the “eye opening.” When I was in the midst of it, I couldn’t keep from crying when people asked how Gage was. I hated the way that felt. When I got the question, “how’s Gage?” I wanted to beam with pride and brag about what an Gage prop sittingawesome kid he is, but that wasn’t the reaction I had. I’m not sure why I struggled so much with it, because of course I was so proud of him and do believe he’s an awesome kid. I can easily tell you that now, and could then too after I regained my composure. I credit getting through those dark days to an awesome support system of friends and family and a faith that reminds me that this world and these earthly bodies don’t get the final word. Words that other people have written and shared have also helped me get through and my love Evan has always been my rock, letting me be as weak and vulnerable as I need to.

So, where does that leave me in the denial vs. hope debate? I’m still not sure I have a good answer, but I recently read a quote and thought to myself, “Yes. This.”  I don’t have eloquent words to express where I’ve landed with my own feelings, so I’ll share the words of another who might offer a little more clarity. This quote that was shared by another special needs mom is from an artist named Maggie Lindley.

“Hope is one of my favorite emotions because of its humility. It’s not like gladness or joy which stick around just for the good stuff. Hope is my heart’s missionary. It humbly seeks fear and shame and hurt and befriends them. Hope enters the very dustiest parts of my heart, clears out the cobwebs, and whispers of the promise of eternal perfection.”

 

 

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Better Not Bitter

Having a child with special needs is a roller coaster of emotions. There are so many highs and lows, and it’s tough to constantly be teetering back and forth between moments of elation and celebration and those of sadness, confusion and fear. During the first few months of Gage’s life, it seems like we were constantly at one doctor’s office or another. I remember how excited I would get over each and every ounce of weight he gained. I would send out mass text messages to family and friends proudly announcing any weight gain, or happily reporting positive results from a hearing or vision check. But there were other appointments that made it harder to follow up with a good report. Visits to the neurologist sometimes led to more questions than answers.  Rather than leaving and sending a text saying “Gage’s brain ultrasound looks great!”, I was Googling things like “intracranial calcifications” and reading all the worst case scenarios.

The lows of my emotional roller coaster weren’t always caused by doctor visits. Sometimes the trap of comparing my child to other kids is why I ended up in tears. I found myself being jealous of the most trivial things that other kids could do, or having misplaced animosity towards other parents with typical concerns like teaching their toddlers to potty train or learn their colors. When I found myself struggling with resentment towards my other mom friends, I knew something had to change.

Every parent has challenges and struggles and I don’t get to feel sorry for myself or expect people to tiptoe around my emotions just because my child’s challenges are different than theirs. I realized that I need to feel all my emotions, but I get to choose how I let them affect me. My mantra became “better not bitter.” I don’t want to focus on the negative all the time. Although I can’t level out the peaks and valleys of our roller coaster, I can choose to look for the good things in our situation. And believe me, there are so many good things…snuggles from a sweet, sleepy boy…Gage’s “dancing” when I turn on the radio and he bobs his head to the beat…giggles and splashes in the bath tub with his little brother, just to name a few.

I shared my mantra with my husband, and he helps hold me accountable. He is my go-to person to vent to, because of course he gets it. But when I start to go on and on about something that bugs me, he’ll say “better not bitter” and totally call me out on the pity party I’m having. Obviously, I’m flawed and broken and have a long way to go. But I’d like to think that little by little I am becoming better and not bitter.
Better by being more patient, compassionate and empathetic than I used to be. Not bitter by letting go of trivial things I can’t control and by focusing on the positive and celebrating the joy found in each day. I know I’d be even more of a lost mess if I didn’t have the grace of God and the wonderful people he places in my life to help me along the way.

“Get rid of all bitterness, rage and anger, brawling and slander, along with every form of malice. Be kind and compassionate to one another, forgiving each other, just as in Christ God forgave you.” Ephesians 4:31-32