Author: Hannah

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Love Tinted Glasses

I’ve written before about not noticing Gage’s physical “flaws” when he was a tiny baby. I couldn’t see poor coloring, an abnormally small head, or anything else wrong with my little boy. All I saw was a perfect and precious gift. It’s like the love I had for my baby overpowered my perception. I like to call it “love tinted glasses.”

Don’t get me wrong, Gage was and is adorable. I mean, look at this face!!

Ice Cream Gage LTG

But it was easier for others to notice his differences than it was for me. Gosh, I wish I was more like that with everyone I encounter! That would be a much better alternative than being quick to notice physical shortcomings in others or myself.  If we all saw people through a lens of love, the world would be a much better place.

I could make a feeble attempt at explaining how to see people more like that, or go on about how becoming a parent makes it much easier, or talk about how magical it is to watch a baby sleeping peacefully. But you know what they say – a picture is worth a thousand words. With their permission, I’d like to share some photos of parents, grandparents, siblings, friends, etc. looking at the special people in their lives with their love-tinted glasses on.

Gage and Gramps on the tractor LTG
Grandpa Keith gives Gage his first tractor ride.

 

Fletcher's Face Paint LTG
Sweet Audrey watches her big brother, Fletcher, get his face painted at his pirate and fairy themed birthday party.
Michelle and Eli Halloween LTG
Michelle (aka Mom) helps Eliana show off her amazing Halloween costume.

1 Corinthians 13: 4-7: Love is patient and kind. Love is not jealous or boastful or proud or rude. It does not demand its own way. It is not irritable, and it keeps no record of being wronged. It does not rejoice about injustice but rejoices whenever the truth wins out.  Love never gives up, never loses faith, is always hopeful, and endures through every circumstance.

I’d love to add more photos to this post and keep it growing. If you have a picture that captures the unconditional love shared between people in your life, feel free to email it to hannahwingo@gmail.com.

Photos submitted by Jessie: 

blue bird group
Teens from Fellowship of Christian Athletes interact with residents at the Blue Bird Orphanage, a home for special needs children and adults, on a missions trip in Nicaragua.
blue bird friends
Making new friends at the Blue Bird Orphanage in Nicaragua.
blue bird dancing
Nicas and Gringas dancing at the Blue Bird Orphanage.
back massage
Will gives his new friend a relaxing back massage.

Photos submitted by Lindsay: 

boat ride
A momma looking at her sleepy boys with love after a full day of boating.
LJ and Erin
Another momma trying not to worry about being without makeup and looking through a “selfie” lens at her baby who is quickly outgrowing her lap.
Elise and Roxie
A girl who loves her dog.

Photos submitted by Cara: 

Matt and Miles
Daddy Matt and Miles sharing snuggles.
Cara and Miles
Smooches at sunset.

Photo submitted by Lizette: 

meeting papa
Millie meeting Papa for the first time.
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Enough – Focusing on Joy, Prayer, and Gratitude

Along with having Gage in First Steps, the early intervention program, comes regular evaluations of his progress. We meet with our service coordinator about every 6 months to access Gage’s outcomes and adjust goals as necessary. Our initial meeting to set his goals was exciting. I held my tiny newborn while our OT talked about him rolling over, sitting to hold a toy, and holding his head upright. I was excited to imagine all the things Gage would do. The first eval came and went and left me feeling sad because none of his original goals were things we could check off our list, we only added to them. By that point, I was less starry-eyed and the old and new goals seemed more daunting than exciting.

Working and interacting with Gage on a day-to-day basis wasn’t sad for me, I enjoyed him just as he was and adored exchanging smiles and giggles with him, or snuggling and soothing him if he was upset. But each time we had an evaluation that was focused on his goals, it was hard not to think about all the things he couldn’t do, rather than celebrating accomplishments. As time has passed and I know what to expect, those meetings have gotten easier. But in preparation for our most recent meeting, I was reviewing all our goals and reading all the ways we planned to work with Gage to help him accomplish them. It left me feeling so guilty for not doing enough. Not working with him enough outside of our therapy sessions. I try not to focus on feelings of guilt, because I don’t think it accomplishes anything and tends to be a downward spiral of negativity. But as I read through the list of Gage’s many goals, those feelings surfaced and gave me a sense of inadequacy.

The next day I was walking with a friend (one of my favorite summer rituals) and she was telling me about an “ah-ha” moment she had when coming across a certain bible verse – 1 Thessalonians 5: 16-18 which says “Always be joyful. Never stop praying. Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.” She quoted the verse to me and explained that she was always praying to know God’s will and after reading that verse, realized it is spelled out right there. As long as you remember to do these 3 things – be joyful, pray, and be thankful – you are doing enough. Although our conversation that morning was completely unrelated to my feelings of guilt and inadequacy from the day before, her words, especially “enough,” had tears welling up in my eyes. This is a close friend, so she’s probably used to seeing my spontaneously burst into tears by now, but I think it still caught her off guard since we were discussing something totally different. She wrapped me in a hug and asked, “Why are you crying???”

I explained how I had felt just the day before and how much her words touched my heart and were exactly what I needed to hear. We confided in each other how tough it is as moms to know if you’re doing enough. To be honest, there is always more we could do. Now more than ever we seem to be constantly reminded of that, whether it’s ideas from Pinterest, the trap of comparison or evaluating therapy goals. But what I learned that day and by studying that verse is that if I’m so worried about all the things I’m not doing enough of, I’ll lose sight of the three things I need to do most – be joyful, prayerful and grateful. I take comfort in knowing that’s God’s will for me.

Later that day, my friend and I met up again and she handed me a gift – her 1 Thes. 5:6-18own bracelet with 1 Thessalonians 5: 16-18 engraved on it. I was reluctant to accept it at first, because I knew she recently got it for herself. Also, since my regular attire is now mostly sweat pants and t-shirts, I don’t wear jewelry much anymore. But she insisted, so I happily wear it any chance I get. It’s not only a reminder for me to stay joyful, pray and be thankful, it has sparked conversations and given me chance to encourage others as well. Next time you start to feel guilty or inadequate, please remember YOU. ARE. ENOUGH.

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My Kids are my BBQ

A few years ago, pre-kids, the hubby and I were lucky enough to go on a mission trip to Nicaragua. We spent a week building homes alongside the Nica people who would live in them and had the most wonderful experience getting to know the families in the village. Despite nica familymy complete lack of construction know-how, it was an amazing and life-changing trip. It’s surprising the way God can use us, even when our own abilities are lacking.

During our time in Nicaragua, we stayed at a base camp of sorts and were bused to and from the village each day. On one of these bus rides, my husband Evan struck up a conversation with a fellow traveler who told him all about the BBQ competitions he competes in back in the states. Of course Evan was enthralled, asking a million questions and loving all the photos his new pal shared of the trailer he has decked out to make delicious smoked meats on the go. They discussed everything from how to inject juices into the meat to the best way to display it for the judges. I sat a few seats back, listening to their conversation and enjoying how animated the story-teller was. His thick Southern accent just added to his charm. Reflecting on it later, I told a friend about this man’s enthusiasm for his hobby and thinking out loud said, “I wish I was as passionate about anything in my life as this man is about BBQ!”

Fast forward a year or so, and I’m heading back to work after my maternity leave with Gage. I didn’t dread the initial return, or really consider doing it any differently at first. I just tried to keep my head above water as I jumped back in to a busy season at work. But it wasn’t long before I was crying most days on my drive to the office, or searching for ways to earn income from home while I pumped in seclusion behind a locked door. I had no idea how strongly I would desire to be a stay-at-home mom. I’ve always enjoyed my work and found value in it, and mean it when I say I had the BEST working environment one could hope for. I worked alongside wonderful, understanding people and mentors who trained, supported and cared about me. For a long time, supporting our family with just one income just didn’t seem like a viable option. However, after several months of deliberation and prayer, and the knowledge that we’d be welcoming baby number 2, we decided that it in fact was right for us.

Of course leaving such a great group of co-workers was bittersweet. At a former colleague’s graduation party a few months after my last day, I was talking to a friend from work and telling him how much I enjoyed being at home. I think my exact words were “Of course I miss everyone, but I love it every single day, even on the really hard days.” A bystander overheard our conversation and my friend introduced me and explained that we used to work together. After shaking hands, this gentleman asked me, “So what do you do now?” and with the biggest smile on my face I replied that I stay home with my two boys. Who knows what this person was thinking, but I imagine that as he listened to me describe my days, he could sense my enthusiasm for what I do. Perhaps he thought I left my former job for another career opportunity and was describing the challenges of a new job. Maybe he was surprised to discover my new title was “mom” rather than manager or director.

Thinking back on the exchange, a thought popped into my head…”my kids are my BBQ!” I’ve discovered the one thing I’m the most passionate about. Granted, they aren’t a hobby that I just enjoy on the weekends like traveling to competitions or perfecting fall-off-the-bone ribs, but I could talk about my two sweet boys for hours. I could tell you all about their smiles, giggles, adorable cries, sleep patterns (or lack thereof) and I’d be thrilled to whip out my phone and share our latest photo session. I truly feel blessed beyond measure that this is my reality now. May we all find our BBQ!

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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.