Month: June 2017

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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.