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.
As 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 
awesome 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.”
friend grabbed Caleb’s car seat and asked what else he could take inside. Shortly after, another pal came out and scooped up Gage in her arms. I breathed a sigh of relief and ran inside behind the rest of the crew. This is just one of the many examples of our friends lending a helping hand.
raising a special needs child is real, but it doesn’t have to get the final say. We aren’t meant to do this life alone, regardless of our situation. You might be raising kids, caring for an aging parent, or just getting from one day to the next pulled in different directions by the demands of work, school, and the overall busyness of life. Thank God we can connect with each other and ask for help. And if we’re really lucky, we have friends who recognize our need for help before we even ask…and carry our kids inside through the rain.
new sitter. I was skeptical, but after the first phone call with our future sitter, LC, my doubts were quickly put at ease. I hung up the phone and looked down at the baby in my arms through teary eyes and with a shaky voice told him, “See, God will always take care of us.”
with a panoramic view of the whole gym. I notice a family walking through the doors with a teenage daughter slowly and carefully taking steps across the gym floor. A couple things were apparent about this young girl—first of all that she had some sort of physical impairment that made walking challenging for her, and secondly that she had loving and proud parents who were patient and encouraging. They didn’t rush her along, but rather let her independently get where she was going. And they were there in the first place, when it might have been easier to just skip the game knowing how crowded it would be that night. For the next several minutes, this family had more of my attention than the game itself. I can’t really explain it, but I felt a sense of admiration and respect for them.
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.
it wasn’t long before we were hugging in the bathroom, staring at a stick on the counter with mixed feelings of excitement and disbelief. There’s something so fun about sharing something with only your husband for that first little bit. Like you’re both in on the best secret that you can’t wait to share, but feel a little sneaky having it just between the two of you.
throughout, and some discomfort and trouble sleeping at the end, but overall I’d say I had it pretty good. After the 20 week ultrasound, we were expecting a healthy baby boy, who even gave us a thumbs up that the tech caught on camera.
sleeping and we should wait to send out the news. We got a few blissful minutes of cuddling and oooohing and aaaahing over our tiny boy…just 5 pounds…much smaller than anyone expected. Then the nurses returned to our room to check his blood sugar and said it was low. They also pointed out the petechial rash covering his face, saying it could be the result of such a quick delivery, or could be something more. They seemed to whisk Gage away to the NICU to be looked at more closely and I was left feeling sad and lonely without my new baby to hold.
came in, he lifted the sheets and asked, “Oh, do you need to check me?” He reported that she looked totally freaked out and left the room as quickly as possible. I reminded him that not everyone would appreciate his odd sense of humor, but I adore him for it. He has a way of being the calm in the storm. He’s definitely my rock through all of our ups and downs.
taken in a vehicle! I remember yelling at Evan to slow down and he looked at me and said, “Hannah, I’m going 25 miles per hour.” I blame my crazy behavior on the fact that I hadn’t been in a car in almost a week and our precious cargo.