“Easy” -the word that our church has been doing a sermon on the last couple of Sundays, and how relevant it has been in my life. A quote shared today by F. Scott Fitzgerald stuck with me, partially because it’s terribly written but also because of the truth it holds, “Nothing any good isn’t hard.” Raising a child with extra needs is far from easy, but it is so very good…. Let me catch up up on how Hadlee is doing.
3 months ago Hadlee had surgery to receive her cochlear implants! We were obviously nervous for the day because surgery, especially for a baby, is always frightening. The night before her surgery our parents came over to pray over us. It was a night full of love and encouragement, and at the end of the night our sweet Hadlee signed her first word, “kitty.” It was something so simple, but it felt like an immediate answer to prayer. Hadlee was going to do amazing, That one word that she will continue to sign over and over filled me with peace.
The surgery went beautifully and we were able to bring our sweet girl home the same day. The recovery time seemed like no time at all. By the next day Hadlee was just about back to herself, wanting to play and crawl around as usual.
Unfortunately 3 days later we were back at CHOP because Hadlee came down with a fever that wouldn’t go down even with medicine. The doctors determined that she had an infection around her left incision and also had influenza. She was put on intravenous fluids and antibiotics for the entire stay and she was not allowed to leave the little room for fear she would pass along her sickness. It was an awful and tiring four days, but during that stay we saw families and children who had been at the hospital for much longer and had no idea when they would be able to leave. As terrible and weary as we felt, there are so many families with worse scenarios. We left happy to bring our baby home and with a better perspective and greater appreciation for our situation.
The first month after the surgery was a wonderful reprieve for our family. Hadlee couldn’t wear hearing aids anymore and we had to wait for her incisions to heal before she could get the processors (outer part of the cochlears) turned on. So during that month I didn’t have to do her listening therapies daily, I didn’t need to be making sure that she was getting constant sound stimulation. However, during that month, Hadlee’s language grew by leaps and bounds! No she wasn’t speaking, but she started signing EVERYTHING! It was incredible. We have been signing with her since she was 3 months old but she would rarely sign back, instead she preferred to use her voice to get her point across. She always understood what we were signing, but it wasn’t until she had absolutely no hearing that she started signing back. The fact that my sweet girl understood language and how to communicate with me was just incredible!
In January the big day arrived for Hadlee to get her new “ears” turned on, we were so excited! I was trying my best to not expect a reaction from Hadlee because the audiologists turn up the sound very slowly so that the child will bond with the implants. Imagine the fear of hearing something for the first time, if the sound is too loud it could scar a child for a long time and make them not want to wear their processors. We were told not to expect a reaction because she would be on one of the lowest volumes- but she did react! It scared her for a few seconds but within a minute she was playing with the processors on and didn’t think anything of it. I was so proud of her. Here is a video of the moment Hadlee first heard. It took her a few days to really warm up to her new ears. If you remember, “hearing” with cochlear implants is completely different than normal hearing or hearing with aids. The sound is mechanical, to those who hear normally voices would sound like a robot. But because she had very little to no hearing, this is all she will ever know and will be her normal hearing. (Those who are very curious can look up videos on YouTube that show what people with cochlear implants hear.) So even though she has heard a bit before with the use of hearing aids, the sound with the implants was completely new and something she would have to get used to. By the end of the first week Hadlee was pointing to her processors in the morning for me to put them on, boy does this girl love hearing!
I think most people see videos of babies hearing for the first time and say “what a miracle that they can hear!” And it is, but there is so much more work that goes into it, especially for kids with cochlear implants. Implants aren’t a magical button that you press and now your child hears perfectly and understands everything, it’s more like a tool that can be used to teach a child how to hear, how to understand and how to speak. It’s not perfect and it takes more work than I could have imagined.
Hadlee has now been hearing for two months and they have been some very difficult months. In January when she got her processors, she was considered a new born as far as hearing goes, so she was behind by over a year to her hearing peers. This means that it is crucial that we have her processors on whenever she is awake and we do therapies and sound stimulation with her all day. We are basically teaching her how to hear, something that comes naturally for the majority of the population.
A typical day with my sweet girl consists of waking up before the sun (she is an early riser) we go downstairs to put her ears on and I start making her favorite breakfast (2 eggs, scrambled.) But I don’t just make them, I’m constantly talking, narrating every thing that I do, *crack an egg* “Crack! Hadlee did you hear that? Egg goes crack!” *stir the eggs* “Hadlee watch, round round round round round!” *cat comes down the stairs* “Listen! Did you hear Luna’s bell??” And so goes breakfast, talking and accentuating certain words and vowels, listening to the sounds around me so I can point them out to Hadlee. I point out when the heat comes on because it’s the first time she’s heard it and didn’t know what it was. I point out a car horn going off so she knows what made the sound. Then we go and play. Playing with Hadlee isn’t just sitting watching what she does, it’s being ‘on’ constantly. It’s playing with blocks and saying “up up up!” It’s making up a jingle for feeding her baby that has good vowels and consonants “Yum yum baby, Pat! Pat! Pat!” And her favorite activity, reading books where I both sign and speak. She has actually started signing to herself while reading books! Here is a quick video.
I think for many parents all of this might come a little easier or naturally. I myself have never been very animated or prone to talking for long periods of time. It’s made even more difficult when you are with a baby who can’t quite hold a conversation. So with giving Hadlee the constant attention and sound stimulation she not only needs but craves coupled with dealing with what all babies her age go through (teething, colds, learning to walk,) it’s safe to say she keeps me busy and in bed by 8pm. It’s God’s strength alone that helps me wake up and start it all over again the next day.
All of this work, the sessions we have three times a week with our speech therapists and the many tears I’ve cried after an exhausting day have not been for naught. Hadlee is saying more consonant and vowel sounds than she ever has before! After hearing for only 8 weeks she started saying “uh oh,” the next week she said “Mama.” Hadlee is living in a whole new world! As tiresome as pointing out sounds can get, I’m still in awe that she hears them. A simple walk around the block has her head spinning around spotting the chirping birds and rustling leaves. It’s a beautiful thing to see.
A couple of weeks ago Hadlee had her 1 year evaluation meeting with early intervention (I still can’t believe it’s been over a year of therapies!) they tested her cognitive level, motor skills, speech, the normal baby stuff. At 14 months she was well above average for her fine motor skills, testing at 18 month level. Her cognitive tests showed her at the level of a 22 month old (!) But the most exciting part was that she would be well above average with language if they counted sign! She signs 24 words and understands countless more. I love her zest for language. She has always been great at communicating what she wants, but I love how now she’s really grasping what language is and how to use it.
Hadlee is 15 months old now and is making new sounds and signing new words almost every day! She loves listening to music and will crawl over to the record player to turn it on and start dancing; here is a must-see video of it! She is taking many steps by herself but is still a bit shaky. Raising this girl has been the biggest blessing. This wasn’t what we were dreaming parenthood would be like, but in a lot of ways it’s better. Everything she accomplishes is proof of her stubborn yet sweet nature, qualities that God knew she will need her whole life. She has been hearing as long as a 2-month old and in that time she has come so far, I can’t wait to see how this special girl impacts our world even further.