Today is the anniversary of Gavin’s long-awaited homecoming from the NICU. He spent 113 very long days in the hospital after birth and underwent countless procedures and several surgeries. He was an astounding 6 pounds the day we took him home and coming up on 4 months old. We had been scheduled to take him home several times in the weeks preceeding that day, but after several setbacks, he stayed a little longer. He finally came home 11 days after his due date on November 18th, 2004… just in time for the holidays!
Several things I’ll never forget about that day…
- Trying desperately to finish his room in such a hurry, because we weren’t expecting the call to come get him that day. We had been spending every second either at work or at the hospital visiting him, so the nursery still needed some stuff. After a trip to Target, we were set!
- Trying to look pretty for him on his homecoming. This sounds so silly now considering he had patches over both eyes from his last eye surgery and couldn’t see anything even if he didn’t have them. I just wanted everything to be perfect.
- Calling Marc to give him the news. He was so surprised! We met there after work and my parents drove one of our cars home.
- Taking the wires off…. finally! That was the most surreal thing! To be able to hold him with nothing else attached to him almost felt unnatural. I had never held him that way before. I kept wondering if he was okay because I had no monitor to tell me if he was breathing or if his heart was beating regularly. But, he looked so precious and tiny!
- Walking out of the NICU. After coming in every day to what felt almost like a prison, it just seemed way to easy to leave. His hall had been on lock down from an RSV scare in several rooms around him. We had to be ID’d, buzzed in, checked in, and scrubbed in to even see him, but on homecoming day, we just walked right out. We even said we felt like we were doing something wrong… like we were breaking some rule. We thought for sure they were going to come running down the halls after us and say, “Sorry, this has been a mistake. You have to leave him here!”
- How cold and windy it was in the parking garage. He had never been outside the hospital and I just wanted to keep him covered in his car seat the whole time. Every little thing made me think twice.
- Marc drove SOOO carefully and slowly all the way home. I was glad it was him and not me. We didn’t want him jostled at all. This kid had been through so much and was still so sensitive to his surroundings.
- Getting home! My brother and sister-in-law had decorated the house with banners and balloons and it made it such a celebration, even if it was a quiet, calm celebration. Gavin’s birth was less than a party and more of a traumatic, scary event, so it was nice to have a day that represented nothing but joy!
Raising a child with multiple disabilities can make for the most incredibly touching moments for a parent. Common things are no longer common. Milestones are promoted from sweet and proud moments to absolute miracles. We’re watching Gavin grow this year so much and witnessing him learning skills so unique to him. He is being introduced more and more to braille and will soon be getting to know his white cane.
Recently Gavin’s Vision Impairment Specialist sent home a couple pieces of paper with random braille characters that repeated for several lines each. At first I had no idea what I was looking at, but she had written on the page an explanation. It was Gavin “scribbling” on his new braille writer!!! The moment I realized this I was in tears. It was the sweetest piece of paper I had ever held in my hands. It was a symbol to me of what is to come. It was tangible hope that Gavin can some day be literate. The coolest part was her description. She said that he likes doing it… that he giggles while scribbling. He particularly likes the backspace button and the slider and says, “Next line please,” just as she has modeled for him. Now, if that doesn’t make you smile, I don’t know what will. I can’t wait to see what this boy of mine will do in his future. I am so very proud of him and so grateful to be his mother.
Well, it’s official. After years of hearing “autistic tendencies” from Gavin’s medical team, he has finally gotten the official label. My son is autistic. I remember researching this years ago thinking that he acted similar to the autistic children I knew, but wondering whether his other disabilities and their “symptoms” overlapped with those of autism. This ended up being the same question that his Neurologist and Pediatrician had. Through years of different types of therapies and different treatments for his Epilepsy, we have finally ruled out that scenario. After controlled Epilepsy and observation considering his total vision loss, it is apparent that Gavin has quite a significant set of other traits that line up perfectly with an autism diagnosis. His Neurologist gave me a quite lengthy diagnostic questionnaire and every question seemed to start with, “Does Gavin ever……?” followed by the response, “No, never,” or “Almost never.” It covered things like playful interaction with other children, speech delays, empathy, texture aversion, stereotypies (like his rocking back and forth), and what seemed like a million other things. Let me say that even though I had in some ways expected this eventually, I was still completely shocked. I felt sucker punched mainly because I had gone into this meeting expecting nothing more than a refill of his meds and a, “See you in 3 months.” I never expected what we got that day. It was a lot to process and then what followed was the scariest part. We started discussing medication to help him. These drugs are serious and he is so young. There have been lots of children they have helped, but it is a daunting decision to give a 5 year old such drugs.
Let me start by saying that I know that every parent gets unsolicited advice about how best to parent their children. I’ve been guilty of giving it before. But I have never seen so many strong opinions than I see about parenting a child with autism. It’s incredible how heated it can get. We still have not made a decision on whether we will be giving Gavin medication for this, but I assure you that we will research a ton, ask millions of questions, and more importantly, pray hard before coming to a conclusion. Once we make that decision, I will not be sharing that on here, nor will I discuss it in a hostile conversation. Who am I to say what will or won’t work for another family. I am of the opinion that autism can be caused or triggered by more than one thing. I believe Gavin’s is due to brain abnormalities that stem from his extreme prematurity, as does his Neurologist. He has ALWAYS been this way and we have tried natural remedies that have never shown any improvement. One treatment I know that we will for sure continue to pursue is a consistent, comprehensive therapy plan that involves a whole slew of professionals that work with Gavin one on one and in groups to help him relate to his world. I also know that we will love him no differently and continue to shower him with affection, attention, interaction, and structure. Our child did not change with this label. His treatment may or may not change, but he is still the same sweet, musical, quirky boy whom we love with our whole heart. God made him beautiful, special, with purpose and plan. While we try to wrap our heads around responsibly raising a child who is blind, epileptic, developmentally delayed, and autistic, we find our only comfort and hope in God’s love for us and our son. We know that God loves Gavin more than we ever could. We know that when we seek wisdom from Him, he is faithful to provide. So, that’s what we’re doing. We’re looking to God for answers.
Five years ago today….
I had no idea what it meant to be a mother…really.
I had dreams for my child that consisted of sports team practices, learning to drive a car, and falling in love. Some of those are the same and some are nonexistent now.
Five years ago today…
I believed in miracles in the past or in other people’s lives, but never had witnessed one in my own life.
I lived mostly for myself.
Five years ago today…
My ideas about how BIG God really is were sadly underestimated.
I was “blind” to a lot of the beauty around me that that has nothing to do with visuals.
Five years ago today…
I met the little guy who God would use to teach me about His love, compassion, mercy, and power.
And, I fell in love forever with Gavin.
Born July 29th. Just under 2 pounds. 13 inches long. Unlimited potential.
HAPPY 5th BIRTHDAY, GAVIN!
I’m a very positive person. I think I am, anyway. I enjoy times when everyone is hopeful and happy. One of the things I strive for as a wife/mother is to create a certain vibe in my home for my family. I want my son to come home from school to a happy, fun-loving, nurturing home. I want my husband to want to come home as soon as he can because he knows it will be a place of relaxation, joy, and fulfillment for him. This place should be their haven. This is the reason I cook, clean, launder, decorate, and pay careful attention to my mood. Honestly, I’m far from perfect and fail miserably at creating that type of environment way too often, but it is my goal nonetheless.
The problem is that this home, this haven, can become a crutch in the summer. Let me explain. Anyone reading this knows about Gavin’s disabilities and his general dislike and uneasiness with new experiences. He’s a creature of habit and really craves routine. When he was a year old he wouldn’t even hold a toy in his hands. He’s always had this apprehension about exploring new things. Getting Gavin out into the real world has always been the most beneficial thing for him as well as the hardest thing for both him and me. He’s much better at a number of things than he used to be, but it is still a challenge in so many ways. I had the opportunity to watch my niece last week and it was so much fun. She is an amazing little girl!! We went all over the place. We shopped, ate, played, and talked back and forth. It was so much fun and so relaxed. She actually enjoyed a day out with me. A day out with Gavin is all about resistance. It’s a constant tug of war with him to try and force experiences on him so he can get to know the world around him. Preparation is key, but a lot of times that still does not put him at ease. I want him to be able to go out and do things without only being physically and emotionally comfortable when he has a music player up to his ear.
Before you think I’m insensitive… I don’t compare my experience with Gavin to the one with my niece to make him sound difficult. He cannot help these challenges he has. He works so hard all day to understand things and communicate. I know things are way more difficult for him. I’m not wishing my son were different. I’m wishing I were more brave. More tolerant. More patient. More creative. More Positive.
With school out and filling his days with stimulating (but, not over-stimulating) activities completely left up to me, I’m already feeling a little overwhelmed. It’s easy to stay in the house a lot and let him listen to all kinds of music. I obviously don’t want my kid inside all summer learning and experiencing nothing new, but everyday activities for other kids are no fun for him. He has forgotten about the pool and all the work we did last summer to get him comfortable in the water. So, we start again from scratch with kicking and screaming and fear. We’ll go every day and do as much as he can take even if it is just putting his toes in. There is no playing in the yard right now. I just got him to tolerate walking through the grass at all, but it’s not playtime for him. We will do this, but it is more like therapy or work for him because he is uncomfortable and uninterested. Museums, the zoo, and other regular kid activities are learning opportunities, but hardly fun for him. We will do A LOT of swinging because he does truly LOVE that.
I know I’m complaining, but I guess I’m just a little heartbroken today and feeling rather inadequate. It’s a marathon, not a sprint…. this parenting a child with multiple disabilities thing. It can be extremely trying sometimes and I can get a little less positive than I like to be. My home is not a haven right now, it’s a crutch. I’ve got to make myself brave the world with my super hesitant child. I’ve got to bring him to his experiences because they will not come to him. I have to give him concepts based on concrete examples and help him expand his understanding of this world around him. If I don’t, he will never know what things are. They say that 80-90% of what we learn, we learn visually. Well, Gavin can’t learn that way, so I have to teach him by telling him things and letting him have hands-on experiences.
I’m praying that I can stay positive. That I can leave behind the grief and see the hope that I know is there. I’m praying that I will suck it up for my child and do the hard stuff every day, that I’ll stay focused on the result, not the stress to get there. I also pray for Gavin to have more peace. All these new experiences cause major anxiety in his little body. I pray that he is filled with curiosity instead. I pray that I can create a positive environment not only in my home, but in my heart. I know he will sense this and maybe it will rub off. Pray for these things with me if you will.
One of the last things Gavin’s class did this year was go to the zoo on a field trip. We worked on as much as we could with Gavin to give him concepts about what was going on. He couldn’t touch the animals, but we talked about the rope fence, the wooden bridges under his feet, the smells, the hills we went up and down, the thick and thin bamboo, and hearing the airplanes over his head. We tried to give him as much as possible from the experience. It was a lot less exciting than for most simply because he couldn’t see the cool animals. I just wish that would have had more than one animal in the petting zoo.!
I really wish Gavin could have seen these. He did enjoy making the snake sound, though, “SSSSSSSSSSSSSSSSSSS!”
We talked about them hugging and wrestling each other and the noises they made.
The only thing at the petting zoo was a goat. That’s it!! Bummer.
We heard noises from two animals only this tome. Hopefully, they’ll be louder next time. Gavin kept saying, “I want on the bus!” He did do really well, though and we plan to take him again this summer.