We LOVE this precious, adorable little guy!!!!!
Helping Daddy fix the truck!How much more normal can you get - Matthew has 2 year old tantrums too:)
My first red envelopes for Chinese New Year from Mom-Mom!!!
THON 2010!!!
Looking back over the past few months of my life, I tend to think about a lot of the things that people may have said to me….and specifically I recall people saying to me, “I’m sure you just want to feel normal again.” So, I was thinking about it, and I have decided that there is no such thing as “normal”. Even if you read the definition of “normal”, what really constitutes normal and who determines what is normal vs. abnormal.
With that said, I want to acknowledge that as chaotic, crazy, and uncertain life has been for us – I must admit that yes, we have adapted and continue to adapt almost daily to our “new normal.” Nothing is boring in our household for sure, but honestly, I don’t know how I’d react to life any differently at this point. When I think about life before Matthew, I cannot even remember clearly what it was like! This adventure into parenthood surely is a roller coaster like I have mentioned before – and the ride with Matthew is surely like no other I have ever been on!!!
So, what’s been going on in our “normal” life since I have posted last? Well, we went off to THON and what a blast it was to have all of my past and current patients and families meet Matthew!!! It was great to be back in State College, Penn State was such a fun part of my life! We weren’t sure how Matthew was going to do with all of the stimulation of the thousands of people at Bryce Jordan Center – and we quickly learned Friday night that he could not wear his sound processor as that was traumatizing. Once we got rid of that, he was down on the floor of the Bryce Jordan Center learning how to use a water gun for the first time, playing with the dancers that were standing on their feet for 46 hours, riding on our shoulders, and just enjoying himself. We didn’t spend as much time as we “normally” would at THON as the stimulation did trigger Matthew’s movements (you know, the ones that look like seizures) – but that was OK because we went downtown and had lunch, did some shopping, and then spent the afternoon at the pool with Matthew’s favorite guy friends in the world, Josh and Cole. Oh, and course his Daddy too! They were in the pool for over 2 ½ hours, and one of my patients and her family came and swam too so that was fun to see little Alison swimming and not in the hospital getting chemo! It took Matthew a while to come down from the stimulation Saturday evening, and he was pretty exhausted on Sunday and actually fell asleep in my arms at THON. We carried him around a lot, and he was full of snuggles. After an extremely emotional family hour with the families I care for – we headed back home stepping back into “reality.”
The week after THON was crazy with heading back to work, having Matthew’s teacher of the deaf, AND we headed to CHOP for Matthew’s hearing evaluation and new mapping of his cochlear implant. I was SO excited to go back because Chris and I really felt that Matthew was starting to show consistent signs of hearing. However, my excitement was rather crushed at the appt. as the staff there felt he wasn’t demonstrating measurable “hearing signs.” The speech therapist told us Matthew should be alerting to SOMETHING, and she couldn’t get anything in her session with him. She told me if he didn’t start alerting more in 3 months, than she would be “concerned.”
So, in my “now normal” Mom of a child who went to doctor’s appts like every week – I kept it all together for a bit. My Mom was with me, and we didn’t even have to talk about the disappointment that I felt, as well as what she did. I made the phone call to Chris in a stoic manner just telling him we needed to keep going with what we are doing, keep the therapy up, and keep trucking along. We had driven to my Mom’s after work Tuesday evening, so I got everything packed back up and in the car, and off Matthew and I went to the good old turnpike heading back home…..Matthew fell sound asleep in the car, and I glanced back at him through the little car mirror and that’s when the tears started. My heart hurt for him, it hurt for me, and it hurt for all children who are going through tough times. I flipped on the radio and the Miley Cyrus song, “The Climb” came on right at that moment. It was as if the words just went right through me:
The struggles I’m facing, the chances I’m taking
Sometimes might knock me down,But No I’m not breaking
I may not know it But these are the moments that I’m gonna remember most, yeah
Just gotta keep going And I, I got to be strong
Just keep on pushing on.
Cause there’s always gonna be another mountain
I’m always gonna want to make it move
Always gonna be an uphill battle Sometimes I’m gonna have to lose
Ain’t about how fast I get there
It’s about what’s waiting on the other side
It’s the climb, yeah!!!
But, after I heard that song and stopped crying and grieving over about what Matthew DIDN’T do, I refocused on all the things that Matthew DOES do!!! I was thinking about his giggle and love for life, and he continues to melt hearts everywhere he goes! And, that night after we got home from CHOP – he climbed up on the couch between Chris and I and he put his head on me and started to cry. When I picked him up, his eyes were so glassy and he was so hot! I took his temperature and sure enough, he had his very first high fever since we were in China a year ago. You know, I have been to a zillion specialists with Matthew, he’s been through anesthesia 8 times in a year, 3 surgeries, had croup and one ear infection……….and this fever that went to 103 for 48 hours scared me so much! And, mind you that I am a pediatric oncology nurse that sees tons of fevers! Poor Matthew was so pitiful and then he started with the cough and congestion. Since I had been off on Wednesday for CHOP and my clinic is on Thursday’s – I couldn’t take off to be with him. Chris took off and did a GREAT job with taking Matthew to his very first pediatrician appt. all by himself! Poor Chris though, learned quickly why a 15 minute appt. actually takes 3-4 hours with all of the waiting involved! I was proud of him though, but I must admit I did chuckle a few times when he was calling me so many times :)
So, now in our hearts we wonder if Matthew didn’t show responses at CHOP because he wasn’t feeling well! BECAUSE, since he has gotten better – we feel like we are getting head turns and responses that we haven’t seen since his activation in November. We also got a new remote as our other one was malfunctioning so who knows what was going on??? We do therapy with him every waking moment when we interact and play with him AND after being on a waiting list for 3 month, he FINALLY has been evaluated by a private speech therapist and he has started speech therapy twice a week on top of his teacher of the deaf AND he will start his new preschool soon.
Chris and I did manage to pick up Matthew’s germs, I guess our immune systems couldn’t hack it this time J I also underwent another dilatation with anesthesia last Friday, and am so very thankful to say that it went very well from the GI perspective. I have my next one on March 16th, and if it goes well I may be able to space them out some which will be awesome. (Who really can function WELL feeling like they have a GI bug all the time? and I have to admit doing a bowel prep pretty much every day sucks….sorry for the bluntness, but it really does!!!) My Mom came and went along with me to this last procedure which was so nice. The next plan if the dilatations don’t continue to work would possibly be to “staple” piece of the colon out and resuture it together…sounds fun, huh? I’m praying for just dilations, seriously! The anesthesia this time kicked my butt royally and I wonder if it was because I was so run down with a cold and the constant GI stuff. It took me most of the week-end to feel “normal” again. And, these procedures better get spaced out because I have no more veins left….they had to stick me FOUR times for an IV this time and that gets old!
My Mom wanted Chris and I to get out some time together this week-end while her and my brother were here which was nice. The only time we have went out shopping alone without Matthew was on Black Friday and we went to one wedding so it’s been a while J Our goal was to shop for a new bed for Matthew, a “big” bed. We are still having sleep issues with him with the neurological episodes at night mixed in with some separation anxiety. So, Chris and I haven’t been in the same bed together for months now and it’s getting old!!! We thought if Matthew had a BIG bed, we could lie there with him in his room and hopefully re-transition him back there. We ordered fun car and truck bedding which he LOVES, and we are looking forward to the bed coming this week-end.
On Monday, I took Matthew to his new preschool where him and I observed for an hour. Imagine me being in the car all excited to take him in with thoughts of total excitement for the future and him FINALLY being taught by teachers who are trained to teach deaf and hearing impaired children. Matthew was all excited when he saw the playground and went in the building without any fight. Once we got in the classroom, he became very upset and I lost it….you are probably thinking, seriously Melissa, what is wrong with you? What makes this any different? So many things were going through my mind….Matthew was upset about being challenged in a new place, I was watching amazing 3 year olds who were signing full sentences and I was so in awe of them……….but, for the very first time in a year, I thought of my Matthew as “not normal.” My grieving as a Mom was very real….and my heart hurt. Now, don’t get me wrong. I am not feeling sorry for myself or anything like that. I think any parent of a child with any sort of “special need” or disability probably grieves for their child, and grieves about the loss of a “normal” child.
But, then I walked onto the playground – and was snapped back into my reality with my perfect, normal child who joined the rest of the children who were loving the beautiful, sunny day! And, if anything – these children were inspiring to me and had more love in them than one could imagine. Their “special needs” were of all levels, and one of the little boys was crawling around the playground on his belly because he couldn’t sit or walk. But, you know what? He was happy and he had adapted to his “normal” as all of the other children have. So, my life and my Matthew might not be one’s definition of normal, and there are people who always are going to say “I’m sorry” when they see that Matthew is deaf and has many other medical issues…..but you know what? He is MY child, and there is nothing I love more than feeling his little arms tightly wound around my neck hugging me so tight, the way he signs please and looks up at me with those huge brown eyes when he wants something, the way he adores playing peek a boo, his little routine at bathtime when he runs around the upstairs naked wanting us to chase him with that ornery little face and giggle, the shrieks and excitement he shows when Chris or I come home, how his little finger points at his favorite parts of books….oh, I could go on. So, yep, my normal is wonderful – never dull but nonetheless, more than I ever imagined. And, by the way, we are working on trying to figure out where Matthew's brother or sister might be......anyone who might have this info, let us know :)
With that said, I want to acknowledge that as chaotic, crazy, and uncertain life has been for us – I must admit that yes, we have adapted and continue to adapt almost daily to our “new normal.” Nothing is boring in our household for sure, but honestly, I don’t know how I’d react to life any differently at this point. When I think about life before Matthew, I cannot even remember clearly what it was like! This adventure into parenthood surely is a roller coaster like I have mentioned before – and the ride with Matthew is surely like no other I have ever been on!!!
So, what’s been going on in our “normal” life since I have posted last? Well, we went off to THON and what a blast it was to have all of my past and current patients and families meet Matthew!!! It was great to be back in State College, Penn State was such a fun part of my life! We weren’t sure how Matthew was going to do with all of the stimulation of the thousands of people at Bryce Jordan Center – and we quickly learned Friday night that he could not wear his sound processor as that was traumatizing. Once we got rid of that, he was down on the floor of the Bryce Jordan Center learning how to use a water gun for the first time, playing with the dancers that were standing on their feet for 46 hours, riding on our shoulders, and just enjoying himself. We didn’t spend as much time as we “normally” would at THON as the stimulation did trigger Matthew’s movements (you know, the ones that look like seizures) – but that was OK because we went downtown and had lunch, did some shopping, and then spent the afternoon at the pool with Matthew’s favorite guy friends in the world, Josh and Cole. Oh, and course his Daddy too! They were in the pool for over 2 ½ hours, and one of my patients and her family came and swam too so that was fun to see little Alison swimming and not in the hospital getting chemo! It took Matthew a while to come down from the stimulation Saturday evening, and he was pretty exhausted on Sunday and actually fell asleep in my arms at THON. We carried him around a lot, and he was full of snuggles. After an extremely emotional family hour with the families I care for – we headed back home stepping back into “reality.”
The week after THON was crazy with heading back to work, having Matthew’s teacher of the deaf, AND we headed to CHOP for Matthew’s hearing evaluation and new mapping of his cochlear implant. I was SO excited to go back because Chris and I really felt that Matthew was starting to show consistent signs of hearing. However, my excitement was rather crushed at the appt. as the staff there felt he wasn’t demonstrating measurable “hearing signs.” The speech therapist told us Matthew should be alerting to SOMETHING, and she couldn’t get anything in her session with him. She told me if he didn’t start alerting more in 3 months, than she would be “concerned.”
So, in my “now normal” Mom of a child who went to doctor’s appts like every week – I kept it all together for a bit. My Mom was with me, and we didn’t even have to talk about the disappointment that I felt, as well as what she did. I made the phone call to Chris in a stoic manner just telling him we needed to keep going with what we are doing, keep the therapy up, and keep trucking along. We had driven to my Mom’s after work Tuesday evening, so I got everything packed back up and in the car, and off Matthew and I went to the good old turnpike heading back home…..Matthew fell sound asleep in the car, and I glanced back at him through the little car mirror and that’s when the tears started. My heart hurt for him, it hurt for me, and it hurt for all children who are going through tough times. I flipped on the radio and the Miley Cyrus song, “The Climb” came on right at that moment. It was as if the words just went right through me:
The struggles I’m facing, the chances I’m taking
Sometimes might knock me down,But No I’m not breaking
I may not know it But these are the moments that I’m gonna remember most, yeah
Just gotta keep going And I, I got to be strong
Just keep on pushing on.
Cause there’s always gonna be another mountain
I’m always gonna want to make it move
Always gonna be an uphill battle Sometimes I’m gonna have to lose
Ain’t about how fast I get there
It’s about what’s waiting on the other side
It’s the climb, yeah!!!
But, after I heard that song and stopped crying and grieving over about what Matthew DIDN’T do, I refocused on all the things that Matthew DOES do!!! I was thinking about his giggle and love for life, and he continues to melt hearts everywhere he goes! And, that night after we got home from CHOP – he climbed up on the couch between Chris and I and he put his head on me and started to cry. When I picked him up, his eyes were so glassy and he was so hot! I took his temperature and sure enough, he had his very first high fever since we were in China a year ago. You know, I have been to a zillion specialists with Matthew, he’s been through anesthesia 8 times in a year, 3 surgeries, had croup and one ear infection……….and this fever that went to 103 for 48 hours scared me so much! And, mind you that I am a pediatric oncology nurse that sees tons of fevers! Poor Matthew was so pitiful and then he started with the cough and congestion. Since I had been off on Wednesday for CHOP and my clinic is on Thursday’s – I couldn’t take off to be with him. Chris took off and did a GREAT job with taking Matthew to his very first pediatrician appt. all by himself! Poor Chris though, learned quickly why a 15 minute appt. actually takes 3-4 hours with all of the waiting involved! I was proud of him though, but I must admit I did chuckle a few times when he was calling me so many times :)
So, now in our hearts we wonder if Matthew didn’t show responses at CHOP because he wasn’t feeling well! BECAUSE, since he has gotten better – we feel like we are getting head turns and responses that we haven’t seen since his activation in November. We also got a new remote as our other one was malfunctioning so who knows what was going on??? We do therapy with him every waking moment when we interact and play with him AND after being on a waiting list for 3 month, he FINALLY has been evaluated by a private speech therapist and he has started speech therapy twice a week on top of his teacher of the deaf AND he will start his new preschool soon.
Chris and I did manage to pick up Matthew’s germs, I guess our immune systems couldn’t hack it this time J I also underwent another dilatation with anesthesia last Friday, and am so very thankful to say that it went very well from the GI perspective. I have my next one on March 16th, and if it goes well I may be able to space them out some which will be awesome. (Who really can function WELL feeling like they have a GI bug all the time? and I have to admit doing a bowel prep pretty much every day sucks….sorry for the bluntness, but it really does!!!) My Mom came and went along with me to this last procedure which was so nice. The next plan if the dilatations don’t continue to work would possibly be to “staple” piece of the colon out and resuture it together…sounds fun, huh? I’m praying for just dilations, seriously! The anesthesia this time kicked my butt royally and I wonder if it was because I was so run down with a cold and the constant GI stuff. It took me most of the week-end to feel “normal” again. And, these procedures better get spaced out because I have no more veins left….they had to stick me FOUR times for an IV this time and that gets old!
My Mom wanted Chris and I to get out some time together this week-end while her and my brother were here which was nice. The only time we have went out shopping alone without Matthew was on Black Friday and we went to one wedding so it’s been a while J Our goal was to shop for a new bed for Matthew, a “big” bed. We are still having sleep issues with him with the neurological episodes at night mixed in with some separation anxiety. So, Chris and I haven’t been in the same bed together for months now and it’s getting old!!! We thought if Matthew had a BIG bed, we could lie there with him in his room and hopefully re-transition him back there. We ordered fun car and truck bedding which he LOVES, and we are looking forward to the bed coming this week-end.
On Monday, I took Matthew to his new preschool where him and I observed for an hour. Imagine me being in the car all excited to take him in with thoughts of total excitement for the future and him FINALLY being taught by teachers who are trained to teach deaf and hearing impaired children. Matthew was all excited when he saw the playground and went in the building without any fight. Once we got in the classroom, he became very upset and I lost it….you are probably thinking, seriously Melissa, what is wrong with you? What makes this any different? So many things were going through my mind….Matthew was upset about being challenged in a new place, I was watching amazing 3 year olds who were signing full sentences and I was so in awe of them……….but, for the very first time in a year, I thought of my Matthew as “not normal.” My grieving as a Mom was very real….and my heart hurt. Now, don’t get me wrong. I am not feeling sorry for myself or anything like that. I think any parent of a child with any sort of “special need” or disability probably grieves for their child, and grieves about the loss of a “normal” child.
But, then I walked onto the playground – and was snapped back into my reality with my perfect, normal child who joined the rest of the children who were loving the beautiful, sunny day! And, if anything – these children were inspiring to me and had more love in them than one could imagine. Their “special needs” were of all levels, and one of the little boys was crawling around the playground on his belly because he couldn’t sit or walk. But, you know what? He was happy and he had adapted to his “normal” as all of the other children have. So, my life and my Matthew might not be one’s definition of normal, and there are people who always are going to say “I’m sorry” when they see that Matthew is deaf and has many other medical issues…..but you know what? He is MY child, and there is nothing I love more than feeling his little arms tightly wound around my neck hugging me so tight, the way he signs please and looks up at me with those huge brown eyes when he wants something, the way he adores playing peek a boo, his little routine at bathtime when he runs around the upstairs naked wanting us to chase him with that ornery little face and giggle, the shrieks and excitement he shows when Chris or I come home, how his little finger points at his favorite parts of books….oh, I could go on. So, yep, my normal is wonderful – never dull but nonetheless, more than I ever imagined. And, by the way, we are working on trying to figure out where Matthew's brother or sister might be......anyone who might have this info, let us know :)
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7 comments:
You know one of the things I love about you most? Your amazing ability to look at a situation that many others would say stinks and find the good. God has blessed you with the ability to do that and I think that you provide a ray of hope for others!
You are going to be so happy later in life that you've written all this down, Melissa. When I got to "But he's MY child", the tears started flowing. The love, the brown eyes, the baby steps they take- it's all wonderful, even if they're "behind" or "hard of hearing", or 'scarred". They are OURS!! :) And they are PERFECTLY made by HIM!
Yep. I'm so glad you feel your normal is perfect for you! We feel the same way about having a child with heart defects. People do say "I'm sorry", but really there's nothing to be sorry about! God is good, all the time. So happy to hear the happiness in your writing, Melissa! Love, Petrie
Honey, you can't gauge normal with a two-year-old!!! lol It's just not possible. I have one, too and they meltdown on a whim for no apparent reason. Ha! That IS normal!!
Don't be too hard on yourself either---it's OK for you to meltdown once in a while, too!
As far as his hearing...no one knows your child like YOU do! When Ashlynn was first diagnosed, I had her at the pediatrician at least 5 times and they told me I was a 'paranoid first-time mother'! I KNEW something was wrong with her. Because I'm her MOTHER. Same with Matthew...if you and Chris see progress, it's there!! Trust yourselves!
Wendi
Ahhh...the love of a Mother for the child she has been given! I love to hear your heart through your posts! And I admire your courage in the face of many obstacles in this path called LIFE.
As for "normal", let me know when you find it!
I miss you at Clinic even though we are in good hands - you are simply a fantastic nurse!
HI Melissa
He looks like he is doing so well. He is thriving off the love of a family. He has changed so much this past year!
Melissa--regardless of how "awful you feel" you always look so beautiful! Must be that precious little one glowing all over you!
And Matthew gets more adorable everytime I see an update--I can't believe it!
As one that never does anything "normal"--I actually many time intentinoally do not do the NORM--I agree completely--your life as it is is YOUR NORMAL! And it's precious in all it's up and downs.
Keep on doin' what you're doin'!
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