Lately there has been a lot of talk going on in blogger world about premature babies being called fetuses. As the mother of a premature child this is heartbreaking to think that some doctors still consider a living, breathing child a fetus. However in the medical world there is ALWAYS going to be controversy over any topic that is to be discussed. Many preemie moms have blogged about there disgust and their anger with premature babies being called fetuses. On one blog I had made a comment that the anger that they feel towards this is probably like the anger that I feel towards these same moms worrying over the possibility of their child being disabled later on in life.
It was after this comment that I received quite a few emails from preemie moms telling me that they never thought of how their constant worrying felt to a mother of a child with special needs. In many blogs that I read I find that so many people are against the idea of having a child with a disability. There is also always the discussion about the doctors telling parents that they can discontinue care because there is a good possibility that their baby will be disabled. I have also read a blog where the parents chose to discontinue care on two of their preemies because they had grade three and four brain bleeds. Their exact words were “we chose to discontinue treatment to put them out of misery.” I have also read a parents words stating that “we chose to discontinue care to end their suffering.” WOW how can a parent know how the baby is feeling. How can a parent discontinue care because there is a chance their baby will be disabled? I say chance because there is always the possibility that the doctor ISN’T going to be right. I also know two former preemie boys that had significant brain bleeds and are pretty much the typical child.
When I read things like this it breaks my heart. It is hard for me to feel for these parents when they are the ones that chose to stop care. They are the ones that decided that since there is a chance their child would be disabled they would rather not deal with it. They would rather not put them through the pain and suffering. It breaks my heart the most because they don’t know what they are missing out on! A is one of the happiest kids that I know. And I am not just saying that because he is my son but because it is the truth.
It also breaks my heart because a child is a child and it shouldn’t matter what is wrong with them. It shouldn’t matter if they aren’t “perfect”. That is why we as parents are supposed to love unconditionally. Choosing to end a life because of the possibility of a disability is not unconditional love. Unconditional love is standing behind your child through thick and thin and loving them no matter what.
Now, not to sounds heartless, but I totally understand that some parents have to make this hard decision because of the significance of the brain bleeds. I understand that some preemies are very sick and have absolutely no chance at living. I feel for the parents who are told that their son or daughter has absolutely no chance because it is something that I cannot even imagine dealing with.
But to make the decision based of the fact that there is a “chance” is just not right. I have also been told that I must have worried while A was in the NICU about the future he would have. I was thinking of this last night. And actually, there wasn’t ONE time that I worried that A might be disabled. I think the only worry that I ever had was that he wasn’t going to make it out of the NICU. Spending 227 days in the NICU and having date after date given to you about when he can go home by and not making those dates was heartbreaking.
We had one meeting with one of A’s amazing doctors near the beginning and we were told that there was a good chance that A would be disabled. A good chance that he could have vision and hearing issues. He was a VERY, VERY sick little boy and there wasn’t much hope. We had the choice to continue with treatment or to end treatment. There wasn’t a chance that J and I were making that decision. We wanted everything done for A possible. J and I thought no different after that meeting and knew that whatever was to be would be. No matter what was wrong with A we wanted to have him in our life. It didn’t matter to us what was wrong with him in the future. We lived for each day in the NICU and we still continue to do the same thing. You can’t always live life looking ahead. The best times are when you just enjoy each moment of each day.
Now, I do know that for parents of preemies it is normal to worry about their next growth and development check up. I know that there are many that worry their child is behind. And when I read constant worries that their child may have CP or some other issue it hurts. I realize that parents want to have “normal” children and I realize that dealing with disabilities can be scary and difficult. At the same time though, it doesn’t change how you feel about your child. It doesn’t change the love you feel and the joy that they bring you. And honestly I feel that we as parents of disabled children are able to enjoy more than the average parent. I say this because everything that our children do is amazing. We don’t take one little thing for granted. Parents expect their children to do things as they age and they expect this to be on time. Disabled children however do not have a chart to go by. A rolled from back to tummy for the first time a couple of weeks ago. He is 26 months old. I was ecstatic! To the normal parent this is late and is just expected of their child.
A ate three teaspoons of baby food three weeks ago. This was the first time in six months that he took ANY food by mouth. I had the video camera out, I was taking pictures, I was phoning everyone, I was overjoyed. Once again parents don’t realize how great it is to have a child that eats normally. It is expected.
I just hope that I can help at least one parent realize how good they have it. I hope that the next time their baby won’t take a full bottle that they are thankful they are drinking from a bottle and not through a tube into the intestines. I hope that the next time their child does something new they are excited and enjoy the moment. I hope that the next time their baby wakes up twice in one night they can hold them and love them and not be upset that they didn’t sleep through the night.
I also hope that any new preemie moms can learn to enjoy each and every moment that they have with their precious tiny babies. You never know what life is going to throw your way and if you worry too much about later on, you might not even have later on to worry about. Sit with them, read to them, sing to them, talk to them, love them and do everything that you can. Be their biggest advocate and fight with them.
I have so many people ask me “what is wrong with him?” Nothing is wrong with him. I have the people who are told that he has CP and they say “awww the poor thing.” No, not the poor thing. He is happy. He does not know any different than the life that he lives. (And as you CP mommies would say “Poor baby my ass!”)
A has taught me so much in life. He has taught many others in life a lot as well. When I have the chance I try to educate people. I try to help people realize that the disabled aren’t any different than you or I. Sure they may not walk, they may not talk, but they do have feelings and I just wish that the fear of disabled people was one thing I could change. So many people are afraid because it isn’t something that they see all of the time.
I used to find myself explaining the whole story of his life to anyone that asked what is wrong with him. However as time has gone on I have found that I almost forget that he has a feeding tube when we are out and people are staring. I almost find myself asking what they are looking at. I absolutely hate how people stare at him as we walk by. Do they stare at every single child that they see? No, but A is different so they do. Sometimes I wish I had a sign telling people to quit being so rude and just continue walking.
I am very proud of A and love him the way that he is. I know as he gets older things are only going to get harder because things will become more obvious (the wheelchair) and he is going to grow up. I want him to live a normal life. I want to see him treated the same way that he would be if he wasn’t disabled.
No one knows what the future holds. But there is one thing that I do know, and that is I am so happy that I never chose to discontinue care because I would be missing out on the best part of life. A.
And besides, who wouldn’t want to watch this precious boy sleep?
A HUGE happy birthday to Alina and Sophia today! They are now 2 years old and both have made amazing progress since being born at 26 weeks gestation weighing 810 grams and 790 grams respectively.
I can’t wait to see you guys again and big hugs and kisses from A and I!
So Thursday was our BIG day in London with the movement disorder doctors and the neurologist. I had been worried sick about this appointment but at the same time I was eager to find out what his MRI showed from McMaster and then the new one that he had this past May at Toronto Sick Kids.
I had left here at 2pm for the 4pm appointment. Of course there had to be a huge accident so I didn’t get there until 4:20pm. I get into the room and all of the docs come in. They said “well we have some bad news…” and I said “let me guess, you don’t have the MRIs?” Yep. No MRIs to look at. Toronto didn’t do the MRI they were supposed to and McMaster wouldn’t send his one over. Didn’t do it?! A can NEVER have another MRI now because of the magnet in his skull. They better have something! I was so FLIPPIN mad!!!!! I drive all the way there alone with A to find out NOTHING! I don’t understand how all of this bullshit happens with A. Why do we have SO many issues with hospitals and doctors!?! I just don’t understand. So out of the 20 minute appointment that we DID have I was told that A has dystonic cerebral palsy. hahaha are you kidding me?! Thanks for the information that I already knew!
So the last appointment we had with the docs in London they told me that they could guarantee that As would have PVL or something happening with the basil ganglia. I had asked “what if nothing shows up…then what?” And I was told then that A would be a mystery. WELL this time they told me that they would try and get the one that A had done for his implant and if I didn’t hear from them in three months to call them. Three months?! They then went on to say that even if the MRI was fine it didn’t change that he had CP. What about the mystery? Well it doesn’t matter they said. The damage could be in the nerves and cells. Hmmmm sounds strange to me. I am not giving up on my fight and one day I WILL succeed!
After leaving London VERY upset I drove to C-town. Grandma and grandpa were taking A for the weekend so that I could go on my much needed girls weekend near Grand Bend. Tina came to pick me up and we headed out about 8pm.
I had an AWESOME time. It was so great to know that A was being taken care of and that I had NOTHING to worry about for once. It was so strange just doing nothing and hanging out. Sleeping was strange too! It was SO quiet and dark and that is NOT something that I am used to here at home. We all went and spent the day at the beach on Saturday and had great weather. There was eight of us girls and I can’t wait to do it again next year! I wish I had taken more pictures but here is what I have….
Sunday A and I left C-town at 2:30pm and I was home at 4:30pm. I could hardly believe that it only took two hours but we usually stop so it was very quick just doing it straight!
A didn’t sleep the whole ride home and wasn’t very happy either. I had to stop twice because he was vomiting so much that he was choking. NOT a fun ride to do alone that is for sure!
Finally after getting him in the door and changed he went to sleep. That was at about 5pm. He slept until 8:30pm!
After his bath and brushing his teeth he pretty much wanted to go back to bed. Daddy spent a bit of time out on the balcony with him watching the stars and that was it…he was just exhausted. And this morning at 8am….
Okay FIRST I have to wish a huge happy birthday to Cole!!! His birthday was on Monday and he turned 2 years old! He was also at McMaster and was born at 24 weeks weighing 680 grams. He is such an amazing little guy and he has come SO far!Big hugs to you Cole and we will see you soon hopefully!!!
Next I have to wish a happy birthday to my brother, or Uncle S as he is known! He turned 27 yesterday and has been one of my best friends ever. Also a big congratulations to him and Andrea for buying their first house which they will be moving into at the end of this month!
So this past weekend we headed down to C-town to grandma and grandpas for a visit. We didn’t leave until Sunday afternoon but we had a great time. It was a busy house with J’s aunts, uncles and cousins.
A’s cousin Wes being the playful awesome kid he is!
A LOVES lights. Wes had a light stick he was using to entertain A…
Grandma and A hanging out in the crappy weather…oh well at least it was hot on Monday for us!!!
A is one of his favorite places ever…the pool!!!
Awwww what a great family picture!!!
I love this picture of the two of them….
Does he EVER stop smiling?!??!
Grandma and A getting some sun…
Nap time for my little man!
What a cool dude!
Swimming again with grandma…
There were a lot more pictures of A and grandma swimming but he wasn’t wearing a diaper so I can’t post those pics!!!
We ended up getting home late from C-town and didn’t get a very good sleep before having to head to Toronto Sick Kids yesterday. I ended up leaving at 7:45am for the 10am appointment and got there at 9:15am! It is so crazy how sometimes it can take three hours, two hours and then this! I am very happy that it was an uneventful drive as it was the first time that I have had to travel there alone with him.
The appointment went well and A was doing very good at reacting to the sounds that Ruth was playing. Everytime that he would look away from what I was doing to entertain him after a sound she would set off a puppet. The puppet is in a box in the corner of the room and it has lights and sounds. They use it kind of as a reward for turning to the sound. Well my little smarty pants LOVED this puppet and was turning and smiling at it without it even going off! hahaha he just wanted to see it go off and was waiting for it.
Once she was done with doing all of the changes and settings she swept through the probes and made sure that he was okay with it all. He was fine but definitely wondering what was going on.
We got home about 1pm after picking up my glasses and he was exhausted. I found that he was having a hard time going to sleep so I turned off the implant and he zonked right out. After his nap I turned his implant on and boy was he upset. Pouting, real tears and all…
I have to tell you that it is heartbreaking to have him cry like that with tears. It is something that I have not had to deal with for two years and WOW it is crazy! I couldn’t help but giggle to myself as well because it is just so dramatic! He noticed and then he was trying not to laugh. It was too cute.
Daddy got home from work early so we headed over to grandma and grandpas to celebrate Uncle S’s birthday with him and Andrea.
A was having fun with daddy here. If you stomp your feet and walk towards him this is his reaction!
Uncle S getting his one gift from Andrea…a punching bag!
Birthday cake time…
We ended up getting home about 10:30pm and I could barely keep my eyes open I was so tired (and very grumpy!). Thank God that A went right to bed….
I am so amazed at how much A is hearing with his implant. He has always been a big TV fan but I see now how much more he pays attention to it. Especially when there is music playing. This is something I had always dreamed for him! When I found out that he had cerebral palsy my hopes were that music could guide him in life. However we then found out he was deaf and my dreams were crushed. I wondered how on earth he would find his place in the world. Well now with technology and his wonderful cochlear implant my dream is starting to happen! Just look at the concentration this kid has!
Thursday A went and spent the day with grandma at her place. With the heat as crazy as it was I just knew he wouldn’t be happy here. Daddy and I headed to Orangeville for the afternoon so that he could do his final drive test.
Friday I met with a mortgage specialist to see what J and I are able to do. He was very nice and helped me think a lot about what we are able to do and not what we WANT to do. I have to admit that I always find it a bit odd when people ask “what is wrong with him?” (Meaning A of course.) I told him the basic “he was born premature and has cerebral palsy.” Of course not everyone knows what cerebral palsy is and I have to remember this. He then wanted to know why he was wearing glasses and what was on his head, meaning the implant. So I told him. He said to me “oh that is so sad.” Of course many think this but they do not know A. It isn’t sad. A isn’t sad. It is just a different way of life. It angers me when people pity me and feel sorry for A. This is one reason why children LIKE A have such a hard time in this world. People don’t realize that they are just like everyone else except that things have to be done differently.
He then went on to ask about the future. Like, “what about in 20 years from now? Most people have kids and then they grow up and move out….” Well I said “I try not to think of the future but rather live for the day.” Hmmm no response. Now everyone that knows me, knows that I worry A LOT about the future however I have never really thought as far as 20 years!!
The last comment that blew me away was “well you could just have another one.” I took this as having another one would kind of “replace” A. I could never replace A. He has been through so much and has come so far and amazes everyone around him. Of course I would love to have another child but I want to wait until I know that A is more “stable” if that is the right word.
It angers me that he said all these things to me (and you special needs mommies know EXACTLY what I am talking about) but at the same time I have to realize that my life isn’t the normal life. There are so many people in this world that don’t even realize that things like this go on. I mean this guy had to be about 50 and yet he didn’t understand prematurity, cerebral palsy and all the needs that come with it. And if he has never been around it how can I expect him to understand? I can’t. All I can do is try to educate as I go about my days.
Anyhow, yesterday was a great day. A and I went out and did some running around that needed to be done. Then I decided to take him to Chapters to buy him a new book. This kid absolutely LOVES books now and it is so awesome to be able to read to him now and know that he is hearing everything I am saying! I always have read to him but the feeling now is just overwhelming.
I ended up buying him a few books and we have already read them over and over and over. I think I can read most of them now with my eyes closed!
We did some more time in the Pony. Of course with us having carpet it makes it difficult but it is still good for him to stand and put weight onto his legs and hips.
On another exciting note, A is LOVING when you stand him up holding him. He now even moves his legs to walk towards you!!!! He gets SOOOO excited! I have it on video but I don’t know how to put them on here yet. I cannot believe that he KNOWS to move his legs/feet to walk. My little smartie pants!
Yesterday was the annual picnic at McMaster hospital for all of the graduates of the neonatal intensive care unit. We had a great time and got to see all of our preemie friends again! I also was able to meet to different moms that I have met over the Internet who also had a child in the NICU at McMaster. It was great!
Grandma and grandpa came with A and I as daddy was up north fishing with Uncle S. We both miss him and can’t wait to see him! Anyhow here are my pictures from today!
A waiting to get his tattoo with grandma…
A and his tattoo artist 🙂 Notice the leg….
A with the amazing Dr. Shah!!! Actually, it is kind of ironic that two years ago to the day, A was only 13 days old and VERY sick. Dr. Shah had called both J and I to come into the hospital. I will never forget that day. I was just getting ready at the Ronald McDonald House and I got the page. I panicked especially when I was then handed off to the doctor. He told me to come ASAP. I did that. Meanwhile he had called J (who was working in Guelph). My parents had come with him. I think they made it to Hamilton in about 30 minutes…maybe less!
Anyhow, when I walked into the pod where A was I saw a lot of people around his isolette. I started to wash my hands and could feel my heart in my feet. I felt so sick. The tears started before I even reached the corner A was in. Dr. Shah just looked at me and shook his head. More tears. Danielle was on this day too which helped me a lot.
We had a meeting with Dr. Shah that afternoon. I remember how long that walk felt down to the room we were meeting. There was a sign on the door that said “The C’s”, it was awful. They had given A a drug to paralyze him because of some strange jerking and stiffening movements which he said they had never seen before. He told us that he wished that he had answers but he didn’t. Time would only tell what would happen. He also took some spinal fluid to see if anything would show up there.
J and I were also told that we needed to make some choices. We wanted everything done for A. He told us then of the chances of him being blind, deaf, handicapped but none of that mattered to us. We just wanted our little boy saved and alive.
Then, to a year ago today….another meeting with Dr. Shah. A had also stopped peeing and he was concerned about kidney failure. Nothing showed up in the spinal fluid or the blood cultures. They still had no idea what was going on.
Two of the worst days of our lives for sure. But without this wonderful doctor A probably would not be here today! Dr. Shah will always have a special place in our hearts…
A with Hamilton Tigers mascot…he sure didn’t know what to think!!!
A fishing just like daddy and Uncle S!!!
Walking with daddy…
Little Alina and her thumb…
A, grandma and Alina…
A starring at Alina…
A, Sophia and Alina…
Avery and Olivia…
Alina, Steve, Brian, Avery, Olivia and Shannon…
A and Maddox…I met his mom through the Internet and we got to chat a bit in person!!! He is a cutie!
My little man…tired but still giving me some smiles!
Grandpa blowing some bubbles for A…
Cale enjoying the bubbles too…
A with Steve. He was also another great person involved in the beginning, including the two days I just spoke of. So caring and compassionate with his work. I remember him telling me when A was leaving the NICU that he wished I could share some of my devotion and attitude with some of the other parents. It is always comments like this that make you feel good.
A and Cale…
Avery and her grandma doing some colouring…
My little man…smiling away for the camera!
A checking out Avery (with her grandma and mommy)….
A and Cale laughing at Cales daddy playing peek a boo….
My favorite picture!!!
A back at Sophia and Alina’s house…a little more relaxed since losing his shorts! (We all headed over for a nice visit)
Alina enjoying being outside!
Avery by the pool…
Alina and A sitting side by side…A was just babbling away here, it was really sweet…
Olivia and Sophia and Alinas grandpa…
Avery and daddy…
Alina and mommy…I missed the big smiles…
Vickie and A…
Thanks Steve and Vickie for having us over, we really had a great time!!! After leaving there A and I headed over to the hotel with Tina, Derek and Cale.
Looks like these two boys are just like their daddies haha
A in his floating wet suit haha it was way too funny trying to get him into this thing!! It worked AWESOME in the pool though for him!! I have had a really hard time finding him floating devices that work at all. With his low tone in the neck and trunk it makes it hard to hold him. This helped him hold his head up and was no work at all for me!
Cale in his jumper…
A watching tv and STILL smiling away (no nap today either, pretty impressive!)
Cale in bed…I was trying to take a picture and he covered his face with his blanket…
Then the washcloth…
YAY, I finally got the picture!
So it was a LONG day for everyone! A and I didn’t get home until 11pm. And I am happy to report that he had a pretty good night!!!!
This morning I had to get A up and out of bed so that we could drive daddy to work. It was actually kind of funny because it is the first time that I know he was not thrilled about being taken out of bed before he was ready. Upon coming home I laid him on the couch and within minutes he crashed for almost two hours!
When he got up I got us all packed and ready to head to Kitchener to meet Cole! Cole was in the NICU when A was and his parents also stayed at the Ronald McDonald House. Actually kind of a small world because Cole’s dad and I went to high school together. Anyhow Cole was also born at 24 weeks and weighed 675 grams. Here is a profile that his mom Lisa had put on her site about him. Cole Evan
It felt kind of strange seeing Cole and meeting him because I feel like I already know him so well! But that is from following his blog daily and seeing what he is doing. It is so nice that I have met a few moms in the NICU and still keep in touch. They are definitely the ones that I can turn to when I have issues because I know that they understand.
A couple of pictures from last night of A…
Cole…what a sweetheart!
Cole is such a busy boy that I had a hard time getting any pictures of the two of them together. Here are the only two that I caught!
Cole climbing on the chair…is he cute or what?! And that smile!!
A keeping an eye on Cole…
So we had a great visit and I am so happy that we got them together! It took a long time but it is so hard during the months where germs are at their worst.
Lisa has a great site that I read daily. I have a link on the side of my blog for it…she has all the latest for anything and everything you can think of!
Growing Your Baby
After leaving our playdate we went to Fairview Mall for a bit. A loves his new stroller so I figured we could go there for a bit before heading home. We picked up daddy when we got back into Guelph and came home. We got the dogs ready and all of us headed out for a walk because it was so nice out! I am so happy that the days are coming where I can get out more with A. It is so hard being cooped up in the house all of the time!
Daddy and A watching the Leaf game…this has become one of my FAVORITE pics of the two of them!
Today was a great day around here. A didn’t get up until 9am so that was a nice treat for me. He also slept pretty good last night which was also a nice treat. I don’t want to jinx it so I am not going to say too much about it!
He had occupational therapy today but he had just woken up so wasn’t really in the mood to work with her. Deb, his AVT ended up calling to cancel because she didn’t want to drive from Kitchener in the weather so we only ended up with the one appointment.
For some reason lately I have been really tired around dinner time. It was very hard for me to even keep my eyes open tonight. Maybe all of this sleeping in is making me feel like crap. LOL
You know, I also wanted to say how sick and tired I am of people in this world that just have no respect for anyone. I talk to many moms of preemies/special needs kids and it is the same thing for all of us. Why do people think that it is a bad thing to have a child with special needs? My favorite one has to be “punishment”. Are you kidding me?!? A isn’t punishment to me in any way, shape or form. He is perfect in my eyes. There is not one single thing that I would change about him at all. He has taught me so much in life and given to me what I would have never got with a “normal” child. Everything happens for a reason and I could come up with a whole bunch that could explain A being born at 24 weeks. And as everyone knows, having him early wasn’t really a huge shock to me. I knew for weeks before he came that he was going to be early. The night before I had him I read a little booklet on preterm labor!
What I think is “punishment” is the people that think this way having children of their own. I feel so sorry for those kids. They will have to grow up in an environment that isn’t healthy in ANY way. This is why it is so sad to me that some people cannot have children and they would be wonderful parents; loving, kind. Then when you look around in this world there are so many people that just should NOT have kids.
Why do people feel sorry for special needs kids and the parents? There is no reason to feel sorry for them. They are people just like everyone else. When you raise a special needs child the same way you would raise any other child they don’t even know the difference. I remember talking to one mom who has a daughter with athetoid cp. The little girl can’t talk, walk or do anything for herself. Yet her mom said to me “Shannon, she doesn’t even know that she is disabled!” I have to admit that I was a little thrown by this at first but after seeing watching her daughter for a bit I just saw a pretty, happy little girl.
You know, there is a saying that everyone learns growing up. “If you can’t say anything nice then don’t say anything at all.” Some of us still need to learn what this is and take the advice!
Anyways all in all I am just saying that having a child with needs is not a bad thing. And anyone who knows A (actually I don’t even think you need to know him, you just have to look at his pictures) knows how happy he is. He knows that he is loved and I am so lucky to be able to call him my son!
Anyhow I am off to bed. Here is just one adorable picture of my little man and daddy!