Celebrating Spencer's First Birthday

The Cake that me and my sister in law to be made!

I can’t believe that Spencer is already 1 year old and the surgery is behind us! It feels like just yesterday that we got the horrible news about his condition and the need for surgery and as I sit here and reflect it is unbelievable how it all just fades away into the past. It brings back a memory of what a friend of mine (whose daughter underwent the same surgery a year ago) said to me the week of the surgery. She said, “I am happy for you that it is approaching and before you know it, it will be over and you won’t look back.” At the time I really did not understand and to be quite honest I was quite appalled at these words. I thought, how can you say this to me when my ten month old baby is about to undergo such serious surgery? How can I look forward?  I just want time to stop and the date to never come. But, now sitting here on the other side of it, I get it! It is over! He is Fine! We CAN move on with our lives and celebrate his first birthday.  At first I figured we would just have a small birthday party but everyone said the same thing. “You have had such a difficult first year with Spencer you have to celebrate the good times. Remember how you are feeling right now and live!” So we did. We had a full out party with food, and a music class surrounded by all our family and friends. It was truly amazing. We watched Spencer crawl around, cruise around (as he is minutes from walking) and most important have a ball at his own party, smiling from ear to ear the entire time. What a day!

The Music class with all Spencer's friends

 

As I look at Spencer now even I feel like even I am in a very different place then I was one year ago. One year ago I would sit and look at Spencer and fear what his life will bring. I found myself doubting his looks and as shallow as it may sound, I feared what he may look like if he continued on the path he was headed. Now, I can honestly say this worry has been wiped away with the surgery. I can truthfully look at Spencer now and say that he will be fine. He is so adorable. His eyes and smile can light up a whole room. It is amazing how many people say “oh, he is so cute.” I didn’t hear those words at all until now. People just used to comment about how much hair he had or commented on what he was wearing but now it is always,  “look at him, he is so smiley, he is so precious, his smile is amazing!” What a difference. I even had someone ask me recently when he was having the surgery. I was shocked by this but said that it was in June and they were blown away. They couldn’t believe how he looks and how he is acting only 10 weeks after surgery. And the scar that I was so worried about, the reason I considered not doing the surgery, is nonexistent, buried deep in his hair and unless you really look you can’t tell at all. I sort of feel silly now for ever doubting the surgery in the first place. I trusted Dr. Philips and he is truly amazing! He did exactly what he said he was going to do and I am ever so grateful. I would urge anyone who has a child with this condition to go through with the surgery. Yes, it is hard to watch your child undergo the surgery. It is an unbelievably difficult week but wow it is worth it. Once that week is over your world will change so much just as ours did. We did this for Spencer’s future and it was definitely the right choice!                

 

We all take for granted the small things in life, like watching our kids do the little things but I look at life a whole different way now. I think if Spencer can get through this then we can get through anything. I appreciate the small stuff now. I do try and live for every moment as you never know what tomorrow may bring.

Spencer had his first check up and although he is on the small side (the 10^th percentile) he is meeting ALL of his milestones, he is gaining weight, getting taller, starting to talk a little bit and eating like a horse. What more could we ask for? Our pediatrician is amazed at how he looks as his eye is really evening out, his nose is starting to look straighter and overall he is just such a happy baby. Such a difference from when he was an infant.

Over the next few months Spencer will have follow up ophthalmology appointments, an appointment with Dr. Philips, and continue his regular checkups but besides that we are not looking back, only forward.  

Spencer at 1 year

 

 

Siblings Involved...

Eidan the Big Brother

Many people have asked me what we told Eidan or how Eidan dealt with the whole situation so I will devote this blog post to him.


 Our son Eidan is a very mature four year old boy. He is extremely inquisitive, talkative and outgoing and constantly asks “why or how” about everything. So therefore we knew that not only was it going to be difficult on us it was going to be equally as hard or even harder for him to understand and deal. I decided to have a conversation with our pediatrician and asked him how to handle it and he gave me the best and most sound advise which I followed to the tee. My pediatrician advised me to sit Eidan down quietly about a week before surgery and tell him a very basic story about how Spencer has a boo boo on his forehead that the doctors need to fix. Tell him that Spencer will have to spend a few days in the hospital and then will be home and all better. I then asked my doctor what to do about all the questions that I knew would follow and he told me to always keep it simple and answer the whys as they come. So this is exactly what I did. He also advised to have Eidan come to the hospital at some point in time, not necessarily to see Spencer but to know that he is there and okay. He said that sometimes when a sibling leaves for a period of time children let their imaginations take over and fear the worst. By bringing him to Sick Kids which really does not feel like a typical hospital environment Eidan will know that Spencer really is fine and will be coming home.

As I was putting Eidan to sleep about a week before surgery I told him that I wanted to talk to him for a minute. I told him in a very  quiet and calm voice that Spencer has a boo boo on his head. Eidan’s response was “I don’t see one”. I said, “you may not be able to see it but it is there and the doctors are going to fix it.” He said, “okay”. He was looking at me very somberly so I continued. “That means that Spencer is going to have to sleep at the hospital for a few days and mommy will have to stay with him but after a few days he will come home and be all better. Again he said “okay” but I could see he was processing. I asked him if he had any questions. The only thing he wanted to know at that time was why I wouldn’t be here and why I had to stay with him. I was relieved because that’s an easy one to explain. I told him that his Bubbie (Grandmother) and Zaidy (Grandfather) would be sleeping here with him so he wasn’t alone and explained to him how Spencer is still a baby and needs mommy to be there and feed him. Eidan knows that I nurse him so that answered that fast. He said he didn’t have any more questions so I wiped my brow, and kissed him good night, full well knowing that it would take a day or two and then the questions would start to fly. And they did!

In the morning on the way to school the questions began. This was the conversation

Eidan: “Mommy, is it going to hurt Spencer?”

 Me: "No honey he will not feel any pain because he will be taking medicine. Do you remember when you hurt your leg and mommy and daddy gave you Tylenol and you felt better?”

Eidan: "Yes"

 Me: So Spencer will have the same medicine and he will be fine too.

 Eidan: "That’s a good idea."

Me: "Yes Eidan, it is what the doctors do."

Eidan: "Okay that’s good because I don’t want Spencer to hurt."

Me: "That is so sweet of you Eidan, nobody wants Spencer to be hurt but we also want him to be better right?"

Eidan: "Yes we do."

 Me: "Good"

 Then I dropped him at school and waited until he got home to see what else he would come up with.

There were not as many questions as I thought there would be but they did continue to come. He asked things like if he would be able to hug Spencer, and if he could still play with him? He asked how long he would be gone and if he would look the same. These were all very straight forward answers and he took all the answers to heart.

The day before surgery I again had a talk with him about everything, how he would have to be a good boy and listen to Bubbie and Zaidy while mommy and daddy weren’t here. I made him a chart that we put beside his bed that had 7 days on it and told him that every night or every morning when he got up (his choice) he could put a sticker on that day and that would help him visualize how long Spencer and I would be away. He loved that as he loves stickers. So every morning when he got up and my mom went to get him, he would put a sticker down and recite how many days until Spency got home. I also made sure to put extra days just in case there were any forms of complications and we didn’t come home as early as they predicted. (We were home in 5 days which was a pleasant surprise for Eidan.)

We also made sure he had some really fun things to do as school was over for the year and he didn’t start camp for another couple of weeks. Our family and friends all chipped in and he went to movies, parks, on playdates, to the library and out to dinner so he was busy all the time and had very little time to dwell on the fact that I was away.

 The night before the surgery Eidan was saying good night to Spencer as he does every night but this time he was like a little old man. Usually he just gives Spency a hug and a kiss and says “have a good sleep” but this time he took Spencer into his arms and said, “I love you Spency. I don’t want you to cry. I will miss you and soon you will be all better. You are a good boy and I will see you soon.” And then he gave him such a huge hug and kiss and said “good night”.  I balled my eyes out. I was so amazed and flabbergasted at his maturity and his kind, loving words. I knew then that my little boy Eidan was really not so little anymore and probably much wiser than his 4 years.

 I told Eidan how proud we were of him and how he is such an amazing big brother and how Spencer will miss him too. We hugged and kissed him and he went to sleep. What a night!

I have to admit that the first night was probably hardest for everyone. (The night Spencer was in the Critical Care Unit). I talked to Eidan on the phone a few times throughout the day and he was fine but at night my mom said that it was a little bit hard to get him to bed. He had nightmares that night that resulted in my mom giving him cookies and milk and reading stories in bed in the middle of the night, but hey, whatever works.

After that it was smooth sailing. As Spencer was recovering nicely we decided that Steve would go home, pick us up some clean clothes and put Eidan to bed and then return to the hospital. This worked well. Eidan got to spend a little quality time with Daddy and went to sleep much easier and slept through the night.

 Over the weekend, my parents brought Eidan to the hospital. This was very good advice as Sick Kids Hospital is such an amazing place. It doesn’t look like a typical hospital inside. It is full of cool things to look at like glass colourful elevators, it is very bright. In one section it has a train that if you press a button runs around the room close to the ceiling. On every floor it also has a big waiting room stocked full of toys and games for every age, from infant toys to a Wii for older kids. It is truly amazing and Eidan’s eyes lit up when he saw everything there was to play with. He enjoyed spending a few hours with us. Just to clarifiy we did not let him see Spencer as this was when Spencer looked his worst. He was extremely swollen with his eyes swelled shut so we felt it would be way to scary for Eidan to see him and frankly it was difficult enough on us to deal with never mind a 4 year old. Steve and I took turns staying with Spencer and it was nice to eat a meal with Eidan and talk to him in person about everything that was going on. It was also exciting that when he came we could tell him that Spency was going to be coming home the next day and that made him very happy too.



Eidan and Spencer (6 weeks post surgery)

 The last and most difficult part which I did address earlier in my blog was that of explaining to Eidan how Spencer didn’t quite look like himself. I didn’t want him to be scared of Spencer when he finally did come home. I explained to him that Spencer was fatter than he normally is, his eyes and face might be a little red, he may cry a little bit more and sleep a little bit less than he usually does but again I reassured him that Spencer is not in any pain, he is happy and healthy he just may look a little funny for a little while and that every day he will get better and better. We also told him that he needs to be a little bit more careful when playing with him as is “boo boo” is going to take a little while to heal. Eidan seemed to understand and when we did finally bring Spencer home it took Eidan a couple minutes to get used to him but after that it was as if Spencer never left. They were back to the best of friends. One very interesting thing is that Spencer had stranger anxiety even with the people he knew really well but the relationship he had with his brother did not change one bit. He smiled at Eidan as soon as he saw him even though he hadn’t seen him in almost a week. It was quite amazing. They were both happy to be back together and we were happy to be a “normal” family altogether again!