Saturday, April 19, 2014

Happy Easter

It is nice to have Easter pictures from last year to see the incredible growth in Paul in just one year! He is so excited about eggs this year. We took him to one of his music classes and they had prepared a little Easter egg hunt which he thoroughly enjoyed. We haven’t done much this year, just feeling very tired and don’t have the energy for baskets or egg dying or egg hunts of our own. Luckily he is still young enough to most likely not remember and we will have many years to come to start some traditions. For now we have some wonderful pictures of him with a bunny and fun memories of little things we have been able to do together.

Easter 2013:


Easter 2014:


Wednesday, April 2, 2014

Noticing the Little Things

I’m not sure if I would have been this way or if it is due to the circumstances which Paul was born with but I find myself very observant of his behavior. Some may argue it is just because he is a first child but I think it is more than that. I think it happens when, in the back of your mind, you worry about the reality that you could lose your child at any moment. Of course this is the reality for us all but when you have a chronically ill child there are daily reminders of just how fragile life is. Maybe it is the daily reminders that heighten my senses to notice every little thing he does. Every milestone, every expression, everything! I would like to share with you some of the moments I have locked away in my memory that make me smile and bring me joy to think of…

  • I took Paul to a music class a couple of weeks ago and they did a new song. It involved a bubble machine that the teacher walked around the room while the children used butterfly nets to catch the bubbles. I wish I could have captured the wonder and amazement I saw on Paul’s face during this activity. Just thinking about it now makes my heart swell with joy.
  • Just yesterday we drove out to a science center in a nearby town. Paul found an invention that he was particularly enjoying. Another parent and child entered the area and the child was very hesitant to play. I asked Paul if he would take over one of the toys to share with this little girl. He looked at her then at me, picked up a toy, then walked it over to her and handed it to her with a smile on his face. I was amazed that not only did he understand what I asked him to do but followed through!
  • One evening daddy was setting up Paul’s dialysis machine and I was folding laundry in his room. Paul snuck out the door and hid behind the wall. Then he would jump out and say, “Rawr”, with his hands outstretched. We would both jump and pretend to be scared. I started hiding behind Kirk from fear of the scary dinosaur and Paul thought that was very funny. After just a couple minutes of doing this repeatedly Paul ran into the room and snuggled up to daddy the way I had been doing. It was so sweet to see in action the principle of children imitating what they see from the world around them. I am blessed to have love at home and get to see the wonderful impact it has on our happy boy.
  • While at church one Sunday Paul started pulling at his shirt collar. We noticed he was warm…three layers was a bit much! So I started to take his sweater off when he declared, “stop, stop, stop”. It was very cute in his sweet little voice but also very sad that he was afraid of what was happening and able to let us know. This one will break my heart if he ever uses it under circumstances we can’t help with, like getting his blood drawn.
  • Paul loves food but I always know when there is something he really loves because those are the times he doesn’t share. And he doesn’t just not share but he gets naughty about it. I will ask for a piece and he will consider it, then offer it and as soon as I get close he will pull it away and laugh hysterically. I love seeing how his mind works and I know he really is considering sharing but then realizes at the last minute he wants to keep it for himself.

Of course there are many more everyday things that happen that bring joy to my heart. I saw a good idea online of making a notecard for each day of the year. Then pulling out the notecard for that day and writing down the year and something spectacular that happened that day. Years from now it will be fun to pull out a card and see what happened on that day for multiple years in a row.

Next week will mark Paul’s 2nd birthday. I was thinking today that most people celebrate their actual “birth” day each year. Unfortunately, Paul’s “birth” day was a very stressful and sad experience so instead I intend to celebrate each year of his life on his birthday. I feel so incredibly blessed to be celebrating 2 years when we weren’t sure if we would get 2 days. I was taught by a very dear friend early on in this journey with Paul an important lesson: Enjoy every minute! and now I would add to that…

Enjoy every minute and don’t forget to notice the little things!

Wednesday, March 12, 2014

23 Months Old Today!


This has been such a fun month. Paul’s vocabulary is increasing very quickly and it is so fun to hear him try out new words. It is with difficulty and frustration of both parties trying to figure out what he is saying sometimes but eventually we come to some understanding. As his pronunciation becomes more precise over time this will become much easier. It is nice that he is willing to work on pronunciation and try words over and over again. He is really starting to understand what books are for and enjoying sitting and reading them. He will now bring books over that he wants us to read to him and sit and listen. His favorite book right now is Pout Pout Fish by Deborah Diesen and he often asks for it by exclaiming, “powt, powt”!




One of the most fun things we did this last month was attend the Sesame Street Live show here in town. Paul LOVED it! He adores Elmo and affectionately refers to him as “melmo”. He can spot anything with his picture on it, sometimes taking me some time to locate what he saw! I was happy to see him enjoy the show and be so mesmerized by the lights and the music. It is so nice to be able to have special moments like these when we just have fun and get out of our everyday routine that includes so much medical stuff.


Getting so tall! Paul is catching up to his peers. There is an old wives tale that when children hiccup they are growing and Paul has been getting hiccups sometimes up to 5 times a day. So we always say how he is growing because of them and it must be true. Look at him tower over that duck! He is even wearing size 2T. It is a little sad because it is much harder to come by really cute clothes as they get older but Paul seems to make anything look cute on him.


As he gets taller he is trading in his ridiculously oversized cheeks for just big cheeks. One of the things we really enjoy is when upon a first encounter someone will comment on how big his cheeks are to which we respond with a photo like this one from December of 2012, sometimes it even surprises us how huge his cheeks were!


When I told Paul this morning that we were going to take pictures with the duck he immediately hurried upstairs, helped bring the duck into our room and then proceeded to sit down and pose for the camera. He loves the camera and it is so fun to photograph him. Here is an album with more pictures from today for our friends and family.

I am excited for his upcoming 2nd birthday. I am trying to spend as much time and money on it as possible so that we will get the call and have to cancel. That is usually how things work and I am hopeful. But if we don’t get the call it will be fun to celebrate 2 wonderful years with our little man. We feel so blessed to even have had this time with him and are grateful for every single day!