Life's Irony

Okay, here is a bit of irony. Max has been on summer break for the past 3 weeks or so. Just before break started, we were perusing tv channels so that the kids could watch something (occupy their time) while I prepared dinner. I suggested the food channel and much to my surprise, both kids agreed I don't even remember what show was on, but they were hooked. Something about watching a host prepare a meal from start to finish, while discussing all the ingredients and the process was attention grabbing. The fact that my kids enjoy cooking shows, so much so that they will even choose it over a cartoon, isn't the ironic part, though.

The irony lies in the fact that my SON, who has been g-tube fed his entire life, is fascinated by all the recipes and insists on making his own dishes EVERY DAY! He will entertain himself for hours measuring out ingredients, mixing, blending, sauteeing, and basically copying whatever the chefs are doing through various episodes. His favourite......Rachel Ray.

I love it! Of course, there is a huge mess at the end of all this "cooking"; but the kids have so much fun, it's hard to say "no". Although, I do try to limit the ingredients to dry products, and I notice there is quite a bit of snacking that takes place between the two of them. Now, I just need to figure out how to get them to help with dinner every night.

What A Year!

Summer vacation has officially begun! It has been a wonderful year full of growth, new experiences and many, many new friends. And, as with most transitions in life, the end of this year marks the beginning of a new phase in our lives. Max will be attending a general ed kindergarten class this coming fall. For the first time, he will be in a classroom with all typical peers....and lots of them! In our area, we have what's called "special day classes" for kids who need a separate classroom environment with more aides and fewer students, all of whom has IEPs (individualized education plans). Max has been in such an environment since he started his educational journey, beginning with an early intervention program at 20 months.

This past year, he was in an SDC Kindergarten class, with daily mainstreaming for part of the day into a general ed kindergarten. When we attempted the mainstreaming last year, he wasn't ready. He would spend the entire time with his hands over his face, quiet and overwhelmed. This year....a totally different story. He has participated freely, joined his classmates without hesitation and had lots of fun. He has matured! And, now we ready for the next step...general ed!

I'm nervous, excited and so very proud of my little guy! He has worked so very hard this year. He has grown physically, emotionally and academically. Congratulations, Max, on a job well done!

And Two Years Later....

Can't believe my last entry was over 2 years ago. Life seems more settled, now....more routine. Two years ago, we were in the midst of our final frozen embryo transfer. The transfer never took place as our embryo did not make it through through the thawing process. It took a few months to recover from that, to say the least. We moved into our first house last summer. Max started kindergarten and Jozey is in pre-K. I started running, just to give myself an outlet and much needed "me" time.

Much has happened in these two years. Max has continued to progress. He is now 6.5 and communicates verbally, where he used to rely on singing. His speech (articulation) has improved to the point where even strangers can understand him. He uses a reverse walker to get around in he community. He can write his name clearly. And, he can even sound out the letters of an unfamiliar word and "read" it. In short, he continues to amaze and inspire me every day.

My sweet daughter, Jozey, is on the brink of turning 4. Yes, 4! She is a fierce, independent spirit with a level of compassion beyond her years. It's been such fun watching the two of them together. They actually enjoy playing with each other providing me a much needed respite every so often....even if it's just to sit by myself and fold the laundry.

I suppose we're gradually finding our own "normal"....and, in the process, I'm trying desperately to find myself.

Catching Up

Hello Friends. For those of you who have been checking back, and wondering just why it's taken so long for me to post a new entry, I apologize for the lack of effort on my part. March was a strange month for me. Not only were we recovering from the kids' illnesses in February, my husband and I also embarked on another foray into the world of infertility. Our babies were all conceived through IVF; and we have/had two frozen embryos from our cycle with our daughter, Jozey. In January, Chris and I decided it was time to try with a frozen transfer. We did our first cycle in March.....and it ended in a chemical pregnancy.

We're planning on another transfer mid April, so it's possible this might be my only entry this month as well. Frozen transfers are definitely easier on the body (not as many medications); but still very emotionallly stressful. I didn't think I would feel as stressed; but I do. I am hoping that this last attempt will work for us and we'll be able to add one more healthy child to our family.

I feel as if everything else is on hold until we know whether or not we're going to have another child. Getting pregnant is just the first step...because then there's the actual pregnancy. Unfortunately, I don't have a very good track record there either with Max and Zoey being born at 26 weeks, and landing on bedrest with Jozey at 24 weeks. But, I've just been feeling like we need to get to the other side of all this potential baby making. I love being a mom; but I do see a time when the children are older, that I may have time to pursue some outside interests, maybe even go back to school and finish that graduate degree I started way back when.....

On another topic entirely -- we took the kids to a Wiggles concert in Los Angeles this past weekend. What a blast! They put on quite a performance and both kids loved it to bits. Max was a bit overwhelmed for the first few minutes, adjusting to the sound and visual stimulation (overstimulation). But, once he felt comfortable, he was on his feet for the remainder of the show, dancing and singing away. It's the longest I've seen him on his feet.....ever! And Jozey was just as enthralled with all the action and music. What a fantastic experience for all of us.

Where oh where did the month go???

I can't believe February is almost over! Ugh! The month has been quite a blur. Both kids got sick early in the month. Both kids ended up on antibiotics. And, I've had to keep Max home from school since the beginning of the month. While Jozey seems to be doing better (although she did start blowing some nasty green gunk from her nose today), Max has been fighting and fighting. The antibiotics gave him a bad case of diarrhea and, although we're finished with the meds, he's still experiencing severe diarrhea. Thank goodness for the g-tube -- we've at least been able to keep him hydrated and somewhat nourished. He's had blood tests to check his blood count and electrolytes and a chest x-ray to rule out pneumonia. So far, so good. Now we're just waiting on stool cultures to determine whether or not he may have some sort of intestinal infection. Fun, right??? We had one day where Max had a dozen diarrhea diapers! He's lethargic and has no interest in doing anything other than watching videos.

It has been a frustrating month. I feel so helpless during these times. I wonder if I'm missing a symptom that might give us a clue as to why he's been so sick. I wonder if the current medication regime to treat his chronic medical issues might actually contribute to what is going on right now.

I know that we just need to get to the other side of this situation; that this experience will add to my knowledge base about Max's medical needs. But, that doesn't make the day to day any easier.

Thinking About the Future

I know, it's been a while since I last posted; and it's not for lack of anything to say -- rather, I've been having trouble clarifying exactly what it is I WANT to say...does that make any sense? Much has been brewing these past few weeks, but I think the most pressing subject on my mind these days is pondering Max's future, and I'm not even thinking long term future either. I'm thinking in the next couple of years, when he's ready to transition to kindergarten. Will he be ready? Will he be able to attend a regular class? Will he have the confidence and positive outlook necessary to cope with being around kids who are bigger, faster and, well, typical.

I had a meeting with the school team this month to discuss Max's progress and set new goals for the upcoming year. Everyone was pleased with his progress thus far as he has met all of his goals and even exceeded some of them. I know this program is a good fit for him, but he can't stay in this classroom forever. In the fall, Max will begin attending the regular kindergarten class for a portion of the morning, with an aide. This will give us a better idea of whether or not he'll be ready for mainstreaming the following Fall. My concern for him is whether or not we'll be able to find an aide for him; someone who will treat him with respect and kindness.

I worry because I always...yes, always....feel as if I'm not doing enough. I worry because I feel responsible for his future happiness. I worry because I am the mother of a child with special needs. But, perhaps I worry simply because I am a mother.

Remembering Zoey

Four years ago today, our daughter, Zoey (Max's twin) passed away after 8 weeks, 4 days, 6 hours and 35 minutes. The following is a simple poem I wrote for her that is engraved on her marker.

Zoey's Gift

A precious little angel was sent from Heaven above,
To bless us with her presence and grace us with her love.

She was our little miracle, innocent and pure,
Who made a lasting impression that will forever endure.

My darling little daughter you have changed our lives forever,
And offered us your gift of life that we will always treasure.

Love,
Mommy and Daddy