Wednesday, January 2, 2013

where did December go?

In the blink of an eye, just like that, December is gone. In all honesty, December was a bit of a blur!  For the past 5 months, we anticipated Leo going through surgery and for the past month, preparing for it consumed a lot of our time. Now that Leo is 12 days post-surgery, things are finally back to feeling normal.  Which brings me time to do a little December recap on 9 month old Leo.

First a little developmental recap -- Leo has really proven himself this past month. He has gone from a struggling to a confident "sitter", even if for a few moments before he tumbles over. He pushes himself up to "all fours" (hands and knees) and rocks, so he is really gearing up to take steps toward crawling. He still loves to bear weight on his legs and will hold on to toys in a standing position (with assistance) for a minute or two before tiring to fall.  His upper body strength has always been weaker but for some reason, he has really gotten stronger this past month.  Maybe it's that he's worked so hard in physical therapy, or maybe it's timing where he is just starting to catch up. Either way, we're so very proud of how he pushes himself and how far he has come!  Verbally, he's been blowing raspberries this past month and is adding "mamama" a little more often.

For the rest of my recap, I began to type this three days ago and at this point I think I've rewritten it about 5 times.  In part, because I've had many interruptions. But also in part, what I wanted you to read was not initially coming out onto the keyboard. In the past several months, giving a recap of what Leo's been up to has almost been a rundown of the many appointments, new diagnoses, or other obstacles he has been working through. But in truth, December came to mean a lot more than that to me.

The quick and dirty medical recap would say Leo had about 15 appointments in December, spent time being sick and on four consecutive rounds of antibiotics, had surgery on December 20th for the obstructive apnea, post-surgery caught a virus that led to pneumonia, became dehydrated, was readmitted to the hospital so that we spent both Christmas Eve and Christmas day hospitalized, continued to struggle with recovery for several days after coming home, but now is doing great.  I could have shared with you all the original details that I typed which extended the explanation of everything into about seven more paragraphs!  But again, there are so many more meaningful things I am taking away from December in my heart that I would rather share.

Until this past month, I had no clue what other families in our DS community (or any family, for that matter) went through to prepare for, go through, and recover from surgery with a child. I was one of the ones who sent my prayers beforehand, asked how the child was afterward, and went on about my business.  I now have a new level of appreciation for, and compassion for, all that parents do for their children under these circumstances.

I've come to realize that complications like sensitivity to morphine, dsats (drops in oxygen saturation levels) due to inflammation or respiratory illness, resistance to eating when the throat is sore, and dehydration are common to infants or children with DS.  Likewise, Leo has shown that a fighting spirit and a sense of normalcy are just as common.  For example, even while on oxygen, heart monitoring, with an IV in his arm, and running a fever, he still insisted on having tummy time in his hospital bed. Even when he felt his worst I was amazed by his spirit. How he wanted to turn over, move around, and even play for short periods of time!

I have to be honest - when Leo was admitted to the hospital on Christmas Eve my heart sank. My first thoughts were about our 3 year old at home, how it wasn't fair that I wasn't there to make cookies for Santa and have Santa's gifts ready for when he woke up Christmas morning.  The stockings weren't yet hung by the chimney with care, and a lot of things were left completely undone.  As hard as I tried, I did not have every little detail of Christmas completely done prior to Leo's surgery. I thought I would have time afterward, but I was wrong. I also thought about our 14 year old daughter and how I wanted to be at home when she opened Christmas gifts, yet it would be so unfair to have her wait. All my little traditions that I had carefully built over the years and the perfect Christmas morning we would always have had been torn away right before my eyes.

I quickly learned of so many other friends who have been through the same thing - DS or no DS, families who had at one time or another spent Christmas with a child in the hospital. That's when I told myself if they could survive it, so could we!  I also learned.... Santa could wait and come later after mom and Leo came home, he was fine with that.  He had done it before for other families and would do it for us.  Allowing a 3 year old to open gifts just from grandparents on Christmas morning was enough to bring the biggest joy to him.  He didn't need to open all those other gifts afterall!  Knowing that there were gifts still left under the tree to by opened by our 14 year old was actually exciting to her and she enjoyed having Christmas spread out over a few days instead of finished by 9:00 am on Christmas morning. Volunteers at the Children's Hospital who delivered gifts to all three of our children on Christmas day in Leo's hospital room inspired our family to want to be a part of that joy for other families next Christmas.  Ordering room service from the hospital cafeteria could be fun because it became our "Christmas Feast", per Seth, and a wonderful meal to enjoy together as a family. 

But the Number One thing I learned... is that when you have a sick child, all time stands still and nothing else matters... not even Christmas.  Having our family together in one room was holiday enough, traditions went out the window, and even in the eyes of a toddler and a teenager there is complete understanding that the focus needed to be on Leo. This Christmas reminded me of what truly matters, and that was definitely not the wrapping paper, the gifts, the filled stockings, the traditions, nor the perfect Christmas Eve meal. It was simply being together.

As I reflect on all that I've shared with those who read my blog over the past year, I hope you take away one thing.  Not that Down Syndrome is a burden, not that having a child with special needs is a chore, but that no matter who your child is and what their needs are, you just rise to the occasion as a parent. Not as a supermom, not because you were the chosen one for this special child, but just because that is all any good parent would do out of love for their child.  From there, everything else just manages to fall into place.

I can't wait to see what Leo has in store for us in 2013. I know there will be some trials (because with any kids, there just are...), but I also know there will be immeasureable joy!

Happy New Year to each and every one of you.

with love,

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