Tuesday, February 05, 2008

Patience

"My heart...
My soul...
My life...
My darling Paige...
Together, we have no limits"

This is the note that I placed on Paige's incubator when she was born so critically ill. I wanted her to know that I have no limits when it comes to mothering my children, that I will always be there for them, and that together, we can get through anything.

I remember them telling me as they intubated her over and over again, that she was "tired" and I would become so frustrated - how could she be tired, she was a newborn...how could she be tired of living and breathing already?

I spent a lot of hours with my face inside the little round portal that allowed me a glimpse of my newborn baby - I would talk to her and sing to her, and reach for her hand, one of the only parts of her body that was not covered in medical equipment.

Over and over, I promised her patience - that I could wait for her to be o.k. - that if she needed more time to heal and to grow, I was right there beside her, cheering her on.

And, as the story goes, grow she did - into a beautiful young lady of nearly 11 now.

One of the difficult things I struggle with is the knowledge that I am the mom of a child that would be considered "medically fragile."

I don't much like that role; I'd much rather just be Dakotah and Paige's mom...

Because admitting that my child is medically fragile, and by all accounts, really is, puts me into some sort of weird superhero category that I don't really deserve or want

She was hospitalized nearly a hundred times in her first years of life, with 20 surgeries under her belt before her 5th birthday.

Somehow, that makes me a person to be admired and respected - someone who has bravely gone through a lot, sometimes too much...

But, I'm not that at all. Not at all. I am no more special or brave or any of those other things than any other mother.

I also don't ever want to be held up as the example of how "tough" it can be to have a child with Down syndrome - because it certainly has been one of the greatest blessings of my life, and I am so, so grateful to God for haven given me the opportunity.

These last months, where Paige has been in a full body cast, have been hard on me sometimes. Admittedly, I've had quite a few moments when I have had to remind myself to be patient, that this isn't a race through life, but rather a journey with many paths, each one offering up beauty and lessons if we open ourselves to them.

Other than her first year of birth, when I thankfully had no idea what lay ahead of us as far as medical issues, this has been the longest lasting medical problem we have dealt with. Paige has been in a cast for nearly 5 months.

During that time, I've had to adjust and re-adjust, and then re-adjust again - her schedule, her school, my job, our lives, everything has been affected by this.

And...the reality is, we won't even know if this has been successful until the cast is off, until she tries to walk again. We may very well be facing this all over again in her other hip; we may have to face the reality that she will not ever fully recover from these problems.

So, my heart has been heavy at times, and I have felt very defeated sometimes.

I have a newfound compassion for people such as Tammy, Parker's Mom, and Pam, Rhett's Mom, whose children have been chronically ill, and who's lives have been tumbled upsidedown because of it.

My friend, Melissa, who's daughter has a fatal condition, loves unconditionally, and tirelessly, with the knowledge that Bella is not going to get better.

This morning, I read the news that a very nice person, who's daughter with T21 died at 18 months, has now learned that her five-year-old son has a cancerous brain tumor.

I am not worthy of these brave people who's lives I've been so lucky to learn about. I cannot even comprehend walking in their footsteps for a day.

But, if I were able to, I'd follow along behind and lighten the load as best I could.

And as I walked behind them, I'd remind myself of some very wise words from my friend, Nicole...to "get over myself"

The world is such a beautiful place - and I am grateful to be a part of such a glorious community of friends.



6 comments:

Pam said...

Oh Betsy, I sure love you, and I look up to YOU.

You are amazing, and always find the best in things, and I just bitch alot!!! ;)
(Can I say that on here?!?!?)

Anyways, You are doing great and you are a huge inspiration to me.

((HUGS))

Pam and Rhett

Megan said...

Besty - you are truly an ispiration. Your words and your actions are always so beautiful. I love that you write for all of us to see.

Megan
Abby's mommy

beaner'nmom said...

hi Betsy, can you please email me at awesomeangel@shaw.ca as I'd like to ask you some questions. Thanks for sharing Paige's story with us. My daughter Angel is 11 and her website addy is www.members.shaw.ca/awesomeangel.

many thanks,
Angel's mom Cheryl

Nicole said...

I love you honey. You are in my prayers to get through this tough time. And I certainly NEVER would have to tell you to get over yourself. LOL I wish I was near by so we could share some tea...or tequila. :)

Debbie said...

I've just found your blog and these posts made me cry, a good healthy cry though. My daughter has T9 and is considered medically fragile as well, although her spirit is certainly strong, which in turn gives me strength. You're right--together, we have no limits!

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