Blog 4 CHD and Other Ways to Raise Awareness

You may have noticed a new button on my blog. My friend, Levi, started a blog dedicated to raising awareness about CHD. It is a place where we can all go and post our stories, our efforts at raising awareness, our struggles and our prayer requests. Plus, much much more. Please click on the button and register your blog today! Levi will set up your account and you will be able to author stories on the site.

Also, please check out http://1in100.org. My friend, Annamarie Saarinen began this organization and she is doing great things with CHD related legislation. The site is just now getting up and running, but please stay tuned for updates on her efforts in DC and in her home state of Minnesota. She is working hard to have newborn screening measures include Pulse Oximetry to detect complex (and fatal if not treated ASAP) CHDs. This 5 minute test SAVES LIVES. Please, have your newborn tested, even if there's not CHD history in your family. Insist upon it. Too many babies die needlessly because they were not given this test.

Lastly, my faithful readers, I implore you to truly join us in our fight. If you are not sure how to do this, please ask me. While we all work to try and figure out how to best combine our efforts and truly bring a strong, united front to CHD Awareness, we can all do our individual parts. Include a blurb about CHD on your email signature. Link your blog to mine or any other blog dedicated to raising awareness about CHD. Check out www.itsmyheart.org and consider starting a chapter in your area or joining if one already exists. Wear red all year long, but especially the week of 2/7/10-2/14/10. Purchase CHD Awareness apparel from www.cafepress.com or It's My Heart specifically. Awareness about Autism didn't start overnight, but in the past 7 yrs or so, it's reached astronomical levels. We can do this too. Our incidence is even higher than that of Autism, yet Autism is considered an epidemic and no one outside the CHD community knows a thing about CHD. You can help change this! Won't you please join us?

Not a Baby Anymore...

One day ... probably awhile ago ... when I wasn't looking, the craziest thing happened.

My baby disappeared.

In his place, is a little man, a toddler, a mover and shaker, a destroyer of nice furniture, a laughing ball of energy, a sweet little boy who gives hugs and kisses, an independent person who speaks his mind.

How did this happen?

Just today, Drew was fighting naptime, so I went in to snuggle with him for a minute and I realized how long and large he is. Standing up, he was nearly half my body size it seemed. Sitting down, at first, he wanted to play...so I put him back in his crib and he turned on the waterworks, so I picked him back up and he snuggled into me. His hair smelled so sweet and his soft skin was so kissable. I just held him for awhile, stroking his hair and feeling overwhelmed by my love for him. And it hit me. He's not my baby anymore. He's my little boy.

Yesterday, I think I had a glimpse into the future, but it didn't hit me until today. At dinner, he decided the highchair was soooo last week, and he would only sit in a regular chair

On his own

No booster seat

And he could see over the table

And eat

Just fine

WHAT?!

Then, this today. Can I stop time?!?! I have loved every age (well, the newborn stage and I had our battles, but I still loved snuggling with him and watching him become more and more alert), but I realized that I will NEVER get those times back with him. My biggest fear, as a Mom, is turning into that Mom...the one who can't let go. The one who smothers her child and doesn't let him spread his wings and grow.

Because I'm scared

That he will not need me anymore

And that, one day, he will leave us

But, that's good, right? That's what's supposed to happen! So, why fight it? Because my sweet little guy will one day rather hang out with friends than me? Because one day I will not be the only woman in his life, much less the main woman in his life? That's my issue, not his.

And so I must take on a new approach to my child growing up...

Happiness to see him laughing, learning, growing

Wonder at all the things he can do

Amazement at how much I love him and how blessed I am to have him

Gratefulness that he is here with us, healthy and happy ... and that God chose us to be his parents

Yes, it is bittersweet that my baby is growing up...but it is what is supposed to happen. I am supposed to mold him into a strong, loving, honorable young man...someone who is ready and able to take on the world, who has the courage of his conviction, who is ready to stand up for injustices and right wrongs. A man who loves the Lord and leans on Him for support. A man who honors his family ... both his family of origin and the family he will create one day (well, hopefully because I REALLY want to be a Grandma!!). And if I am so fortunate as to be able to do this job God has given me, and do it well, then that will be a blessing too.

The Next Phase ...

I haven't updated on this in awhile, and mostly, that's because there hasn't been any news. BUT, this week, that all changes. We finally got the go ahead from our insurance company to have Drew's blood drawn for his Chromosomal Microarray Analysis (CMA), the next step in our journey. For those of you new to the blog, we are trying to determine whether Drew has Noonan Syndrome, a single gene disorder that could explain his CHDs.

Here is a link to an article written nearly 3 yrs ago:
http://www.sciencedaily.com/releases/2007/03/070329092046.html

CMA has come a ways since then, but it remains only 5 yrs old and they are still working out the kinks. I believe the percentage has gone from 5%-12% to 5% to 25%. Meaning, they can successfully prove a single gene disorder in this percentage of cases. BUT, this does NOT mean that it rules it out if we get a negative result. So, yes, it's still kind of a crapshoot. And, of course, it is also highly likely that Drew's CHD are spontaneous and not genetic. For that matter, it is also possible that NS, should he have it, is spontaneous as well. But, should Drew have NS, he has a 50% chance of passing it on to his children...and should one of us have it, we face those same odds. We have already been advised to seek genetic counseling when we decide to have another child, as should Drew when he is ready for that chapter in his life. For these purposes, it would be nice to try and see if there is indeed a genetic reason behind all of this.

You would think this would make perfect sense to anyone hearing our son's story...his two CHDs, his multiple "congenital anomalies," and his EKG readings. To our Cardiologist, they all seem to point to NS or something similar to it. To our Geneticist, they are intriguing enough for him to want to follow up with Drew during his childhood, even if these tests don't prove anything one way or the other. To someone checking dollar signs, they need more "proof" than the word of the professionals before allowing us to attempt to rule something out, or prove it to be true. I am sorry if that seems cynical, but we've been dealing with this since July. It will be yet another month before we have our results and those might not even prove anything.

And so, I must call again upon the Serenity Prayer. Can I do anything about any of this? No. Does worrying about it help anyone? No. Do I know everything will still be OK, regardless of what these tests prove or don't prove? Yes. God is still God, He is still beside us, walking this journey with us. I have to trust in Him, even when it's hard, and lay my burdens at his feet. Even as they poke and prod my son, yet again, I know He is good. I might stumble and fall, but He will pick me up and carry me when I need Him too.

Psalm 121

1 I will lift up my eyes to the mountains;
From where shall my help come?
2 My help comes from the LORD,
Who made heaven and earth.
3 He will not allow your foot to slip;
He who keeps you will not slumber.
4 Behold, He who keeps Israel
Will neither slumber nor sleep.
5 The LORD is your keeper;
The LORD is your shade on your right hand.
6 The sun will not smite you by day,
Nor the moon by night.
7 The LORD will protect you from all evil;
He will keep your soul.
8 The LORD will guard your going out and your coming in
From this time forth and forever.

And something to remind of of this Christmas season ...

“But the angel said to her, "Do not be afraid, Mary, you have found favor with God. You will be with child and give birth to a son, and you are to give him the name Jesus. He will be great and will be called the Son of the Most High. The Lord God will give him the throne of his father David, and he will reign over the house of Jacob forever; his kingdom will never end.”
- Luke 1:30-33

How right it is for me to be mindful of Mary as I walk this journey with Drew. She suffered the ultimate loss, the death of her only son...my situation doesn't even compare. Mary accepted God's will in her life; and with an open heart, she welcomed Jesus into her womb. "Thy will, not my own, be done." She knew she would face potential ridicule, and yes, even death, as she was not married at the time of her conception...but she trusted in the Lord. And He took care of her. He had given to her a righteous man, Joseph, who loved her and allowed God into his heart as well. Mary was truly a blessed woman, and yet she suffered a great deal in her lifetime. She is the ultimate example of a mother and of allowing God's will to be done, instead of constantly attempting to force our own desires.

Like My New Look?

It's all thanks to a new, and very special, Heart Mom friend. She has graciously volunteered her time to make Brownie Bites (so silly, but I love that name) look fantastic. We will soon have a new font style as well. I could not be more pleased with how this is turning out! Thank you SOOOO much!!!

Today was our bake sale at CHM. We did fairly well! Moreover, we were able to put our faces to our names (and comfort bags), speak with the medical staff, patients and were even blessed enough to meet a new heart family. Please keep them in your prayers. Their son has been at CHM for about 8 weeks, following an arterial switch procedure, and his recovery has been anything but smooth sailing. He is a precious little man, as I had the privilege of seeing him up on the floor today. His parents are weary, as you might expect, and scared. Pray that God stays close to their sides and holds them up during this time. That He gives them the strength to endure these trials and that their sweet little man is soon on his way to recovery...and home!!!!

I feel so honored to be able to do what I do. Tomorrow, it's off to Mott to deliver more Comfort Bags. I am so STINKIN' excited!!! I get so giddy about this type of stuff. :) Then, we're supposed to pick up Drew's Christmas pics ... but I can't find our information (whoops), so I don't know how that's going to work out exactly.

Christmas is fast approaching! I have wrapped up all my Thirty-One parties and am preparing for 2010 now. We are doing all the last minute shopping that needs to be done and starting to wrap. All of Drew's presents have been wrapped and placed under the tree (which is being guarded by a playpen type thing since Drew decided the lights looked tasty one day) and our house is quite festive looking! Of course, the most important reason for the season has not been forgotten in all our hustle and bustle. Drew likes to hug our Nativity Scene (it's all one piece) and we read about Baby Jesus and sing Christian Christmas songs about his birth. We have the honor of seeing his cousin, Maddie, perform with the Children's Choir on Christmas Eve as we will be visiting with Bill's family during the holidays this year. We will also hopefully be doing family pictures while there, as well as pictures with my family once we return.

I am sure I will be on here before then, but Merry Christmas in advance and Happy Hanukkah to all my Jewish friends!

Shortcomings

My original title for this post was "Failings," but that has such a negative connotation, doesn't it? So, I changed it.

I write a lot about my life being more fulfilled now than ever before. And this is true. But, I would be remiss if I didn't mention the fact that I struggle in a couple of areas. And through my shortcomings, I let down both myself and those close to me.

There are two main areas in which I need to improve ~

Taking time out for ME

and

Making time for my friends and extended family

Carving out time for myself used to be easy...pre Drew. I didn't have as much of an issue leaving Bill to go walking, or read upstairs, visit with friends, or what have you. But since Drew, I feel like I should be cherishing every moment I have with him. First of all, because I am fortunate enough to have him here, healthy and happy, but also because he will grow up before I know it and I will be mad at myself for missing out on my time with him. What I am realizing, however, is that I need to replenish my well in order to be the kind of Mom Drew deserves. I can't just run on fumes and be that type of Mom. And so, I must schedule time to work out, to sit and relax (I am serious), and to go out and have fun. Most of my "going out time" now revolves around IMH and/or Thirty-One. Don't get me wrong, I truly love my time with both organizations, but I need "Mary time" too. I am sure many of the Moms reading this are laughing to themselves...and they're right...what is "me time" anyway? Most of us Moms barely have time to go to the bathroom without our sweet angels busting in on us, a look of pride coming over their faces as they yell out "Momma" and rush to hug us as we, ahem, take care of business. But, it's important that we carve out even just 5 minutes for ourselves daily. This is a big shortcoming for me...and one I must improve upon to be the kind of person my friends and family need in their lives

Making time for my friends and extended family ...phew. I have MAJOR shortcomings when it comes to this. I am afraid to admit how bad I have been with this lately. I see the phone as a business tool, and so I don't really use it outside of that anymore. A lot of my day to day communication with friends and family revolves emailing or texting. How freaking impersonal is that?!? But it is what it is. I know that many of us are busy, and this seems a logical choice to get a message out or an "I'm thinking of you" when what they need is a phone call, a trip to get coffee, something more personal. I have become so focused on my immediate, my core, family that I often overlook my extended family and friends. And that is unfortunate...and unfair. I feel like for all the good I do, if I am not giving back to those who are important to me, it's all for nothing. So, this is something I MUST improve upon. And hopefully, by creating more time for me to regroup and reenergize, this will come naturally.

And there you have it ... my struggles and shortcomings. I think in order to know where we want to go and what we want to see happen in our lives, we need to know what we need to do to get there. I cannot be successful with IMH, raising CHD Awareness, being a wife and mom, or my business if I do not replenish my well or support those who support me. Plain and simple.

Praise You In This Storm

Not sure why this song has been in my head lately, as I feel like I am now on the other side of my latest "storm." But, perhaps one of you is going through your own "storm." If so, this is for you.

PS: I love the verse taken from the Bible that I have bolded. I hope you enjoy the link to the song on You Tube and the lyrics as much as I do!

Praise You in this Storm

(Casting Crowns)

I was sure by now

God You would have reached down

And wiped our tears away

Stepped in and saved the day

But once again, I say "Amen",

and it's still raining

As the thunder rolls

I barely hear Your whisper through the rain

"I'm with you"

And as Your mercy falls

I raise my hands and praise the God

who gives

And takes away

And I'll praise You in this storm

And I will lift my hands

For You are who You are

No matter where I am

And every tear I've cried

You hold in Your hand

You never left my side

And though my heart is torn

I will praise You in this storm

I remember whenI stumbled in the wind

You heard my cry to you

And you raised me up again

My strength is almost gone

How can I carry on

If I can't find You

But as the thunder rolls

I barely hear You whisper through the rain

"I'm with you"

And as Your mercy falls

I raise my hands and praise the God who gives

And takes away

And I'll praise You in this storm

And I will lift my hands

For You are who You are

No matter where I am

And every tear I've cried

You hold in Your hand

You never left my side

And though my heart is torn

I will praise You in this storm

I lift my eyes unto the hills

Where does my help come from?

My help comes from the Lord

The Maker of Heaven and Earth

http://www.youtube.com/watch?v=uHdcyue0bSw

Busy Busy Busy

... and loving every second of it.

I have never in my life felt so fulfilled as I do now. I truly feel that God has blessed me with my crazy, hectic life in order to ground me and keep me focused on His will in my life. Now, one can never be certain of all God has planned for him or her, but if we allow God into our hearts and our lives, it makes the senseless worrying all for nothing. (OK, disclaimer, I am still a worrywart and a control freak at heart...but I pray on it now...and it does help)

When Drew was first diagnosed with his CHDs, I felt hopeless, helpless, guilty. I felt a tremendous sense of grief and panic. Fear that we may lose our son. Guilt that I had somehow failed him during my pregnancy. Helpless because there wasn't a darn thing I could do to change this for him. I also felt alone. My heart cried out to God, and in my mental state, I didn't hear His response. I was lost in my world of "why?" Why me? Why my son? Why this? Why now? Why? Why? Why? I had done everything "right," so WHY GOD WHY? As you can imagine, it was a very dark place...and it got progressively darker until I said "enough." God is leading you to this...what is His plan?

And so I thought (or, as Pinky Dinky Doo would sing ... "I think and think and think and think...and suddenly I know!") and came to the conclusion that God doesn't do things "just because." He had some higher purpose for me (and Drew) in all of this. And in order to see that, I needed to set my grief, fear and worrying to the side and focus on what that might be.

As I began to research CHD and joined a support board for parents of children with CHD, I was appalled at the lack of funding, the high incidence and the lack of general knowledge about it, and the way I had to search and search to find organizations. I was saddened that this information wasn't readily available to all parents, that they had to go searching for it, and that there are sites out there that have only scary and badly outdated information. I began to see a path clearing before me...I needed to do something to make sense out of this road we were traveling. I needed to give back. I needed to spread hope. I needed to create awareness...first in my small circle, and then everywhere I went. I became obsessed with teaching others, starting with my own family. I felt the need to reach out to other heart families, to take on the fight in the name of the warriors turned angels and to give my son's struggles meaning. I wanted him to grow into a man who was proud of his special, mended heart. Who had a generous heart and a genuine concern for others. And the best way to teach this is to live it myself.

I truly feel that, because I allowed God to speak to me in the midst of my darkest moments, He pulled me from the darkness and had blessed me more than I could've ever imagined. I am able to stay at home with Drew, yet bring in income, something that both pleases me greatly and in which I take great pride. I am able to reach out to others and, in even the smallest way, offer them a glimmer of hope. I am lucky enough to receive multiple daily hugs, smiles and kisses from my lovable, squeezable, adorable little man. I am incredibly blessed to have a supportive husband, who wants whatever makes me happy and fulfills my heart's desires. I have the support of my incredible friends and a loving family, who are always there for me and who have joined me in my journey. And, I have made some pretty awesome new friends along the way. Friends who will be in my life for many years to come. Friends who "get" me. Amazing, strong, beautiful friends...some of whom have angels here on earth and some have angels in Heaven. My life has been forever changed by this journey.

Back to my original thought - my life is incredibly busy these days...busier than it would've been had I not chosen this path. Somedays I don't even know where to start and feel extremely overwhelmed. But even in my most stressful moments, I remember the blessings in my life...number one, that my son is still here with us...and that helps me focus and move forward.