My Sweet Emma Grace…
After my first two children, we were done.. we thought we had a complete family, not because they were monsters but 2 seemed like the perfect number. Then Emma Grace came. I remember vividly announcing Thanksgiving 2000 that I was pregnant again. I was happy and discontent at the same time, Elijah was only 5 months old and the thought of being pregnant that soon after him seriously freaked me out. I tallied up the months they would be apart, and then got freaked out even more. 2 infants in one house with 1 mama seemed so not in my realm of doing. I was insecure and unsteady as a mother, but it was happening despite my apprehension.
You can read the whole story here if you havent already but long and short of it is that Emma was born with many complications. She wasn’t expected to make it to birth, much less live past birth. Here she is, 6+ years later, going strong. After many diagnosis, a heart transplant, autism, and a Mitochondrial Disease, she has beat every odd the doctors placed in front of her.
I found this on my computer and wanted to share it with you. It is an interview that Children’s Miracle network did on Emma (with me) in October of 2002. I had forgotten many of the details mentioned in this interview like how she was tube fed for 21 hours a day or how she carried her feeding bags in a back pack and went everywhere we did, but many of them I remembered. She is such a precious precious gift from God.
Then, I went back through my blog and found this entry that I wrote. It will literally rip your heart out, but I just had to share it with you. It speaks to so many things that I am feeling right now, with my cancer and with her illness. I am so glad that my faith remains solid. I am so very thankful for that, and for my God.
Today is her IEP meeting. The last one I was overly prepared, mostly out of fear. She had never left my side, she had never spent 1 day without me, and those of you who have been long time readers will remember how hard it was for me to send her to school. A lot has changed since then, she is doing awesome in school, and she is learning so very much daily. But the fears are still there. She has overcome so many of her past issues, but they have been replaced with new ones. She is a very verbal child, but not in a communicative way. When she is frustrated she she rages, which is high on my list of discussion today. She has way over excelled in all of the goals we had in place last year, so we are going to set new goals. I am so very very proud of her and all that she has accomplished.
Yet at the same time I am so fearful that I am not doing enough, being enough, supporting enough. Especially since my cancer diagnosis, I find that I forget her schedule so very often lately, and that scares me to death.
I am so glad that I have a support system in place to remind me of things that I forget regarding her diagnosis and medications, yet I wish I could be on top of things like I was before. I listened to the clip from Children’s Miracle Network and I sounded so strong, so confident. I miss that part of me. I miss being that strong for her.
She is such an amazing child who brightens my life every single second that she is in it. I am amazed at all she has accomplished, despite the odds she has been up against, and I wonder if she understands what is going on with her body. It is all she has ever known. When she talks, it melts my heart. When she laughs, it makes me forget all of my problems and I focus a bit more on her joy and her zeal for life. I have learned oh so very much from this child, how to love life and live every moment to the fullest. She has taught me to laugh at myself, to love unconditionally and to fight like mad for every possible odd despite what the doctors say.
She is my gift, my Emma Grace and I love her so very much….
You make me smile, Please stay for awhile, Just take your time.
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I am so not brave..
So many times I will get comments that say “You are so brave, Heather!”.. And while I know that they are sincerely coming from peoples heart, I am so not brave. I have had circumstances in my life that I HAD to face, I had to have strength, and I had to fight like mad because the only other option meant death. That is so not bravery.
When I was pregnant with Emma, I had a choice. I could sink in a deep depression and hide (which I did, for about two weeks) and choose not to face it or I could fight like mad to save her, even though they gave her little hope. I chose option B, not because I am brave or strong… option A was too hard, too close to home. Option A meant death, and I chose life. I didn’t know at the time that I made the right choice, every doctor within talking distance spoke to me about letting her go when we were in ICU, but I felt in my heart that God wasn’t done with her yet, and I had made a promise to her in that little incubator in NICU. I promised I would fight for her as long as I could, and she could let me know when she was ready. And that is what I did and continue to do.
She did all the work. She beat all of the odds. She breathed on a ventilator for 4 months. She lasted through Transplant. She is learning despite the autism and battling through the mitochondrial disease.
I just supported her and loved her. Still do.
Then came cancer. I am still dealing with that. The emotions often hit me when I least expect it, in the grocery store or when I pick up my chemo from the pharmacy, or yesterday in the dentist office, sitting and watching my son play video games. If you could see me in my house, alone, you wouldn’t think I was strong. But I have children and a husband and they need me. I have parents who love me, and they need me. I have so many friends who call to support me and ask me if I am okay, you can ask them how brave I have been through this process. It has literally knocked the air right out of my chest.
But life cant stop. I cant stop. I still have children, and a husband that I love dearly. I chose them. I chose them when I was laying on the operating table, I choose them every time I pop that little chemo pill in my mouth.
I choose life.
Do I think my life is fair? My flesh doesn’t at all. My flesh wants to cry out and scream how unfair this is. But I am not my flesh. I really like how Sarah put it:
So life goes on, with bumps in the road that vary from pebbles to rocks to impassible boulders. I will get my share, and you will get yours, because somehow in His wisdom that’s what He has decided, and it’s not going to be any different until heaven. There the streets are paved with gold, no bumps allowed. It changes things, when I think about it. Maybe it is fair, after all. I live a life of less than a hundred years, occasionally dealing with hardship on varying levels, and then I transition to an eternity where there is no hardship, no tears, no hives. No, that’s definitely not fair. It’s way better than fair. I guess I don’t want my “fair” share after all.
Its way better than fair. It is way more than I deserve. It is so much more than I could have.
I could have been the mom who buried her child. I could have been the cancer patient that found out too late. I could have been the one…. you get my point.
Life is a funny creature, it comes at you from all directions- throwing things at you. Sometimes you see them coming from far away and have time to prepare for them, other times they sneak up on you and tap you on the shoulder. Either way, you make a choice. You choose to face what ever it throws at you head on, dealing with it now. Or you chose to bury your head in the sand and ignore the issue.
Its a choice. Its all in how you face it.
I choose to face it with Christ by my side, holding my hand all the way.
He is why I seem so brave.
We now have this light shining in our hearts, but we ourselves are like fragile clay jars containing this great treasure. This makes it clear that our great power is from God, not from ourselves.
-2 Corinthians 4:7 (NLT)
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