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.
I’m sure you get loads of advice, and I don’t want to presume to know what you go through with the diagnoses you and Emma have had. I did want to respond to something you said about Emma being very verbal but not communicative. My niece has developed a program for autistic children that has been shown to be very effective and has been adopted by several school districts. It is not expensive and can be used in conjunction with Emma’s school work. Here’s the link, I hope you find it helpful. http://www.precisionsongs.com/
Your story is such a beautiful example of the graces given to us when we simply desire to follow God’s will and not our own—even when it comes to a part of our life that might seem so easy, according to this world, to control–our fertility.
In your being open to the life of Emma Grace, mercifully given to you by God, her young life, her story, has ministered to many…but perhaps, most importantly, she has ministered to you.
God Bless,
Jane
Dear Heather,
You never seem to amaze me!!! Girl, you are such encouragement to me…I also dont know if you know about Noah’s diagnosis I think the website is http://www.homeschoolblogger.com/ourquiverfull her 2 yr old son was just diagnosed eith mitrocrodial like Emma Grace, if you could would you write her and encourage her? Noah is in the hospital now and he is really sick, she is due with their 8th baby next week, please say a prayer for them. Also our family is praying for you both, my daughter is autistic too and they are special gifts from God. You are a blessing to her as she is to you!!!
What a beautiful post…*hugs*
This is such a beautiful post Heather. Just reading and realizing that “Jesus doesn’t have all the answers, He is the answer”. I have only know you since June of 07, but it sure blesses me to know He has been your answer each and every day of Emma’s life, the One who brings you through. He gifted you with Emma as He gifted Emma with you. You are growing up together in Him. I admire your faith so much Heather and I think Emma is amazingly strong just like her mother.:)
Love and Blessings,
Laurie in Ca.
Oh, Heather, you are strong and amazing. The Lord picked you to be Emma Grace’s mommy because He knew what great things you could do. He knew that you would create the perfect world to help her grow and become an amazing girl. He said “this is the woman who will bring legions of believers to me through her journey”.
Never doubt you are a strong confident woman. Not everyone is strong enough to admit that they aren’t strong. They need to lean on the Lord. Look at the ministry you have here. All of these people who check in daily to see what inspirational testimony you have for the day. You are a gift to Emma Grace personally chosen by our loving Lord.
God Bless you Heather. You are a Gift to all of us!
Such a wonderful story of your love! 🙂
oh how I needed to read this today….
I don’t know how to thank you. I keep looking at the blog header, “hope is necessary in all circumstances” and it has encouraged me so much.
The words Please stay for a while, just take your time hit close to home. I asked the same and prayed the same.
God is working thru you. Your illness, your daughter’s life, none of it is a coincidence. It might take a while for you to go back to what was normal then, but God is using you right now. This moment ou are reaching out to many of us who have sat and cried and seen what Cancer can do. But I know what Cancer can do, the Lord can undo.
Yes you are brave! Because it takes energy and passion to keep on pressing.
And you are do just that.
Do not give up, the Lord will help you get through.
Many blessings to you and Emma Grace.
It was neat to hear your voice! I have an autistic son who is 4. God chooses us to be the parents of autistic children because he knows we are strong and we will appreciate how much of a gift to our life they are.
Heather, there is nothing more beautiful and precious than the love of a mother for her child. I admire how much you give of yourself to your children and how gracious and resilient you’ve been in the face of so much adversity.
Hi Heather,
I came across your blog recently and I have been reading your many posts… and it has taught me so much. you are definetly an encouragement to me… it’s so true it’s only God who gets us through tough times- he’s the giver of strength. You have amazing faith and determination… you are definietly making this life of yours count! 😀
Dear Heather, Thank you for sharing your heart and those beautiful, yet sad, thoughts about your precious, sweet little angel. Praying for you and your family ~
You’re so right, Heather. My heart DOES feel “ripped out”… but I’m so glad you shared that post too. I wouldn’t have missed reading it for the world.
Praying for you… praying for Emma… so grateful for both your lives.
God bless and keep you both~ Pearl
We still pray for you and Emma. I’m so grateful to be able to know you. I’d love one day to strengthen our friendship.
Hi Heather,It seems like Emma Grace is taking after her mom by being a strong and loving person as a child of God…thanks for sharing your story with us.Hugs, Baba
Thank you for sharing this beautiful and honest blog. You are EVERYTHING you need to be for your Emma Grace and exactly what God intended, even if you don’t feel the same as you did before your cancer. I love your past comment that your cancer was no surprise to God so your ability (or presumed lack of ability) to help Emma now is also no surprise to Him. He is holding you both in the palm of His hand.
I just went back and read all of the links in this last post. I had never read your account of Emma Grace’s story – when I first “met” you, it was because Kristen (my daughter) had been involved in your Christian mom’s network. I knew many were praying for Emma, and then became involved in your cancer story. What a road you have been on. I was thinking as I read your accounts that the internet has proven to be a huge blessing to you – as it is to all of us who keep in touch.
Kristen’s twins were born at 33 weeks, after much trauma and some fear – but lots of prayers from the blogging community. They are 3 weeks old Monday and are doing so great. Feisty named Emma and her middle name is Faith. The other one is Katherine Hope, or Kate. If you have a minute in your extremely busy life, come on over and see what God has done for us.
Hi Heather,
Oh, this was just incredible. I’m just so glad you still have your Emma Grace.
I went and read what Doug Sheets wrote, I didn’t know he lost a child? Hmmm, maybe this has something to do with his AWESOME ministry.
I will pass on what you shared to several moms I know that have lost their children to cancer.
If you get a chance, check out another little Emma Grace’s site. She’s with Jesus, but on what precious little girl she was.
(http://www.caringbridge.org/ar/emmagrace/)
Blessings to you Heather. I pray for you daily.
So glad that she is doing well and brings so much joy to your life. How did the IEP go? (This is the teacher in me asking)!!!
It’s such a blessing to see your love for your children shining through your posts. Thank you so much for sharing!
Hi Heather, I just came upon your site – I’ll be praying for you and Emma. I’m a special education teacher – so I understand how special Emma is. Diane
thank you for the audio links
it makes this even sweeter, to hear the compassion in your voice. Bless you both
However many years the LORD gives you, one more, 50 more…
A lot of great years is perfection, a few great years is better than a lot of bad ones.
Your children especially are blessed to have had you. 1 good year is worth more than a lifetime of selfish brokenness and crap. My mom was so awful. I forgave her, because I am awful too, and the Lord forgave me, so I have to forgive, but I hope you know, YOU ARE A WONDERFUL MOTHER.
Thank you for sharing your thoughts and feelings about Emma Grace. It is a wonderful story God is writing in your family’s history. Oh how your grandchildren will hear about the faith of their grandparents and all the times God brought you through!