This past Saturday was the first annual Hearts and Heroes picnic. This picnic was put on by the HeartCenter at Children’s Medical Center. All children who had heart surgery in the last two years were invited. I was honored to sit on the committeefor this event due to my participation in Mended Little Hearts of Dallas. The Heart Center staff worked tirelessly to make this a fun event forthe heart heroes and their families. We could not have asked for a more gorgeous day on Saturday. We got everything ready to go onSaturday morning and began welcoming some familiar faces to the picnic. This is where things got interestingfor my little family….
You see, Emma does not care to be around a lot of people,especially people she does not know. But, before I get into the details of Emma’s picnic experience, let megive you a few examples of what the title of this blog is all about….
Truth: Emma is two and is not mobile in any way(not crawling, scooting, walking, etc.
My Perspective: Emma spent a year of her lifefrom birth on in the hospital. Emma suffered with hypoxia (low oxygen levels) for a long time and beingintubated for ½ a year. EMMA ISALIVE!
Truth: Emma becomes easily overwhelmed withpeople and situations in
which she is unfamiliar therefore, sheshuts down and cries a lot.
My Perspective: Emma has been poked and prodded on her entire life, but nowthat she has been away from the hospital for awhile she prefers her bubble thatwe live in most of the year therefore, anything outside of that is scary toher.
Truth: Emma is classified extremelydevelopmentally delayed.
My Perspective: Emma is a happy little girlwho has been through more in her little life than most will go through in theirentire lifetime. No, she is not a“normal” two-year-old. In fact, Iwas reminded on Saturday that she is really behind in heart kiddo standards aswell. However, I am trying my hardestto not put Emma in a box.
Truth: It is EXTREMELY hard to watch Emma not enjoyingthings that I think children her age should be enjoying.
Truth: Emma becomes easily overwhelmed withpeople and situations in
which she is unfamiliar therefore, sheshuts down and cries a lot.
My Perspective: Emma has been poked and prodded on her entire life, but nowthat she has been away from the hospital for awhile she prefers her bubble thatwe live in most of the year therefore, anything outside of that is scary toher.
Truth: Emma is classified extremelydevelopmentally delayed.
My Perspective: Emma is a happy little girlwho has been through more in her little life than most will go through in theirentire lifetime. No, she is not a“normal” two-year-old. In fact, Iwas reminded on Saturday that she is really behind in heart kiddo standards aswell. However, I am trying my hardestto not put Emma in a box.
Truth: It is EXTREMELY hard to watch Emma not enjoyingthings that I think children her age should be enjoying.
My Perspective: I fight the urge to push her to "like" situations that I think she should like. I want normal for her. I want her to enjoy the same activities that other two-year-olds enjoy. Running around acting crazy....I fight this inward battle on a daily basis.
So, back to the picnic. Emma recognized a few people and gave them smiles; however, the outdoors made her allergies act crazy. She did not enjoy the windy weather. She did not enjoy all of the people coming up and trying to touch her. Emma broke down and cried and cried. She wanted her mommy and I was trying to run the Mended Little Hearts table. All of those factors made for a very cranky baby (come to find out she is also cutting two molars). She did not get her picture taken for the Heart Center bulletin board or put her sweet little thumb print on the painting. She did not play games, or run around playing with the other kids. If I am being honest, this was hard to watch. I can make excuses all day and say that it doesn't bother me, but it does. I am working on these thoughts. I am working on accepting Emma for who she is....having no unrealistic expectations...and being truly thankful of who she is today because you see, as soon as she got home she started smiling, laughing, and being the sweet natured little girl that we love so deeply. And more importantly, Emma is HERE!
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| My little family at the Hearts and Heroes Picnic |
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| MLH of Dallas Coordinators at our table |
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| This CMC Heart Team is Phenomenal! They gave of their time to show these kiddos how important they are. |
Thank you all for being a part of this journey with us. Thank you for bearing with me as I learn how to live our new normal. Bear with me if I act frustrated or disappointed in situations in which we are around "normal" kiddos and Emma is not able to participate. Pray for us to embrace Emma for who she is, and what she is able to do.
As always, God is Good! All the Time! All the Time, God is Good!
Romans 12:12 Rejoice in hope, be patient in tribulation, be constant in prayer.
Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. Matt 6:34 NIV
I can do all this through him who gives me strength. Phil 4:13 NIV
Those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 40:31 NIV
Romans 12:12 Rejoice in hope, be patient in tribulation, be constant in prayer.
Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. Matt 6:34 NIV
I can do all this through him who gives me strength. Phil 4:13 NIV
Those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 40:31 NIV
Some Prayer Requests:
1. Emma is still dealing with significant pulmonary issues and will see the pulmonologist on April 16th.
2. Emma will get her scoliosis brace on April 16th as well barring her pulmonary issues subside.
3. Emma is not participating well in therapy, so we will be trying new tactics to get her want to participate properly.
4. Emma will see her cardiologist and nephrologist this month as well.
5. Pray for all of our other heart buddies fighting their battle on a daily basis.
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| See, here is that sweet smile. |
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| Emma's Heart Hero Cape! |
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| Emma in her cape and picnic shirt. She is happy, happy, happy now that she is in her environment. |
Sarah, I have read your blog many times over the last year, I think the love and support that you always have for Emma is awesome. Keep your head up and know that I am here, in your corner, praying for you, your husband, Emma, and the rest of the family... xoxo
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ReplyDeleteOur hearts, and thousands of others, accompany you three on this amazing journey God has set before you. The way is steep and challenging, but the blessings you are sharing, often without realizing it, are a testimony that "God is, and He is a rewarder of those who diligently seek Him."
Certainly God's love and His hope shine through every Miss Emma smile, blessing us all. And the devotion you two show for her is inspiring.
You three are doing an amazing job.
Thank you for being so honest and open about your life. God has given you a ministry to other families that are struggling and feeling "different". I truly believe that most families struggle, but most of them try to avoid being honest about their struggles. Few children have to go through what your precious Emma has gone through. Few parents have to watch their child suffer as much as Emma has. Knowing that Emma has more suffering in her future has to be SO hard on you. Through your tears and worries (yes, I believe that Christians worry and that God understands) you still "keep on keeping on" as you live a transparent life while keeping Emma's world as she needs it to be. If anyone ever had a right to have "post-traumatic stress", it is Emma. You, Scott and your families qualify, too. You all show Emma great respect and compassion by understanding that she simply can't handle certain situations at this time in her life. We know how hard it is to be the parents of children who are "different", physically, emotionally and/or behaviorally/developmentally. Though those children bring great blessings, as all children do, other people don't always get a chance to see who your children really are when they are in their home environment and aren't stressed. Many people understand some of what you are going through, though most won't be honest enough to share their feelings, as you have done so well. I would be happy to share more with you privately, but wanted to use this public forum to give you a pat on the back and an "atta girl" for being such a good steward of the beautiful blessing who is Emma. Thank you for sharing her and your little family with fellow strugglers. God has given you a ministry. You are being a good and faithful servant. He must be SO very proud of you and Scott! With great love, respect and admiration, Kathy Gandy
ReplyDeleteMiss Sarah: In an odd way, your blog hit home for me! I think all parents compare their children with other children, and I have been guilty of that lately. While our situations are different, we can both be thankful that God gave us the children we have so that we could parent them with the wisdom He gives. Thanks for reminding me of that! Emma's smile is the best! ~Allyson McElroy (Stacey's friend since PreK)
ReplyDelete"No trial has seized you except what is common to man. And God is faithful, he will not let you be tried beyond what you can bear. But when you are tried, he will also provide a way out so that you can stand up under it." 1 Cor. 10:13
ReplyDeleteGod knows you are the best parents Emma could have to help her. He will give you strength.
Malinda Patterson
Southwest C of C
My heart and prayers go out to you all. Emma is a unique and precious gift from God! Love her as such and don't let others try to put her in a box or compare her to "normalcy". What is normal anyway? God creates us all in a special way to honor Him. I see wonderful God moments occuring all around and in you in the blogs and pictures that are shared...and I'm sure there are many more that are not shared or seem to go unnoticed. God is doing amazing things in and through your precious Emma and though I have never walked in your shoes and do not know the struggles you face, I know our God does and He will never leave your side! Praying God's blessings continue to cover you and your family!
ReplyDeleteSarah, your words always touch my heart. Not only because I have watched you & Scott from that first day meeting you in the wee morning hours in the CVICU "kitchen" when all of us moms were eating our breakfast and sharing our stories. Even though our babies share the same diagnosis, their journeys have been very different and I want you to know that Emma is a perfect "two" year old not only in God's eyes but in mine as well! We all love her just the way she is & I never have doubted that she is EXACTLY where God meant for her to be, a daughter to two of the strongest people I know! Heart Hugs mama!!!
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