We had a visit to Shriner's today. We were supposed to be picking up new braces. On our last visit, we had discussed Ellie's tendency to lose her balance and fall frequently.
After 3 hours of thorough evaluations, it was determined she could us a butress on her shoe to hold her ankle in place. (She has severe pronation on one foot, and she already wears a lift on her other shoe.)
Ellie has been excited about her new braces. Everytime she gets new braces, she chooses a new color for her straps. She was ready for her new braces with the red straps.
Then, they brought in her new shoe.
She was a good patient and let the orthotics tech put it on without complaint.
Finally, we could leave.
I took Ellie to the restroom to complete the catheter process.
She sat on the toilet
.......and began to cry.
She said, "But, Mama, I'm going to be the only one who wears a shoe with this."
I tried to talk to her, but she couldn't hear it.
She could only see that she was different.
I had sent my nephew Joshua, my soon to be DIL Casie, and Josie-Tatum to the van. Ellie and I were leaving the hospital together, just the two of us. I reached for her hand, and she asked, "Mama, will you walk in front of me."
My sweet Ellie:
Who loves to be the center of attention:
Didn't want anyone to see her.
Did you feel my heart break?
Of course, I had to be the big girl. I couldn't cry or let her know, at that moment, how bad my heart was aching. And, since words of wisdom failed me, I simply walked on, with Ellie trailing behind, tears quietly running down her cheeks. We went to eat at one of her favorite restaurants, and when we all climbed out of the van, she repeated her request. "Can I walk behind somebody?"
We've not been home long, and I've not had time to truly process all of this. I will admit the tears that are beginning to flow now, that the girls are in bed, and I can begin to sort through my own feelings.
Please pray for her, as I know you will. Please pray that God can speak to her heart, when her Mama doesn't have words. And, today, I don't have words. At this moment, I can't think of scripture or even what I might say to her tomorrow.
But, as you are praying, if you hear a word from the LORD, would you share it with me?
I know my Jesus died that she might have life, and have it more abundantly. I know He is the truth, the way, and the life. I know He has a perfect answer for this disheartened mommy.
Love to you, my faithful prayer warriors,
Robbie
16 comments:
Oh Robbie -
I can feel your momma's pain.
I will definitely be praying for Ellie and for you too.
What a wonderful momma you are!!
Blessings and {{HUGS}}
Cathy
Robbie,
As a mom of a little 4 year old boy with spina bifida, this also breaks my heart. While my Casey hasn't expressed himself to that extent, he does say things like, when I am big I will walk like _____(insert any friend or cousin's name). I know he envisions himself walking just like them with out braces or a walker and that will not be possible without divine intervenion from God. Sometime there are words that come and other times I have nothing, just like you did today. I have to remind myself that God has a plan, and it started long ago. His plan does not include our children being just like everyone else. They ARE different. Not just physically, (although I truly believe their physical difference is molding them into the strong-willed, faithful, ever-loving children they are) but they are spiritually different. Through each of these trials they are growing into the young people that will one day make a difference in our world but more importantly in the kingdom of heaven. God has equiped our children with prayer warriors to support His cause and these sweet children of ours are certain to help Him fulfill the plan. I'm sure God will place the perfect words on your lips right when you need them. In the meantime, just continue to hold that precious little girl's hand and love her with all your heart. Sometimes it's not the words we need but the quiet listening heart and the hand to hold as we get through difficult times until that rainbow appears on the horizon once again...as it always does. Many hugs for you across the way tonight and prayers for a brighter day tomorrow!
Dawn Hubbard
Robbie my dear, I know you don't know me but I feel I should share this scripture with you. Psalm 139 God knit her together perfectly with the Masters Hands! She is perfect in His eyes, I know this is hard but know He is holding you and walking right along side your sweet Ellie! What a beautiful daughter you have.
He also gave me Jeremiah 29:11 He knows the plans, not to harm her, to give her HOPE and a future. Her future may not look like what everyone expects it to, but know her future will be built on His love and faithfulness in providing a loving family to her, one that will comfort her and lift her up to The Healing hands of The Father in times like these.
I will be praying for you both. God can heal her tender heart. Just give her confidence and tell her that she is uniquely made because God intended her to be uniquely His. She is BEAUTIFUL no matter what! I will be praying for you. I hope this gives you some encouragement.
Blessings and love,
Tammy
Dear Robbie,
I hear your heart. And I know exactly what you are dealing with. We have had many days like this over the years and they do not get easier. And the words do not come easier either. When our children are hurting, we hurt too.
Like the previous poster, I would give you Jeremiah 29:11. That is my India's life verse and it is included in her graduation announcements.
The second quote on her announcement says "Why, sometimes I have believed as many as six impossible things before breakfast." This was said by Alice in "Through the Looking Glass" and is India's other life quote. I believe these quotes really define my girl when she is filled with faith and promise. But there are many days when she is so sick and hurting and wants to just be like other girls. Some days she is ok with being "special" but there are many days when just is tired of it all. Some days "impossible" just seems TOO impossible. It is those days that a mama just has to hold her daughter, let her cry, and then point her right back to Jesus.
We are in the trenches with you. Ellie is a blessing and you are too.
Please know that Ellie will always be in our hearts and prayers. Lifting you up during this time of struggle. (((hugs)))
Robbie my heart is breaking with you sister. I'm praying for Ellie, and you. I'm praying that the Lord will build Christ esteem into Ellie, He has already knit her together perfectly. I'm praying that she see herself as His choosen daughter, and to understand how He called her name out before the foundation of the world and has a purpose for her, for his kingdom, that only she can do....She's on a mission! In a world that talks so much about self esteem, Christ esteem far surpasses it! Lord Jesus, write your word on Ellies heart...I pray that she understand that She can do All Things through Christ who gives to her strength!!! Amen. And be with Momma and give to her peace in her heart. Holy Spirit comfort her and give to her wisdom beyond her own understanding, In Jesus Name! Amen.
Yes, Robbie, I will pray! I will pray God gives you wisdom and discernment and the words you need for your Ellie and that He gives Ellie everything she needs right now and everyday in her future!
Hugs,
Tammy
I know Ellie's pain so well; it's simply so hard being different, and at her age, I wanted more than anything to be like everyone else and to not have spina bifida; I wanted to conform, to not stand out, to not carry the burden of physical limitations. But Romans 12:2 says, "Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God's will is - His good, pleasing, and perfect will." We're not supposed to conform! Instead, we're called to radically change our attitude and approach our circumstances in life with a totally new mindset. Spina bifida is referred to as a birth "defect", but God made no mistake with Ellie or with me. We may have been born with holes in our spines, but we are fearfully and wonderfully made - God crafted our bodies perfectly according to His will and we were created to fulfill the unique plans He has for us. Ellie isn't called to be just like everyone else or to blend in, but through Christ, Ellie can grow to embrace her beautiful, unique body and see her differences in a whole new light - to experience them as part of God's will for her life instead of being ashamed.
It's hard, and it hurts so much. I still experience brief, fleeting moments of wishing for physical abilities I don't have. In the moments of physical or emotional pain that goes along with having spina bifida, it all seems so unfair. Yet in those times of trial and weakness is when I grow closer to Christ by letting him take over completely. And the joy that I have in Christ is eternal and it's so much greater than external things like walking like everyone else. God is with Ellie in her pain and holds every tear she cries in His hands, and she is in the prayers and hearts of so many. I am lifting the both of you up in this struggle and praying that God will give you the words to speak to comfort her, but it's okay that you don't have words sometimes. Sometimes God doesn't put anything on our lips because He simply wants us to sit with others in their suffering. I am praying that these moments of pain draw Ellie closer to God and that she grows into a woman who knows that she was created with her differences for a purpose and doesn't conform so she can find out God's amazing plan for her life.
"In this world you will have trouble. But take heart! I have overcome the world." - John 16:33
I am a mom with a son who just turn 8. Andy has SB with a VP shunt. I will never forget the day he "discovered" that he was different than the rest of the family. We were in the car driving down the road and he felt his shunt while playing with his head. He asked what is was and why it was there. We explained to him and he seemed to understand. Then he asked where his brothers was.... We told him that Ryan didn't have one, "Where is daddy's shunt?" "He doesn't have one." "Where's your shunt?" "I don't have one either." "GET IT OUT!" He really didn't want to be all that different from his family. We stayed calm but I was crying inside and still cry thinking of that day. It wasn't just that he knew he was different but that it was a reminder to me.
Fast forward a few years and he now understands that God made him different for a reason. He has plans for Andy that are greater than we will every know. Andy has gone through alot, 11th surgery was on his 5th B-day, but he has changed since then. He learned how to self-cath when he was 5, learned to swallow whole pills that same summer, he also spent most of his time in a wheelchair that summer. He would fall so much and get so worn out that we thought he was not going to get any stronger and that he needed to learn how to get around in a chair for the rest of his life. Well 3 years have gone by now, for the last 2 years the chair has sat empty. Andy has gotten stronger and steadier, most folks don't see anything wrong with him at all. The braces have been outgrown and tossed to the side without replacements being made. We tell him to be independent and do for himself. We remind him to look for the way God can use him to help others and to enjoy life as much as he can. Life is full of bumps in the road, but you can either slow down and avoid extra damage then keep going, or you can pull over and wait for someone else to fix them. I like to keep going just being careful to avoid the damage from the bumps and explore the different roads that are available to us.
My name is Beth, my husband is a PICU nurse and we travel as a family around the country moving every 3-6 months. We seek new friends and experiences, and enjoy our own type of missionary work. In the last 3 years we have moved over 9 times.
BTW, Doctors and therapists do not give optimistic outlooks, no one sues for a better than expected outcome. It is just a reaction to what our world has placed on the medical staff's shoulders. I have learned that most of the SB kids go through a time around 3-6 yr that they are growing and their bodies and minds don't work well together. Give her time and encouragement, most of all give her hope and love no matter what. From what I have read of your blog, you already do most of that, just keep your chin up.
Beth
Oh Robbie... my heart breaks for Ellie, and my heart feels your cry. Michael has recently asked me why people "stare" at him. And it breaks my heart when he asks... it breaks my heart when I notice, even when he doesn't. As his lower jaw continues to grow, and his upper jaw does not, it becomes more and more evident that he is "different". I have gotten into the habit of telling him that maybe people stare at him because he has the most amazing brown eyes! And while I hope it takes away the sting, the knowledge that he is different is still there for him to deal with. I see it in those amazing brown eyes!
I choose to believe that I am the momma of a child who has "special needs" NOT a "special needs child"... I feel there is a difference. His needs are special, just as Ellie's needs are... and while their needs are different, these needs make them feel different... and I know that with Christ's help you and I can meet their needs no matter how difficult it might seem.
An older pastor I once knew loved to say that "God wasn't in the business of creating junk... ALL of his creation was made beautifully, and created for the sole purpose of bringing HIM glory." I believe that whole heartedly, and everytime my heart breaks for Michael, I think about that. What MAN sees as imperfect, God sees as his perfect creation.
THAT is what I want to instill in Michael... and I believe that is what you want to leave with Ellie... and I know you will. And it is OKAY to let your heart be broken over the way your little princess feels.. God's heart is broken over it as well.
Ephesians 2:10 says: For we are God's workmanship, created in Christ Jesus to do good works, which God prepared in advance for us to do.
Ellie and Michael were created just as God wanted them to be, and he has prepared a work for them to do... you and I??? Our job is to help them overcome the world, and to find rest in knowing that their "Heavenly Father" isn't about the business of creating anything that he sees as less than perfect! And if he sees their prefection, that is good enough!
Love you my friend... and I just want to thank you for sharing your hearts burden with us....
I will be praying for you guys. My heart hurts for you guys.
Amy
I think that all of these comments have been great and I can't add anything to the spiritual guidance (which I totally agree with). The first thing that popped into my head, was...what about adding jewels? I have 4 kiddos (3 daughters ages 3, 5, 6 and one son) and all 3 of my daughters would love to have gaudy-jewel encrusted shoes - that seems to be the style these days. Anyway, like I said, I don't have any more spiritual advice, but maybe Ellie would love to "beautify" her shoes. By the way, at first it took me a while to even see the difference in her shoes - poor little girl! I remember too well the insecurity of being different as a child - I will pray for you all!
Oh Robbie...I did hear your heart break. :::sigh:::
It's so hard to watch our children feel inferior. Mia Hope's extra digits brings stares every where we go.
Ellie girl...you are so beautiful! You need to be proud of that "special" shoe because God chose YOU to wear it! Ellie, sometimes kids might stare at something just because they haven't seen it before. It's a new thing to them. Not because there is anything wrong with it. It's something new and amazing. Just like when you see a rainbow in the sky...it makes you want to stare. It's okay to have something that is different. That is what makes you special from all the rest. And Ellie, if you tell the other kids the wonderful things that this "special" shoe is going to do for you...they may wish they had one to!
Love and blessings,
Robin
Sweet friend,
Oh how my heart grieves with you...it hurts so much to see our kids hurt...and to know we can do nothing to fix it....we are mommies and daddies and our job is to fix things...
I will pray earnestly for {1} healing, {2} God's grace as you wait for the healing {3} experiencing God's tender love along the way...You are a wonderful mommy and I am so thankful that Ellie is yours...xo
I will definitely be praying (although I think I'm reading this one a little late). (((big hugs))) for Ellie and Mama.
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