we are officially here through open heart surgery. we don't (and won't) have a date. shilo has five more days of antibiotic. after that is finished, whenever everything is ideal, they will do surgery. so it's likely we will find out same day or only have a one day notice. this is hard, but we also know it's best for shilo to have surgery when everything is at it's best. and we want the best outcome possible so we are willing to roll with it.
i'm pretty emotional this weekend. some of it is from being tired. some of it is from five weeks of stressful circumstances. and some of it is just from it being a weekend with my husband and daughter. it always feels so bittersweet. as saturday night creeps up i wonder if i stay up if maybe i can keep sunday from coming. and then we can just always be together.
jason and i sat on the couch in a common area this evening while we were waiting on dinner at the rmh. abigail dance joyfully to 'hosanna' closing her eyes, spinning, and raising her arms. all i could think was 'God, i miss that girl.' she is always so full of joy. i know she doesn't understand everything. but she is so matter of fact with it all. 'the doctor's are going to fix the boo boo on shilo's heart, and then they will take all the tubes out, and she can come home.' it's simple in her sweet little head.
i find myself wishing for her simplicity and faith. i wish i didn't know about co2 levels, acidosis, and picc lines. i wish i could just easily accept that this is what needs to happen for shilo to get better and be done.
but i find myself back at 'why.' i remember asking this over and over after abigail was diagnosed with nf. and i remember truly finding peace and settling into the idea of 'because we live in a fallen world.' my why now isn't quite the same. it's different since we already knew about things with shilo. it's more of a why do i have to (re)learn the same things? it seems like waiting on our first child for three years, and then her diagnoses, and adopting a second time, would all be chalked full of all the life lessons one could possibly need.
but alas, i return to my ways when things are comfortable. i forget who hung the moon, and that it most definitely wasn't me. i forget what it really means to love people. and most importantly i forget what it means to trust my Papa. because He is good. He is worthy. and He is way better at holding my life in His hands, than i am at controlling things myself.
so tonight, as abigail asked to sing psalm 122 to shilo, prayed, kissed her sister, and signed i love you to her, i had a moment. once again, this time period in our life is definitely hard. but God hand picked my two little girls to be our daughters. He moved things in heaven and on earth so that they would come to be part of our family. He knew that abigail would be the perfect big sister for shilo, as shilo would be the perfect little sister for abigail. He knew that we were the best parents for these two girls (even on days when we fall way short). and He knew we would spend this time period living separately, hurting, and figuring out (once again) who was holding us.
thankful to be in His hands,
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Beautiful post! Keeping Shilo in my prayers!! And keep Abigail's, simplicity close. There's something to it:)
ReplyDeleteHugs!
There is NO better mama for Shilo than you. You are exactly the mama God had in mind from the day of her creation. Pretty awesome stuff huh?
ReplyDeleteAfter Liddy's lung collapse and the moment of absolute terror that showed me clearly how close I was to losing her, I desperately called my dad in tears and all I could say over and over again was "I want to go home. I want this over. I want my baby back." And after probably twenty minutes solid of this, my dad very quietly said, "Heidi. She won't ever be returned to you unless you completely let her go. Realize He wants you to give her to Him completely. Let. her. go. He will bring her back." I sobbed the rest of the day because in every moment of silence those words echoed in my head. I was trying so desperately to keep her with me because of my fear that I refused to allow Him the time He needed to do His work. Hardest thing I have ever done...hanging up my supermom that can fix anything cape. Hard pill to swallow that I didn't have control and that some things are beyond the scope of my abilities to fix. I had to literally give myself a pep talk every single morning on the walk to the hospital. Letting her go was hard. Trusting God would return her to me was hard. But without a doubt, He chose ME to be her mama and she was in His amazing plans long before she was even a dream in my heart. Just as He has you. I'm thankful you are in His hands too. And although the road may be hard, He will not let you fall.
Hugs to all of you......praying for Shilo as always.
Praying for you and your dear ones. Praying that God would carry you - that He would grant you the simple, beautiful faith of your daughter for 'the kingdom of heaven belongs to such as these' Matthew 19:14. I have a picture in my head of your sweet little girls lifting their hands together in praise -- someday, soon. God's peace and strength to you as you wait - Lisa
ReplyDeleteI completely understand how you continue to ask why. I did that a lot too when my daughter was diagnosed with NF and in and out of the hospital every couple of weeks.
ReplyDeleteAnd then on our 6th visit to the hospital I was just sobbing in the middle of the night begging God to tell me why he'd given my beautiful baby this huge burden to carry when the nurse came in. She sat down next to me and talked to me for quite a while, and I will never forget what she said to me...it made me stop asking why.
She told me that God made kids like mine because he needed them to do big things in the world to make it better, and they needed this burden to accomplish their task. She told me that He had picked my daughter because she was strong and could do what needed to be done, and that He gave her to me because He knew I was strong enough and had the conviction to support her through her mission.
I don't look up at the sky and ask why any more. I just go with the flow and do everything I can to make sure my daughter has every thing she needs to do whatever great things He has placed my daughter here to do. I have complete acceptance for all my daughter will face. And yes, it makes me sad to know that she will never do some of the things that many kids and parents take for granted, but I know it is all for a reason...God's reason!
My baby has already changed and touched so many lives in such small ways just by being herself and showing her strength. I know that she is destined for great things, and I can't wait to see what they are. I don't know what God's plan is, but I know he has one and that is what I take comfort in.
Praying for all of you! :)