When Annabelle is sick though, the chapter in their little lives turn and as parents, we see a side of our daughters that we couldn't have taught or raised if we tried. The love they have for each other is indescribable. When Annabelle was at her worst, we would have to console Madelynne in the middle of the night and wipe her tears because she was so so scared Jesus was taking her sister away from her. Madelynne has watched and assisted in things that are vital to her sissy's health, that no child ever should. The first few years, when both girls were younger, we kept Madelynne distanced from her sissy and told her little about what was happening. Her mind wouldn't be able to grasp everything that was going on, and the best for both girls was to preserve there smiles and laughter and encourage as much normalcy as we could. Eventually, Annabelle began spending more time in the hospital than she did at home .. and when that happened, mommy too spent time in the hospital and away from Madelynne. We started to explain things the best we could. We had Child Life talk to Mady about her sister when she would visit her in the hospital, they would tell her all the tubes and wires she would see and explain to Madelynne in words that she understood, about her sister's status and condition. We have purchased books and spend as much time as she needs to answer her questions about Annabelle, anytime she is worried about something or confused.
In July, when we took Annabelle to Cincinnati - it was the first time we, as parents, were ever away from Madelynne for so long. It was also the first time she was ever away from her sister for so long. The entire trip in Ohio, Annabelle asked for her sister. In recovery after surgery, Annabelle wanted her sister. On the phone when I would talk to Madelynne, she was worried to death about her sister. My heart sank. Maybe keeping them apart WASN'T the best idea?
Mady wrote this for Belle during surgery:
I know a lot of parents / people / YOU even, will disagree with the idea of allowing the girls together in the hospital. But unless you have eyes in my house, you haven't seen how much the two of these girls depend on one another when something goes wrong. When one child is sick, the other is worried to death if they're ok. When Annabelle needs her tubey changed, Madelynne is right beside her singing in her ear and telling her it will all be alright. We don't shield them from whats happening in our home and in our family around Annabelle's condition. I have always made that promise to myself and them that I will never lie to them about what's going on.
NOW, of course during the most excruciating appointments and procedures, we do not allow Madelynne to be present. During surgery and recovery, Madelynne CANNOT be present, nor would we allow it, mostly because Annabelle is so incoherent, she doesn't understand who anyone is anyway. But for appointments, procedures, IVs, tube feeds / changes, skin testing etc. Madelynne is allowed to be right beside Belle if they choose.
So we are planning our trip to Cincinnati and will be leaving next weekend. We haven't spoken much about it in our house because we don't want to upset Annabelle, but when we do, both girls question whether or not Madelynne is going to go. Of course she isn't, she will be in school and Belle will be in the hospital - of course Madelynne will stay behind. But the more they asked and the more I reflected back to our last visit and previous procedures, all I can remember is that each kid missed one another. Is it worse for them to allow Belle to have her sissy with her? What is the worst that could happen? What's the best that can happen?
When we travel and when Annabelle is subjected to series of hospitals and procedures, we strive to keep things as normal as they possibly can be. We bring a kindle that she can watch in the hospital. We have pictures on nightstands so she can see her sissy. We bring our own pillowcase that she likes to chew on and Belle carries her lambie and blanket to snuggle with. If we leave Madelynne for a full week, that will be just as traumatizing for her too - she isn't used to us being gone, and although she does fine with other adults, she struggles when we get back home. Her feelings are hurt and her heart is broken that she was away from all of us. I do understand that. I do understand why Annabelle wants her sissy and I do understand why Mady wants to be with Belle. If for nothing else, they can bicker with one another the entire time - and that, will be 'normal' enough for our family to survive Cincinnati. :)
AK met with Mady's teacher this week. He talked with her a short bit about what's going on and also asked how much would Mady fall behind if we were to keep her from school. Mady is excelling in 1st Grade better than we could have prayed she would. She is keeping up in every subject and even moving in higher work groups to gain even more of a challenge in areas. The teacher had absolutely no reservations about Madelynne and said she would be happy to build us a workbook of school work she can complete while we're in Ohio. That way Mady can have something to do during down times while we're waiting on doctors and tests and she will not fall behind in her school work.
So. Madelynne is joining us in Cincinnati Ohio. When we told her, she was more happy and relieved than I thought she would be. She immediately wanted to start packing and gave her sissy a huge, huge hug. They think they're off on an adventure together.... boy what an adventure it will be!
Just beautiful!
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