Our Journey with Conjoined Twins
Abby & Erin
And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
Romans 8:28
Romans 8:28
,I can't believe we are already in October! It is crazy how fast time flies!! And with COVID even though the days are long it feels like the year is flying by.
We were able to move in the beginning of August and we love our new home. It is a little bigger than our last home and it lighter and brighter as well. Also a huge plus is that the girls have their own play room which makes it so much easier to keep the rest of the house. The commute for Riley to get to work is a little longer than he really wanted but it isn't bad. He is getting used to his new job and is doing well. We have had a couple COVID scares since we moved. We all had gotten sick and all had to get tested to make sure it was just a cold. But because tests take a while Riley was out of work for almost two weeks. His first test came back inconclusive....such a pain. But they were all negative. And then we found out that the girls had been exposed to someone with COVID last week and we had to get them tested yet again and wait for the results. Thank the Lord they were negative yet again, but needless to say they are not fans of being tested.....I'm not sure anyone is, it's not fun. The girls are doing well. They are progressing slowly but surely. Erin is getting a good hang on walking. She is a little unsure of different textured floor but after about 5-10 min of playing on and touching the floor she is usually up and running. She walked barefoot in the grass for the first time the other day which was fun to see. Abby is also doing great. She is crawling and trying to pull herself up to stand. She is learning to crawl up short heights and becoming more independent every day. I try to take them to the park every so often now that they are more mobile and they seem to like it and especially since the weather is finally cool enough that you aren't sweating standing in one spot. It's just a lot harder than I anticipated. I took them to the park the other day to try and tire them out before my mom came over to watch them so Riley and I could go out to dinner for our anniversary (5 years woohoo!). It was the first time I have taken them to the park by myself in a long time. The last time I took them Abby wasn't crawling yet and stayed in the stroller and Erin was just learning to crawl so she didn't do much. Now it's a whole different ball game. They go in opposite directions constantly. Which wouldn't be so bad if they understood when I told them not to touch that or to come back etc. It was a lot of being pulled in different directions, and the girls aren't light anymore. Lifting them up back and forth was exhausting. And all they wanted to do was go off of the "play" surface and go eat the grass or wood chips. They also seemed to be really interested in the other kids that were playing there. Erin followed them literally everywhere. But kids don't understand and can be a little mean when they know no one is really listening to them. And granted I understand, they are just kids and don't know better, but every time that Erin came close to them they would say "oh no the baby is here again, hurry we need to leave". It's tough because first off, Erin just wants to play. She likes other kids and wants to be around them, and second, she isn't a baby....she is the same age as these other kids. I think that is what hurts my heart. I know the girls don't understand but My heart hurts knowing that the world doesn't understand them like I wish they could. They aren't "typical" and most likely never will be. I know I have said this before but it one thing to live in a little bubble at home, going through the day to day activities. Everything is "normal" and if I didn't go anywhere their diagnosis wouldn't smack me in the face like is does in these instances. So at one point to help Erin try to climb a few things and give her a little attention I put Abby in the wagon and was helping Erin, and since I am not used to Abby trying to stand up I didn't buckle her (please no mom shaming....I felt awful as it was) and she fell out of the wagon. Granted it was the squishy rubber ground and it didn't hurt her, but she was scared and she screamed her little head off. So not only was I getting looks the whole time because I have "big kids" who are like babies, but I then have one screaming. So after about 40 minutes I gave up, put them in the car, and cried most of the way home. I wasn't crying because of "oh woe is me" but I was crying because I want so badly for the girls to be able to have those fun kid experiences like playing at the playground, and for us it is just a really hard task. I want other kids to accept them and play with them, and meet them at their level, rather than running away from them and calling them babies. (again I know they are kids and they don't understand, but that doesn't make it any easier). Yes, we celebrate even the smallest milestone, and we encourage and love these girls more than anything, but that doesn't mean life isn't hard. Now that the girls are getting older they get frustrated more since they aren't able to talk yet. Erin has a lot of meltdowns. She screams and flails and scratches and bites. Her and Abby are separated 24/7 unless someone is able to sit with them and dedicate all their attention because Erin can hurt Abby. All they want to do is play but since they can't "communicate" there is a lot of frustration that comes in the play. It worries me because I can handle Erin now at 30lbs. I can pick her up and move her, or can hold her back if she's trying to bite or scratch. But if things don't get better I don't know if I will be able to do that as she grows. It's one of my worst fears, to not be able to handle my children. It's different when they are little and act like babies, but as they get older and still act like babies it gets harder. It is something I wasn't anticipating. Don't get me wrong I still have an incredible amount of hope for the girls. Hope that they will walk, talk, eat, and catch up to their peers and have friends. But that doesn't change what the reality is right now, and that is that they are stuck in a body that can't communicate and it makes them (especially Erin) very angry sometimes, and there is not much that I can do to help. We have wonderful therapists who work with the girls 3 out of 5 week days. And then on the other two days my mom and I are working on doing "school" with them since they aren't in pre-k this year because of COVID. But it isn't like I have a child with autism where there is a ton of resources and people to talk to and bounce ideas off of. No one knows how the girls' brains work and what their limitations are going to be. They aren't able to point at pictures and learn sign language (we try and try). We hope and pray eventually things will change but right now it's exhausting and stressful. We try to take them to do fun things and it ends up turning into a chore that is just hard and they don't seem to care. Keep us in your prayers as we navigate these days. We have so much love and hope for these girls and we pray over them all the time the the Lord would make those little brain pathways connect. Pray as we try and figure out the right tools to help them learn and grow and communicate. We don't want them to be frustrated all the time. Pray for us as we are getting ready to plan our next trip to Philly. We skipped on of our normal 6 month follow ups because of COVID but we are getting ready to hopefully have a trip before Christmas to discuss possible surgery in the spring (just typing that makes my stomach hurt, that will be a whole other blog post). We have very much gotten used to being home and living life outside the hospital and the thought of going back and being there for a few months gives me anxiety like you have no idea. We love you all so much and all of your encouragement! Thank you so much to all those who expressed love to us in regards to the girls' story video being taken down on Youtube. It is in part because of all those kind words that they put the video back up. We love that the girls story is able to give others hope and give someone something wholesome and hopeful to watch when there is so much negativity out there. Yes, sometimes the days are hard, but our girls are still living breathing miracles that we are so incredibly grateful for each and every day!!
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AuthorMy name is Heather Delaney. I married the love of my life Riley on 10/02/15 and we now have two beautiful girls Abby & Erin, who are conjoined twins, that were born 07/24/16. We are trusting that God is going to work all this out for his good! Archives
March 2021
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