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
Time either seems to go incredibly slow, or incredibly fast. It never seems to move at a comfortable speed. My days right now are feeling like they are never ending, and the weeks seem to be flying by. It's so strange and uncomfortable. I always feel like time stands still and I am just trying to make it through the hour and then before I know it a week has flown by and nothing has gotten accomplished that I had planned on doing. We have been home for a little over 3 weeks now. We have loved being able to see family again and be home with Riley. We have been to a few therapy evaluations and are in the process of waiting for insurance to clear everything so that we can go back. It's a long process that results in spending a lot of time waiting. It means that our days are not consisting of much and the girls get bored so easy. We are used to going somewhere or doing something at least 5 days out of the week, so having nothing planned for 6 of them is driving us all a little crazy. Since we have been home the girls seem to be thriving. Erin just came off her antibiotic (finally!!) and is doing great. She had an incision on her head open up and leave basically a hole where you can see the skull implant. They were super worried about infection so she has been on lots and lots of antibiotics, but we were finally cleared for her to come off of them! Right now it is looking like we don't need to go up to Philly for about 5 more months which is awesome! As long as the girls stay on the path that they are on we are doing good!!! Erin's head is even healing better than they anticipated it. So please pray it keeps healing. They have prepared us that if it doesn't heal (which they are thinking it won't heal all the way) that Erin will need another surgery when we go back in 5 months time. We are praying that, that isn't the case and that this will heal up and that the implant won't get infected and we won't need to go through another (possibly the same) surgery for Erin. She already went through a lot with this past surgery and we really really don't want to do it again. I'm sure if she could talk she would tell you how much she doesn't want to go through it again. She still gets very upset when I mess with her head too much because she is afraid of it hurting. But on the cognitive side of things it seems like the girls are exploding. It is amazing. They are so much more aware of EVERYTHING and they seem to understand a lot of what is being said and what is going on around them. We are just hoping and praying that one of these days they will start talking. We know that most of their doctors aren't surprised that they aren't talking. We were told that the parts of their brains that sustained the most injury during separation were the parts that affect talking and communication. When they were babies I wasn't too worried about this, but the older they get, the harder it gets. I know that in time they will figure out a way to communicate. But man it is so hard. Everyday they get a little more aware, and therefore a little more frustrated that I don't understand what they want or need in that moment. They respond when I ask questions, like you can tell if they want their sippy when I ask or if they want their diaper changed when I ask. But they can't come up to me and say mom I want my sippy, or I need my diaper changed. It makes things complicated and I am always asking a lot of questions. Now, I know that every child goes through a time like this when they are babies and learning to communicate and they eventually get through it. But we have been in this same stage for what seems like years. Yes, I know they get a little better everyday, but in all reality not much has changed in regards to communication when it comes to their response/initiation. It has really worn me out. Especially now when it is just the girls and I in the house all day every day and they get bored and cranky, and get into EVERYTHING! (not joking) I have gates up all over the house, two of which I have to climb over every time I want to go past them because they don't have doors. Which ends up in lots of tripping on my part. Both Riley and I have fell over them at least once. It's one of those things that I can't wait till we don't need them anymore! But they rip up books, eat cardboard books, Erin has started chewing on the molding around the windows in the play room, they rip things apart, pull hair out of dolls, chew stickers off of toys. It's exhausting. They are always doing something, and most times it's something that I have to stop. But it is all part of their development. The chewing is also a sensory issue that we are working on. I feel like my whole house has to be a chewy for them. They love their chewys but we never seem to have enough of them because I can never find them when I need them. A lot of these things combined have given the girls the official diagnosis of being autistic. That diagnosis was one that I saw coming, but really was hoping wasn't. There is such a stigma around those who are autistic and it scares me for the girls' future. They already have so much going on and to be autistic as well is just hard. I cried a lot when I got that phone call. I just want the diagnosis' to stop. I know that it doesn't change anything. I know that the girls are still who they are and we still love them just as much if not more than we did yesterday. But having yet another diagnosis is just disheartening. We love these girls and want to give them absolutely everything in life. So it is hard to hear over and over again things that will hinder them leading a "normal" life (whatever that is these days). Because of yet another diagnosis, and the fact that the girls are getting a little harder to do things with everyday (food shopping, going basically anywhere, getting the house cleaned, cooking) we are looking into finding some respite care. I have heard of CAP/C in NC but have no clue how to apply or anything like that and was wondering if anyone who reads this has this for their child and can tell me what it does, if it helps, and how to apply I would be so appreciative. It was so nice in Philly having my mom with me all day everyday, now that we are back home and it is just me (a lot of days Riley works from 9am-9pm or early afternoon till 9pm) so its been a lot. By the end of the day I am burnt out and exhausted. I just need some sort of help. A few hours a week for someone to come to the house and keep an eye on the girls while I get things done, go grocery shopping, and just get a few moments to myself that aren't between 8pm-7am. It's scary and hard to get to a point where you know you are needing some help. It is also incredibly humbling to say, yes even though I am their parent, I can't so this all by myself anymore. So please if anyone has any experience with respite work or even with having a CNA come a few hours a week (we don't need full blown nursing, just a little help from someone who can handle some medical issues) that can give me any advice I would SO appreciate it!! Another thing that I am personally dealing with that I think a lot of "special needs moms" deal with is loneliness. Because the girls are hard to take out I don't go out often. Yes, I have friends who have children, but I am not able to hang out with them because the girls can't really go to other people's houses. They get into everything and destroy things. Even going to someone's house to go swimming is a huge task because the girls need to be contained the whole time, they don't understand to not fall in the pool, or not eat the grass or bite the table. I am not able to say "hey, lets meet up at chik-fil-a and let the kids play while we catch up". My life just doesn't work that way. And because of that a lot of friendships I have aren't as strong as they could be. It's very lonely. It's hard to always feel like a burden when you want to hang out with people because you know your children are "alot". Even when I go out with family I always feel bad because the girls are yelling and throwing things in the restaurant and causing a scene just by being their happy little selves. We don't get invited to many birthday parties, or kids events. The girl's struggle to keep "friends" because they get passed up developmentally really quick so we don't get to form relationships for them easily either. Please pray for me in this. I've been trying to figure out how to fix this for myself. I need that social aspect to my life back and it has been really tough without it. It's one of the things I am hoping and praying having some respite will help me get back (and Riley, his life basically consists of work and home) We are so proud of the girls, and how far they have come, and where they are going. Not once have we wished things we different because we love our girls for just the way they are. So please don't think that this post means anything other than that we love our girls so much and just are wanting a little more support. Yes we are tired, yes we are worried and confused about some things, but we are also so proud and beaming about our children and how amazing they are and what miracles they are. We have been so blessed by them and by the community they having them has brought us. Those of you who read my blog and wait for updates and who are truly invested in our family. I wish I knew how to do video editing because I would love to make vlogs so you could really see the girls for all they are and all they do. I know my words can only show so much! We love our Delaney twins Community and have been so blessed by each and every one of you throughout this journey. We can't believe it's been more than 5 years since I started this blog. It has already been such a journey and we know it's no where near over and we are so grateful that you all are along for the ride!!
10 Comments
Dawn Kirk
9/13/2021 01:49:19 pm
I’m amazed how much this surgery has changed their looks. Their heads look more rounded and natural! Hope their hair will grow in now! Love the head bands! I’m sorry you’re feeling lonely, I get it. It has to be difficult to find people to hang with. Anyone in your situation must feel it. I am hoping and 🙏🏻🙏🏻🙏🏻🙏🏻 that you can find some respite care. Not just for grocery shopping and errands, but some time for you and Riley..date nite! There has to be services available for this. You are a warrior Mama! You two have brought these girls so far! Can’t wait to see the milestones ahead! Keep the faith. Sending much ❤️❤️❤️❤️ and 🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻!!
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Vera Peter
3/11/2024 07:27:49 pm
i want to share my amazing experience with Dr Jumba my husband was cheating on me and when i found out we had a fight which lead to him filling for a divorce i cried and fell sick when i was searching about love quotes online i saw people talking about him and his great work whose case was similar to mine they left his contact info i contacted him and he told me not to worry that after 24hrs he will cancel the divorce and be back to me after i did everything he asked me to do to my greatest surprise the next day evening it was my husband, he knelt down begging me to accept him back,thank you once again Dr Jumba you are indeed a blessing to me he can also help you contact
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Vernon Siders Jr
9/13/2021 01:56:57 pm
Praise GOD for answered prayers! Both of you are awesome parents and you have two beautiful daughters! May GOD continually bless all of you!
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Alisha Abbott
9/13/2021 02:07:42 pm
I'm not sure if it's a possibility but maybe start teaching the girls baby sign language so that they have some way of communication. You, Riely and your whole family is doing amazing even on the real hard days.
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Barbara
9/13/2021 02:51:04 pm
I was also thinking that you should try sign language with the girls. They probably won’t understand right away, but we know, ALL GOOD THINGS TAKE TIME. I am actually surprised that none of their therapists have recommended this earlier ? A friend of mine that does Day Care in her home, teaches this to ALL the children she has, regardless of ability. Also for the Autism Diagnosis, I follow a woman whose son is Autistic. Her Vlog and Facebook page are “findingcoopersvoice”. Her name is Katie. She can help you with many many things. She is a GREAT Advocate!! I/we don’t have anyone in my Family with the diagnosis, but I follow to learn more about Autism. My Prayers have never ended for your family especially the girls 👧. I pray that you can find some respite care & possibly some other Mothers going through some of the same obstacles that you can become friends, even IF only on FaceTime. God Bless you.
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Merlin da Craig
9/13/2021 02:52:30 pm
Have you looked into ABA therapy for the autism? It might help with the behavioral issues.
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Anne Sousa
9/13/2021 03:52:23 pm
Hi Heather, Riley, Erin and Abby! I am so thankful that you are home! Your lives are a constant marathon that few people have experienced. I have taught children who were diagnosed as being on the spectrum. With specific training they have exceeded expectations. Be of good courage! Praying for gifted help for you and your family!
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Renae Winkler
9/13/2021 03:53:20 pm
Heather, have you tried the Department of Social Services in your county? Also have the girls been evaluated by Early Childhood Intervention through your county health department? Because they are nonverbal, you could make a board with pictures on it. Put a picture of a sippy cup, a diaper, a snack, etc. Show them the board and teach them to touch the item they want. There are specialized tools for this, but maybe the early childhood people can help.
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PAM NICHOLS
9/16/2021 05:31:20 pm
Since they are 5 and school age, an intermediate unit should be able to evaluate them and provide services. If they were in school, you would have some time to yourself!
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Julie
9/24/2021 05:46:14 pm
Contact your local public school district. They are old enough to be in the special needs classroom. That would give you time to do what you need and their learning will soar too! Also, search Facebook for a special needs moms group in your area to meet some friends in the same boat. I love watching the girls grow!
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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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