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
How has it been over a year since my last blog update. Life is coming at us hard and fast and the days feel long but at the same time they fly past before I can even realize it!!!
In less than two weeks the girls will be turning 7 years old. I still can't believe I have two almost 7 year olds. And if I am being completely honest and transparent, they don't seem like 7 year olds. I know we have gained a lot of new followers since I started making tiktok videos. There are a few things that I don't really talk about in my videos, and even in my facebooks posts. But the girls are not only tiny for their age (they look tall in photos, they're all legs, but they are in the 1st percentile for height, and in the 15-20th for weight) so they look more like a 4-5 year old, but developmentally they are still around 15 months. Every birthday is such a celebration of beating the odds and making it through another year, but at the same time my heart grieves. As I yet again shop through the baby and toddler toys, searching for something new. I walk through the toys aisles and look at barbies and american girl type dolls and wonder "would the girls be loving these things if they were typical?". It's such a bitter sweet thing. And I think as a special needs parents we hide that side of things. We hide the parts of our hearts where we are hurting and greiving because we have our child (children). We have friends who have lost their sweet babies way too soon. And we can't imagine their pain, and we have fought so hard to have our children with us today. But that doesn't mean it hurts any less when your child has missed milestones by years and you wonder if things will ever change. It doesn't hurt any less when you see friends meeting up and taking their kids on outings that are just too much for yours. You see people celebrating holidays an birthdays in ways you only wish your family could. Just this past 4th of July, Riley and I were sitting on the back trunk of our car with the girls (we had woken them up and decided to try and see some fireworks) and just talking. And as we looked around we saw kids running around with sparklers, dressed in red, white, and blue clothes, playing, riding their bikes, having fun snacks, and just really enjoying the holiday. And in talking we both admitted to each other how sad we are that we can't be the parents we always pictured ourselves being. It is so hard knowing all the things you want to do for your children, and all the things you want them to take part in and enjoy, but knowing that even if you did all those things for them they wouldn't understand. There is just a bit of an underlying sadness. Don't get me wrong, we try, and we try HARD. But a lot of times people stare, the girls melt down, they get overstimulated or frustrated, and Riley and I are left struggling trying to pick up the pieces of whatever event we attempted to go to. And a lot of times we don't get invited back. I never really thought about what it would look like as the girls got older. I used to just tell myself "oh when they can walk and talk it won't matter how long it took them to get there." But now I am realizing even though they're walking, they're still like babies who would run into traffic and have no clue. And realizing they may never talk like you and I. There is a delicate balance between being hopeful and being realistic. It is a hard balance, because if you sway too far towards hope, you can have unrealistic expectations and get let down pretty hard. If you sway too far towards being realistic you may not push your child enough and they will never realize the things they actually can do! I'm realizing now, years later that when the girls were babies it was so easy to sway towards to hopeful side of things. We didn't know what they could do so the sky was the limit. And yes, we still don't know what they can do, and yes we will always believe the sky is the limit, but the older they get, the harder it is for them to develop these skills that they were supposed to develop in the first few years of life. We will always hope and always pray for a miracle when it comes to the girls, but now a days we ride the line a little better in the middle and have a healthy view of being hopeful and realistic when it comes to the girls and their abilities. There are new challenges when it comes to the girls getting older. Yes, there are so many little victories (and BIG victories) that come, but the challenges are pretty hard. The girls are getting bigger. Yes, they are petite as I stated before. But carrying 50lbs back and forth to the car, putting them in and out of car seats, in and out of wheelchairs and wagons, lifting them off the floor and onto a changing table, it really starts to take a toll on you. I've realized way more aches and pains in myself in the past year than ever before, and I know a lot of it comes because of lifting the girls, and their equipment. Abby's wheelchair is not very light, and it doesn't fold much. So lifting it several feet to try and slide it into the back of our SUV is tough (we need to get another mini-van, but that just isn't something we can do at the moment). And we LOVE our wagon, but it is HEAVY, and when you use it, getting it in and out of the car is exhausting. And knowing in the back of your mind "they're only getting bigger" is a scary concept. Another new thing with the girls is attitudes. Gaining independance and wanting to be independant is amazing, but when you are bigger than a toddler, and don't understand why you can't do something, the temper tantrums are a bit bigger, and the anger sometimes comes with things that are painful (ever have a 6 year old bite you?....I do not recommend) They're so much stronger than they used to be and even changing a diaper feels like an actual wrestling match. The kicks are strong, and fast, and sometimes I can't catch them. These were all things I didn't think of when they were little. There is this other side to being a special needs parent that I never thought of, and I feel like no one really talks about. Don't get me wrong, we talk about it to other special needs parents, and those who "get" it. But why are we so afraid to express the challenge to others. Like I said before I think part of it is guilt, feeling like we can be nothing but grateful for our child because they are here, but thats silly. How are others supposed to understand or help support if they don't know the struggle. Someone out there may have great ideas on how to handle behaviors, or come up with some amazing invention or sensory toy, but they can't because they don't know. Please be kind to those you know who are raising children with special needs (any kind of special need). It's isolating, hard, and sometimes embarassing feeling like you can't do anything other than keep your kids alive today. Many times they will put on a smile and tell you all about the new things their child has accomplished, and they'll show you the beautiful picture of hope that their child is. But they may be struggling with the reality of the needs their child has. If you are a special needs parent I just want you to know that I see you. I know the struggle. I know the lugging back and forth to therapies and doctor appointments. I know the breakdowns (both yourself and your kids). I know the isolation and hurt from lost friends. You are not alone, you're doing your best, and I know your child is grateful!!
9 Comments
Laraine Metzler
7/15/2023 11:50:18 am
I read your heart and mine aches for you. You truly are an inspiration to those of us who have never walked in your shoes. Know that I pray for the girls and I pray that by God's power they will begin to talk. Holding this blog close to my heart...lovingly, Laraine
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Debra Carignan
7/15/2023 12:42:01 pm
Heather, I am so touched by your hope and your struggles. I pray every day for your family that the girls will continue to progress and you and Riley have the strength to do all that is needed for your girls. I know you are trying very hard. I admire you so much. I sure hope that you get that needed help you have been hoping for. I think it would be a huge for you both mentally and physically. Keep fighting the good fight. God bless all of you.
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Marie
7/15/2023 07:55:34 pm
So many emotions in that! And I can relate. I have a special needs niece, she “talks” but not like you and I. It’s heart breaking to know she will never drive a car, have a job or get married. But I can sure tell you the love she gives is some of the best.!!!! You are doing a wonderful loving job, give yourself a round of applause!!!! You deserve every right to miss those things in life. <3
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Heather,
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Lisa Donley
10/25/2023 09:27:41 pm
I am not the parent of a special needs child but worked in the severe special needs classroom(elementary level)for 6 years before the child I worked 1:1 with parents asked me to become his in home care giver. I totally understand the meltdowns in the middle of the grocery store or McDonald's etc., the biting , scratching, hair pulling, hitting and kicking. The bruises both physical and emotional. I adored this boy, loved him as if he was my own. I took care of him both at school and home for over 10 years. I agree changing on the floor is much easier than a changing table, or on on a bed where you can help them up instead of lifting. Your girls are beautiful and hopefully as they get older it will get easier as they learn. I pray for you all. Never lose faith, you are doing an amazing job with them. Their smiles are proof of that! They have come a long way because of their parents,family and friends. Sending love,prayers and hugs!!
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Vera Peter
3/11/2024 07:25:40 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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Erinn
3/16/2024 11:37:40 pm
Heather, I'm not the parent of a special needs child. I worked in a developmental center for 21 years with teens and adults with special needs. My heart always ached for the parents. I was often reminded just how much our parents deserved an extra dose of compassion and understanding and how hard it must have been on them to not have their children living with them anymore. I often have thought about the grief of milestones and the loss they have felt like you have articulated so well. Thank you for sharing your journey with us and I pray that as they grow older, God will provide the miracles you are praying for in ways that no one other than God can do, all for His glory. in the meantime, I pray that He gives you and Riley strength, comfort, and joy amidst the struggles. I pray that every day He equips you with more energy and more support. And I pray that He fills you with hope that keeps you going each day! You and your family are loved!!! You're an amazing momma!!
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3/22/2024 04:32:00 am
Awesome post! This is my first-time visit here and I am actually pleased to read this post. Thanks for sharing.
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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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