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
Grief is a funny thing...I always used to think that people only experienced grief when they lost someone. (very naive I know). It wasn't until Riley and I had the girls that I learned what grief really is.
I was very lucky growing up and never really had to experience real grief. Granted I lost my one grandfather at a young age, but was too young to really understand grief. Now I experience waves of grief just as anyone who has lost someone important to them. It's these waves that seem to wash over you. Don't get me wrong here, loosing someone is very different than having children with medical complexities, and I don't want to make it seem like these two are similar because they aren't. But the way grief works is the same. Ever since we found out about the girls Riley and I have had to grieve. We grieve the life that we had dreamed about when we got married. Most young couples dream of having a family when they get married. They can envision their kids running around the back yard, splashing in the tub, and opening presents Christmas morning. You have this whole life built up in your head of what life could be. But with Riley and I our dreams changed. They changed in an instant. The second we saw the girls on the ultrasound monitor with both knew that the life we were living was going to be very different than the life that we had envisioned. So why am I bringing this up. Why when the girls are 3 years old am I bringing this up. Well today my mom had offered to watch the girls for the day so that we could have a little break since Erin has been having some issues with puking at night and we haven't been sleeping well. So I dropped them off with her and went out for a little while by myself since I don't get to do that very often. It was so nice to go from store to store and not have to lug everything and everyone in and out of the car over and over again. I went to party city to get some things for my sisters bridal shower that was coming up. I was having a nice time and my spirits were up and I was just enjoying a little freedom from mom-hood for the afternoon. While I was waiting in line, there was a woman who was checking out and she had her daughter with her. She was bopping around, asking questions, and trying to get her mom candy. I smiled as I watched her little happy self enjoying life. The mom was talking with the cashier as she was being checked out when she was asked how old her daughter was. She then asked her daughter "how old are you" to which she replied "3". In that moment my heart sunk and my throat tightened and I could feel tears welling up in my eyes. I had to remind myself where I was and that people were going to think I was a little crazy for randomly getting sad in party city. But I realized what typical 3 looks like. It's a mini teenage basically. Speaking full sentences, listening, understanding, potty trained, basically a kid. 3 seems to be the end of toddlerhood. In the back of my head I know this. I know what 3 looks like. But for some reason it hit me funny as I watched this happy little girl. I know our girls are happy. I know they aren't a typical 3 year old, but they don't know any different. They just know what they know and live life the way they see it. But Riley and myself live a little differently. We live with knowing what could have been. Knowing what the girls are missing out on, even what we are missing out on. The girls are always progressing, but it's slow. Developmentally they aren't even 1 year olds yet, even though they are in 2t clothes and 3 years old. All this come back to the fact that grief if a funny thing. Some days I don't even think about the fact that the girls are different. I don't think about the things we are missing out on or the things that are different for our family. I don't think about the struggles we face as a family from being away from each other so long and all the financial stresses we are under from having a few years struggle. But then there are days when the grief comes back. Where I wonder what life would have looked like if the girls hadn't been conjoined. What if they had been born like typical twins. Our babies would be kids right now. It's a tough pill to swallow. After a little while the grief of this afternoon wore off. Riley and I went out for dinner to have a little date since we haven't done that in a little while. We were able to go to a nice restaurant and be just the two of us for a little bit. And then we got a phone call from my mom that Erin was sick and throwing up and acting really lethargic. Instantly medical mom turned back on and we got the check quickly and left. It wasn't till I put her to bed and sat down in the quiet living room that the grief I had felt earlier in the day came screaming back. If Erin was "typical" throwing up and acting lethargic wouldn't be a cause for alarm. But since she has a g-tube and can possibly have seizures etc it causes alarms to go off in my head. She's also been acting a little funny the past few days which just has me on high alert as well. Nothing I can really pinpoint, but a mama just knows these things. If all these "other" things weren't at play the night may have gone a little differently (at no fault of my parents either, Erin needed to go home). But even so it's that grief that seems to creep in when you least expect it. I know all my other medical mom friends feel it too. It seems to crush you when you least expect it. Like getting the wind knocked out of you and you can't breathe. There is a part of you that wishes you could run away from it all. Run away from the doctor appointments, the therapy appointments, the always trying to get them to gain weight, the anxiety, the worry, the am I doing everything I can for them. You just wish that sometimes your life was "typical". That your kids were "typical". And the weirdest thing about this type of grief is that you wouldn't change it. You wouldn't change your child for anything. The milestones mean so much more, the smiles mean so much more, even the middle of the night snuggles mean more. It's the repetitive cycle that just seems to happen over and over and over again. It's hard to not feel guilty when you feel this grief either because you never want your child to think you wanted them to be anyone other than who they are. It's just that you seem to grieve for your child and for the things that they don't understand or realize. So all this to say, today was one of those knock the wind out of you kind of days for me. The funny thing is that no one knows it either. And again I know my medical mom friends are the same way. We feel this incredible grief, but don't show it. We put on our brave face and push through because our kids are worth it, the grief is worth it. We push forward and know tomorrow is another day with new triumphs to be had. Also please know how grateful we are to those who have sent wishlist items and donated to our gofund me. Words cannot describe how grateful we are for those things. They brighten our day and take some of the stress off. The amount of love and prayers that you all show us is incredible. We are so so grateful.
9 Comments
8/3/2019 08:41:23 pm
Everything you are going through is normal. I’ve been through it as well with my first born son who was born with many medical issues. Your grief is a way of mourning the healthy children that didn’t arrive as expected. I have been diagnosed with PTSD as a result of my son’s medical issues (he’s 37 yrs old now and will always need care). It has been a long hard road with no support from family. Perhaps a therapist can help you. Just a suggestion. Know you are not alone.
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Jessica Lao
8/4/2019 04:17:44 am
Right there with you. 💜
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Sharon
8/4/2019 05:32:40 am
I understand to some extent how you feel. When I was a broke single mom and my two kids were little, and I had no one who cared enough to help, nor did my kids have a good male role model, I grieved for them and myself that they didn't have a normal life. Looking back, I wish I'd turned to God more.
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Majka
8/4/2019 09:10:26 am
Are you not considering havíři another child? Máme it would hele your whole family . .
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Mackenzie
8/4/2019 08:38:09 pm
Oh man- I get it! My girls have less complications post separation but we have really struggled to grow Madi and I totally understanding “typical” kid things being so much different. You aren’t alone and I really appreciate how you put the same feelings I have into words, including how blessed we are to be raising our conjoined twins! Sending calming thoughts to you tonight!
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Dr. G.
8/7/2019 06:33:52 am
I am a retired psychologist and grandmother of a medically complex child. He didn't walk until he was 2 and didn't talk until he was 3. He is now almost 10 and entering 5th grade. He still has medical challenges, but he is a happy, delightful child. Your reactions are normal and very understandable. You are doing fine.
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Courtney
8/13/2019 08:39:55 pm
You are a beautiful inspiration ❤️
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Isabella Lucas
11/10/2022 05:00:50 am
My ex-husband and I had always managed to stay friendly after our divorce in February 2017. But I always wanted to get back together with him, All it took was a visit to this spell casters website last December, because my dream was to start a new year with my husband, and live happily with him.. This spell caster requested a specific love spell for me and my husband, and I accepted it. And this powerful spell caster began to work his magic. And 48 hours after this spell caster worked for me, my husband called me back for us to be together again, and he was remorseful for all his wrong deeds. My spell is working because guess what: My “husband” is back and we are making preparations on how to go to court and withdraw our divorce papers ASAP. This is nothing short of a miracle. Thank you Dr Emu for your powerful spells. Words are not enough.
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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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