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.
We know that all things work together for good to those who love God… --Romans 8:28
It is only a faithful person who truly believes that God sovereignly controls his circumstances. We take our circumstances for granted, saying God is in control, but not really believing it. We act as if the things that happen were completely controlled by people. To be faithful in every circumstance means that we have only one loyalty, or object of our faith— the Lord Jesus Christ. God may cause our circumstances to suddenly fall apart, which may bring the realization of our unfaithfulness to Him for not recognizing that He had ordained the situation. We never saw what He was trying to accomplish, and that exact event will never be repeated in our life. This is where the test of our faithfulness comes. If we will just learn to worship God even during the difficult circumstances, He will change them for the better very quickly if He so chooses.
-Oswald Chambers "my utmost for his highest"
Riley and I have been going through it recently. Life just keeps dealing us crappy hands and it has been incredibly overwhelming. Realizing how behind we have become on some bills and how we are both having a harder and harder time dealing with things is just difficult. Our lives are all about the girls, and we are neglecting things (not purposefully) that can't be neglected. And so tonight, as I was basically falling apart because of the stress, Riley pulled out My Utmost For His Highest, and faithfulness was the topic of the devotion. And to say I teared up would be an understatement. It was like a huge light bulb turned on and God went "Hello Heather, I'm still here!"
For those of you who don't know me, I've grown up in church and went to Valley Forge Christian College and received my degree in Youth ministry. I don't consider myself "religious", but rather consider myself to have a personal relationship with Jesus. He knows everything about me, my strengths, weaknesses, likes, dislikes, the desires of my heart, and every hair on my head (or on the floor for that matter, post pardum hair loss is CRAZY, sorry rabbit trail). And every once in a while he needs to basically hit me over the head to make me realize I have forgotten to trust him.
There have been many moments along this journey with our girls that Riley and I have sat and said to each other we don't know how we are going to make it through, and then before we know it God proves himself to us over and over agian. Showing us how much He cares for us and sees our struggles. So here we are again in that position thinking how are we going to get through this and where do we go from here. But then we read a devotion and I remember He has taken care of us several times before, what makes this time any different. Just because it isn't easy doesn't mean He isn't taking care of us.
Matthew 6:24-26 says
“No one can serve two masters. For you will hate one and love the other; you will be devoted to one and despise the other. You cannot serve God and be enslaved to money. “That is why I tell you not to worry about everyday life—whether you have enough food and drink, or enough clothes to wear. Isn’t life more than food, and your body more than clothing? Look at the birds. They don’t plant or harvest or store food in barns, for your heavenly Father feeds them. And aren’t you far more valuable to him than they are?
Oh how I need to take that one to heart. God is in control. He has this all figured out. He knows how things are going to go with Abby and Erin. He knows how hard it is for Riley and I to be apart. He knows we can't afford rent and car payments. He knows, and He will provide because he loves us. He promied he would never leave nor forsake. And when He makes a promise He keeps it.
Through the amazing lyrics of Steven Curtis Chapman, Jesus says....
I watch you looking out across the raging water
So sure your only hope lies on the other side
You hear the enemy that's closing in around you
And I know that you don't have the strength to fight
But do you have the faith to stand
And believe me now, believe me here
Remember all the times I've told you loud and clear
I am with you and I am for you
So believe me now, believe me now
I am the one who waved my hand and split the ocean
I am the one who spoke the words and raised the dead
I've loved you long before I set the world in motion
I know all the fears you're feeling now
But do you remember who I am?
I am the God who never wastes a single hurt that you endure
My words are true and all my promises are sure
So believe me now
Be encouraged as I write to encourage myself. Thank you all for reading my thoughts and emotions. This blog has helped me in so many ways and your encouraging comments blow me away more often than not. RIley and I are very blessed to have each one of you following our families journey.
When you hope, be joyful. When you suffer, be patient. When you pray, be faithful.
Romans 12:12 (NIRV)
Patience is a funny thing. I feel like I catch myself praying "Lord give me patience" but then I realize that in order to have patience, I need to be put into situations that I need to be patient. And let me tell you I have never gone into a season of life where I had to be more patient than I am now.
Sorry I haven't updated in a while. Life is just seeming to pass me by. Days turn into weeks before my very eyes. The girls are overall doing very well. A few weeks back we needed to "re-evaluate" the course the girls were on and come up with a slightly different game plan. And since then things have been good. The process they are going through is working, it is just taking a lot of time. It is a very slow day by day process. People keep asking me "when is their surgery going to be?", "Have they given you any type of timeline?" and I just have to keep telling everyone we don't have a timeline or anything right now. We are just patiently watching the girls do what they do throughout this process. And the girls absolutely HATE it. Some days are better than others. But majority of the days are emotionally exhausting for me. I try so hard to keep it together around them. I don't want them to sense me breaking because they need all the strength they can get. But it is getting tiring. It has been about three weeks of this new process and I'm already wearing thin. But I know we need to get through this to move forward. I just keep counting the days till Riley will be here again, and remind myself that the next step after this is separation. It is so close yet so far. I lay in bed at night thinking about what it is going to be like when they are separate and I feel like we are just never going to get there. I know we will, it is just that feeling that it is never going to happen. It's where this whole patience thing come back into the picture. Being patient while your children are in pain is one of the very hardest things I think a parent can endure.
It is a funny thing being here because even though my emotions are running thin, I gain so much admiration for these little girls. I am so humbled to be their mom. Watching them grow and endure all that they are going through is miraculous. I get to watch a real live miracle happening everyday and it is sometimes more than I can handle and it just makes me weep. I am so incredibly proud of them. They have overcome so much hardship in their lives so far, I just don't know how they do it. God must have a seriously amazing plan for them.
I want to give a quick shout out to the staff at CHOP. We have the greatest team I could have ever imagined. Our surgeons have the most inovative and smart minds that I have ever had the chance of meeting. Our nurses/nurse practitioners are the most kind and caring people you could ever imagine. I watch them day in and day out love on our girls and it brings me to tears thinking about it. They will sing to them, rock them in their wagon, play with them, pat them, comfort them, and do everything in their power to make the girls day everything is should be. All of the girls different therapists, occupational, physical, music, and speech, are all so wonderful. They have the girls best interests at heart and are always so encouraging. They are some of the girls biggest cheer leaders. Watching the girls smile at all these wonderful people makes my heart swell. To see the girls knowing how many people are caring for them and are cheering them on gives me so much hope. If I was to be anywhere for an extended period of time it would be here.
Thank you so much to those of you who have sent us cards and gifts. I wish I could personally thank each and every one of you. There are just so many. It is those little things sometimes that help me get through the day. There are days when I get back to the Ronald McDonald House and am feeling defeated and very worn, and then I will check my mailbox and I will have a letter, or a package waiting for me. I can't wait to tell the girls all about these things when they are older and can understand how many people were praying for them, and encouarging their parents. Without all of the support I don't know if Riley and I would be able to hang in there. This journey is so trying, but also so rewarding. We really pray that each one of you are blessed 10xs over what you have blessed us with.
Riley, myself, and the girls, want to wish each and every one of you a Blessed and Wonderful Christmas and a very happy New Year.
So, it's 2am and here I sit pumping away because I can't sleep, and if I can't sleep I might as well pump. Sorry if that's too much information but I am just being real. Nights like this make me realize what a toll this whole journey is taking on me.
I am completely and 100% exhausted and yet I can't sleep. It's been like this for probably about a week now. Part of it I'm sure is because Riley had to go back home last weekend, and I am in that horrible transition of getting used to not having him next to me as I fall asleep. But the other part I know is stress and just being anxious.
Growing up I always heard the verse Philippians 4:6-7 which says "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."
I feel like I have always known this verse, it is one that I can recite off the top of my head and will be forever remembered. But as I sit here tonight I realize how incredibly hard it is to actually follow what this verse says. Just the first few words, Do not be anxious about anything..I kind of feel like yelling...."Yea right, you expect me to not be anxious about anything when I have conjoined twins, children who are so different than the rest of the world and could potentially have problems for the rest of their lives! HA" It is so so hard to remind myself that God is in control and always has been and always will be. Even when it is 2am and I sit here in the dark alone typing out all my feelings in a blog. He will give me peace that passes all understanding, and he does every day. It is in these times where I feel doubt creep in that the peace He gives me seems to fade, and I just need to remind myself that He has bigger and better plans than I can ever imagine. He really does.
So many times people will comment, or text, or tell me that I am so brave and have such grace going through all this. And I so appreciate it, but that is not because of me by any means. Nights like these remind me how fragile I am and how weak. And that is only by God's strength that I get up the next day and move forward. He has given my husband and I two beautiful little lives that we are responsible for. He has given us a HUGE task. And to be able to fulfill that task I need not to be anxious but know that God will give me supernatural peace.
I decided to look this verse up in a version that I love to read sometimes just because it kind of lays things out in a different way and sometimes speaks to me in a different light. The message version says
"Don’t fret or worry. Instead of worrying, pray. Let petitions and praises shape your worries into prayers, letting God know your concerns. Before you know it, a sense of God’s wholeness, everything coming together for good, will come and settle you down. It’s wonderful what happens when Christ displaces worry at the center of your life."
The way that this verse is worded literally brings me to tears. "instead of worrying pray, let petitions and praises shape you worries into prayer" and to know that God's wholeness will bring everything together for good.
I hope and pray that someone out there who is reading this post will be encouraged. That it will somehow bring you back from the ledge that you are standing on. I myself feel like I was standing on a ledge and have been brought back even if it was just a few steps just through reading that verse. Whatever you might be facing remember "it's wonderful what happens when Christ displaces the worry at the center of your life" All you need to do is have a little faith that God is in the midst and knows what He's doing. I am by no means perfect and I so struggle with this. But maybe by telling all of you these things, I will be able to do them better myself.
Thank you again for all of your prayers...they are more important to us than I think you will ever know.
I must apologize, getting a moment where I can sit down and blog is becoming harder and harder. The girls are getting bigger and requiring much more attention during the day, and then when I am back at the house at night I am exhausted and usually have laundry to do and things to clean and bills to pay. So life is just busy.
The past few weeks have been a complete and total whirlwind. The girls are doing well all things considered. We have had a few hiccups along the road but when I say these girls are amazing little miracles I so mean it. What they have already endured is more than I think I could ever handle. I am so proud to be their mommy. They surprise me every single day and I am so blessed because of it!
Riley unfortunately had to go back home this past weekend, he has been here since the girls had their surgery. It was sooooo nice to have him around but....duty call unfortunately. It was so hard for him to go now that the girls are interacting more and more with every day. I know he misses them terribly and we of course miss him as well.
The girls started smiling just this past week and it overwhelms me with joy. To see their eyes sparkle and their mouth turn into a huge grin just melts my heart completely. When I look at them I feel like I am looking at my heart in human form. They are just so perfect and Riley and I could never ask for more. They are so sweet tempered as well. Don't get me wrong, they have their "diva" moments. But overall they are pretty mellow babies. Compared to some of the other babies that have been our neighbors over the past few months, they are mellow. I am so excited for the day when they are separate and are able to sit up, hang out in the mama-roo, go for a stroller ride, and so much more. Right now they are basically confined to the bed because of the way the separation process has been going and because of the way that they are conjoined they aren't able to be in many other positions other than laying.
We still have another month or two before anything new really happens. This is a long grueling process, so please keep us in your prayers. I am getting to the point where I am really starting to miss home. It comes in waves, but being here at the Ronald McDonald house there is a natural progression of things I am finding. Every 6 weeks or so everything changes at the house. A bunch of people will get discharged and a new group of people will come in. It's hard to keep building relationships that all of a sudden leave. You in one sense are so incredibly happy for them, but in the other sense are sad because you are back to being by yourself. So please pray for all the transitions. This whole experience has really grown and changed me. I have become more outgoing, more confident, and stronger overall. As tough as it is going into the Holiday season and being away from family and friends, I know that we are incredibly blessed to be where we are and to have so many people in our corner. We are so grateful for each and every person who is following our story. Please know that all the cards and gifts we have received have brightened some pretty dark days.
I know I have been quiet lately but that doesn't mean things aren't still moving forward. We are completely in the trenches of this journey so please pray for us. Your prayers have really made all the difference with how things have gone. We are so grateful for them. Our girls still have a ways to go, but we know with all of you standing with us in prayer that our girls will come out on top!!!
In the past few days I have been singing a specific song to the girls and maybe it will encourage someone else who is is a tough spot right now as well.....
He who began a good work in you
He who began a good work in you
Will be faithful to complete it
He'll be faithful to complete it
He who started the work
Will be faithful to complete it in you
If the struggle you're facing
Is slowly replacing
Your hope with despair
Or the process is long
And you're losing your song
In the night
You can be sure
That the Lord has His hand on you
Safe and secure
He will never abandon you
You are His treasure
And He finds His pleasure in you
Also I have started registries for the girls since I have been asked several times how people can help, this is just the easiest thing to do. Please by no means feel pressured at all. It is just so I don't have to get asked all the time. We are registered at Buy Buy Baby and Target.
My 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!