Surprised and Thankful

Before Todd and I became a couple, I had a crush on him for a long time. I journaled and prayed excessively about it. If you were to read my diary you’d find a lot of details about our interactions and the emotional ups and down’s of hoping that I could be with him someday. (If you like a good sappy love story you can read it here.) But after we got together, you won’t find much in my journal. It’s like the movie that ends when the lovers finally get together. I was so busy enjoying our relationship and eventually the whirlwind of planning our wedding and our “ever after” that I didn’t find the time to write about what actually happened in the months following our courtship.

By Holli with an I

I feel a bit like this about Vivien and this blog. Before she came and while she was in the hospital, I had more moments to write, but now that she is actually home, those moments are few and far between. I know that I have been remiss in updating but it is because I am much too busy taking a thousand pictures of her, giving her meds, taking her to doctors appointments, pumping endless ounces of milk, cleaning her g-tube site, giving her lots of kisses – and trying to also keep up with the other 4 kids, not to mention trying to find time for the aforesaid crush (who is still my crush btw). And that crush is also doing all of these things (except pumping ;-)).

In fact, because of the time he spent with her in the hospital when the kids and I were sick, Todd has bonded with Vivien in a very special way. Most of our babies were “mine” for the first year of their life, simply because of nursing and knowing how to meet their needs. While I still love her dearly, it is different with Vivien as Todd can do so much more for her. I am not nursing and he has the medical expertise to know her needs, so he does much of her day to day care, while I manage the other four. We both know and do what needs to be done (and I do it all when he goes to work for 24 hrs of course) but it is beautiful to watch him care for her, talk with her, tease her and love her well.

by Holli with an I

When Todd and I finish the day and get to spend a few moments after 10:00pm chatting, we usually talk about how crazy things are. It feels like the moment our feet hit the floor until we tumble into bed at night there is hardly time to catch our breath. I told him the other day that when I pray and ask God about my schedule and what needs to be done next (because sometimes I honestly don’t know which is the most urgent) I feel like I am asking Him, “what should I neglect the most?” rather than what should I do. For example we are going through 3 or 4 laundry loads a day.  This makes a one day a week “laundry day” impossible as every day is laundry day. Thankfully the kids are wonderful helpers, sorting and putting it all away. But despite the work, we are settling into a new routine, figuring out what our expectations have to be (low), how much time everything takes (longer) and what needs to happen next throughout the day to keep Vivien well cared for and maintain some sort of sanity at home.

Simply not being pregnant is reason enough for me to celebrate. Having my energy back and not feeling like a beached whale (even though I have 25-35lbs I’d still like to lose) makes me want to throw a party. Considering that 7 months the longest I’ve gone in the last 11 years or without being pregnant or nursing, I do have to say, caring for Vivien outside of my body (despite the pumping) rather than inside is my preference.

Our life looks very different from what it did before although there are a few things that remain the same. I remember feeling like a full day at home was a luxury that I didn’t get very often. Now even heading out to the store feels like a big adventure and a cause to wear jeans instead of sweats (so exciting!). I found one stretch recently where I didn’t leave the house for 10 days except to go to the ER because my back went out. This is another story in itself after finding myself on the floor one morning unable to get up and having to wait there for an hour until Todd got home. Thankfully a round of prednisone has me at about 90% and I only feel sore occasionally.

Last Saturday we took all the kids including Vivien to the Grandparents' for the afternoon to celebrate an early Thanksgiving. In looking down at all the bags and paraphernalia, it looked like we were going to stay for a week instead of an afternoon. Vivien comes with lots of accessories. Because she’s on a continuous feed she is always hooked up with her tube to her bag of food, whether on a pole or in a backpack. This makes walking up and downstairs rather hazardous as we navigate carrying her and the pole without falling on our face. We bring these among other things. You can imagine the time it takes to pack everything up.

Vivien and her Accessories

This is why we never call, we never write, and we don’t get out much. At this point Todd and I are her full time caregivers and so if I want to do something outside the house or he does, we pretty much do it separately. We are thankful for Todd’s Mom who has cared for her for a couple hours at a time recently. We are still learning what works. Occasionally we will take her or the kids out all together, but it is rare both because of the work it takes to pack everything up, as well as the need to be careful of what we expose her to. Our cardiologist is having conversations with us about the possibility of heart surgery, perhaps in the next 6 months or so, and keeping her from any kind of infection is vital.

Even though we don’t get out much, we have a very busy household, generally with two or three things happening a day between music lessons, school activities different family members, friends, or health care workers coming and going. We have been trying to schedule one thing a day but it’s pretty much impossible. Truly we have experienced a lifestyle adjustment and continue to figure out our new normal. I have had to reject guilt as I often feel like I am neglecting relationships. Todd keeps reminding me that it’s ok. I have not had one person shame me for not keeping up with them, or spending time with them, but there is still that nagging feeling that I am making someone feel bad for not reaching out like I should, especially after being so actively involved at church and in friendships. If you feel neglected, please know that I love you, but that this is a season where my friendships look different. In addition to this, Jesus reminds me that I am not anyone’s Savior, He is and He can provide the needed friendships and love for those that I miss. I have truly been ministered to instead of ministering in the last few months and I am so grateful for the amazing support I have received.

by Soulumination

But what has honestly surprised me the most is how content and at peace I feel most of the time about my lifestyle. I feel like so much of what I “feared” about the work it would take to have a child with special needs and the loss of freedom we would experience has actually come true – but I’m ok with it. In fact, I’m pretty happy in general. I am surprised by how much I actually like my life. I feel like I love my kids and husband and home life more that before, if that is possible. I love the good chats I have with my two oldest, who are growing and maturing. I love my shopping buddy Lucie who loves “girls day” when we go grocery shopping together. I could listen to Iva talk all.day.long in her incredibly adorable two year old way and I just want to squeeze her all the time. And sometimes it is hard to take my eyes off Vivien. Her beauty and sweetness are breathtaking. She is complicated and we are always trying to figure her out (like her recent bout of not having a bowel movement for 6! days) but as Todd says, “she’s got cute down!”

by Holli with an I

Please don’t misunderstand me. I have my moments. There are times when I do feel a loss of freedom because there is. There are times when I feel stretched to the limit and out of control. There are moments like the first time I was alone with Vivien and the 4 kids and she spit up and was trying to clear her airway. As I was clutching her intently, waiting for a breath or cry to know she was ok, a little voice in the background said, “Iva has her diaper off and is getting poo all over the bathroom”. At that point I didn’t care I just wanted her to breathe. Eventually, everything turned out fine, but there are moments when there seem to be 5 urgent things that all have to happen at once and there is only one of me. But overall, I feel a peace with where my life is at. I am blessed with a husband who is home so much more than most, who does so much, and Grandparents who take the kids often. My mom still takes the oldest four for 24 hrs once a week. We have family and friends who have been incredibly generous with time and meals and anything we need. I know that this just a season and even if Vivien lives for 20 years (which would be amazing), I will not have toddlers forever and the kids will grow up and it will not be so crazy.

Again I want to be honest in this blog, and not just paint a rosy picture, but share about both the ups and downs of our life. Many say that having child with health issues is a strain on the marriage. Todd doesn’t mind me saying that we found we must be intentional in our love for each other. Though we’ve had our moments, we have worked through the conflict with Jesus help. There are times when we are both tired and exhausted and feel pushed to the limit. With the workload we both face it is easy to either feel pride or insecurity in what we are trying to accomplish. We came to a point where we spoke candidly about each other’s needs and had to really seek God’s wisdom for help in strategizing who does what at home. We are learning to give each other more grace, believe the best and be clearer about our job descriptions. We have different gifts and strengths. Sometimes we may not be strong or gifted in an area, but we are called to do it anyway. Other times we can rearrange priorities and schedules and figure out how we can both do what we love and are good at. For instance, I take the night shift, enabling Todd to get rest, but he takes the morning shift (when he is home), so that I can sleep a little longer and make up for what I lost in the night. This is just one example, but we are at a point where we are seeing each other as on the same team working hard for our family and pulling the load together, side by side. The rough times have been good for our marriage. We are getting stronger and more intentional in our love, showing grace toward each other and more at peace.

by Soulumination

I know that this peace has to be from Jesus because everything that I feared and thought would be too hard (especially regarding the workload) has happened. But it’s not too hard and I am surprised and amazed by the contentment I have.  My dear mother in law reminded me that one of the reasons I am experiencing this is because there are so many people praying for us. I feel those prayers from all of you. The medical things that have to be done for Vivien are becoming more and more routine instead of big scary obstacles. It reminds me of a Scripture that God gave me when He was asking me to trust Him and give Todd to Him before we were together. I thought what He was asking me to do was too hard. But He said,"For this commandment which I command you today is not too difficult for you, nor is it out of reach."  (Deut 30:11) He gave me grace then.   Now He is giving me grace to actually emotionally enjoy this rather intense season. It’s not too difficult for me. What I thought might feel like drudgery - doesn't! I am so grateful for all your prayers, and for Jesus grace.

I recently heard a sermon by Judah Smith about how we try to control our life and organize everything perfectly and avoid stress and get what we want. The reason we do this is because we are trying to find peace and happiness. But when we give control to Jesus, put it in His hands and experience who He is – whether our circumstances change or not – we find a peace and joy from Him that doesn't make logical sense - which is what we were actually looking for in the first place. (And the peace of God, which surpasses all understanding will guard your hearts and your minds in Christ Jesus. Phil 4:7) Circumstances may or may not change but He gives us a grace to go through them with joy. I wrote more about this here, here and here)

So what is in store for Vivien next? We continue to try to increase her feedings to help her to grow so that eventually we can consider surgery. She is now totally on breast milk with a little fortification and we rejoice in that. We weren't sure if it was going to happen. Recently she went through plateau in her growth but as soon as we increased her volume as well as her calories with fortification, she went through a growth spurt. In the last week she has gained a whopping (for her) average of almost an ounce a day. She is now 6 lbs 7.5 oz.

We’ve had several friends’ volunteer to do photo shoots of her and our family and have been blessed by their amazing handiwork as you will see throughout this the next few blog posts.

She does have quite a bit of hearing loss and was scheduled to be fitted for a bone conducting hearing aid, but they have since told us that she needs to wait until she is 6 months old. Apparently the headband she needs to wear could cause her skull to not grow properly if she is fitted too early. We are looking forward to her response when she does get to hear the voices of her family more clearly for the first time.

She still sleeps a lot and has a few fussy times, but is generally able to be comforted and is a content girl, as long as she has some good wake and sleep times during the day. We are trying to be intentional about holding her since I am not nursing, but often she prefers her little pink bouncy chair and gazes at the antics of all the children around her from her little throne.

We are so grateful for the gift that Jesus has given us of every day with her and thank you again for all your prayers and support.