Some hard, hard stuff coming at us, and Scott and I aren’t feeling at all ready for this. We’ve known for over four years that it was coming, but now that it’s here, we are not feeling strong enough or brave enough to face it.
When our first daughter was eighteen months old, we discovered we had another little one growing in my tummy. We knew we wanted more kids, but this was a surprise and sooner than we were planning, and I remember, as silly as it sounds now, worrying about how I would stretch the deep, passionate love I felt for this first daughter enough to fully embrace a second child. As she grew inside of me, these doubts faded, of course, and we loved her just as deeply and just as passionately.
This was true again for numbers three and four, and it was also just as true for numbers eight, fifteen, and twenty-three who came to us along a different path—adoption.
I am still surprised by the number of people who don’t really fully grasp that all twenty-three are ours just as much as the first four children are. We hear comments like, “It’s so nice of you to buy bikes for all of those kids,” or “You’re so wonderful to take those kids in and give them a home.” No one would commend us for giving our biological children a home, or bikes. That’s what parents do for their children, no matter how many they happen to have. I really do understand why this is hard for some people to comprehend, and it doesn’t make me mad, or even hurt my feelings.
But I do want the world to know that they are all fully and completely our children, just as if they had come through my own womb.
God gave each of them the name “Rosenow” before Scott and I were even born, and our hearts beat in sync with each one of theirs just as much as with our biological children’s hearts.
Lilyan falls at number twenty-one if we’re listing the children by the order in which they came home forever, and she also just happens to be number twenty-one if they are listed by chronological age.
But she isn’t just a number. She is our cherished and so-dearly-loved daughter, and she is her own person.
Strong. Independent. Smart. Sassy. Beautiful. Funny. And living life fully and courageously in spite of her very serious congenital disabilities.
Lilyan was born with several severe deformities in her body that include scoliosis, lordosis, kyphosis, caudal regression syndrome/sacral agenesis, and spina bifida. I won’t go into what all of these words mean, but combined, they have left her with total incontinence, legs that are fixed in a bent “Buddha” position, a greatly exaggerated rib cage, complete paralysis from the waist down, and crowded organs that are squished into her too-small and terribly misshapen trunk.
Many doctors checked her out after we brought her home in June of 2014, and they all made it clear that she was facing at least one very major surgery at some point in order to, hopefully, prevent an early death. She was doing well at the time, and because of the risks associated with the surgery itself, they stressed that it was best to wait as long as possible before doing the surgery. I shared much about this in my last blog post in March 2018. I won’t repeat all of those details here, but you can see pictures showing Lilyan’s trunk deformities more clearly, as well as read details about this surgery by clicking here to go to that post. Just scroll about half-way through it to get to the part about Lilyan.
The surgery is now only three and a half weeks away. It’s time. Over the past couple of weeks, Scott and I have been to several in-depth consultations with each of the surgeons who will be part of the team operating on our baby all day on October 29. They have each focused on making sure we understand how huge this is, and all of the risks involved. They have told us that the risk of death, during surgery and immediately post-op, is real. Relatively small, but real.
When we asked what the cause of death could be in such a case, they explained that it would be either blood loss (they already know there will be transfusion for sure, just not sure how much yet), respiratory failure, or sudden and uncontrolled hypertension that can be caused when the neurosurgeon clips her spinal cord (one of the necessary pieces).
Our orthopedic surgeon, the lead for the team, in trying to express the “hugeness” of it all and the impact it will have on her said, “The trauma to her body and systems will be the equivalent of her being hit by a bus, and then rolled back over again.”
This is our baby. How does a parent hand over a child, knowing that this is what is coming? And how do we face the possibility of losing her?
We know that, without this surgery, early death is a certainty for our baby girl. And we know that waiting too long to do it carries huge risks, as well. If we wait till she has serious skin breakdown (which will happen), the risk of bone infection will be very high (associated with the skin breakdown); if she develops a bone infection, it can take years to heal—if they can even get it to heal at all—and they can’t do the surgery while there is any hint of bone infection. And if they wait till she begins to lose pulmonary function (which will also happen in time), then her system will almost certainly be too compromised for her to withstand the surgery. It would then just be a downward spiral for her while we watched her die. So, the beginning of the skin breakdown that we and her doctor saw developing in March made it clear that we can’t wait any longer.
We have no choice but to move forward with this. Lilyan deserves this chance at life.
But we are afraid. We are praying that God will keep our scared hearts looking to Him and His perfect plans and that, in these days leading up to the surgery, He will enable us to interact with Lilyan and the other children in ways that communicate tranquility and trust in this Father who brought all of our babies to us and loves us beyond comprehension—an Author who writes wonderful stories, even if they have dark parts in them.
In spite of the seriousness of this surgery, if all goes well, her hospital stay will be shorter than some of the stays with other of our children. They are predicting about a week. We will need to stay as focused as possible on Lilyan and her recovery during that time, so we are praying for a week’s worth of meals for our kids all here back at home. A dear friend is coordinating this for us, and I will write again once I have a link for that, in case anyone wants to sign up to help in this way.
This has already gotten too long, so I’ll try to wrap it up quickly. I haven’t updated in many months, so I’ll give a very short synopsis of the past few months.
- Our summer was calmer than we had feared, but not as calm as we had hoped. With all of the cancer and surgeries and medical challenges we juggled over the past three years, many routine things had fallen way behind. And it takes lots of time to catch up on dental cleanings, eye exams, and routine physicals for so many people. We spent much of our time this summer checking those things off our list.
- After learning more details about the major bladder surgery Jaden was supposed to have had at the end of August, we determined that the chances were too great that this surgery would cause decreased quality of life for Jaden, rather than an increased quality of life as it was supposed to do. So we chose not to go through with that surgery. Sadly, this means that there is now, at this time, no hope for him to get out of diapers. For an almost-nine-year-old boy who functions at a “normal” cognitive level, this was a huge emotional blow. Jaden is still working through all of this, and we would cherish your prayers as we try to help him. God knows His plans and what kinds of things are down the road for all of our babies. As our second-oldest son reminded us, the incredible “bionic” prosthetic hand he has now, was only science fiction when he was Jaden’s age. We will trust God, and wait for better options.
- I’ve been fighting with Achilles tendonitis for about nine months now and finally had to figure out how to fit regular PT sessions into my life (in spite of eighty-two appointments over the past five weeks). I would love for this to heal so I can be back to full function before the holiday season.
- Lastly, many months ago, Scott and I were given a gift to slip away again for a few days to our favorite little cabin in Hocking Hills. Back when that gift arrived, we booked that cabin for next week, praying nothing would prevent us from going. We are supposed to leave on October 15, and we are praying so much that things will go smoothly for the kids back here at home and that our minds and hearts will be able to shut out all that is ahead with Lilyan long enough for us to just rest and connect with each other for those few days. We are feeling very much in need of this time before we go into surgery and the months-long post-op recovery ahead of us. If you should feel led to pray for that along with us, we would be so grateful.
We’ll try to do a better job of keeping you updated in the coming weeks. Thank you so much for all of the love and the prayers.