Lisa Bonnema

Mom. Writer. Speaker.

Dandelions & Tulips

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Saturdays are my favorite day of the week, especially in the spring and the summer, when the weather gets warm. Jeff is (usually) home and takes the girls outside to work with him so I can have a little “me” time, which usually involves toilet scrubbing and laundry. But nonetheless, I get a little break.

However, it isn’t long before I hear a tap at the door or several urgent doorbell ringings. As I open the door, I am greeted by two little girls with hands full of dandelions and faces full of smiles. “Here, Mommy, for you.”

I love that. And I don’t think it will ever get old. Ever.

A few weeks ago, we had a Saturday that followed that exact series of events. As I relished the moment, I filled a plastic cup with water, gently placed my gifts inside, set it on the kitchen counter, and happily went back to cleaning the bathroom.

A quick water break led me back to the kitchen, where I noticed that the plastic dandelion cup was actually sitting next to a glass vase full of purple tulips Emma and I bought a few days before in honor of Brooklyn. We both agreed she would like them, so we “splurged.”

As I saw the contrast of those two vases, my human nature took over and I started to go there…

Brooklyn will probably never be able to run around the yard on a Saturday morning with her sisters.
She will have to watch them from afar.
And she will never bring me bouquets of dandelions…at least not without a lot of physical effort.

When these types of moments come, I have learned to literally look Up. And just like every time I choose to that, God revealed something amazing to me. This time, He drew my eyes back to the tulips. The beautiful, beautiful tulips.

How in the world did I miss their beauty?

And then He fixed my eyes on both flowers:

The dandelions…bright like the sun, full of life, carefree, and a bit wild.

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The tulips…purple like Royalty, peaceful, carefully constructed, and a bit more fragile.

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Both created by God. Both beautiful in their own way. Both perfect in His image.

My mind was then drawn to a short essay someone sent my Mom days after we found out about Brooklyn:

WELCOME TO HOLLAND
by Emily Perl Kingsley
c1987

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Interestingly enough, going to Italy has always been a dream of mine, and Jeff and I were fortunate enough to literally go there a few years ago. It lived up to every expectation I had, and we absolutely loved it there.

But I know we will love “Holland” as well, and I’m pretty sure it will surpass all of our expectations.

After all, I hear they have lots and lots of tulips there.

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And Away We Go…

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Appointments.

That is basically where we are at right now. Lots and lots of appointments. I was putting them off, I admit, because that meant time away from the girls and really, I wasn’t ready for that yet. I know that will be a big part of our life from here on out…but it is honestly a part I dread.

Funny how it’s the little things that can get to you. I’ve always been that way though. I can handle the “big things” pretty easily. Maybe because I know only God can handle them, but it’s the little things that I struggle with. It’s the day-to-day stuff that makes me feel like I am lacking and that I am somehow failing. And letting the girls down is now a looming fear that creeps in way too often.

Many of you know that Emma was with us the night that we found out about Brookyln’s Spina Bifida. Not the best situation, but in many ways, it helped relieve us of the decision as to what to tell her, when to tell her, etc. She knew from the start, whether we liked it or not.

Well, on the way home that night, I was trying my hardest to figure out the right thing to say to my little girl as I was still trying to comprehend it all myself. I told her that Brooklyn might have “sick legs.” I told her that even though she might not be able to do all the things we can do, she is going to be a perfect addition to our family. She will teach us about God in ways we never imagined. She will be special, and she will be a very important part of our family.

After my pep talk, I was feeling pretty good about my words and the fact that I was doing a good job of hiding my breaking heart, when from the backseat came the smallest little voice…

“Mom, does that mean Brooklyn will be more important than me and Kendall?”

Silence.

My worst fear…spoken by a 4 year old that had more wisdom and understanding than I ever imagined. My worst fear…before I even knew it myself.

As I desperately tried to backtrack — telling Emma we are all made special by God in different ways and all play an important part in our family — I felt a horrible sense of failure.

Even as I become more informed about all of the challenges we have ahead of us, it is still my biggest fear: Taking care of all three of my children in a way that makes them all feel loved, special, and important. Making Emma and Kendall feel loved even though Brooklyn will be getting lots of attention. Making Brooklyn feel loved even though she can’t do all the things Emma and Kendall will be able to do. Making them understand that they will each make me proud in different ways. And that I love them all equally.

I know this is a struggle every mother with more than one child has. But somehow it has now been magnified…by like 100. Maybe it shouldn’t be and maybe I’m the one magnifying it, but I would be lying if I didn’t say it literally makes my heart ache.

The comfort I have is believing that God will also use this experience to make Emma and Kendall the people He intended them to be… compassionate, caring, accepting. We want more for our children, and I think this does give my girls an opportunity to experience life in a more challenging, but more fulfilling way. I just pray God will help me guide them in this direction. That the stress won’t take over and that the moments we are together make up for the time lost. For the confusion.

So the decisions are being made. Assuming all goes as planned at all of our appointments next week, we will deliver at Northwestern, and Brooklyn will get her surgeries at Children’s Memorial. I will have to have a C-section, which means there will be a few days when I sit in a hospital room by myself while Jeff waits in another hospital for our baby to come out of surgery and my other babies are at home being cared for by someone other than their Mommy.

These are days I have to choose not to think about. Because the thought of those days tear. me. to. p i e c e s.

I know this will not be easy. But God never said it would be easy.

As my bible study lesson so perfectly revealed to me this week…

“For it has been granted to you that for the sake of Christ you should not only believe in him but also suffer for his sake…” (Phillipians 1:29)

If my God can die on a cross for me so that I can spend a perfect eternity with my children, the least I can do is use our short period of worldly suffering for His Glory.

And I pray with all of my heart that all three of my girls learn to do the same.

When Doubt Creeps In

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Today was a bad day.

And while I know what you are thinking, the day was really like any other bad Mommy day. It was a day of way too much crying, way too much whining, way too much yelling, and way too many Reese’s peanut butter cups (don’t you dare ask how many…)

It was a day when bedtime couldn’t come soon enough and once it did, the Mommy regrets came, along with the urge to run into their bedrooms to hug and apologize for all the wrong things I did.

But instead of the “at least there is tomorrow” thoughts that usually provide some peace, that is when it hit me. And this bad day only got worse.

The questions and fears and tears came out of nowhere, and they hit me hard. Really hard.

If I can’t handle a day like today, how can I handle a “bad” day once the baby comes?
If I have no patience now, how will I possibly have the patience for the challenges ahead?
How can I provide the emotional support for three precious little girls when I am such a mess?
How can I do this?
Clearly, I can’t do this.
There is no way I can do this.
God, you didn’t pick the right woman.

The doubts just kept coming, and the cries to God were loud and painful.

Oh God, I just want her to be okay. I want this all to just be okay.

After a call to Jeff, I felt a little better, but my heart was extremely heavy. And then I was led to a copy of the sermon our pastor gave 2 weeks ago that I’d been meaning to read, and here is the verse that I saw:

“Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; and perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.” (Romans 5: 3-5)

The verse instantly provided peace, but as I reflected on it a little more (while cleaning toilets no less), it occurred to me…

This is not about who I am now, but who I will become from this experience. In other words, God will use this experience to make me the Mom I need to be to this baby…and even the Mom I need to be for Emma and Kendall. He will give me the perseverance and the character. And the hope that will make me turn to him when I feel I’m not enough.

You see, it isn’t about what I can’t do. It’s about what God can do.

Since we started our journey, a lot of people have told us that God “chose” me and Jeff to be this baby’s parents. That He only picks special people to take care of such a special child. And I’ll admit, those words have provided a lot of peace and reassurance. But in some ways, they’ve also provided a little bit of pressure. And for those of you that know me, I don’t take pressure lightly.

But now, after tonight, I’m not so sure I believe those words. I think God could use any one of us to do anything He needs us to do. The point is not that Jeff and I are “special” or even the “right” people for this job. The point is that His power is so great that He can use even us to do His work. We just have to allow Him to work through us.

That knowledge gives an enormous amount of comfort and peace to my soul. It renews my heart and encourages my spirit.

“I can do everything through him who gives me strength.” (Philippians 4:13)

As God forms this precious life inside of me, He is also forming me. What a blessing. What a comfort. What a God.

The Beginning of Our Journey

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I know the last few posts haven’t been very informational, but I do intend to make this a place where you can find out the latest on our little one. However, I have a feeling I will also use this as a place to share my emotions, so I’ll try and label future baby updates clearly in case you want to skip all the mushy stuff! 😉

I realize some of you might not actually know what is truly going on with our baby, so I will start at the beginning and do my best to be concise. As you can imagine, I could write 100 posts on the last 13 days, but I’ll stick to the key points this time. Thoughts and reflections will come later…trust me, they are brewing.

Almost 2 weeks ago, we went for our routine 18-20 week ultrasound. We decided to find out the sex of the baby for the first time (I finally gave in), so we decided to bring Emma, our 4 year old daughter, with us (more on that later).

However, the sex of the baby became secondary once we learned that our baby has Myelomeningocele, the most severe form of Spina Bifida. Basically, during the early stages of development, our baby’s spinal cord did not form correctly and actually failed to properly close. This means part of her spinal cord is literally sticking out of her back, leaving nerves exposed. Although this doesn’t always lead to permanent nerve damage, it looks like it has in our baby’s case.

The doctor was unable to visualize any movement in either of our baby’s legs from the knee down. In other words, she wasn’t kicking, and we couldn’t get her to change position during the ultrasound. In fact, we have a photo of her with her leg sticking straight up in front of her…an image forever planted in my heart. This may indicate some level of permanent paralysis in her legs. Both of her feet are also clubbed, a secondary effect from the Spina Bifida.

Because she only weighed 7 ounces during the ultrasound and wouldn’t change position, the doctor was unable to see just how much of her spinal cord has been affected. This is something we hope to find out at our next ultrasound, which is scheduled for the beginning of April.

The most concerning information was that our baby also has mild Hydrocephalus, which is unwanted fluid in her brain. This is the result of her exposed spinal cord pulling down on her brain (called Arnold-Chiari Malformation) and obstructing the correct flow of brain fluid. This is very common in Spina Bifida. However, as the spinal cord continues to pull, there is a chance that this fluid can continue to build up and put pressure on her brain. If that happens, there is the risk of mental challenges as well as physical challenges. Right now, our baby’s fluid levels aren’t overly concerning, but the next ultrasound will tell us if it is stable or if it is increasing.

So what does all of this mean? Well, it means that our baby will need surgery after she is born to cover her spinal cord. She may also need to have a shunt placed in her head to drain out the excess fluid. These are often permanent. She will also require surgery at some point to correct her clubbed feet.

As far as what it means long term, we just don’t know. There is a chance more nerve damage will occur as our baby grows these next 19 weeks, but we are hopeful that God will prevent that from happening. We do not know if our baby will walk on her own some day, but, again, we our trusting God’s plan for her life and will patiently see what He decides.

All of this was totally unexpected. Both of Emma and Kendall are active, healthy little girls. This does not run in our family. Only 1 in 1000 babies are born with this condition…1 in 1000. That number still blows my mind.

None of this is easy. Writing this isn’t easy, but God is putting it my heart to share our baby’s story so that people will pray for her…and boy are they praying! We have been overwhelmed at the amount of support and love we have received these last few weeks. God is so good! I can’t tell you what an honor it is to carry a life in my womb that is already glorifying the Lord so much. Although I would never choose this for our baby or our family, in many ways, I actually feel blessed. I can’t wait to see what God has in store for our precious angel. We are celebrating her life, and I am falling more and more in love with her every day.

Yes, the journey ahead is a long one. We will have many big decisions to make and a whole lot of learning to do. But I know now more than ever that God is with us every step of the way. Some days He will guide us, while others He will carry us. But He is there and always will be. We can feel it.